1 00:00:05,520 --> 00:00:11,160 >>WELCOME TO DAY 1 OF 3 2 00:00:11,160 --> 00:00:15,440 SERVICES AND SUPPORTS FOR 3 00:00:15,440 --> 00:00:16,760 DEMENTIA AND 4 00:00:16,760 --> 00:00:18,680 CAREGIVERS AND SOME IS HOSTED BY 5 00:00:18,680 --> 00:00:20,400 THE NATIONAL INSTITUTE ON AGING, 6 00:00:20,400 --> 00:00:22,600 NATIONAL INSTITUTES OF HEALTH. 7 00:00:22,600 --> 00:00:25,440 MY NAME IS JULIE AND I'LL BEEN 8 00:00:25,440 --> 00:00:30,560 MY PRIVILEGE TO SERVE AS 9 00:00:30,560 --> 00:00:49,760 CO-CHAIR WITH OVER THE NEXT THE 10 00:00:49,760 --> 00:00:51,880 OVER ARCHING GOAL OF THE SUMMIT 11 00:00:51,880 --> 00:00:53,120 IS TO PROVIDE COORDINATED 12 00:00:53,120 --> 00:00:54,360 PLANNING EFFORTS IN RESPONSE TO 13 00:00:54,360 --> 00:00:56,880 THE NATIONAL PLAN TO ADDRESS 14 00:00:56,880 --> 00:00:57,720 ALZHEIMER'S DISEASE. 15 00:00:57,720 --> 00:00:59,840 THE GOALS ARE ACCOMPLISHED BY 16 00:00:59,840 --> 00:01:01,320 PROVIDING AN OPPORTUNITY FOR 17 00:01:01,320 --> 00:01:02,360 RESEARCHERS, INDIVIDUALS WITH 18 00:01:02,360 --> 00:01:04,440 LIVED EXPERIENCE AND THEIR CARE 19 00:01:04,440 --> 00:01:06,720 PARTNERS AND OTHER STAKEHOLDERS 20 00:01:06,720 --> 00:01:09,560 ACROSS DIVERSE SECTORS TO SHARE 21 00:01:09,560 --> 00:01:10,600 PERSPECTIVES ABOUT THE SCIENCE. 22 00:01:10,600 --> 00:01:11,800 AND IN THE COURSE OF THE 23 00:01:11,800 --> 00:01:14,520 DIALOGUE AND INPUT THE GROUP 24 00:01:14,520 --> 00:01:15,720 SUPPORTS THE GOALS BY 25 00:01:15,720 --> 00:01:17,120 SUMMARIZING THE STATE OF THE 26 00:01:17,120 --> 00:01:18,920 SCIENCE SINCE THE 2020 SUMMIT 27 00:01:18,920 --> 00:01:20,360 AND IDENTIFYING HIGH PRIORITY 28 00:01:20,360 --> 00:01:22,960 RESEARCH GAPS AND OPPORTUNITIES. 29 00:01:22,960 --> 00:01:24,040 THAT CAN INFORM EFFORTS OF 30 00:01:24,040 --> 00:01:25,400 FEDERAL AGENCIES, FOUNDATIONS 31 00:01:25,400 --> 00:01:34,480 AND OTHER ENTITIES. 32 00:01:34,480 --> 00:01:39,000 THE SUMMIT BENEFITS FROM INPUT, 33 00:01:39,000 --> 00:01:40,640 EXPERTISE OF OUR STEERING 34 00:01:40,640 --> 00:01:42,560 COMMITTEE AND PUBLIC INPUT AND 35 00:01:42,560 --> 00:01:43,880 PANELISTS AND TWO IMPORTANT 36 00:01:43,880 --> 00:01:45,000 PANELS THE LIVED EXPERIENCE 37 00:01:45,000 --> 00:01:50,160 PANEL AND STAKEHOLDER ENGAGEMENT 38 00:01:50,160 --> 00:01:51,400 PANEL. 39 00:01:51,400 --> 00:01:52,480 FINALLY THROUGH AUDIENCE 40 00:01:52,480 --> 00:01:57,960 QUESTION AND ANSWER THROUGH THE 41 00:01:57,960 --> 00:01:58,920 SUMMIT EVENT. 42 00:01:58,920 --> 00:02:00,480 THE SESSIONS ARE MADE POSSIBLE 43 00:02:00,480 --> 00:02:02,240 BY OUR STEERING COMMITTEE WHO 44 00:02:02,240 --> 00:02:03,560 SHARED THEIR TIME AND EXPERTISE. 45 00:02:03,560 --> 00:02:05,080 WE'LL INTRODUCE YOU TO EACH OVER 46 00:02:05,080 --> 00:02:07,840 THE COURSE OF THE SUMMIT. 47 00:02:07,840 --> 00:02:09,640 AT THIS TAME WE WANT TO EXPRESS 48 00:02:09,640 --> 00:02:13,240 OUR GRATITUDE TO HELEN WHO ED 49 00:02:13,240 --> 00:02:15,480 IMPORTANT INPUT AND CONTINUITY 50 00:02:15,480 --> 00:02:16,080 WITH OTHER EFFORTS. 51 00:02:16,080 --> 00:02:23,880 SHE LEADS THE IMPLEMENTATION OF 52 00:02:23,880 --> 00:02:27,760 THE NATIONAL ALZHEIMER'S 53 00:02:27,760 --> 00:02:29,240 KINDNESS AND THE PLAN TO ADDRESS 54 00:02:29,240 --> 00:02:30,840 ALZHEIMER'S DISEASE. 55 00:02:30,840 --> 00:02:34,200 NOW I TURN IT OVER TO CO-CHAIR 56 00:02:34,200 --> 00:02:35,360 ANDREA TO INTRODUCE THE PANELS 57 00:02:35,360 --> 00:02:37,880 AND UPCOMING SESSIONS AND THEMES 58 00:02:37,880 --> 00:02:39,520 AND FINALLY COVER LOGISTICS TO 59 00:02:39,520 --> 00:02:40,800 SUPPORT YOUR INVOLVEMENT DURING 60 00:02:40,800 --> 00:02:41,320 THE QUESTION AND ANSWER 61 00:02:41,320 --> 00:02:43,600 SEGMENTS. 62 00:02:43,600 --> 00:02:46,440 >>WELCOME, EVERYONE. 63 00:02:46,440 --> 00:02:47,280 WE'RE SO THRILLED YOU'RE HERE 64 00:02:47,280 --> 00:02:49,240 AND JOINING US FOR THE CARE AND 65 00:02:49,240 --> 00:02:52,680 CARE GIVING SUMMIT. 66 00:02:52,680 --> 00:02:54,920 WE'D LIKE TO THANK ALL THAT HAVE 67 00:02:54,920 --> 00:02:56,520 CONTRIBUTED TO OUR PANELS 68 00:02:56,520 --> 00:02:57,360 INCLUDING THE LIVED EXPERIENCE 69 00:02:57,360 --> 00:03:00,280 PANEL WHICH HAS BEEN LED BY 70 00:03:00,280 --> 00:03:07,400 MONICA MORENO AND GARY 71 00:03:07,400 --> 00:03:10,240 EPSTEIN-LUBOW WITH SUPPORT FROM 72 00:03:10,240 --> 00:03:12,520 CARRIE LANNIGAN. 73 00:03:12,520 --> 00:03:13,920 THEY CONTRIBUTED TIME, EXPERTISE 74 00:03:13,920 --> 00:03:15,880 AND SKILL IN CONVENING THE LIVED 75 00:03:15,880 --> 00:03:17,360 EXPERIENCE PANEL FACILITATING 76 00:03:17,360 --> 00:03:18,760 AND SUPPORTING THEIR 77 00:03:18,760 --> 00:03:20,880 CONTRIBUTIONS AND ENGAGEMENT 78 00:03:20,880 --> 00:03:22,880 THROUGHOUT THE SUMMIT PROCESS. 79 00:03:22,880 --> 00:03:25,240 WE ALSO WANT TO RECOGNIZE 80 00:03:25,240 --> 00:03:29,760 MEMBERS OF PANEL WHO GENEROUSLY 81 00:03:29,760 --> 00:03:31,200 SHARED THEIR LIVED EXPERIENCES 82 00:03:31,200 --> 00:03:33,320 THOSE LIVING WITH DEMENTIA OR 83 00:03:33,320 --> 00:03:35,120 BEING CAREGIVERS OR PARTNERS TO 84 00:03:35,120 --> 00:03:36,880 FAMILY MEMBERS OR FRIENDS LIVING 85 00:03:36,880 --> 00:03:39,160 WITH DEMENTIA. 86 00:03:39,160 --> 00:03:41,440 THEY PROVIDED IMPORTANT INSIGHT 87 00:03:41,440 --> 00:03:42,800 INTO WHAT MATTERS MOST, 88 00:03:42,800 --> 00:03:44,680 CHALLENGES AND APPROACH TO 89 00:03:44,680 --> 00:03:46,480 LIVING WELL WITH DEMENTIA. 90 00:03:46,480 --> 00:03:48,400 CHALLENGES RELATED TO SELECTING 91 00:03:48,400 --> 00:03:50,840 HEALTH INSURANCE PLANS, 92 00:03:50,840 --> 00:03:52,120 LOGISTICS AND FINANCIAL 93 00:03:52,120 --> 00:03:55,080 CHALLENGES THAT RELATE TO 94 00:03:55,080 --> 00:03:56,560 NAVIGATING HEALTH CARE DECISION 95 00:03:56,560 --> 00:03:57,880 MAKING, EXPERIENCES WITH THE 96 00:03:57,880 --> 00:03:58,600 HEALTH CARE CONTINUUM AND 97 00:03:58,600 --> 00:04:02,000 SUPPORT SERVICES. 98 00:04:02,000 --> 00:04:03,560 ADDITIONALLY OUR STAKEHOLDER 99 00:04:03,560 --> 00:04:04,960 ENGAGEMENT PANEL HAS BEEN 100 00:04:04,960 --> 00:04:06,360 INSTRUMENTAL IN THE SUMMIT 101 00:04:06,360 --> 00:04:06,600 PROCESS. 102 00:04:06,600 --> 00:04:12,760 THIS PANEL HAS BEEN LED BY HEIDI 103 00:04:12,760 --> 00:04:14,080 GIL AND WITH THE CONTRIBUTIONS 104 00:04:14,080 --> 00:04:16,280 OF PANEL MEMBERS THE STAKEHOLDER 105 00:04:16,280 --> 00:04:18,000 ENGAGEMENT PANEL HAS BROUGHT 106 00:04:18,000 --> 00:04:20,240 TOGETHER DIVERSE AND INSIGHTFUL 107 00:04:20,240 --> 00:04:23,240 S FROM MULTIPLE SECTORS 108 00:04:23,240 --> 00:04:24,440 INCLUDING HEALTH CARE ADVOCACY, 109 00:04:24,440 --> 00:04:25,240 PUBLIC AND RESEARCH ENTITIES 110 00:04:25,240 --> 00:04:27,320 AMONG OTHERS. 111 00:04:27,320 --> 00:04:30,160 PANEL MEMBERS HAVE SHARED THEIR 112 00:04:30,160 --> 00:04:33,040 UNIQUE EXPERIENCES ABOUT A 113 00:04:33,040 --> 00:04:36,000 TOPICS INCLUDING STIGMA, 114 00:04:36,000 --> 00:04:37,680 DIAGNOSIS, CAREGIVER SUPPORT AND 115 00:04:37,680 --> 00:04:39,000 THE DEMENTIA CARE WORKFORCE. 116 00:04:39,000 --> 00:04:39,600 THANK YOU TO MEMBERS OF THAT 117 00:04:39,600 --> 00:04:45,960 PANEL. 118 00:04:45,960 --> 00:04:49,440 I WANT TO TURN TO A PREVIEW OF 119 00:04:49,440 --> 00:04:51,920 WHAT CAN YOU EXPECT. 120 00:04:51,920 --> 00:04:54,640 EACH MORNING YOU'LL HEAR FROM 121 00:04:54,640 --> 00:04:55,440 PANELS. 122 00:04:55,440 --> 00:04:56,800 TODAY WE'LL ALSO HEAR REMARKS 123 00:04:56,800 --> 00:04:58,120 FROM THE NATIONAL INSTITUTE ON 124 00:04:58,120 --> 00:04:59,400 AGING WHICH WILL PROVIDE AN 125 00:04:59,400 --> 00:05:01,520 OVERVIEW OF DEMENTIA CARE AND 126 00:05:01,520 --> 00:05:03,680 CARE GIVING RESEARCH ACTIVITIES 127 00:05:03,680 --> 00:05:05,080 AND EXAMPLES. 128 00:05:05,080 --> 00:05:08,240 EACH DAY WE'LL ALSO HEAR 129 00:05:08,240 --> 00:05:09,760 PRESENTATIONS FROM OUR EIGHT 130 00:05:09,760 --> 00:05:11,560 SCIENTIFIC SESSIONS YOU SEE 131 00:05:11,560 --> 00:05:12,760 LISTED HERE AND CAN FIND MORE 132 00:05:12,760 --> 00:05:14,160 INFORMATION ABOUT THE SESSIONS, 133 00:05:14,160 --> 00:05:15,920 THE PRESENTERS AND THE PANELISTS 134 00:05:15,920 --> 00:05:17,480 OF THE SESSIONS AS WELL AS THE 135 00:05:17,480 --> 00:05:19,720 CO-CHAIRS WHO LED THE 136 00:05:19,720 --> 00:05:21,280 DEVELOPMENT OF EACH SESSION 137 00:05:21,280 --> 00:05:21,880 ONLINE IN THE SUMMIT PROGRAM 138 00:05:21,880 --> 00:05:25,960 BOOK. 139 00:05:25,960 --> 00:05:27,240 WE WANT TO HIGHLIGHT THAT ACROSS 140 00:05:27,240 --> 00:05:29,640 THE SUMMIT THERE ARE THREE OVER 141 00:05:29,640 --> 00:05:31,480 ARCHING AND CROSS-CUTTING THEMES 142 00:05:31,480 --> 00:05:33,960 WE MAY REFER TO. 143 00:05:33,960 --> 00:05:37,720 THESE INCLUDE ATTENTION TO 144 00:05:37,720 --> 00:05:39,960 PRACTICES OF INCLUSIVE SCIENCE 145 00:05:39,960 --> 00:05:41,320 AND HEALTH EQUITY, CONSIDERING 146 00:05:41,320 --> 00:05:42,920 WHAT MATTERS MOST TO THOSE 147 00:05:42,920 --> 00:05:45,080 LIVING WITH DEMENTIA AND THEIR 148 00:05:45,080 --> 00:05:47,280 CAREGIVERS AND/OR PARTNERS AND 149 00:05:47,280 --> 00:05:48,160 FRAME WORKS THAT SUPPORT AND 150 00:05:48,160 --> 00:05:49,280 ADVANCE THE UNDERSTANDING. 151 00:05:49,280 --> 00:05:51,400 AND LASTLY CONSIDERATIONS FOR 152 00:05:51,400 --> 00:05:53,600 STRENGTHENING RIGOR AND 153 00:05:53,600 --> 00:05:55,080 REPRODUCIBILITY OF DEMENTIA CARE 154 00:05:55,080 --> 00:06:01,480 AND CARE GIVING SCIENCE. 155 00:06:01,480 --> 00:06:03,920 WE INVITE AND ENCOURAGE YOUR 156 00:06:03,920 --> 00:06:04,240 PARTICIPATION. 157 00:06:04,240 --> 00:06:06,240 I WANT TO HIGHLIGHT WAYS TO 158 00:06:06,240 --> 00:06:08,200 PARTICIPATE OVER THE NEXT THREE 159 00:06:08,200 --> 00:06:08,400 DAYS. 160 00:06:08,400 --> 00:06:11,000 IF YOU JOINED THE SUMMIT VIA THE 161 00:06:11,000 --> 00:06:13,520 NIH VIDEOCAST, WE WANT YOU TO 162 00:06:13,520 --> 00:06:15,520 KNOW YOU CAN CLICK SEND LIVE 163 00:06:15,520 --> 00:06:16,920 FEEDBACK IN ORDER TO SEND 164 00:06:16,920 --> 00:06:17,200 QUESTIONS. 165 00:06:17,200 --> 00:06:19,720 AND WE ENCOURAGE YOU TO SUBMIT 166 00:06:19,720 --> 00:06:21,520 QUESTIONS THROUGHOUT THE SUMMIT. 167 00:06:21,520 --> 00:06:23,360 IF YOU HAVE JOINED THE SUMMIT 168 00:06:23,360 --> 00:06:25,320 VIA THE ZOOM WEBINAR, PLEASE 169 00:06:25,320 --> 00:06:27,080 ENTER YOUR QUESTIONS INTO THE 170 00:06:27,080 --> 00:06:29,200 ZOOM Q&A BOX. 171 00:06:29,200 --> 00:06:31,040 AFTER EACH SCIENTIFIC SESSION WE 172 00:06:31,040 --> 00:06:33,920 WILL HAVE AN OPPORTUNITY FOR 173 00:06:33,920 --> 00:06:36,920 BOTH DISCUSSION AND FOR Q&A. 174 00:06:36,920 --> 00:06:39,520 WHILE WE MIGHT NOT DUE TO TIME 175 00:06:39,520 --> 00:06:40,080 CONSTRAINTS ANSWER EVERY 176 00:06:40,080 --> 00:06:41,240 QUESTION SUBMITS OVER THE COURSE 177 00:06:41,240 --> 00:06:45,680 OF THE SUMMIT, THE SUMMIT 178 00:06:45,680 --> 00:06:47,120 STARING COMMITTEE, WHICH WAS 179 00:06:47,120 --> 00:06:49,040 HIGHLIGHTED WILL REVIEW ALL 180 00:06:49,040 --> 00:06:49,920 SUBMITTED QUESTIONS OVER THE 181 00:06:49,920 --> 00:06:50,920 COURSE OF THE SUMMIT. 182 00:06:50,920 --> 00:06:54,480 WE ALSO WANT TO ENCOURAGE YOU TO 183 00:06:54,480 --> 00:06:57,640 FOLLOW ALONG ON SOCIAL MEDIA 184 00:06:57,640 --> 00:06:58,640 USING THE HASH TAG DEMENTIA CARE 185 00:06:58,640 --> 00:07:02,400 SUMMIT. 186 00:07:02,400 --> 00:07:04,960 I WANT TO HIGHLIGHT AGAIN THE 187 00:07:04,960 --> 00:07:06,360 MANY IMPORTANT CONTRIBUTORS WHO 188 00:07:06,360 --> 00:07:08,880 MADE THE SUMMIT POSSIBLE AND 189 00:07:08,880 --> 00:07:10,520 EXTEND OUR GRATITUDE FOR ALL THE 190 00:07:10,520 --> 00:07:11,200 CONTRIBUTIONS INCLUDING YOU 191 00:07:11,200 --> 00:07:13,880 JOINING US FOR THE NEXT THREE 192 00:07:13,880 --> 00:07:14,480 DAYS FOR THE VERY IMPORTANT 193 00:07:14,480 --> 00:07:18,920 EFFORT. 194 00:07:18,920 --> 00:07:20,760 UP NEXT WE'LL HEAR FROM 195 00:07:20,760 --> 00:07:21,960 FACILITATORS OF THE LIVED 196 00:07:21,960 --> 00:07:29,960 EXPERIENCE PANEL, MONICA MORE 197 00:07:29,960 --> 00:07:32,080 -- MORENO AND WE'LL HERE 198 00:07:32,080 --> 00:07:35,920 REMARKS FROM THE NIA DIRECTOR, 199 00:07:35,920 --> 00:07:38,160 AMY KELLEY AND A PRESENTATION 200 00:07:38,160 --> 00:07:40,400 ABOUT DEMENTIA CARE AND RESEARCH 201 00:07:40,400 --> 00:07:43,840 FROM DR. FAZIO. 202 00:07:43,840 --> 00:07:51,480 THANK YOU. 203 00:07:51,480 --> 00:08:01,920 >>GOOD MORNING, EVERYONE. 204 00:08:04,560 --> 00:08:07,000 >>THANK YOU FOR THE INVITATION. 205 00:08:07,000 --> 00:08:09,560 I'M I'M MAKING OPENING COMMENTS 206 00:08:09,560 --> 00:08:17,040 WITH MY COLLEAGUE, DR. GARY 207 00:08:17,040 --> 00:08:18,680 EPSTEIN-LUBOW AT PROFESSOR OF 208 00:08:18,680 --> 00:08:20,280 PSYCHIATRY AT BROWN UNIVERSITY. 209 00:08:20,280 --> 00:08:22,520 THE UNIVERSITY HAS HAD A LONG 210 00:08:22,520 --> 00:08:24,440 HISTORY OF PEOPLE LIVING WITH 211 00:08:24,440 --> 00:08:25,920 DEMENTIA AND CARE PARTNERS 212 00:08:25,920 --> 00:08:28,760 INCLUDING PAST SUM MITS AND THE 213 00:08:28,760 --> 00:08:29,880 COLLABORATIVE WHICH I 214 00:08:29,880 --> 00:08:31,360 CO-FACILITATE A STAKEHOLDER 215 00:08:31,360 --> 00:08:32,520 GROUP WITH GARY. 216 00:08:32,520 --> 00:08:35,000 PAPERS HAVE BEEN WRITTEN AND THE 217 00:08:35,000 --> 00:08:37,000 MODEL AND PRACTICES WERE 218 00:08:37,000 --> 00:08:37,760 FOLLOWED TO CONVENE THE LIVED 219 00:08:37,760 --> 00:08:40,920 EXPERIENCE PANEL. 220 00:08:40,920 --> 00:08:43,000 NOW THE GOAL OF THE LIVED 221 00:08:43,000 --> 00:08:45,000 EXPERIENCE PANEL WAS TO SOLICIT 222 00:08:45,000 --> 00:08:46,640 INPUT AND FEEDBACK FROM 223 00:08:46,640 --> 00:08:47,880 STAKEHOLDERS REGARDING THE 224 00:08:47,880 --> 00:08:50,760 SUMMIT PLANS WITH THE PRIMARY 225 00:08:50,760 --> 00:08:52,400 PURPOSE TO IDENTIFY UNMET 226 00:08:52,400 --> 00:08:53,920 RESEARCH NEEDS AND IDEAS 227 00:08:53,920 --> 00:08:55,080 INCLUDING THOSE FROM PEOPLE 228 00:08:55,080 --> 00:08:56,040 LIVING WITH DEMENTIA AND CARE 229 00:08:56,040 --> 00:09:00,840 PARTNERS. 230 00:09:00,840 --> 00:09:02,920 THE LIVED EXPERIENCE PANEL 231 00:09:02,920 --> 00:09:04,240 INCLUDED FOUR INDIVIDUALS WITH 232 00:09:04,240 --> 00:09:05,040 EARLY STAGE COGNITIVE DISORDER 233 00:09:05,040 --> 00:09:08,520 AND THREE CARE PARTNERS. 234 00:09:08,520 --> 00:09:10,840 WE STRIVE TO CONVENE A GROUP 235 00:09:10,840 --> 00:09:12,640 THAT REPRESENTED DIVERSE GROUPS 236 00:09:12,640 --> 00:09:17,560 OF VARYING AGES AND DIAGNOSES TO 237 00:09:17,560 --> 00:09:18,960 THOSE LIVING WITH DEMENTIA. 238 00:09:18,960 --> 00:09:21,440 THIS IS AN OVERVIEW OF OUR TIME 239 00:09:21,440 --> 00:09:21,640 LINE. 240 00:09:21,640 --> 00:09:26,000 WE STARTED RECRUITMENT IN 241 00:09:26,000 --> 00:09:27,480 OCTOBER OF LAST YEAR TO CONVENE 242 00:09:27,480 --> 00:09:30,320 FOR TWO FEEDBACK SESSIONS ONE IN 243 00:09:30,320 --> 00:09:32,080 DECEMBER LAST YEAR AND IN 244 00:09:32,080 --> 00:09:32,400 JANUARY. 245 00:09:32,400 --> 00:09:35,160 GARY AND I WERE THE 246 00:09:35,160 --> 00:09:36,600 CO-FACILITATORS AND THERE WAS A 247 00:09:36,600 --> 00:09:39,600 SUMMARY REPORT THAT WAS PREPARED 248 00:09:39,600 --> 00:09:42,280 BY ROSE, MEAD AND ASSOCIATES ON 249 00:09:42,280 --> 00:09:43,400 AVAILABLE ON THE WEBSITE. 250 00:09:43,400 --> 00:09:45,280 I'LL HAND IT OVER TO GARY TO 251 00:09:45,280 --> 00:09:46,640 GIVE A HIGH-LEVEL OVERVIEW OF 252 00:09:46,640 --> 00:09:50,880 THE CONTENT OF THE REPORT. 253 00:09:50,880 --> 00:09:52,640 >>THANK YOU, MONICA. 254 00:09:52,640 --> 00:09:54,240 IT'S AN HONOR AND PLEASURE TO 255 00:09:54,240 --> 00:09:55,680 HAVE COMPLETED THIS WORK WITH 256 00:09:55,680 --> 00:09:58,040 YOU AND OUR TEAM AND IT'S ONE OF 257 00:09:58,040 --> 00:10:01,640 THE HIGHEST JOYS OF MY JOB TO 258 00:10:01,640 --> 00:10:02,680 SEE PEOPLE WITH LIVED EXPERIENCE 259 00:10:02,680 --> 00:10:04,680 SPEAK FROM THEIR OWN VOICE SO 260 00:10:04,680 --> 00:10:08,120 WONDERFUL TO SEE THIS IN THE 261 00:10:08,120 --> 00:10:08,360 SUMMIT. 262 00:10:08,360 --> 00:10:10,880 THE REPORT COVERS SEVEN AREAS 263 00:10:10,880 --> 00:10:13,360 DISCUSSED BY PANEL MEMBERS. 264 00:10:13,360 --> 00:10:17,800 THE SLIDE SHOWS THE FIRST FOUR. 265 00:10:17,800 --> 00:10:19,280 THERE WERE MULTIPLE THEMES WHICH 266 00:10:19,280 --> 00:10:20,960 RESULTED FROM EACH TOPIC BUT 267 00:10:20,960 --> 00:10:23,800 ONLY A SELECT FEW WERE INCLUDED 268 00:10:23,800 --> 00:10:25,120 ON THE SLIDES. 269 00:10:25,120 --> 00:10:27,080 THERE WERE EXPRESSED DESIRES 270 00:10:27,080 --> 00:10:29,240 FROM BOTH PEOPLE LIVING WITH 271 00:10:29,240 --> 00:10:31,160 COGNITIVE SYMPTOMS AND 272 00:10:31,160 --> 00:10:33,840 CAREGIVERS REGARDING MAINTAINING 273 00:10:33,840 --> 00:10:34,280 INDEPENDENCE. 274 00:10:34,280 --> 00:10:36,120 REGARDING THE CHALLENGE AND 275 00:10:36,120 --> 00:10:38,440 BARRIERS TO LIVING WELL. 276 00:10:38,440 --> 00:10:40,120 ONE KEY THEME WAS THE LOSS TO 277 00:10:40,120 --> 00:10:42,040 SOCIAL RELATIONSHIPS AND 278 00:10:42,040 --> 00:10:43,040 OVERCOMING BARRIERS ONE THEME 279 00:10:43,040 --> 00:10:44,760 WAS THE IMPORTANCE OF INCREASING 280 00:10:44,760 --> 00:10:46,760 ACCESS TO MULTIPLE FORMS OF 281 00:10:46,760 --> 00:10:47,080 SUPPORT. 282 00:10:47,080 --> 00:10:49,360 REGARDING THE NEED FOR RESEARCH 283 00:10:49,360 --> 00:10:52,240 TO IMPROVE PROCEDURE SURROUNDING 284 00:10:52,240 --> 00:10:53,880 SCREENING AND DIAGNOSIS THE 285 00:10:53,880 --> 00:10:56,400 PANELIST DESCRIBED MULTIPLE 286 00:10:56,400 --> 00:10:58,040 SITUATIONS IN WHICH THEY FELL 287 00:10:58,040 --> 00:11:00,000 SHORT OF BASIC NEEDS FOR 288 00:11:00,000 --> 00:11:00,640 GUIDANCE, SUPPORT AND CLINICAL 289 00:11:00,640 --> 00:11:07,000 REFERRALS. 290 00:11:07,000 --> 00:11:09,320 AFTER DIAGNOSIS PANELISTS 291 00:11:09,320 --> 00:11:11,840 DESCRIBE DIFFICULTY WITH CARE 292 00:11:11,840 --> 00:11:13,800 NAVIGATION AND ADAPTING CARE AS 293 00:11:13,800 --> 00:11:16,320 ILLNESS PROGRESSED. 294 00:11:16,320 --> 00:11:17,280 THE PANEL ADDRESSED ADVANCED 295 00:11:17,280 --> 00:11:18,520 DISEASE AND END OF LIFE CARE. 296 00:11:18,520 --> 00:11:20,840 THIS WAS A SENSITIVE AND RICH 297 00:11:20,840 --> 00:11:22,160 DISCUSSION OVER SIMPLIFIED BY 298 00:11:22,160 --> 00:11:23,520 THE NOTE THERE WAS STRONG 299 00:11:23,520 --> 00:11:25,280 INTEREST IN THE GREATER HOME 300 00:11:25,280 --> 00:11:26,800 BASE OF SUPPORTS INCLUDING 301 00:11:26,800 --> 00:11:28,520 FINANCIAL SOLUTIONS TO ADDRESS 302 00:11:28,520 --> 00:11:31,040 INCREASE IN CARE NEEDS. 303 00:11:31,040 --> 00:11:32,520 PANELISTS LIVING WITH COGNITIVE 304 00:11:32,520 --> 00:11:34,840 SYMPTOMS EXPRESSED WORRIES ABOUT 305 00:11:34,840 --> 00:11:37,280 BECOMING BURDENSOME AND 306 00:11:37,280 --> 00:11:38,040 CAREGIVERS IDENTIFIED 307 00:11:38,040 --> 00:11:39,600 OPPORTUNITIES TO REDUCE BURDEN 308 00:11:39,600 --> 00:11:41,080 THROUGH IMPROVED COMMUNICATION 309 00:11:41,080 --> 00:11:41,800 REGARDING PLANS FOR END OF LIFE 310 00:11:41,800 --> 00:11:43,280 CARE. 311 00:11:43,280 --> 00:11:48,080 AND FINALLY THE TOPIC OF 312 00:11:48,080 --> 00:11:48,800 PARTICIPATION IN RESEARCH WAS 313 00:11:48,800 --> 00:11:50,880 DISCUSSED WITH MANY PANELISTS 314 00:11:50,880 --> 00:11:52,520 DESCRIBING POSITIVE EXPERIENCES 315 00:11:52,520 --> 00:11:55,360 AS A CLINICAL TRIAL PARTICIPANT 316 00:11:55,360 --> 00:11:56,800 AND THERE WERE RECOMMENDATIONS 317 00:11:56,800 --> 00:12:00,440 TO IMPROVE RECRUITMENT OUTREACH 318 00:12:00,440 --> 00:12:02,600 THROUGH TRAVEL AND OTHER 319 00:12:02,600 --> 00:12:05,080 LOGISTICS ENHANCEMENT. 320 00:12:05,080 --> 00:12:05,880 PLEASE READ THROUGH THE FULL 321 00:12:05,880 --> 00:12:06,960 LIVED PANEL REPORT. 322 00:12:06,960 --> 00:12:09,760 IT'S MY PLEASURE TO INTRODUCE 323 00:12:09,760 --> 00:12:13,880 DR. LES BURGER AND MEMBER OF THE 324 00:12:13,880 --> 00:12:15,800 SUMMIT LIVED EXPERIENCE AND 325 00:12:15,800 --> 00:12:19,280 FOLLOWING LES IS RITA HARRISON A 326 00:12:19,280 --> 00:12:21,200 PERSON LIVING WITH COGNITIVE 327 00:12:21,200 --> 00:12:21,480 SYMPTOMS. 328 00:12:21,480 --> 00:12:23,240 IT'S BEEN A PLEASURE WORKING 329 00:12:23,240 --> 00:12:27,960 WITH THEM AND THE MEMBERS OF THE 330 00:12:27,960 --> 00:12:28,280 PANEL. 331 00:12:28,280 --> 00:12:29,480 >>THANK YOU. 332 00:12:29,480 --> 00:12:31,720 A VERY SPECIAL THANKS TO ALL OF 333 00:12:31,720 --> 00:12:33,400 YOU IN THE AUDIENCE. 334 00:12:33,400 --> 00:12:34,680 FOR YOU LADIES AND GENTLEMEN, 335 00:12:34,680 --> 00:12:37,720 ARE THE TIP OF THE SPHERE IN 336 00:12:37,720 --> 00:12:40,480 THIS FIGHT TO UNDERSTAND THIS 337 00:12:40,480 --> 00:12:41,200 HORRENDOUS DISEASE. 338 00:12:41,200 --> 00:12:44,720 I HOPE YOU'RE AS CAUGHT UP AS I 339 00:12:44,720 --> 00:12:47,720 AM WITH THE SENSE OF URGENCY. 340 00:12:47,720 --> 00:12:52,840 IT WAS ON NOVEMBER 3, 1906 341 00:12:52,840 --> 00:12:55,920 DR. ALZHEIMER FIRST REPORTED HIS 342 00:12:55,920 --> 00:13:00,560 FINDINGS OVER 116 YEARS AGO. 343 00:13:00,560 --> 00:13:02,760 HERE WE ARE IN 2023 WITH 344 00:13:02,760 --> 00:13:05,480 MILLIONS OF AMERICANS AFFLICTED 345 00:13:05,480 --> 00:13:07,480 WITH SYMPTOMATIC ALZHEIMER'S AND 346 00:13:07,480 --> 00:13:09,520 TENS OF MILLIONS CAUGHT UP IN 347 00:13:09,520 --> 00:13:12,720 CARE GIVING AND ALL THE 348 00:13:12,720 --> 00:13:14,240 STRUGGLES WE'RE ALL FAMILIAR 349 00:13:14,240 --> 00:13:14,440 WITH. 350 00:13:14,440 --> 00:13:18,640 AS FOR ME, I'M AN 82-YEAR-OLD 351 00:13:18,640 --> 00:13:20,440 RETIRED PHYSICIAN WHO WALKED ARM 352 00:13:20,440 --> 00:13:23,080 AND ARM WITH HIS BEAUTIFUL WIFE 353 00:13:23,080 --> 00:13:27,040 OF 61 YEARS UNTIL SHE LOST HER 354 00:13:27,040 --> 00:13:28,960 SEVEN-YEAR BATTLE WITH 355 00:13:28,960 --> 00:13:30,000 ALZHEIMER'S IN 2021. 356 00:13:30,000 --> 00:13:31,800 DURING THE EARLY STAGE OF HER 357 00:13:31,800 --> 00:13:34,280 DISEASE I RETIRED TO BECOME A 358 00:13:34,280 --> 00:13:35,680 FULL-TIME CAREGIVER. 359 00:13:35,680 --> 00:13:37,560 AND BEING BLESSED WITH 360 00:13:37,560 --> 00:13:40,600 RELATIVELY GOOD HEALTH AND BEING 361 00:13:40,600 --> 00:13:42,280 FINANCIALLY SOUND WE DIDN'T FACE 362 00:13:42,280 --> 00:13:44,640 MANY OF THE STRUGGLES SO MANY 363 00:13:44,640 --> 00:13:47,920 OTHERS MUST DEAL WITH. 364 00:13:47,920 --> 00:13:50,160 WHEN JULIE WAS IN THE EARLY 365 00:13:50,160 --> 00:13:51,920 STAGE OF THE DISEASE, LIFE WAS 366 00:13:51,920 --> 00:13:55,000 AS CLOSE TO NORMAL AS ONE COULD 367 00:13:55,000 --> 00:13:56,640 HAVE HOPED FOR. 368 00:13:56,640 --> 00:13:58,760 I COULD LEAVE HER ALONE FOR A 369 00:13:58,760 --> 00:13:59,440 COUPLE HOURS. 370 00:13:59,440 --> 00:14:01,440 SHE WAS STILL DRIVING. 371 00:14:01,440 --> 00:14:04,000 SHE KNEW HOW TO USE HER PHONE. 372 00:14:04,000 --> 00:14:06,880 SHE COULD MAKE A CUP OF COFFEE. 373 00:14:06,880 --> 00:14:12,920 WITH AN ERASER BOARD AND POST-IT 374 00:14:12,920 --> 00:14:14,440 NOTES EVERYWHERE WE MANAGED OUR 375 00:14:14,440 --> 00:14:16,960 LIVES WITH LITTLE ASSISTANCE. 376 00:14:16,960 --> 00:14:18,760 WE WERE ACTIVE WITH THE 377 00:14:18,760 --> 00:14:20,640 ALZHEIMER'S ASSOCIATION IN 378 00:14:20,640 --> 00:14:24,040 GETTING THE WORD OUT AND 379 00:14:24,040 --> 00:14:26,160 EDUCATING AND FUND RAISING. 380 00:14:26,160 --> 00:14:28,280 JULIE PARTICIPATED IN CLINICAL 381 00:14:28,280 --> 00:14:28,680 TRIALS. 382 00:14:28,680 --> 00:14:31,880 WE WERE DOING JUST FINE. 383 00:14:31,880 --> 00:14:34,880 THEN THAT SLOWLY CHANGED. 384 00:14:34,880 --> 00:14:38,240 YOU'LL HEAR ABOUT THE MANY 385 00:14:38,240 --> 00:14:38,960 FRUSTRATIONS CAREGIVERS 386 00:14:38,960 --> 00:14:39,280 EXPERIENCE. 387 00:14:39,280 --> 00:14:42,960 FOR ME IT WAS SIMPLY THE 388 00:14:42,960 --> 00:14:45,360 INABILITY TO FIX THE PROBLEM. 389 00:14:45,360 --> 00:14:47,000 LIKE AN AGGRESSIVE METASTATIC 390 00:14:47,000 --> 00:14:49,800 CANCER THAT NO LONGER RESPONDED 391 00:14:49,800 --> 00:14:52,200 TO TREATMENT, THERE WAS LITTLE I 392 00:14:52,200 --> 00:14:54,240 COULD DO. 393 00:14:54,240 --> 00:14:55,760 COMFORT, YES. 394 00:14:55,760 --> 00:14:58,080 FIX, NO. 395 00:14:58,080 --> 00:15:01,440 WHETHER IT WAS EATING PROPERLY 396 00:15:01,440 --> 00:15:04,840 OR PERSONAL HYGIENE OR JULIE'S 397 00:15:04,840 --> 00:15:08,360 CHANGING PERSONALITY AND GROWING 398 00:15:08,360 --> 00:15:09,880 PARANOIA, NO MATTER HOW MANY 399 00:15:09,880 --> 00:15:12,280 BOOKS OR ARTICLES I READ, NO 400 00:15:12,280 --> 00:15:14,320 MATTER HOW MANY SUPPORT GROUP I 401 00:15:14,320 --> 00:15:16,560 ATTENDED OR PEOPLE I SPOKE WITH, 402 00:15:16,560 --> 00:15:17,160 NOTHING SEEMED TO WORK VERY 403 00:15:17,160 --> 00:15:20,200 WELL. 404 00:15:20,200 --> 00:15:21,880 AS A DEAR FRIEND WHO TRIED TO 405 00:15:21,880 --> 00:15:23,880 CONSOLE ME WOULD SAY, IT IS WHAT 406 00:15:23,880 --> 00:15:27,160 IT IS. 407 00:15:27,160 --> 00:15:28,560 SO MANY FRIENDS AND SURROUNDING 408 00:15:28,560 --> 00:15:32,480 BY A SUPPORTIVE COMMUNITY, I 409 00:15:32,480 --> 00:15:35,320 QUIETLY STRUGGLE TO CONTROL MY 410 00:15:35,320 --> 00:15:38,720 FRUSTRATION AND AT TIMES MY 411 00:15:38,720 --> 00:15:44,280 OVERFLOWING ANGER WITH JULIE AND 412 00:15:44,280 --> 00:15:47,200 MYSELF, WITH GOD. 413 00:15:47,200 --> 00:15:49,280 PERHAPS MY SECOND GREATEST 414 00:15:49,280 --> 00:15:52,200 FRUSTRATION WAS EDUCATING THE 415 00:15:52,200 --> 00:15:53,040 PUBLIC. 416 00:15:53,040 --> 00:15:56,840 LOCAL, STATE AND FEDERAL LEADERS 417 00:15:56,840 --> 00:15:58,880 AND THE HEALTH PROFESSIONAL. 418 00:15:58,880 --> 00:16:01,640 YOU WOULD THINK THAT WITH ONE 419 00:16:01,640 --> 00:16:03,960 AND 10 PEOPLE OVER 65 HAVING 420 00:16:03,960 --> 00:16:06,440 ALZHEIMER'S DEMENTIA, EVERY 421 00:16:06,440 --> 00:16:09,240 PRIMARY CARE PRACTITIONER WOULD 422 00:16:09,240 --> 00:16:11,680 BE SURE TO ASSESS THEIR OLDER 423 00:16:11,680 --> 00:16:13,280 PATIENT'S COGNITIVE FUNCTION IN 424 00:16:13,280 --> 00:16:16,440 A QUALITATIVE WAY. 425 00:16:16,440 --> 00:16:19,320 THAT WAS RECOMMENDED BY SOME 426 00:16:19,320 --> 00:16:23,760 PROFESSIONAL SOCIETIES IT'S NOT 427 00:16:23,760 --> 00:16:26,680 BEING ACCOMPLISHED AS WELL AS IT 428 00:16:26,680 --> 00:16:27,080 SHOULD. 429 00:16:27,080 --> 00:16:28,600 HOW DOES ONE LEARN ABOUT 430 00:16:28,600 --> 00:16:30,840 COGNITIVE IMPAIRMENT, WHERE DOES 431 00:16:30,840 --> 00:16:32,440 ONE GO TO SEEK HELP? 432 00:16:32,440 --> 00:16:33,760 WHERE'S THE FINANCIAL SUPPORT TO 433 00:16:33,760 --> 00:16:36,880 HELP LOCAL COMMUNITIES DEVELOP 434 00:16:36,880 --> 00:16:38,440 THE PROGRAMS AND PEOPLE AND 435 00:16:38,440 --> 00:16:39,040 RESOURCES NEEDED TO EASE THE 436 00:16:39,040 --> 00:16:42,400 BURDEN. 437 00:16:42,400 --> 00:16:45,880 AND SO LADIES AND GENTLEMEN, FOR 438 00:16:45,880 --> 00:16:48,120 ME, YOU ALL ARE THE ANSWER. 439 00:16:48,120 --> 00:16:53,120 UNTIL WE FIND THE CAUSE, AND 440 00:16:53,120 --> 00:16:55,160 FIND AN EFFECTIVE TREATMENT AND 441 00:16:55,160 --> 00:17:01,840 EVENTUALLY A CURE AND WAIT AND 442 00:17:01,840 --> 00:17:05,600 WAY TO PREVENT IT YOU MUST MAKE 443 00:17:05,600 --> 00:17:06,960 CARE BETTER. 444 00:17:06,960 --> 00:17:07,840 HELP PUT ALZHEIMER'S DISEASE IN 445 00:17:07,840 --> 00:17:08,320 THE REARVIEW MIRROR. 446 00:17:08,320 --> 00:17:11,240 THANK YOU. 447 00:17:11,240 --> 00:17:12,360 >>GOOD MORNING. 448 00:17:12,360 --> 00:17:15,040 MY NAME IS RITA HARRISON. 449 00:17:15,040 --> 00:17:17,000 I RESIDE IN KENTUCKY. 450 00:17:17,000 --> 00:17:19,840 I'M 63 YEARS OLD AND I WAS 451 00:17:19,840 --> 00:17:21,440 DIAGNOSED WITH MILD COGNITIVE 452 00:17:21,440 --> 00:17:23,440 IMPAIRMENT AT THE AGE OF 58. 453 00:17:23,440 --> 00:17:26,560 I AM NOW IN THE EARLY STAGES OF 454 00:17:26,560 --> 00:17:28,360 ALZHEIMER'S DISEASE. 455 00:17:28,360 --> 00:17:32,720 I'VE EXPERIENCED A GRADUAL 456 00:17:32,720 --> 00:17:34,800 DECLINE IN THE LAST FIVE YEARS. 457 00:17:34,800 --> 00:17:37,360 LAST FALL I WAS APPROVED TO 458 00:17:37,360 --> 00:17:39,320 PARTICIPATE IN A CLINICAL TRIAL. 459 00:17:39,320 --> 00:17:42,000 MY CAREGIVER IS MY HUSBAND JOE 460 00:17:42,000 --> 00:17:43,320 AND TOGETHER WE'RE DEALING WITH 461 00:17:43,320 --> 00:17:45,720 THE OUTCOMES OF THE ALZHEIMER'S 462 00:17:45,720 --> 00:17:47,360 DISEASE IN OUR DAILY LIVES. 463 00:17:47,360 --> 00:17:50,000 WHAT MATTERS MOST TO ME WHILE 464 00:17:50,000 --> 00:17:51,160 DEALING WITH THIS DISEASE, FIRST 465 00:17:51,160 --> 00:17:54,520 AND FOREMOST I WANT TO LIVE MY 466 00:17:54,520 --> 00:17:55,960 LIFE TO THE FULLEST WHILE I 467 00:17:55,960 --> 00:17:57,560 STILL HAVE MY COGNITIVE 468 00:17:57,560 --> 00:17:59,520 ABILITIES, LIMITED THOUGH THEY 469 00:17:59,520 --> 00:17:59,840 ARE. 470 00:17:59,840 --> 00:18:01,680 TOO MANY PEOPLE LIVE IN DENIAL 471 00:18:01,680 --> 00:18:03,360 WHEN THEY'RE FACED WITH WHAT I 472 00:18:03,360 --> 00:18:03,920 AM FACING. 473 00:18:03,920 --> 00:18:06,520 I HAVE A FRIEND WHO HAS 474 00:18:06,520 --> 00:18:07,640 ALZHEIMER'S DISEASE AND SHE 475 00:18:07,640 --> 00:18:10,720 CHOOSES TO KEEP IT A SECRET YET 476 00:18:10,720 --> 00:18:11,760 HAS OBVIOUS SYMPTOMS. 477 00:18:11,760 --> 00:18:13,880 ALL MY FRIENDS, FAMILY AND 478 00:18:13,880 --> 00:18:15,960 ACQUAINTANCES AT ACHURCH ARE 479 00:18:15,960 --> 00:18:17,960 FULLY AWARE OF MY PREDICAMENT 480 00:18:17,960 --> 00:18:19,600 AND FROM THEM I DRAW THE SUPPORT 481 00:18:19,600 --> 00:18:22,440 I NEED TO PRESS ON. 482 00:18:22,440 --> 00:18:24,640 DEMENTIA IS NOT A DISEASE TO BE 483 00:18:24,640 --> 00:18:26,560 ASHAMED OF, RATHER A DISEASE AS 484 00:18:26,560 --> 00:18:29,920 A SOCIETY WE MUST LEARN TO 485 00:18:29,920 --> 00:18:30,640 EMBRACE. 486 00:18:30,640 --> 00:18:32,840 SECONDLY, I WANT TO HELP OTHERS 487 00:18:32,840 --> 00:18:34,760 UNDERSTAND DEMENTIA AND 488 00:18:34,760 --> 00:18:35,680 UNDERSTAND HOW TO HELP THOSE 489 00:18:35,680 --> 00:18:37,680 LIVING WITH IT. 490 00:18:37,680 --> 00:18:40,920 I WANT TO CHANGE THE STIGMA 491 00:18:40,920 --> 00:18:41,960 ASSOCIATED WITH DEMENTIA. 492 00:18:41,960 --> 00:18:45,040 THIS IS NOT A DISEASE FOR GRAY 493 00:18:45,040 --> 00:18:46,760 HAIRED WOMEN AND MEN IN THEIR 494 00:18:46,760 --> 00:18:47,400 80s. 495 00:18:47,400 --> 00:18:49,640 IT'S NOT JUST ABOUT LOSS OF 496 00:18:49,640 --> 00:18:50,040 MEMORY. 497 00:18:50,040 --> 00:18:54,400 THE DECLINE IN THE COGNITIVE 498 00:18:54,400 --> 00:18:56,640 PROCESS IMPACTS SO MUCH MORE 499 00:18:56,640 --> 00:18:58,960 SUCH AS CONFUSION, ANXIETY, 500 00:18:58,960 --> 00:19:01,040 COMPREHENSION AND TIME 501 00:19:01,040 --> 00:19:03,640 MANAGEMENT WITH A SIMPLE EVERY 502 00:19:03,640 --> 00:19:04,280 DAY TASK. 503 00:19:04,280 --> 00:19:07,800 MANY PEOPLE IN THEIR 40s AND 50s 504 00:19:07,800 --> 00:19:09,000 STILL WORKING AND RAISING KIDS 505 00:19:09,000 --> 00:19:11,080 HAVE DEMENTIA. 506 00:19:11,080 --> 00:19:13,760 IT'S IN OUR BACKDOORS NOT JUST 507 00:19:13,760 --> 00:19:14,480 NURSING HOMES. 508 00:19:14,480 --> 00:19:16,920 I HAVE ACTUALLY LOST SOME 509 00:19:16,920 --> 00:19:18,280 FRIENDS DUE TO MY DIAGNOSIS 510 00:19:18,280 --> 00:19:19,240 LIKELY BECAUSE THEY'RE 511 00:19:19,240 --> 00:19:20,880 UNCOMFORTABLE BEING AROUND ME. 512 00:19:20,880 --> 00:19:21,920 THEY DON'T KNOW WHAT TO SAY OR 513 00:19:21,920 --> 00:19:24,240 TO THINK. 514 00:19:24,240 --> 00:19:25,240 BUT I'M STILL ME. 515 00:19:25,240 --> 00:19:27,720 ON THE OTHER HAND, I'VE GAINED A 516 00:19:27,720 --> 00:19:29,600 NEW COMMUNITY OF FRIENDS WHO ARE 517 00:19:29,600 --> 00:19:30,960 DEALING WITH THE SAME ISSUES 518 00:19:30,960 --> 00:19:32,480 WHICH HAVE HAD A POSITIVE EFFECT 519 00:19:32,480 --> 00:19:36,320 ON ME. 520 00:19:36,320 --> 00:19:38,240 FINALLY BY SHARING MY 521 00:19:38,240 --> 00:19:39,080 EXPERIENCES WITH QUALIFIED 522 00:19:39,080 --> 00:19:44,200 HEALTH PROFESSIONALS, I HOPE I 523 00:19:44,200 --> 00:19:46,080 CAN PLAY A SMALL PART IN FINDING 524 00:19:46,080 --> 00:19:48,040 A CURE FOR THE FUTURE 525 00:19:48,040 --> 00:19:48,320 GENERATIONS. 526 00:19:48,320 --> 00:19:50,320 WHAT ARE MY PERSONAL GOALS FOR 527 00:19:50,320 --> 00:19:51,080 DAILY LIVING? 528 00:19:51,080 --> 00:19:53,480 I RETIRED FROM MY JOB BECAUSE I 529 00:19:53,480 --> 00:19:55,320 OWNED UP TO THE FACT I WAS NOT 530 00:19:55,320 --> 00:19:57,720 ABLE TO HANDLE THE STRESS OF 531 00:19:57,720 --> 00:19:59,120 LEARNING NEW THINGS AND MEETING 532 00:19:59,120 --> 00:20:01,480 DEADLINES BUT I DID NOT GIVE UP. 533 00:20:01,480 --> 00:20:01,640 . 534 00:20:01,640 --> 00:20:03,760 I HAVE CHOSEN A PATHWAY TO KEEP 535 00:20:03,760 --> 00:20:04,560 ME FOCUSSED. 536 00:20:04,560 --> 00:20:06,840 A PATHWAY TO MAKE ME FEEL LIKE 537 00:20:06,840 --> 00:20:09,360 I'M STILL CONTRIBUTING AND A 538 00:20:09,360 --> 00:20:10,360 PATHWAY TO MAKE ME FEEL GOOD 539 00:20:10,360 --> 00:20:11,240 ABOUT MYSELF. 540 00:20:11,240 --> 00:20:12,680 WHAT HAVE I DONE? 541 00:20:12,680 --> 00:20:14,320 I WALK EVERY DAY. 542 00:20:14,320 --> 00:20:16,000 I HAVE A SERVICE DOG. 543 00:20:16,000 --> 00:20:17,360 SHE'S UNDERGOING TRAINING TO 544 00:20:17,360 --> 00:20:19,360 ENSURE I DON'T GET LOST AS I 545 00:20:19,360 --> 00:20:21,640 WALK THROUGH THE NEIGHBORHOOD. 546 00:20:21,640 --> 00:20:23,160 SHE ALSO SUPPORTS ME 547 00:20:23,160 --> 00:20:23,960 EMOTIONALLY. 548 00:20:23,960 --> 00:20:26,360 HER NAME IS DOLLY PARTON. 549 00:20:26,360 --> 00:20:28,640 I BEGAN TAKING PIANO LESSONS AT 550 00:20:28,640 --> 00:20:31,880 THE AGE OF 63, NO LESS. 551 00:20:31,880 --> 00:20:33,320 PIANO SOOTHES MY SOUL WHICH 552 00:20:33,320 --> 00:20:36,160 HELPS ME WITH THE ANXIETY THAT I 553 00:20:36,160 --> 00:20:36,800 CONSTANTLY EXPERIENCE WITH THIS 554 00:20:36,800 --> 00:20:40,640 DISEASE. 555 00:20:40,640 --> 00:20:41,800 I SPENT AS MUCH TIMES OUTDOORS 556 00:20:41,800 --> 00:20:44,200 AS I CAN WORKING IN THE YARD, 557 00:20:44,200 --> 00:20:46,000 GARDENING AND BASKING IN MOTHER 558 00:20:46,000 --> 00:20:46,240 NATURE. 559 00:20:46,240 --> 00:20:48,160 AT THE AGE OF 61 I STARTED 560 00:20:48,160 --> 00:20:50,160 LEARNING THE SPANISH LANGUAGE 561 00:20:50,160 --> 00:20:52,720 THROUGH AN APP ON MY PHONE. 562 00:20:52,720 --> 00:20:55,600 I'VE RENEWED MY INTEREST IN 563 00:20:55,600 --> 00:20:56,960 QUILTING AND BEADWORK. 564 00:20:56,960 --> 00:20:57,520 ANOTHER WAY TO FOCUS MY 565 00:20:57,520 --> 00:21:01,320 ENERGIES. 566 00:21:01,320 --> 00:21:03,480 WHAT I HAVE ESTABLISHED, THESE 567 00:21:03,480 --> 00:21:05,800 ARE AS MY PERSONAL GOALS I'M 568 00:21:05,800 --> 00:21:07,880 LEARNING MANY NEW THINGS. 569 00:21:07,880 --> 00:21:11,840 I REFUSE TO FEEL SORRY FOR 570 00:21:11,840 --> 00:21:12,080 MYSELF. 571 00:21:12,080 --> 00:21:14,760 I DO NOT WANT TO BE PITIED. 572 00:21:14,760 --> 00:21:17,240 I HAVE BECOME RESILIENT. 573 00:21:17,240 --> 00:21:18,360 ADHERING TO MY PERSONAL GOALS 574 00:21:18,360 --> 00:21:20,280 HAS ALLOWED ME TO ADAPT AND 575 00:21:20,280 --> 00:21:22,560 PERHAPS GROW DESPITE THE MANY 576 00:21:22,560 --> 00:21:22,880 CHALLENGES. 577 00:21:22,880 --> 00:21:24,480 I HAVE CHOSEN TO LIVE MY LIFE TO 578 00:21:24,480 --> 00:21:26,080 THE FULLEST. 579 00:21:26,080 --> 00:21:29,560 THANK YOU FOR LISTENING TO ME. 580 00:21:29,560 --> 00:21:40,080 ENJOY THE REST OF THE SUMMIT. 581 00:21:42,800 --> 00:21:46,040 >>THANK YOU TO THOSE MEMBERS OF 582 00:21:46,040 --> 00:21:47,240 THE LIVED EXPERIENCE PANEL I'M 583 00:21:47,240 --> 00:21:49,440 SURE I SPEAK FOR ALL OF US WHEN 584 00:21:49,440 --> 00:21:51,440 WE'RE REMINDED OF THE SENSE OF 585 00:21:51,440 --> 00:21:53,880 URGENCY AND INSPIRED BY THESE 586 00:21:53,880 --> 00:21:55,720 REMARKS FROM RITA HARRISON AND 587 00:21:55,720 --> 00:21:56,840 DR. LES BURGER. 588 00:21:56,840 --> 00:21:59,200 I WANT TO TRANSITION NOW TO 589 00:21:59,200 --> 00:22:01,640 WELCOMING REMARKS FROM NIA 590 00:22:01,640 --> 00:22:03,920 DEPUTY DIRECTOR, DR. AMY KELLEY 591 00:22:03,920 --> 00:22:07,160 AND FOLLOWING THAT REMARKS FROM 592 00:22:07,160 --> 00:22:10,480 DR. ELENA FAZI O. 593 00:22:10,480 --> 00:22:12,680 >>GOOD MORNING. 594 00:22:12,680 --> 00:22:13,920 WELCOME, EVERYONE. 595 00:22:13,920 --> 00:22:16,600 MY NAME IS AMY KELLEY. 596 00:22:16,600 --> 00:22:17,960 I'M THE DEPUTY DIRECTOR AT THE 597 00:22:17,960 --> 00:22:24,120 NATIONAL INSTITUTE ON AGING. 598 00:22:24,120 --> 00:22:24,920 AND THERE'S AN INCREDIBLE 599 00:22:24,920 --> 00:22:27,040 PROGRAM LINED UP AND THIS SUMMIT 600 00:22:27,040 --> 00:22:30,320 RESONATES WITH ME PERSONALLY AND 601 00:22:30,320 --> 00:22:31,400 PROFESSIONALLY. 602 00:22:31,400 --> 00:22:35,560 AS A GERIATRICIAN AND PALLIATIVE 603 00:22:35,560 --> 00:22:36,640 CARE PHYSICIAN AND RESEARCHER I 604 00:22:36,640 --> 00:22:38,520 WORKED TO IMPROVE THE LIVES OF 605 00:22:38,520 --> 00:22:40,160 PEOPLE WITH SERIOUS ILLNESS AND 606 00:22:40,160 --> 00:22:41,920 SUPPORT FAMILIES AND CAREGIVERS. 607 00:22:41,920 --> 00:22:45,600 AND WHY WE'RE ALL HERE TODAY. 608 00:22:45,600 --> 00:22:48,440 OVER THE COURSE OF SUMMIT. 609 00:22:48,440 --> 00:22:49,680 MILLIONS OF AMERICANS ARE LIVING 610 00:22:49,680 --> 00:22:51,960 WITH DEMENTIA AND MILLIONS MORE 611 00:22:51,960 --> 00:22:54,160 ARE PROVIDING CARE FOR THEIR 612 00:22:54,160 --> 00:22:55,240 LOVED ONES. 613 00:22:55,240 --> 00:22:56,440 ENSURING ALL OF THESE 614 00:22:56,440 --> 00:22:59,600 INDIVIDUALS HAVE ACCESS TO THE 615 00:22:59,600 --> 00:23:01,040 BEST POSSIBLE CARE AND THEIR 616 00:23:01,040 --> 00:23:02,280 LOVED ONES HAVE WHAT THEY NEED 617 00:23:02,280 --> 00:23:03,720 TO BE SUCCESSFUL IS A KEY 618 00:23:03,720 --> 00:23:08,400 PRIORITY. 619 00:23:08,400 --> 00:23:11,200 IN FACT, TWO GOALS OF THE 620 00:23:11,200 --> 00:23:12,520 NATIONAL PLAN TO ADDRESS 621 00:23:12,520 --> 00:23:14,040 ALZHEIMER'S DISEASE WHICH IS OUR 622 00:23:14,040 --> 00:23:15,720 NATION'S BLUEPRINT FOR REDUCING 623 00:23:15,720 --> 00:23:19,080 THE BURDEN OF ALZHEIMER'S AND 624 00:23:19,080 --> 00:23:25,400 RELATED DEMENTIAS THE CENTER FOR 625 00:23:25,400 --> 00:23:33,680 IMPROVING CARE FOR PEOPLE WITH 626 00:23:33,680 --> 00:23:35,000 DEMENTIA AND WITH OTHER NIH 627 00:23:35,000 --> 00:23:40,360 INSTITUTES AND CENTERS ARE 628 00:23:40,360 --> 00:23:42,920 IMPROVING THE CARE AND CARE 629 00:23:42,920 --> 00:23:43,200 GIVING. 630 00:23:43,200 --> 00:23:46,640 IN PARTICULAR, FUNDING FOR NIA 631 00:23:46,640 --> 00:23:48,560 HAS INCREASED SUBSTANTIALLY AND 632 00:23:48,560 --> 00:23:50,600 THIS INCREASED FUNDING HAS 633 00:23:50,600 --> 00:23:51,960 BENEFITTED DEMENTIA RESEARCH 634 00:23:51,960 --> 00:23:53,600 ACROSS THE BOARD INCLUDING THE 635 00:23:53,600 --> 00:23:56,120 WORK THAT'S FOCUSSED ON DEMENTIA 636 00:23:56,120 --> 00:23:58,160 CARE AND CARE GIVING. 637 00:23:58,160 --> 00:24:00,520 WHILE NIH HAS AND CONTINUES TO 638 00:24:00,520 --> 00:24:01,520 MAKE SIGNIFICANT INVESTMENTS IN 639 00:24:01,520 --> 00:24:03,680 THE CRITICAL AREAS, I'M 640 00:24:03,680 --> 00:24:05,080 ESPECIALLY EXCITED THESE 641 00:24:05,080 --> 00:24:07,360 INCREASES HAVE HELPED NIA TO 642 00:24:07,360 --> 00:24:13,520 SUPPORT EARLY CAREER AND NEW 643 00:24:13,520 --> 00:24:17,440 INVESTIGATORS. 644 00:24:17,440 --> 00:24:21,520 AND THERE WERE NEW AND EARLY 645 00:24:21,520 --> 00:24:23,480 YEAR RESEARCHERS AND EXCITED TO 646 00:24:23,480 --> 00:24:25,360 WELCOME THE NEARLY 500 OF YOU 647 00:24:25,360 --> 00:24:27,880 WHO IDENTIFIED AS NEW AND EARLY 648 00:24:27,880 --> 00:24:28,520 CAREER FOLKS IN ATTENDANCE WITH 649 00:24:28,520 --> 00:24:34,200 US TODAY. 650 00:24:34,200 --> 00:24:36,640 SO NIA FUNDS HUNDREDS OF 651 00:24:36,640 --> 00:24:37,720 CLINICAL TRIALS TO TEST NEW 652 00:24:37,720 --> 00:24:39,920 INTERVENTIONS AIMED AT 653 00:24:39,920 --> 00:24:41,560 PREVENTING AND TREATING 654 00:24:41,560 --> 00:24:42,880 ALZHEIMER'S AS WELL AS IMPROVING 655 00:24:42,880 --> 00:24:48,680 DEMENTIA CARE AND CARE GIVING. 656 00:24:48,680 --> 00:24:52,640 NIA SUPPORTS MORE THAN 200 657 00:24:52,640 --> 00:24:54,320 DEMENTIA CARE TRIALS WITH 658 00:24:54,320 --> 00:24:56,200 PROMISING INTERVENTIONS ACROSS 659 00:24:56,200 --> 00:24:58,000 THE SPECTRUM OF CARE SETTING AND 660 00:24:58,000 --> 00:24:59,000 STAGES OF ILLNESS. 661 00:24:59,000 --> 00:25:00,760 THAT BRINGS ME BACK TO WHY I'M 662 00:25:00,760 --> 00:25:02,520 EXCITED TO BE HERE WITH YOU 663 00:25:02,520 --> 00:25:02,800 TODAY. 664 00:25:02,800 --> 00:25:05,040 MANY OF OUR INVESTMENTS HAVE 665 00:25:05,040 --> 00:25:07,720 COME IN RESPONSE TO THE GAPS AND 666 00:25:07,720 --> 00:25:09,280 OPPORTUNITIES THAT ARE 667 00:25:09,280 --> 00:25:10,960 IDENTIFIED FROM INPUT PROVIDED 668 00:25:10,960 --> 00:25:12,520 AT THE SUMMIT. 669 00:25:12,520 --> 00:25:14,840 SO IN SHORT THIS SUMMIT IS 670 00:25:14,840 --> 00:25:17,000 REALLY WHERE THE FUTURE 671 00:25:17,000 --> 00:25:19,680 DIRECTIONS FOR DEMENTIA CARE AND 672 00:25:19,680 --> 00:25:22,240 RESEARCH EMERGED. 673 00:25:22,240 --> 00:25:25,320 AS WE CONSIDER THE FUTURE, IT'S 674 00:25:25,320 --> 00:25:26,680 ALSO IMPORTANT WE DO SO THROUGH 675 00:25:26,680 --> 00:25:28,200 THE LENS OF HEALTH EQUITY. 676 00:25:28,200 --> 00:25:30,960 MANY OF MY TOP GOALS AS NIA 677 00:25:30,960 --> 00:25:33,080 DEPUTY DIRECTOR REMOVAL AROUND 678 00:25:33,080 --> 00:25:38,400 IMPROVING HEALTH EQUITY AND 679 00:25:38,400 --> 00:25:39,400 UNDERSTANDING THE LIFE LONG 680 00:25:39,400 --> 00:25:41,440 DIFFERENCES IN SOCIAL 681 00:25:41,440 --> 00:25:42,920 EXPERIENCES AND ATTRACTING 682 00:25:42,920 --> 00:25:44,640 TALENTED SCIENTISTS FROM THE 683 00:25:44,640 --> 00:25:45,640 WIDEST RANGE OF DIVERSE 684 00:25:45,640 --> 00:25:48,680 PERSPECTIVES TO THE FIELD OF 685 00:25:48,680 --> 00:25:52,200 AGING AND DEMENTIA RESEARCH. 686 00:25:52,200 --> 00:25:54,600 NIH IS DEEPLY COMMITTED TO THE 687 00:25:54,600 --> 00:25:54,920 PRINCIPLES. 688 00:25:54,920 --> 00:25:56,960 THROUGHOUT THE PLAN FOR THIS 689 00:25:56,960 --> 00:25:58,880 SUMMIT WE STRIVE TO BE ENSURE A 690 00:25:58,880 --> 00:26:00,320 WIDE RANGE OF INDIVIDUALS 691 00:26:00,320 --> 00:26:02,360 IMPACTED BY INDIVIDUALS ARE 692 00:26:02,360 --> 00:26:03,240 REPRESENTED HERE. 693 00:26:03,240 --> 00:26:09,320 AND THE COMMUNITY OF STAKE 694 00:26:09,320 --> 00:26:11,560 HOLDERS FOCUSSED ON ALL WE'LL 695 00:26:11,560 --> 00:26:12,760 ONLY ACCOMPLISH MEANINGFUL AND 696 00:26:12,760 --> 00:26:14,520 EFFECTIVE CHANGE BY INTEGRATING 697 00:26:14,520 --> 00:26:17,840 THE BROADEST RANGE OF PROSPECTS 698 00:26:17,840 --> 00:26:18,480 IN RESEARCH. 699 00:26:18,480 --> 00:26:20,400 AND ENGAGING INDIVIDUALS FROM 700 00:26:20,400 --> 00:26:22,040 UNDER SERVED AND UNDER 701 00:26:22,040 --> 00:26:23,680 REPRESENTED BACKGROUNDS IN THE 702 00:26:23,680 --> 00:26:24,640 ENTIRETY OF THE RESEARCH 703 00:26:24,640 --> 00:26:24,880 PROCESS. 704 00:26:24,880 --> 00:26:27,120 WE MUST KEEP THIS AT THE 705 00:26:27,120 --> 00:26:29,800 FOREFRONT AS WE ENGAGE IN OUR 706 00:26:29,800 --> 00:26:32,000 WORK DURING THE SUMMIT. 707 00:26:32,000 --> 00:26:33,920 I KNOW FROM MY PROFESSIONAL 708 00:26:33,920 --> 00:26:34,680 EXPERIENCES HOW IMPORTANT CARE 709 00:26:34,680 --> 00:26:37,200 AND CARE GIVING ARE AND THE WORK 710 00:26:37,200 --> 00:26:40,600 REQUIRE A TEAM CLINICIANS, 711 00:26:40,600 --> 00:26:42,280 RESEARCHERS, ADVOCATES, 712 00:26:42,280 --> 00:26:43,520 PROFESSIONAL CAREGIVERS AND 713 00:26:43,520 --> 00:26:45,280 DEVOTED CARE PARTNERS AND AT THE 714 00:26:45,280 --> 00:26:49,680 CENTER THOSE WHO ARE LIVING WITH 715 00:26:49,680 --> 00:26:50,560 DEMENTIA. 716 00:26:50,560 --> 00:26:52,080 YOUR INPUT WILL HELP INFORM THE 717 00:26:52,080 --> 00:26:53,520 FUTURE OF DEMENTIA CARE AND 718 00:26:53,520 --> 00:26:55,000 RESEARCH FOR YEARS TO COME. 719 00:26:55,000 --> 00:26:57,480 AND I ACKNOWLEDGE THIS IS NOT A 720 00:26:57,480 --> 00:27:01,040 TASK FOR THE FAINT OF HEART. 721 00:27:01,040 --> 00:27:03,040 IT'S DIFFICULT, IT'S COMPLEX AND 722 00:27:03,040 --> 00:27:05,920 IT'S NECESSARY. 723 00:27:05,920 --> 00:27:07,760 SO I WANT TO EXPRESS MY 724 00:27:07,760 --> 00:27:13,120 GRATITUDE TO ALL OF YOU TODAY, 725 00:27:13,120 --> 00:27:15,800 TO THE ORGANIZERS WHO PUT IN 726 00:27:15,800 --> 00:27:18,000 HOURS TO MAKE THE SUMMIT HAPPEN. 727 00:27:18,000 --> 00:27:19,760 THANK YOU FOR COMING TOGETHER TO 728 00:27:19,760 --> 00:27:24,280 DO THE WORK THAT'S NECESSARY TO 729 00:27:24,280 --> 00:27:26,680 ENSURE THE DEMENTIA CARE OF THE 730 00:27:26,680 --> 00:27:37,120 FUTURE MEETS THE NEEDS OF ALL. 731 00:27:37,120 --> 00:27:40,960 >>THANK YOU, DR. KELLY. 732 00:27:40,960 --> 00:27:42,600 -- KELLEY AND THANK YOU ALL FOR 733 00:27:42,600 --> 00:27:43,240 BEING HERE. 734 00:27:43,240 --> 00:27:47,760 I'M ELENA FAZIO IN THE DIVISION 735 00:27:47,760 --> 00:27:50,600 OF BEHAVIORAL AND SOCIAL AT NIA. 736 00:27:50,600 --> 00:27:53,240 I LOOK FORWARD TO SHARING WITH 737 00:27:53,240 --> 00:27:55,200 YOU SOME OF THE IMPORTANT 738 00:27:55,200 --> 00:27:56,160 DEMENTIA CARE AND CARE GIVING 739 00:27:56,160 --> 00:27:58,000 RESEARCH THAT'S ADVANCED THE 740 00:27:58,000 --> 00:28:00,680 FIELD IN RECENT YEARS AND TALK 741 00:28:00,680 --> 00:28:04,200 ABOUT SIGNIFICANT NIA SCIENTIFIC 742 00:28:04,200 --> 00:28:04,760 INVESTMENTS AND LOOK TO THE 743 00:28:04,760 --> 00:28:08,640 FUTURE. 744 00:28:08,640 --> 00:28:09,960 AFTER BRIEFLY TOUCHING ON 745 00:28:09,960 --> 00:28:12,000 TRENDS, I'M GOING HIGHLIGHT A 746 00:28:12,000 --> 00:28:14,080 FEW THEMES TODAY. 747 00:28:14,080 --> 00:28:17,440 THAT IS NIA'S COMMITMENT TO 748 00:28:17,440 --> 00:28:18,280 FACILITATING RIGOROUS 749 00:28:18,280 --> 00:28:19,600 DEVELOPMENT AND SUPPORTING THE 750 00:28:19,600 --> 00:28:21,160 DEVELOPMENT AND USE OF RICH DATA 751 00:28:21,160 --> 00:28:23,200 INFRASTRUCTURE TO STUDY CARE AND 752 00:28:23,200 --> 00:28:25,000 CARE GIVING AND OUR COMMITMENT 753 00:28:25,000 --> 00:28:28,040 TO HEALTH COMMITTEE AND HEALTH 754 00:28:28,040 --> 00:28:32,120 DISPARITIES INCLUDING EXAM 755 00:28:32,120 --> 00:28:34,760 INNING THE LANDSCAPE FOR THOSE 756 00:28:34,760 --> 00:28:37,600 LIVING WITH DEMENTIA AND CARE 757 00:28:37,600 --> 00:28:38,960 PARTNERS. 758 00:28:38,960 --> 00:28:41,280 WE KNOW THE WORDS WE USE MATTER 759 00:28:41,280 --> 00:28:43,120 AND NOMENCLATURE. 760 00:28:43,120 --> 00:28:44,720 YOU'LL HEAR ME REFER TO CARE 761 00:28:44,720 --> 00:28:46,160 PARTNERS AND CAREGIVERS BY WHICH 762 00:28:46,160 --> 00:28:48,360 I MEAN FAMILY AND OTHER UNPAID 763 00:28:48,360 --> 00:28:50,240 CARE PARTNERS TO A PERSON LIVING 764 00:28:50,240 --> 00:28:51,600 WITH DEMENTIA. 765 00:28:51,600 --> 00:28:54,320 YOU'LL HEAR ME USE THE PHRASE, 766 00:28:54,320 --> 00:28:56,920 PERSONS LIVING WITH DEMENTIA 767 00:28:56,920 --> 00:28:58,120 INCLUDING THOSE LIVING WITH 768 00:28:58,120 --> 00:29:00,720 COGNITIVE SYMPTOMS AND MILD 769 00:29:00,720 --> 00:29:02,680 COGNITIVE IMPAIRMENT OR 770 00:29:02,680 --> 00:29:04,520 DIAGNOSED ALZHEIMER'S DISEASE OR 771 00:29:04,520 --> 00:29:04,800 DEMENTIA. 772 00:29:04,800 --> 00:29:08,440 I'LL USE PATIENT WHEN THE 773 00:29:08,440 --> 00:29:09,800 RESEARCHERS USE THAT LANGUAGE TO 774 00:29:09,800 --> 00:29:11,040 REFER TO THOSE RECEIVE SERVICES 775 00:29:11,040 --> 00:29:14,800 IN HEALTH CARE SETTINGS. 776 00:29:14,800 --> 00:29:20,240 A GREAT DEAL OF NIA'S INVESTMENT 777 00:29:20,240 --> 00:29:23,120 IS MANAGED BY THE DIVISION OF 778 00:29:23,120 --> 00:29:25,040 BEHAVIORAL AND SOCIAL RESEARCH. 779 00:29:25,040 --> 00:29:27,000 IT INCLUDES INTERVENTION STUDIES 780 00:29:27,000 --> 00:29:28,360 AND OTHER RESEARCH SUCH AS 781 00:29:28,360 --> 00:29:31,480 PROJECTS AIMED AT UNDERSTANDING 782 00:29:31,480 --> 00:29:33,000 CAREGIVER WELL BEING, FAMILY AND 783 00:29:33,000 --> 00:29:34,760 SOCIETAL COST OF CARE OR 784 00:29:34,760 --> 00:29:35,440 DISPARITIES IN CARE ACCESS USE 785 00:29:35,440 --> 00:29:41,120 OR QUALITY. 786 00:29:41,120 --> 00:29:43,800 THIS PORTFOLIO OF DEMENTIA CARE 787 00:29:43,800 --> 00:29:45,120 HAS BEEN PRODUCTIVE. 788 00:29:45,120 --> 00:29:48,840 THESE AWARDS HAVE COLLECTIVELY 789 00:29:48,840 --> 00:29:50,120 PUBLISHED MORE THAN 2,000 790 00:29:50,120 --> 00:29:53,720 RESEARCH ARTICLES AND OTHER 791 00:29:53,720 --> 00:29:55,160 PUBLICATIONS. 792 00:29:55,160 --> 00:29:57,040 THE NIA MISSION INCLUDES 793 00:29:57,040 --> 00:29:59,280 SUPPORTING AND FACILITATING 794 00:29:59,280 --> 00:29:59,960 INTERVENTION RESEARCH TO 795 00:29:59,960 --> 00:30:02,600 DETERMINE WHAT WORKS, WHY, FOR 796 00:30:02,600 --> 00:30:04,720 WHOM AND UNDER WHAT 797 00:30:04,720 --> 00:30:05,280 CIRCUMSTANCES. 798 00:30:05,280 --> 00:30:07,800 IT IS ALSO IMPORTANT TO CONSIDER 799 00:30:07,800 --> 00:30:10,480 IMPLEMENTATION AND REAL WORD 800 00:30:10,480 --> 00:30:13,040 CONTEXT WITH THE IMPLEMENTATION 801 00:30:13,040 --> 00:30:14,640 OF DEVELOPMENT. 802 00:30:14,640 --> 00:30:17,480 SOME OF THE MOST COMMON TOPICS 803 00:30:17,480 --> 00:30:19,120 OF INTERVENTION STUDIES INCLUDE 804 00:30:19,120 --> 00:30:20,120 THESE YOU SEE HERE. 805 00:30:20,120 --> 00:30:21,760 FOR EXAMPLE, INTERVENTIONS 806 00:30:21,760 --> 00:30:23,720 FOCUSSED ON IMPROVING DEMENTIA 807 00:30:23,720 --> 00:30:25,360 CARE WELL BEING AND 808 00:30:25,360 --> 00:30:27,560 INTERVENTIONS ON ADDRESSING THE 809 00:30:27,560 --> 00:30:29,760 SYMPTOMS OF PERSONS LIVING WITH 810 00:30:29,760 --> 00:30:30,000 DEMENTIA. 811 00:30:30,000 --> 00:30:32,880 MOST PROJECTS ARE INVESTIGATOR 812 00:30:32,880 --> 00:30:34,400 INITIATED BUT A GOOD PORTION ARE 813 00:30:34,400 --> 00:30:36,680 IN RESPONSE TO TARGETED FUNDING 814 00:30:36,680 --> 00:30:37,640 OPPORTUNITIES, NOTICES MUCH 815 00:30:37,640 --> 00:30:38,840 SPECIAL INTEREST OR CALLS FOR 816 00:30:38,840 --> 00:30:45,400 PILOT STUDIES FROM CENTERS. 817 00:30:45,400 --> 00:30:46,680 THE BASIC MAJORITY TAKE PLACE IN 818 00:30:46,680 --> 00:30:49,920 THE COMMUNITY AND A NUMBER 819 00:30:49,920 --> 00:30:51,400 HAPPEN IN ASSISTED LIVING 820 00:30:51,400 --> 00:30:53,480 FACILITIES OR NURSING HOMES. 821 00:30:53,480 --> 00:30:55,720 PRIMARY CARE SETTINGS HAVE 822 00:30:55,720 --> 00:30:58,920 EMERGED AS AN INTERVENTION 823 00:30:58,920 --> 00:30:59,880 DELIVERY AS WELL AND WE'LL HEAR 824 00:30:59,880 --> 00:31:02,440 IN SOME PRESENTATIONS ABOUT THE 825 00:31:02,440 --> 00:31:04,040 POTENTIAL FOR MORE WORK TO BE 826 00:31:04,040 --> 00:31:05,560 DONE IN PRIMARY CARE AS WELL AS 827 00:31:05,560 --> 00:31:08,200 OTHER MEDICAL SETTINGS. 828 00:31:08,200 --> 00:31:10,200 THE MAJORITY OF INTERVENTIONS 829 00:31:10,200 --> 00:31:12,000 ARE DIRECTED AT PAID FAMILY CARE 830 00:31:12,000 --> 00:31:13,960 GIVES OR THE CARE WORKFORCE IN 831 00:31:13,960 --> 00:31:16,760 YELLOW OR A CAREGIVER AND PERSON 832 00:31:16,760 --> 00:31:19,880 LIVING WITH DEMENTIA AS A DIAD 833 00:31:19,880 --> 00:31:24,640 IN ORANGE. 834 00:31:24,640 --> 00:31:26,600 NIA SUPPORTS INTERVENTION 835 00:31:26,600 --> 00:31:29,720 DEVELOPMENT IN LINE WITH THE NIA 836 00:31:29,720 --> 00:31:31,120 STAGE MODEL. 837 00:31:31,120 --> 00:31:33,960 PREVIOUS CARE SUMMITS AND 838 00:31:33,960 --> 00:31:36,000 NATIONAL ACADEMIES CONSENSUS 839 00:31:36,000 --> 00:31:37,520 PANEL POINT TO THE NEED FOR 840 00:31:37,520 --> 00:31:39,280 RIGOROUS INTERVENTION 841 00:31:39,280 --> 00:31:40,080 DEVELOPMENT. 842 00:31:40,080 --> 00:31:41,000 WITHOUT UNDERSTANDING THE KEY 843 00:31:41,000 --> 00:31:42,600 COMPONENTS OF AN INTERVENTION, 844 00:31:42,600 --> 00:31:45,440 SCALING UP OR ADAPTING AN 845 00:31:45,440 --> 00:31:46,920 INTERVENTION IN A VARIETY OF 846 00:31:46,920 --> 00:31:48,040 REAL WORLD SETTINGS IS 847 00:31:48,040 --> 00:31:48,320 DIFFICULT. 848 00:31:48,320 --> 00:31:51,880 WE OFTEN DO NOT KNOW WHY A 849 00:31:51,880 --> 00:31:52,680 MULTI-COMPONENT INTERVENTION 850 00:31:52,680 --> 00:31:55,480 WORKS OR DOESN'T WORK. 851 00:31:55,480 --> 00:31:57,080 NIA HAS BEEN STRENGTHENING AND 852 00:31:57,080 --> 00:31:58,160 EXPANDING THE INFRASTRUCTURE TO 853 00:31:58,160 --> 00:31:59,720 SUPPORT INTERVENTION DEVELOPMENT 854 00:31:59,720 --> 00:32:02,920 IN ACCORDANCE WITH THE NIA STAGE 855 00:32:02,920 --> 00:32:03,680 MODEL. 856 00:32:03,680 --> 00:32:05,520 YOU'LL HEAR MORE ABOUT THE KEY 857 00:32:05,520 --> 00:32:06,360 CROSS CUTTING THEME THROUGHOUT 858 00:32:06,360 --> 00:32:09,480 THE SUMMIT. 859 00:32:09,480 --> 00:32:12,960 WE CURRENTLY HAVE FOUR DEMENTIA 860 00:32:12,960 --> 00:32:14,400 CARE AND CARE GIVING 861 00:32:14,400 --> 00:32:15,400 TRANSLATIONAL RESEARCH CENTERS 862 00:32:15,400 --> 00:32:17,360 WHICH FUND PILOT INTERVENTION 863 00:32:17,360 --> 00:32:19,080 STUDIES IN ACCORDANCE WITH A 864 00:32:19,080 --> 00:32:20,720 STAGE MODEL. 865 00:32:20,720 --> 00:32:22,040 NIA PUBLISHED FUNDING 866 00:32:22,040 --> 00:32:23,840 OPPORTUNITIES TO CONTINUE AND 867 00:32:23,840 --> 00:32:28,520 EXPAND THE ALZHEIMER'S DISEASE 868 00:32:28,520 --> 00:32:31,640 FOCUSSED ROYBAL CENTERS AND I'LL 869 00:32:31,640 --> 00:32:33,520 ILLUSTRATE THE TYPE OF RESEARCH 870 00:32:33,520 --> 00:32:38,480 BEING DONE AT DIFFERENT STAGES. 871 00:32:38,480 --> 00:32:40,040 POOR SLEEP IS A DOCUMENTED 872 00:32:40,040 --> 00:32:41,560 PROBLEM FOR MANY PEOPLE LIVING 873 00:32:41,560 --> 00:32:43,680 WITH DEMENTIA AS WELL AS FOR THE 874 00:32:43,680 --> 00:32:45,760 CAREGIVERS WHO LIVE WITH THEM. 875 00:32:45,760 --> 00:32:48,200 IN THIS EXAMPLE, INVESTIGATOR, 876 00:32:48,200 --> 00:32:50,200 DR. SUNG, STARTED WITH STAGE 1 877 00:32:50,200 --> 00:32:52,880 WORK IN A CAREER DEVELOPMENT 878 00:32:52,880 --> 00:33:02,600 AWARD TO AND PILOT THE NIGHTTIME 879 00:33:02,600 --> 00:33:05,840 INSOMNIA TREATMENT AND EDUCATION 880 00:33:05,840 --> 00:33:07,720 ALZHEIMER'S DISEASE AS A DIAD 881 00:33:07,720 --> 00:33:10,240 AND RECEIVED A RESEARCH GRANT TO 882 00:33:10,240 --> 00:33:12,440 DO STAGE 2 WORK INVOLVING 883 00:33:12,440 --> 00:33:15,560 EFFICACY TESTING UNDER IDEAL 884 00:33:15,560 --> 00:33:15,840 CONDITIONS. 885 00:33:15,840 --> 00:33:18,880 EVEN IN THE EARLY STAGES THEY 886 00:33:18,880 --> 00:33:21,720 SHOULD THINK OF IMPLEMENTABILITY 887 00:33:21,720 --> 00:33:23,000 IN REAL WORLD SETTINGS. 888 00:33:23,000 --> 00:33:24,640 UNDERSTANDING WHAT THE KEY 889 00:33:24,640 --> 00:33:27,960 COMPONENTS ARE AND ENSURING TRE 890 00:33:27,960 --> 00:33:29,280 TRAINING IS CLEAR SO 891 00:33:29,280 --> 00:33:30,640 INTERVENTION CAN BE PROVIDED BY 892 00:33:30,640 --> 00:33:32,640 LATE PROVIDERS. 893 00:33:32,640 --> 00:33:33,680 THE STAGE 2 CLINICAL TRIAL IS 894 00:33:33,680 --> 00:33:38,120 ONGOING. 895 00:33:38,120 --> 00:33:40,480 THIS EXAMPLE INCLUDES ASPECTS OF 896 00:33:40,480 --> 00:33:42,920 STAGE 1 AND STAGE 4 WORK. 897 00:33:42,920 --> 00:33:45,520 NIH STAGE MODEL IS NOT LINEAR. 898 00:33:45,520 --> 00:33:48,720 ADAPTATION AND TESTING FIDELITY 899 00:33:48,720 --> 00:33:51,000 AND DETERMINING THE INGREDIENTS 900 00:33:51,000 --> 00:33:52,280 CAN HAPPEN THROUGHOUT 901 00:33:52,280 --> 00:33:52,560 DEVELOPMENT. 902 00:33:52,560 --> 00:33:54,040 THEY CONDUCTED STUDIES THAT 903 00:33:54,040 --> 00:34:01,480 BUILD ON EACH OTHER TO TEST THE 904 00:34:01,480 --> 00:34:04,760 ALIVIADO PROGRAM FOR HOSPICE AND 905 00:34:04,760 --> 00:34:06,160 PALLIATIVE CARE. 906 00:34:06,160 --> 00:34:07,720 FINDINGS UNDER THE STAGE 4 907 00:34:07,720 --> 00:34:10,480 PRAGMATIC TRIAL BEING CONDUCTED 908 00:34:10,480 --> 00:34:12,000 IN 25 HOSPITAL CARE AGENCIES TO 909 00:34:12,000 --> 00:34:14,840 TEST THE EFFECTIVENESS OF THE 910 00:34:14,840 --> 00:34:15,560 INTERVENTION WHILE ALSO 911 00:34:15,560 --> 00:34:18,280 ASSESSING ISSUES OF SCALING UP 912 00:34:18,280 --> 00:34:19,200 AND SUSTAINABILITY. 913 00:34:19,200 --> 00:34:23,360 THE WORK IS ONGOING AS WELL. 914 00:34:23,360 --> 00:34:24,720 IN ANOTHER EXAMPLE OF 915 00:34:24,720 --> 00:34:25,920 INTERVENTION RESEARCH ALIGNED 916 00:34:25,920 --> 00:34:28,200 WITH THE STAGE MODEL, I'LL 917 00:34:28,200 --> 00:34:30,200 HIGHLIGHT A STAGE 4 AND 5 918 00:34:30,200 --> 00:34:33,200 SUCCESS STORY. 919 00:34:33,200 --> 00:34:36,200 STAGE 5 EXAMINES IMPLEMENTATION 920 00:34:36,200 --> 00:34:37,680 ACROSS SETTINGS. 921 00:34:37,680 --> 00:34:38,760 STUDIES OF THE UCLA ALZHEIMER'S 922 00:34:38,760 --> 00:34:41,600 AND DEMENTIA CARE PROGRAM LED BY 923 00:34:41,600 --> 00:34:44,280 DR. RUBEN DEMONSTRATED POSITIVE 924 00:34:44,280 --> 00:34:47,000 OUTCOMES FOR PATIENTS AND 925 00:34:47,000 --> 00:34:47,320 CAREGIVERS. 926 00:34:47,320 --> 00:34:49,320 THE ALZHEIMER'S AND DEMENTIA 927 00:34:49,320 --> 00:34:52,400 CARE PROGRAM IS A COMPREHENSIVE 928 00:34:52,400 --> 00:34:54,160 MODEL RECOGNIZING CARE IS A LONG 929 00:34:54,160 --> 00:34:56,600 JOURNEY AND MEMBERS OF THE DIAD 930 00:34:56,600 --> 00:34:58,520 NEED SERVICES AND SUPPORTS. 931 00:34:58,520 --> 00:35:00,560 THE PROGRAM IS BASED IN A HEALTH 932 00:35:00,560 --> 00:35:02,680 SYSTEM BUT INCORPORATES 933 00:35:02,680 --> 00:35:04,800 MEANINGFUL TIES TO 934 00:35:04,800 --> 00:35:05,840 COMMUNITY-BASED ORGANIZATIONS. 935 00:35:05,840 --> 00:35:08,480 AND SPECIALISTS WHO ARE 936 00:35:08,480 --> 00:35:11,360 TYPICALLY NURSE PRACTITIONERS OR 937 00:35:11,360 --> 00:35:13,200 PHYSICIAN ASSISTANTS ARE A KEY 938 00:35:13,200 --> 00:35:14,920 FEATURE AND CO-MANAGE CARE WITH 939 00:35:14,920 --> 00:35:16,920 OTHER PROVIDERS AND THE TEAM 940 00:35:16,920 --> 00:35:18,960 AFTER ONE YEAR OF THE PROGRAM, 941 00:35:18,960 --> 00:35:21,120 BEHAVIORAL AND DEPRESSIVE 942 00:35:21,120 --> 00:35:22,320 SYMPTOMS DECREASED FOR PERSONS 943 00:35:22,320 --> 00:35:25,960 LIVING WITH DEMENTIA AND 944 00:35:25,960 --> 00:35:26,760 DISTRESS, STRAIN AND SYMPTOMS 945 00:35:26,760 --> 00:35:31,800 DECREASED FOR CAREGIVERS. 946 00:35:31,800 --> 00:35:34,400 IN ADDITION TO THE POSITIVE 947 00:35:34,400 --> 00:35:35,400 OUTCOMES FOR CAREGIVERS AND 948 00:35:35,400 --> 00:35:38,840 THOSE LIVING WITH DEMENTIA. 949 00:35:38,840 --> 00:35:41,360 AN EXTERNAL EVALUATION FOUND 950 00:35:41,360 --> 00:35:43,560 DECREASES AMONG THE TYPES OF 951 00:35:43,560 --> 00:35:44,800 CARE WE HOPE TO PROVIDE. 952 00:35:44,800 --> 00:35:49,120 I SHOULD SAY WE HOPE TO AVOID. 953 00:35:49,120 --> 00:35:51,880 SUCH AS HOSPITALIZATIONS AND 954 00:35:51,880 --> 00:35:53,560 E.R. VISITS WHICH LOWERED 955 00:35:53,560 --> 00:35:56,000 MEDICARE COST AND FOUND AN 956 00:35:56,000 --> 00:35:57,680 INCREASE IN HOSPICE USE IN THE 957 00:35:57,680 --> 00:35:59,720 LAST SIX MONTHS OF LIFE. 958 00:35:59,720 --> 00:36:02,160 WITH THE IMPROVED OUTCOMES AND 959 00:36:02,160 --> 00:36:03,960 COST SAVINGS THE TEAM TURNED 960 00:36:03,960 --> 00:36:07,080 TOWARDS DISSEMINATION EFFORTS. 961 00:36:07,080 --> 00:36:10,840 NIA PROVIDED FUNDING FOR A 962 00:36:10,840 --> 00:36:13,320 PRAGMATIC TRIAL TO STUDY 963 00:36:13,320 --> 00:36:14,480 DISSEMINATION OF THE PROGRAM TO 964 00:36:14,480 --> 00:36:17,360 FOUR HEALTH SYSTEM SITES. 965 00:36:17,360 --> 00:36:21,040 THESE EARLY ADOPTER SITES HAD 966 00:36:21,040 --> 00:36:23,480 LESSONS LEARNED AND THREE 967 00:36:23,480 --> 00:36:25,000 ELEMENTS ROSE TO THE TOP AS 968 00:36:25,000 --> 00:36:27,480 IMPORTANT FACILITATORS. 969 00:36:27,480 --> 00:36:29,560 ENGAGEMENT FROM SITE LEADERS, 970 00:36:29,560 --> 00:36:40,120 THE MULTI-FASETED ROLES OF 971 00:36:42,720 --> 00:36:43,280 EXPERTS AND PAYMENT MODELS TO 972 00:36:43,280 --> 00:36:45,920 COVER THE SERVICE AND PATH TO 973 00:36:45,920 --> 00:36:47,320 SUSTAIN THE MODEL INTO THE 974 00:36:47,320 --> 00:36:49,720 FUTURE. 975 00:36:49,720 --> 00:36:50,840 YOU'LL HEAR A LITTLE BIT MORE 976 00:36:50,840 --> 00:36:51,440 ABOUT THE CARE LATER IN THE 977 00:36:51,440 --> 00:36:56,280 SUMMIT. 978 00:36:56,280 --> 00:36:58,240 THE JOHN A. HARTFORD FOUNDATION 979 00:36:58,240 --> 00:36:59,920 DISSEMINATES THE PROGRAM TO MORE 980 00:36:59,920 --> 00:37:02,480 SITES ACROSS THE U.S. 981 00:37:02,480 --> 00:37:04,280 THE TEAM CREATED TECHNICAL 982 00:37:04,280 --> 00:37:06,000 ASSISTANCE RESOURCES TO DO THE 983 00:37:06,000 --> 00:37:07,360 DISSEMINATION WORK. 984 00:37:07,360 --> 00:37:09,520 THE PROGRAM HAS BEEN IMPLEMENTED 985 00:37:09,520 --> 00:37:14,400 IN 18 SITES TO DATE AND PLAN TO 986 00:37:14,400 --> 00:37:17,480 EXPAND BY END OF 2025 REACHING 987 00:37:17,480 --> 00:37:19,120 TENS OF THOUSANDS LIVING WITH 988 00:37:19,120 --> 00:37:19,640 DEMENTIA AND THEIR CARE 989 00:37:19,640 --> 00:37:22,640 PARTNERS. 990 00:37:22,640 --> 00:37:28,520 ONE OF THE FLAGSHIP INVESTMENTS 991 00:37:28,520 --> 00:37:34,000 IS A COLLABORATIVE TO CONDUCT 992 00:37:34,000 --> 00:37:35,880 EMBEDDED TRIALS WITHIN HEALTH 993 00:37:35,880 --> 00:37:36,680 CARE SYSTEMS. 994 00:37:36,680 --> 00:37:38,600 THE WORD MEANS THE INTERVENTIONS 995 00:37:38,600 --> 00:37:41,800 ARE BUILT AND TESTED IN REAL 996 00:37:41,800 --> 00:37:43,200 WORLD SETTINGS USING EXISTING 997 00:37:43,200 --> 00:37:46,440 WORK FLOWS AND ELECTRONIC 998 00:37:46,440 --> 00:37:47,360 RECORDS AND STAFFING IN PLACE 999 00:37:47,360 --> 00:37:48,600 WHICH MEANS THE INTERVENTIONS 1000 00:37:48,600 --> 00:37:50,840 ARE MORE LIKELY TO BE SCALABLE 1001 00:37:50,840 --> 00:37:55,200 AND IMPLEMENTABLE AND OF COURSE 1002 00:37:55,200 --> 00:37:55,920 SUSTAINABLE. 1003 00:37:55,920 --> 00:37:57,640 THE IMPACT COLLABORATORY 1004 00:37:57,640 --> 00:37:59,480 PROVIDES TRAINING, FUNDING, 1005 00:37:59,480 --> 00:38:01,880 KNOWLEDGE REPOSITORY AND 1006 00:38:01,880 --> 00:38:04,280 PARTNERSHIPS WITH SYSTEMS ACROSS 1007 00:38:04,280 --> 00:38:04,840 THE U.S. 1008 00:38:04,840 --> 00:38:06,320 THE TRIAL FUNDING AND RESOURCES 1009 00:38:06,320 --> 00:38:08,160 ARE IN ALIGNMENT WITH THE NIH 1010 00:38:08,160 --> 00:38:13,560 STAGE MODEL. 1011 00:38:13,560 --> 00:38:16,160 THESE ARE EXAMPLE GUIDES FOR 1012 00:38:16,160 --> 00:38:17,440 INVESTIGATORS DOING PRAGMATIC 1013 00:38:17,440 --> 00:38:17,920 CLINICAL TRIALS. 1014 00:38:17,920 --> 00:38:20,480 BEST PRACTICES FOR INTEGRATING 1015 00:38:20,480 --> 00:38:23,800 HEALTH EQUITY CONSIDERATIONS. 1016 00:38:23,800 --> 00:38:25,240 IMPACT COLLABORATORY 1017 00:38:25,240 --> 00:38:26,200 INVESTIGATORS PROVIDE 1018 00:38:26,200 --> 00:38:27,240 CONSULTATIONS, TRAINING AND 1019 00:38:27,240 --> 00:38:28,600 CAREER DEVELOPMENT SUPPORT. 1020 00:38:28,600 --> 00:38:31,480 ALL OF WHICH SERVE TO GROW 1021 00:38:31,480 --> 00:38:32,880 EXPERTISE IN THE FIELD AND 1022 00:38:32,880 --> 00:38:34,080 PROVIDE TRANSPARENT PUBLICLY 1023 00:38:34,080 --> 00:38:39,920 AVAILABLE RESOURCES. 1024 00:38:39,920 --> 00:38:42,640 ONE IMPACT COLLABORATIVE 1025 00:38:42,640 --> 00:38:44,880 INITIATE IS THE LONG-TERM CARE 1026 00:38:44,880 --> 00:38:47,840 COOPERATIVE THE LARGEST DATABASE 1027 00:38:47,840 --> 00:38:49,120 OF ELECTRONIC HEALTH RECORD DATA 1028 00:38:49,120 --> 00:38:51,160 FROM NURSING HOMES IN THE U.S. 1029 00:38:51,160 --> 00:38:54,320 THE LTC HAS A MISSION TO IMPROVE 1030 00:38:54,320 --> 00:38:58,000 THE QUALITY OF CARE IN NURSED 1031 00:38:58,000 --> 00:38:59,760 FACILITIES BY COMPILING THE DATA 1032 00:38:59,760 --> 00:39:02,720 ON NURSING HOME RESIDENTS 1033 00:39:02,720 --> 00:39:03,040 NATIONWIDE. 1034 00:39:03,040 --> 00:39:04,600 HALF OF WHOM ARE LIVING WITH 1035 00:39:04,600 --> 00:39:06,080 DEMENTIA TRANSLATE THE DATA INTO 1036 00:39:06,080 --> 00:39:07,880 INFORMATION THAT IS ACCESSIBLE 1037 00:39:07,880 --> 00:39:08,720 AND ACTIONABLE. 1038 00:39:08,720 --> 00:39:10,880 THEY HAVE EXCEEDED THEIR 1039 00:39:10,880 --> 00:39:12,760 ORIGINAL GOAL TO INCLUDE 100 1040 00:39:12,760 --> 00:39:14,320 NURSING HOMES. 1041 00:39:14,320 --> 00:39:16,400 CURRENTLY THERE'S ABOUT 2,000 1042 00:39:16,400 --> 00:39:18,280 NURSING HOMES INCLUDED WHICH 1043 00:39:18,280 --> 00:39:20,160 REPRESENTS MORE THAN 180 NURSING 1044 00:39:20,160 --> 00:39:20,960 HOME CHAINS. 1045 00:39:20,960 --> 00:39:24,760 WE'RE EXCITED TO SEE THIS SERVE 1046 00:39:24,760 --> 00:39:27,560 AS AN INVALUABLE RESEARCH THAT 1047 00:39:27,560 --> 00:39:31,120 ENABLES RESEARCHERS TO GENERATE 1048 00:39:31,120 --> 00:39:32,400 EVIDENCE ON CARE PRACTICES ON 1049 00:39:32,400 --> 00:39:34,600 THOSE LIVING WITH DEMENTIA IN 1050 00:39:34,600 --> 00:39:35,880 NURSING HOMES. 1051 00:39:35,880 --> 00:39:37,640 THIS RESOURCE ENABLES TIMELY 1052 00:39:37,640 --> 00:39:39,120 INVESTIGATIONS OF THE IMPACT OF 1053 00:39:39,120 --> 00:39:41,160 THE COVID-19 ON THE NURSING HOME 1054 00:39:41,160 --> 00:39:45,640 POPULATION. 1055 00:39:45,640 --> 00:39:48,640 EARLIER ON IN VACCINATION 1056 00:39:48,640 --> 00:39:49,360 DEVELOPMENT, IMPACT 1057 00:39:49,360 --> 00:39:50,920 COLLABORATORY INVESTIGATORS WERE 1058 00:39:50,920 --> 00:39:54,440 ABLE IT SHOW DECREASED COVID-19 1059 00:39:54,440 --> 00:39:55,640 INCIDENTS FOR BOTH VACCINATED 1060 00:39:55,640 --> 00:39:58,360 AND UNVACCINATED NURSING HOME 1061 00:39:58,360 --> 00:39:59,600 RESIDENTS DEMONSTRATING REAL 1062 00:39:59,600 --> 00:40:02,800 WORLD EFFECTIVENESS OF THE mRNA 1063 00:40:02,800 --> 00:40:03,720 BASED VACCINES IN THIS IMPORTANT 1064 00:40:03,720 --> 00:40:08,640 POPULATION. 1065 00:40:08,640 --> 00:40:12,640 IN ANOTHER STUDY, INVESTIGATORS 1066 00:40:12,640 --> 00:40:15,480 SHOWED THE mRNA BASED VACCINES 1067 00:40:15,480 --> 00:40:19,800 WERE LIKELY LIFE SAVING FOR 1068 00:40:19,800 --> 00:40:20,920 THOSE RESIDENTS. 1069 00:40:20,920 --> 00:40:22,600 AND THIS UNDER SCORED THE VALUE 1070 00:40:22,600 --> 00:40:24,640 OF HAVING AN ANALYTIC 1071 00:40:24,640 --> 00:40:25,760 INFRASTRUCTURE TO SUPPORT NEAR 1072 00:40:25,760 --> 00:40:29,080 REAL TIME MONITORING OF ADVERSE 1073 00:40:29,080 --> 00:40:33,920 EVENTS, SAFETY AND EFFICACY 1074 00:40:33,920 --> 00:40:34,960 DURING RAPID EARLY VACCINE 1075 00:40:34,960 --> 00:40:36,200 DEPLOYMENT SUPPORTED IN PART BY 1076 00:40:36,200 --> 00:40:38,520 THE CENTERS FOR DISEASE CONTROL 1077 00:40:38,520 --> 00:40:40,760 AND PREVENTION TO INFORM THEIR 1078 00:40:40,760 --> 00:40:45,640 ADVERSE EVENT MONITORING. 1079 00:40:45,640 --> 00:40:46,680 ANOTHER CRITICAL AREA OF 1080 00:40:46,680 --> 00:40:48,160 INVESTMENT IS SUPPORTING THE 1081 00:40:48,160 --> 00:40:49,760 DEVELOPMENT AND USE OF DATA 1082 00:40:49,760 --> 00:40:51,320 RESOURCES THAT ENABLE DEEPER 1083 00:40:51,320 --> 00:40:53,160 INSIGHT INTO DEMENTIA CARE AND 1084 00:40:53,160 --> 00:40:54,920 CARE GIVING SUCH AS FINDINGS 1085 00:40:54,920 --> 00:40:56,920 THAT CAN HELP CHARACTERIZE THE 1086 00:40:56,920 --> 00:40:58,560 CARE LANDSCAPE AND POINT TO THE 1087 00:40:58,560 --> 00:41:00,200 TYPES OF PROGRAMS, SERVICES AND 1088 00:41:00,200 --> 00:41:00,840 INTERVENTIONS THAT ARE STILL 1089 00:41:00,840 --> 00:41:05,560 NEEDED. 1090 00:41:05,560 --> 00:41:09,600 ONE OF THE BEST NIA FUNDED 1091 00:41:09,600 --> 00:41:13,440 SOURCES OF PERSONS WITH DEMENTIA 1092 00:41:13,440 --> 00:41:17,560 IS THE STUDY AND PARTNER STUDY 1093 00:41:17,560 --> 00:41:18,880 OF THOSE PARTICIPANTS. 1094 00:41:18,880 --> 00:41:19,680 THAT'S CALLED THE NATIONAL STUDY 1095 00:41:19,680 --> 00:41:22,920 OF CARE GIVING. 1096 00:41:22,920 --> 00:41:27,320 WE CALL THIS NSOC AND THE 1097 00:41:27,320 --> 00:41:29,080 CONTENT MAKES IT SUITED TO STUDY 1098 00:41:29,080 --> 00:41:30,920 CARE GIVING IN THE OLDER ADULT 1099 00:41:30,920 --> 00:41:31,680 POPULATION AND AMONG THOSE 1100 00:41:31,680 --> 00:41:34,560 LIVING WITH DEMENTIA. 1101 00:41:34,560 --> 00:41:36,960 NIA FUNDED INFRASTRUCTURE SUCH 1102 00:41:36,960 --> 00:41:42,280 AS NHATS AND NSOC ARE A PUBLICLY 1103 00:41:42,280 --> 00:41:42,840 AVAILABLE RESOURCE FOR ANY 1104 00:41:42,840 --> 00:41:44,720 RESEARCHERS TO USE. 1105 00:41:44,720 --> 00:41:48,440 THESE ARE JUST A HANDFUL OF 1106 00:41:48,440 --> 00:41:50,240 RESEARCH ARTICLES PUBLISHED IN 1107 00:41:50,240 --> 00:41:52,680 2022 BY THIRD-PARTY 1108 00:41:52,680 --> 00:41:53,040 INVESTIGATORS. 1109 00:41:53,040 --> 00:41:57,000 MANY OF WHOM ARE ALSO FUND NIA. 1110 00:41:57,000 --> 00:42:00,800 A FEW OF WHICH ARE FROM AUTHORS 1111 00:42:00,800 --> 00:42:03,840 YOU'LL HEAR FROM LATER IN THE 1112 00:42:03,840 --> 00:42:04,920 SUMMIT. 1113 00:42:04,920 --> 00:42:06,720 THE WEBSITE FEATURES 1114 00:42:06,720 --> 00:42:11,760 PUBLICATIONS USING THE DATA. 1115 00:42:11,760 --> 00:42:14,120 SPEAKING OF WHICH, COLLEAGUES 1116 00:42:14,120 --> 00:42:17,360 USED THE DATA TO SHOW PERSONS 1117 00:42:17,360 --> 00:42:21,520 LIVING WITH DEMENTIA RECEIVED 1118 00:42:21,520 --> 00:42:23,160 DOUBLE THE TOTAL CARE HOURS PER 1119 00:42:23,160 --> 00:42:25,440 WEEK THAN THOSE WHO DID NOT 1120 00:42:25,440 --> 00:42:26,840 RECEIVE PAID CARE. 1121 00:42:26,840 --> 00:42:29,200 60% WERE FROM UNPAID FAMILY AND 1122 00:42:29,200 --> 00:42:30,800 OTHER CAREGIVERS WHICH INDICATE 1123 00:42:30,800 --> 00:42:33,200 THAT PAID CARE IS NOT REPLACING 1124 00:42:33,200 --> 00:42:38,640 FAMILY CARE GIVING FOR THE 1125 00:42:38,640 --> 00:42:39,280 POPULATION. 1126 00:42:39,280 --> 00:42:43,640 FINDINGS IN ONE STUDY FROM 1127 00:42:43,640 --> 00:42:44,840 HARRIS AND COLLEAGUES USING DATA 1128 00:42:44,840 --> 00:42:46,360 SUGGESTS CARE PARTNERS OF THOSE 1129 00:42:46,360 --> 00:42:49,120 LIVING WITH DEMENTIA ENROLLED IN 1130 00:42:49,120 --> 00:42:51,600 HOSPICE HAD LESS ANXIETY AND 1131 00:42:51,600 --> 00:42:53,080 BETTER VIEWS OF THEIR LOVED 1132 00:42:53,080 --> 00:42:55,040 ONE'S CARE OF END OF LIFE AND 1133 00:42:55,040 --> 00:42:56,640 FEWER CARE TRANSITIONS COMPARED 1134 00:42:56,640 --> 00:42:59,920 TO CARE PARTNERS OF INDIVIDUALS 1135 00:42:59,920 --> 00:43:04,760 WITH DEMENTIA NOT ENROLLED IN 1136 00:43:04,760 --> 00:43:05,000 HOSPICE. 1137 00:43:05,000 --> 00:43:08,560 THIS ENSURES ACCESS TO CARE FOR 1138 00:43:08,560 --> 00:43:09,560 THE GROWING POPULATION OF 1139 00:43:09,560 --> 00:43:11,760 PERSONS LIVING WITH DEMENTIA. 1140 00:43:11,760 --> 00:43:14,240 RATES OF HOSPICE USE AMONG THOSE 1141 00:43:14,240 --> 00:43:17,840 LIVING WITH DEMENTIA INCREASED 1142 00:43:17,840 --> 00:43:19,600 SUBSTANTIALLY BETWEEN 2004 AND 1143 00:43:19,600 --> 00:43:20,480 2016. 1144 00:43:20,480 --> 00:43:23,360 AND ALMOST HALF OF ALL HOSPICE 1145 00:43:23,360 --> 00:43:26,200 PATIENTS HAD A PRIMARY OR 1146 00:43:26,200 --> 00:43:28,240 SECONDARY DIAGNOSIS OF DEMENTIA. 1147 00:43:28,240 --> 00:43:30,720 HOSPICE PROVIDERS AND AGENCIES 1148 00:43:30,720 --> 00:43:33,680 HAVE HAD TO ADAPT TO UNIQUE 1149 00:43:33,680 --> 00:43:36,600 NEEDS OF THIS GROWING 1150 00:43:36,600 --> 00:43:37,520 POPULATION. 1151 00:43:37,520 --> 00:43:40,120 FINALLY, DATA FROM THE HEALTH 1152 00:43:40,120 --> 00:43:41,360 AND RETIREMENT STUDY TO 1153 00:43:41,360 --> 00:43:42,160 INVESTIGATE DISPARITIES IN 1154 00:43:42,160 --> 00:43:46,080 ACCESS TO CARE. 1155 00:43:46,080 --> 00:43:48,760 BLACK AND AFRICAN AMERICAN 1156 00:43:48,760 --> 00:43:52,760 LIVING WITH DEMENTIA HAS LOWER 1157 00:43:52,760 --> 00:43:55,200 RATES OF ADVANCED CARE 1158 00:43:55,200 --> 00:44:02,400 DIRECTIVES AND LATINEX AND 1159 00:44:02,400 --> 00:44:03,160 AFRICAN AMERICANS WERE MORE 1160 00:44:03,160 --> 00:44:04,640 LIKELY TO HAVE A 1161 00:44:04,640 --> 00:44:05,000 HOSPITALIZATION. 1162 00:44:05,000 --> 00:44:07,080 THE STUDIES ARE EXAMPLES OF 1163 00:44:07,080 --> 00:44:11,320 IMPORTANT NIA FUNDED WORK USING 1164 00:44:11,320 --> 00:44:12,680 RESOURCES THAT CHARACTERIZE 1165 00:44:12,680 --> 00:44:14,120 HOSPICE CARE OF THOSE LIVING 1166 00:44:14,120 --> 00:44:15,480 WITH DEMENTIA. 1167 00:44:15,480 --> 00:44:17,200 IT CAN POINT TO THE NEED FOR 1168 00:44:17,200 --> 00:44:18,320 INTERVENTION DEVELOPMENT SUCH AS 1169 00:44:18,320 --> 00:44:19,760 THE RESEARCH THAT BRODY AND 1170 00:44:19,760 --> 00:44:25,480 COLLEAGUES ARE DOING AND THE 1171 00:44:25,480 --> 00:44:27,400 PREVIOUSLY NOTED PROGRAMS FOR 1172 00:44:27,400 --> 00:44:33,080 HOSPICE AND PALLIATIVE CARE. 1173 00:44:33,080 --> 00:44:34,280 UNDERSTANDING THE SOCIAL 1174 00:44:34,280 --> 00:44:37,040 DETERMINATES OF HEALTH IS AN NIA 1175 00:44:37,040 --> 00:44:38,040 PRIORITY AND GROWING PRIORITY 1176 00:44:38,040 --> 00:44:41,640 FOR MANY RESEARCH FUNDERS. 1177 00:44:41,640 --> 00:44:42,960 OUR STRATEGY GOALS INCLUDE 1178 00:44:42,960 --> 00:44:44,280 UNDERSTANDING HOW SOCIAL AND 1179 00:44:44,280 --> 00:44:47,120 ECONOMIC FACTORS THROUGHOUT THE 1180 00:44:47,120 --> 00:44:48,920 LIFE SPAN AFFECT HEALTH AND WELL 1181 00:44:48,920 --> 00:44:50,160 BEING AND RESEARCH TO UNDERSTAND 1182 00:44:50,160 --> 00:44:52,280 THE ENVIRONMENTAL AND SOCIAL AND 1183 00:44:52,280 --> 00:44:54,120 CULTURAL BEHAVIORAL AND 1184 00:44:54,120 --> 00:44:55,600 BIOLOGICAL FACTORS THAT 1185 00:44:55,600 --> 00:44:57,200 CONTRIBUTE TO AND SUSTAIN HEALTH 1186 00:44:57,200 --> 00:44:59,080 DISPARITIES AMONG OLDER ADULTS 1187 00:44:59,080 --> 00:45:00,800 INCLUDING THOSE LIVING WITH 1188 00:45:00,800 --> 00:45:01,960 DEMENTIA AND THEIR CARE PARTNERS 1189 00:45:01,960 --> 00:45:04,360 IS OF CRITICAL IMPORTANCE. 1190 00:45:04,360 --> 00:45:06,360 ONE SOCIAL DETERMINANT OF HEALTH 1191 00:45:06,360 --> 00:45:07,760 IS THE ACCESS TO HIGH QUALITY 1192 00:45:07,760 --> 00:45:11,040 CARE. 1193 00:45:11,040 --> 00:45:14,880 WITHIN THE HEALTH SYSTEM, BOTH 1194 00:45:14,880 --> 00:45:16,680 PROVIDER-LEVEL BEHAVIORS AND 1195 00:45:16,680 --> 00:45:17,640 SYSTEM-LEVEL CHARACTERISTICS MAY 1196 00:45:17,640 --> 00:45:19,000 CONTRIBUTE TO HEALTH DISPARITIES 1197 00:45:19,000 --> 00:45:22,240 AND DISPARITIES IN CARE, ACCESS 1198 00:45:22,240 --> 00:45:22,920 AND USE. 1199 00:45:22,920 --> 00:45:24,320 RESEARCH SUGGESTS LIKE OF ACCESS 1200 00:45:24,320 --> 00:45:26,440 TO PRIMARY CARE IS ASSOCIATED 1201 00:45:26,440 --> 00:45:28,600 WITH GREATER RISK OF COGNITIVE 1202 00:45:28,600 --> 00:45:29,720 IMPAIRMENT AND SYSTEM LEVEL 1203 00:45:29,720 --> 00:45:33,960 FACTORS SUCH AS ACCOUNTABLE CARE 1204 00:45:33,960 --> 00:45:35,520 ORGANIZATIONS AND STAFF TURNOVER 1205 00:45:35,520 --> 00:45:38,000 RATES ARE ASSOCIATED WITH 1206 00:45:38,000 --> 00:45:40,440 QUALITY OF CARE FOR VULNERABLE 1207 00:45:40,440 --> 00:45:41,680 OLDER ADULTS. 1208 00:45:41,680 --> 00:45:42,840 ACCOUNTABLE CARE ORGANIZATIONS 1209 00:45:42,840 --> 00:45:45,960 OR ACOs USE CARE PAYMENT MODELS 1210 00:45:45,960 --> 00:45:48,800 THAT PAY FOR HIGH QUALITY CARE 1211 00:45:48,800 --> 00:45:53,120 PERFORMANCE RATHER THAN THE 1212 00:45:53,120 --> 00:45:57,320 QUANTITY OF SERVICES. 1213 00:45:57,320 --> 00:46:01,000 NIA HAD A WORKSHOP TO UNDERSTAND 1214 00:46:01,000 --> 00:46:03,400 THE NEED OF THOSE LIVING WITH 1215 00:46:03,400 --> 00:46:05,480 DEMENTIA AND PRIORITIES INFORMED 1216 00:46:05,480 --> 00:46:07,000 OUR SUBSEQUENT EFFORTS. 1217 00:46:07,000 --> 00:46:08,400 WE'VE LAUNCHED RESEARCH 1218 00:46:08,400 --> 00:46:11,040 INITIATIVES FOCUSSED ON HOW 1219 00:46:11,040 --> 00:46:13,160 VARIATIONS IN SOCIAL HEALTH CARE 1220 00:46:13,160 --> 00:46:14,840 AND LABOR MARKET POLICIES OR 1221 00:46:14,840 --> 00:46:16,080 BARRIERS TO TREATMENT IMPACT 1222 00:46:16,080 --> 00:46:17,280 DISPARITIES IN DEMENTIA CARE AND 1223 00:46:17,280 --> 00:46:22,240 CARE GIVING. 1224 00:46:22,240 --> 00:46:24,520 FOR EXAMPLE, IN A STUDY 1225 00:46:24,520 --> 00:46:25,640 SURVEYING THE PARTICIPANTS OF 1226 00:46:25,640 --> 00:46:26,880 THE UNDERSTANDING AMERICA STUDY 1227 00:46:26,880 --> 00:46:30,320 WHO WERE 65 OR OLDER, JACOBSON 1228 00:46:30,320 --> 00:46:32,280 AND COLLEAGUES FOUND THOSE IN 1229 00:46:32,280 --> 00:46:33,760 MEDICARE ADVANTAGE PLANS WERE 1230 00:46:33,760 --> 00:46:36,000 MORE LIKELY TO REPORT HAVING AN 1231 00:46:36,000 --> 00:46:38,080 ANNUAL WELLNESS VISIT THAT 1232 00:46:38,080 --> 00:46:38,760 INCLUDED COGNITIVE ASSESSMENT 1233 00:46:38,760 --> 00:46:40,600 THAN THOSE ENROLLED IN FEE FOR 1234 00:46:40,600 --> 00:46:41,440 SERVICE MEDICARE. 1235 00:46:41,440 --> 00:46:46,840 YOU'LL HEAR MORE ABOUT THIS 1236 00:46:46,840 --> 00:46:50,000 STUDY DURING SESSION SEVEN. 1237 00:46:50,000 --> 00:46:52,160 THIS ADDRESSES SESSIONS WITH 1238 00:46:52,160 --> 00:46:53,240 REAL LIFE IMPACT ON THOSE LIVING 1239 00:46:53,240 --> 00:46:55,280 WITH DEMENTIA. 1240 00:46:55,280 --> 00:47:00,880 HOW CAN WE INCREASE PRACTICES 1241 00:47:00,880 --> 00:47:05,200 SUCH AS ANNUAL WELLNESS VISITS. 1242 00:47:05,200 --> 00:47:08,040 IN ANOTHER EXAMPLE, WE SUGGEST 1243 00:47:08,040 --> 00:47:09,240 THE INCENTIVES FOR CARE 1244 00:47:09,240 --> 00:47:10,520 COORDINATION AND THE ACCOUNTABLE 1245 00:47:10,520 --> 00:47:12,840 CARE ORGANIZATIONAL FRAMEWORK 1246 00:47:12,840 --> 00:47:14,960 MAY BEING PROMISING SYSTEM LEVEL 1247 00:47:14,960 --> 00:47:19,120 MECHANISMS BY WHICH TO MITIGATE 1248 00:47:19,120 --> 00:47:20,360 DISPARITIES IN PREVENTIBLE 1249 00:47:20,360 --> 00:47:21,520 EMERGENCY DEPARTMENT VISITS FOR 1250 00:47:21,520 --> 00:47:27,200 THOSE LIVING WITH DEMENTIA. 1251 00:47:27,200 --> 00:47:28,760 FUTURE NIA DIRECTION AND 1252 00:47:28,760 --> 00:47:32,240 RESEARCH ON THE HEALTH CARE 1253 00:47:32,240 --> 00:47:34,080 LANDSCAPE AS A SOCIAL 1254 00:47:34,080 --> 00:47:35,640 DETERMINATE OF HEALTH INCLUDES 1255 00:47:35,640 --> 00:47:36,400 STIMULATING RESEARCH ON STATE 1256 00:47:36,400 --> 00:47:39,600 AND REGIONAL POLICIES AND 1257 00:47:39,600 --> 00:47:41,360 PRACTICES INCREASE DEMENTIA CARE 1258 00:47:41,360 --> 00:47:43,840 COORDINATION ACROSS SETTINGS AS 1259 00:47:43,840 --> 00:47:44,960 WELL AS A CONSORTIUM FOR 1260 00:47:44,960 --> 00:47:46,760 ECONOMIC RESEARCH ON DEMENTIA 1261 00:47:46,760 --> 00:47:48,800 CARE AND THE NATIONAL SURVEY TO 1262 00:47:48,800 --> 00:47:50,920 UNDERSTAND HOW CHARACTERISTICS 1263 00:47:50,920 --> 00:47:52,000 OF PROFESSIONAL CARE PROVIDERS 1264 00:47:52,000 --> 00:47:53,720 AND INSTITUTIONS LEAD TO 1265 00:47:53,720 --> 00:47:55,040 VARIATIONS IN CARE PROVIDED TO 1266 00:47:55,040 --> 00:47:56,160 THOSE LIVING WITH DEMENTIA AND 1267 00:47:56,160 --> 00:48:00,440 THEIR CARE PARTNERS. 1268 00:48:00,440 --> 00:48:03,560 BURY CLOSE, I WANT TO INVITE YOU 1269 00:48:03,560 --> 00:48:05,360 TO USE PUBLICLY AVAILABLE 1270 00:48:05,360 --> 00:48:06,160 RESOURCES THAT PROVIDE 1271 00:48:06,160 --> 00:48:08,920 INFORMATION ON FUNDED AWARDS AND 1272 00:48:08,920 --> 00:48:09,160 PROJECTS. 1273 00:48:09,160 --> 00:48:09,880 THE INTERNATIONAL ALZHEIMER'S 1274 00:48:09,880 --> 00:48:13,200 AND RELATED DEMENTIA RESEARCH 1275 00:48:13,200 --> 00:48:16,560 PORTFOLIO, THE NIA RESEARCH 1276 00:48:16,560 --> 00:48:18,160 IMPLEMENTATION MILESTONES AND 1277 00:48:18,160 --> 00:48:21,600 THE NIH PROJECT REPORTED 1278 00:48:21,600 --> 00:48:22,200 WEBSITES HAVE SEARCHABLE 1279 00:48:22,200 --> 00:48:22,800 INFORMATION ABOUT PROGRESS IN 1280 00:48:22,800 --> 00:48:24,760 THIS AREA. 1281 00:48:24,760 --> 00:48:29,320 AND JUST LAST WEEK NIA PUBLISHED 1282 00:48:29,320 --> 00:48:30,720 A BLOG POST WITH THE NIA STAGE 1283 00:48:30,720 --> 00:48:34,320 MODEL. 1284 00:48:34,320 --> 00:48:35,400 THERE ARE MANY OPPORTUNITIES 1285 00:48:35,400 --> 00:48:36,760 AVAILABLE TO SUPPORT DEMENTIA 1286 00:48:36,760 --> 00:48:38,480 CARE AND RESEARCH. 1287 00:48:38,480 --> 00:48:39,000 THESE LENGTHS INCLUDE 1288 00:48:39,000 --> 00:48:40,480 OPPORTUNITIES FOR DEMENTIA CARE 1289 00:48:40,480 --> 00:48:42,320 AND CARE GIVING INTERVENTION 1290 00:48:42,320 --> 00:48:43,080 DEVELOPMENT STUDIES. 1291 00:48:43,080 --> 00:48:46,360 THE LATEST FALL FOR THE 1292 00:48:46,360 --> 00:48:47,120 ALZHEIMER'S DISEASE AND 1293 00:48:47,120 --> 00:48:49,960 ALZHEIMER'S DISEASE RELATED 1294 00:48:49,960 --> 00:48:52,400 DEMENTIAS ROYBAL CENTERS AND THE 1295 00:48:52,400 --> 00:48:54,240 REAL WORLD DATA PLATFORM TO AIM 1296 00:48:54,240 --> 00:48:56,160 TO TRANSFORM THE ALZHEIMER'S 1297 00:48:56,160 --> 00:48:57,800 DISEASE RESEARCH ENTERPRISE BY 1298 00:48:57,800 --> 00:48:58,680 PROVIDING A DATA INFRASTRUCTURE 1299 00:48:58,680 --> 00:49:01,240 AS A SERVICE TO THE RESEARCH 1300 00:49:01,240 --> 00:49:01,520 COMMUNITY. 1301 00:49:01,520 --> 00:49:04,600 THE NIA FUNDING OPPORTUNITIES 1302 00:49:04,600 --> 00:49:06,480 INCLUDE SCIENTIFIC CONTACTS TO 1303 00:49:06,480 --> 00:49:13,720 ANSWER MORE QUESTIONS AND THE 1304 00:49:13,720 --> 00:49:16,920 ROYBAL CENTER AND COLLABORATORY 1305 00:49:16,920 --> 00:49:20,160 OFFER FUNDING IN ACCORDANCE WITH 1306 00:49:20,160 --> 00:49:26,680 A STAGE MODEL. 1307 00:49:26,680 --> 00:49:30,680 NIA IS COMMITTED TO ADDRESSING 1308 00:49:30,680 --> 00:49:32,000 THE PLANS TOWARDS ALZHEIMER'S 1309 00:49:32,000 --> 00:49:32,240 DISEASE. 1310 00:49:32,240 --> 00:49:33,880 I HIGHLIGHTED ASPECTS OF THE 1311 00:49:33,880 --> 00:49:35,320 WORK FACILITATING RIGOROUS 1312 00:49:35,320 --> 00:49:36,800 INTERVENTION DEVELOPMENT, 1313 00:49:36,800 --> 00:49:38,040 SUPPORTING THE DEVELOPMENT AND 1314 00:49:38,040 --> 00:49:47,000 USE OF ROBUST DATA RESOURCES 1315 00:49:47,000 --> 00:49:52,080 THAT ENABLE ANALYSES AND THE 1316 00:49:52,080 --> 00:49:54,600 LANDSCAPE AND THE NIA AND OTHER 1317 00:49:54,600 --> 00:49:57,280 ORGANIZATIONS AND RESEARCHERS, 1318 00:49:57,280 --> 00:49:58,640 MANY OF WHOM ARE IN THE AUDIENCE 1319 00:49:58,640 --> 00:50:01,400 AND ON THE AGENDA HAVE DONE A 1320 00:50:01,400 --> 00:50:02,200 TREMENDOUS AMOUNT OF WORK AND 1321 00:50:02,200 --> 00:50:03,440 HAVE MORE TO DO. 1322 00:50:03,440 --> 00:50:09,520 I'LL NOW TURN IT BACK TO DR 1323 00:50:09,520 --> 00:50:16,480 DR. GILMORE-BYKOVSKYI. 1324 00:50:16,480 --> 00:50:18,280 >>AS WE INVESTIGATION TO OUR 1325 00:50:18,280 --> 00:50:19,640 FIRST SCIENTIFIC SESSION TO 1326 00:50:19,640 --> 00:50:21,920 AGAIN HIGHLIGHT THE WAYS YOU CAN 1327 00:50:21,920 --> 00:50:24,080 PARTICIPATE THROUGHOUT THE 1328 00:50:24,080 --> 00:50:24,480 SUMMIT. 1329 00:50:24,480 --> 00:50:26,840 FIRST, WHILE THE SUMMIT IS BEING 1330 00:50:26,840 --> 00:50:28,320 BROADCAST LIVE IT'S ALSO GOING 1331 00:50:28,320 --> 00:50:30,560 TO BE RECORDED AND WILL BE 1332 00:50:30,560 --> 00:50:32,160 PUBLICLY AVAILABLE AFTER THE 1333 00:50:32,160 --> 00:50:32,640 EVENT. 1334 00:50:32,640 --> 00:50:36,440 IF YOU ARE ON THE NIH VIDEOCAST, 1335 00:50:36,440 --> 00:50:39,680 YOU CAN CLICK THE SUBMIT LIVE 1336 00:50:39,680 --> 00:50:41,200 FEEDBACK TO SUBMIT A QUESTION 1337 00:50:41,200 --> 00:50:43,960 AND IF YOU JOINED US ON THE ZOOM 1338 00:50:43,960 --> 00:50:45,760 WEBINAR USE THE Q&A BOX TO 1339 00:50:45,760 --> 00:50:47,160 SUBMIT YOUR QUESTIONS. 1340 00:50:47,160 --> 00:50:48,680 WITH NO FURTHER ADO, I'LL 1341 00:50:48,680 --> 00:50:50,040 THRILLED TO MOVE US TO OUR FIRST 1342 00:50:50,040 --> 00:50:51,560 SCIENTIFIC SESSION, WHAT MATTERS 1343 00:50:51,560 --> 00:50:59,120 AND LIVING WELL WITH DEMENTIA 1344 00:50:59,120 --> 00:51:02,560 CHAIRED BY DR. BENNETT AND BASAL 1345 00:51:02,560 --> 00:51:08,120 ELDADAH. 1346 00:51:08,120 --> 00:51:10,000 >>IT'S A PLEASURE TO BE HERE 1347 00:51:10,000 --> 00:51:12,800 AND FOCUS ON WHAT MATTERS TO 1348 00:51:12,800 --> 00:51:14,880 PEOPLE LIVING WITH ALZHEIMER'S 1349 00:51:14,880 --> 00:51:16,960 DISEASE AND RELATED DEMENTIAS. 1350 00:51:16,960 --> 00:51:22,880 I HAVE A FEW REMARKS DR. ELDADAH 1351 00:51:22,880 --> 00:51:31,200 HAVE FOR THE PRESENTATIONS. 1352 00:51:31,200 --> 00:51:33,960 PERS 1353 00:51:33,960 --> 00:51:34,520 PERSON-CENTERED CARE IS 1354 00:51:34,520 --> 00:51:37,760 RECOGNIZED AS THE KEY TO GOOD 1355 00:51:37,760 --> 00:51:38,560 DEMENTIA CARE. 1356 00:51:38,560 --> 00:51:41,560 CARE HAS BEEN BASED ON WHAT A 1357 00:51:41,560 --> 00:51:44,080 CLINICIAN THINKS IS IMPORTANT 1358 00:51:44,080 --> 00:51:45,480 WITH LITTLE INPUT THE 1359 00:51:45,480 --> 00:51:46,880 INDIVIDUALS RECEIVING CARE. 1360 00:51:46,880 --> 00:51:48,400 RESEARCH ON PERSON-CENTERED CARE 1361 00:51:48,400 --> 00:51:50,400 IS FOCUSSED ON IMPROVING THE 1362 00:51:50,400 --> 00:51:53,480 LIVES OF PEOPLE LIVING WITH 1363 00:51:53,480 --> 00:51:53,760 DEMENTIA. 1364 00:51:53,760 --> 00:51:55,800 WE SEEK TO IDENTIFY WHAT MATTERS 1365 00:51:55,800 --> 00:51:57,960 MOST TO THOSE LIVING WITH 1366 00:51:57,960 --> 00:51:59,800 DEMENTIA AND THEIR CARE 1367 00:51:59,800 --> 00:52:00,200 PARTNERS. 1368 00:52:00,200 --> 00:52:02,120 ONE IMPORTANT AREA IS LIVING 1369 00:52:02,120 --> 00:52:05,640 WELL WITH DEMENTIA. 1370 00:52:05,640 --> 00:52:07,520 SO SOME OF THE MOST IMPORTANT 1371 00:52:07,520 --> 00:52:10,960 THINGS IN LIFE ARE DIFFICULT TO 1372 00:52:10,960 --> 00:52:11,800 MEASURE OR JUST NOT SUITED TO 1373 00:52:11,800 --> 00:52:13,880 MEASUREMENT AT ALL. 1374 00:52:13,880 --> 00:52:17,360 WE NEED TO BE AS CREATIVE AS 1375 00:52:17,360 --> 00:52:20,200 POSSIBLE TO DEVISE FEASIBLE WAYS 1376 00:52:20,200 --> 00:52:21,720 TO MEASURE THE IMPORTANT 1377 00:52:21,720 --> 00:52:22,720 CONCEPTS. 1378 00:52:22,720 --> 00:52:24,640 WE NEED HIGH-QUALITY MEASUREMENT 1379 00:52:24,640 --> 00:52:27,160 TOOLS TO EVALUATE THE BENEFITS 1380 00:52:27,160 --> 00:52:30,280 AND HARMS OF NEW INTERVENTIONS. 1381 00:52:30,280 --> 00:52:32,520 SO WE'RE INTERESTED IN THE 1382 00:52:32,520 --> 00:52:34,000 VALIDITY OF THE MEASURE. 1383 00:52:34,000 --> 00:52:34,880 DOES THE TOOL MEASURE WHAT'S 1384 00:52:34,880 --> 00:52:35,920 IMPORTANT AND DOES IT MEASURE 1385 00:52:35,920 --> 00:52:39,360 WHAT WE DESIGN IT TO MEASURE? 1386 00:52:39,360 --> 00:52:41,360 WE'RE ALSO INTERESTED IN 1387 00:52:41,360 --> 00:52:42,160 RELIABILITY. 1388 00:52:42,160 --> 00:52:44,480 DOES THE TOOL MEASURE THINGS 1389 00:52:44,480 --> 00:52:52,560 CONSISTENTLY OVER TIME. 1390 00:52:52,560 --> 00:52:54,640 WE CAN IDENTIFY IMPORTANT TOPICS 1391 00:52:54,640 --> 00:52:58,040 OR CONCEPTS OF INTEREST IN MANY 1392 00:52:58,040 --> 00:52:58,280 WAYS. 1393 00:52:58,280 --> 00:53:00,880 THIS INCLUDES SEEKING INPUT FROM 1394 00:53:00,880 --> 00:53:03,160 INTERESTED PARTIES SUCH AS 1395 00:53:03,160 --> 00:53:04,760 PERSONS LIVING WITH DEMENTIA AND 1396 00:53:04,760 --> 00:53:06,480 THEIR CARE PARTNERS AND DECIDING 1397 00:53:06,480 --> 00:53:10,520 ON THE APPROACH TO THAT TOPIC. 1398 00:53:10,520 --> 00:53:11,720 FOR EXAMPLE, USING A 1399 00:53:11,720 --> 00:53:14,360 STRENGTH-BASED MODEL. 1400 00:53:14,360 --> 00:53:17,040 WE THEN HAVE THE CHALLENGE OF 1401 00:53:17,040 --> 00:53:19,160 CREATING VALID AND RELIABLE 1402 00:53:19,160 --> 00:53:20,440 MEASUREMENT TOOLS SO WE'RE ABLE 1403 00:53:20,440 --> 00:53:21,800 TO ASSESS THE IMPORTANT CONCEPTS 1404 00:53:21,800 --> 00:53:24,560 IN STUDIES. 1405 00:53:24,560 --> 00:53:27,960 SO YOU'LL SEE THIS DYNAMIC 1406 00:53:27,960 --> 00:53:29,080 BETWEEN IDENTIFYING IMPORTANT 1407 00:53:29,080 --> 00:53:31,840 CONCEPTS AND FIGURING OUT HOW TO 1408 00:53:31,840 --> 00:53:34,480 MEASURE THEM IN EACH OF THE 1409 00:53:34,480 --> 00:53:42,120 PRESENTATIONS TODAY. 1410 00:53:42,120 --> 00:53:45,200 SO WHEN WE'RE LOOKING FOR A 1411 00:53:45,200 --> 00:53:46,320 VALID AND RELIABLE MEASUREMENT 1412 00:53:46,320 --> 00:53:48,360 TOOL TO USE IN THE RESEARCH 1413 00:53:48,360 --> 00:53:50,360 STUDY, TWO CHARACTERISTICS ARE 1414 00:53:50,360 --> 00:53:52,440 OFTEN LACKING AND THIS ACTUALLY 1415 00:53:52,440 --> 00:53:55,800 OCCURS ACROSS MANY AREAS OF 1416 00:53:55,800 --> 00:53:57,480 HEALTH CARE RESEARCH WHETHER 1417 00:53:57,480 --> 00:54:00,000 IT'S CANCER RESEARCH, IN 1418 00:54:00,000 --> 00:54:00,680 PALLIATIVE CARE OR DEMENTIA 1419 00:54:00,680 --> 00:54:03,960 RESEARCH AS WELL. 1420 00:54:03,960 --> 00:54:06,240 THE FIRST IS WHETHER THE 1421 00:54:06,240 --> 00:54:09,400 MEASUREMENT TOOL IS DESIGN FOR 1422 00:54:09,400 --> 00:54:09,960 THE STUDY POPULATION. 1423 00:54:09,960 --> 00:54:12,760 FOR EXAMPLE, DOES IT REFLECT THE 1424 00:54:12,760 --> 00:54:14,400 LANGUAGE, CULTURE, PRIORITIES OR 1425 00:54:14,400 --> 00:54:14,960 VALUES OF THE PEOPLE IN THE 1426 00:54:14,960 --> 00:54:17,440 STUDY. 1427 00:54:17,440 --> 00:54:19,720 AND THE SECOND IS WHETHER THE 1428 00:54:19,720 --> 00:54:22,160 MEASUREMENT TOOL IS ACTUALLY 1429 00:54:22,160 --> 00:54:23,360 ABLE TO SHOW THE IMPROVEMENT 1430 00:54:23,360 --> 00:54:28,440 CAUSED BY THE INTERVENTION. 1431 00:54:28,440 --> 00:54:30,600 WE SAY IS THE MEASURE AND TOOL 1432 00:54:30,600 --> 00:54:33,680 RESPONSIVE OR SENSITIVE TO 1433 00:54:33,680 --> 00:54:34,200 CHANGE? 1434 00:54:34,200 --> 00:54:36,760 AND IS IT KNOWN HOW MUCH CHANGE 1435 00:54:36,760 --> 00:54:39,200 IS CONSIDERED A MEANINGFUL 1436 00:54:39,200 --> 00:54:40,240 IMPROVEMENT. 1437 00:54:40,240 --> 00:54:42,000 OFTEN, THIS IMPORTANT 1438 00:54:42,000 --> 00:54:43,800 INFORMATION ABOUT THE 1439 00:54:43,800 --> 00:54:45,040 MEASUREMENT TOOLS ISN'T 1440 00:54:45,040 --> 00:54:47,480 DEMONSTRATED OR DOCUMENTED. 1441 00:54:47,480 --> 00:54:49,320 IT'S SO IMPORTANT THAT 1442 00:54:49,320 --> 00:54:50,800 MEASUREMENT TOOLS ARE DEVELOPED 1443 00:54:50,800 --> 00:54:52,280 TO COMPLETION THAT ALL THESE 1444 00:54:52,280 --> 00:54:54,960 ISSUES ARE ADDRESSED SO WE CAN 1445 00:54:54,960 --> 00:54:56,200 CONFIDENTLY USE THE TOOLS IN OUR 1446 00:54:56,200 --> 00:55:02,120 RESEARCH STUDY. 1447 00:55:02,120 --> 00:55:06,360 THE THREE PRESENTATIONS IN THIS 1448 00:55:06,360 --> 00:55:08,440 SESSION PROVIDE EXCITING 1449 00:55:08,440 --> 00:55:10,320 EXAMPLES FROM UNITED STATES AND 1450 00:55:10,320 --> 00:55:11,120 THE UNITED KINGDOM OF NEW 1451 00:55:11,120 --> 00:55:12,280 APPROACH TO IDENTIFY WHAT'S 1452 00:55:12,280 --> 00:55:16,000 IMPORTANT TO PEOPLE LIVING WITH 1453 00:55:16,000 --> 00:55:19,200 DEMENTIA AND CREATIVE WAYS OF 1454 00:55:19,200 --> 00:55:20,160 DEVELOPING RELIABLE MEASUREMENT 1455 00:55:20,160 --> 00:55:23,920 TOOLS FOR THE NEW APPROACHES AND 1456 00:55:23,920 --> 00:55:24,160 CONCEPTS. 1457 00:55:24,160 --> 00:55:31,000 DR. RILEY IS A PROFESSOR AT THE 1458 00:55:31,000 --> 00:55:32,520 UNIVERSITY OF BRADFORD AND 1459 00:55:32,520 --> 00:55:43,040 DR. MOLONY IS A PROFESSOR OF 1460 00:55:44,560 --> 00:55:45,840 QUINN I PACK UNIVERSITY AND NOW 1461 00:55:45,840 --> 00:55:46,320 TO DR. RILEY FOR HER 1462 00:55:46,320 --> 00:55:50,240 PRESENTATION. 1463 00:55:50,240 --> 00:55:57,120 >>GOOD MORNING, EVERYONE. 1464 00:55:57,120 --> 00:55:58,240 THANK YOU VERY MUCH FOR INVITING 1465 00:55:58,240 --> 00:55:59,520 ME TO SPEAK. 1466 00:55:59,520 --> 00:56:00,600 IT'S A REAL HONOR. 1467 00:56:00,600 --> 00:56:02,360 I'LL INTRODUCE YOU TO A STUDY 1468 00:56:02,360 --> 00:56:05,520 THAT GREW FROM THE NEED TO 1469 00:56:05,520 --> 00:56:09,520 BETTER MAKE SENSE AND SYNTHESIZE 1470 00:56:09,520 --> 00:56:11,120 THE EVIDENCE FROM TRIAL AND HAS 1471 00:56:11,120 --> 00:56:12,440 RELEVANCE LOOKING AT WHAT 1472 00:56:12,440 --> 00:56:13,200 MATTERS TO THOSE LIVING WITH 1473 00:56:13,200 --> 00:56:21,160 DEMENTIA AT HOME. 1474 00:56:21,160 --> 00:56:24,200 BEFORE I TELL ABOUT THE WORK 1475 00:56:24,200 --> 00:56:26,040 MORE ON THE FUNDERS AND 1476 00:56:26,040 --> 00:56:32,480 RESEARCHERS AND ADVISORY GROUP. 1477 00:56:32,480 --> 00:56:40,160 SO MEASURING OUTCOMES HAS BEEN 1478 00:56:40,160 --> 00:56:43,960 CHALLENGING DUE TO THE HET 1479 00:56:43,960 --> 00:56:50,280 HETEROGENOUS LEVELS OF DEMENTIA 1480 00:56:50,280 --> 00:56:51,800 AND COMPARING EFFECTIVENESS 1481 00:56:51,800 --> 00:56:54,640 ACROSS STUDIES AROUND MAKES THE 1482 00:56:54,640 --> 00:56:55,600 EVIDENCE BASE HARDER TO 1483 00:56:55,600 --> 00:57:01,360 INTERPRET. 1484 00:57:01,360 --> 00:57:04,120 ONE APPROACH THAT HAS POTENTIAL 1485 00:57:04,120 --> 00:57:08,200 TO ADDRESS THE CHALLENGES AND 1486 00:57:08,200 --> 00:57:10,040 OUTCOME MEASUREMENT WAS THE CORE 1487 00:57:10,040 --> 00:57:10,560 OUTCOME SET. 1488 00:57:10,560 --> 00:57:12,600 THE IDEA IS SIMPLE. 1489 00:57:12,600 --> 00:57:16,920 YOU UNDERTAKE RESEARCH TO ATTAIN 1490 00:57:16,920 --> 00:57:20,600 A CONSENSUS FROM KEY 1491 00:57:20,600 --> 00:57:21,520 STAKEHOLDERS ON WHAT OUTCOMES 1492 00:57:21,520 --> 00:57:23,800 ARE MORE IMPORTANT AND REVIEW 1493 00:57:23,800 --> 00:57:24,400 EXISTING MEASURES AGAINST THE 1494 00:57:24,400 --> 00:57:26,560 CORE OUTCOMES. 1495 00:57:26,560 --> 00:57:29,040 SO THE OUTPUT IS A 1496 00:57:29,040 --> 00:57:34,200 RECOMMENDATION OF WHAT OUTCOMES 1497 00:57:34,200 --> 00:57:37,480 SHOULD BE MEASURED ACROSS ALL 1498 00:57:37,480 --> 00:57:38,440 TRIALS WITHIN THE SCOPE OF THE 1499 00:57:38,440 --> 00:57:41,920 CORE OUTCOME SET. 1500 00:57:41,920 --> 00:57:45,560 SO IN ONE OF THE PUBLISHED 1501 00:57:45,560 --> 00:57:50,160 PAPERS WE OUTLINED SIX PREVIOUS 1502 00:57:50,160 --> 00:57:52,520 CONSENSUS EXERCISES THAT SOUGHT 1503 00:57:52,520 --> 00:57:54,000 TO OBTAIN CONSENSUS IN DEMENTIA 1504 00:57:54,000 --> 00:57:55,520 CARE AND RESEARCH AND THERE WAS 1505 00:57:55,520 --> 00:57:58,280 A GREAT DEAL OF VARIATION AND 1506 00:57:58,280 --> 00:57:59,280 DIFFERENCES IN SOME OF THE 1507 00:57:59,280 --> 00:58:00,040 PREVIOUS ENDEAVORS. 1508 00:58:00,040 --> 00:58:03,040 SO LOOKING AT THE STUDIES WE 1509 00:58:03,040 --> 00:58:04,160 NOTED ANOTHER CHALLENGE AND IT 1510 00:58:04,160 --> 00:58:08,720 WAS UNCLEAR IF OUTCOMES BEING 1511 00:58:08,720 --> 00:58:09,640 RECOMMENDED ARE IMPORTANT TO 1512 00:58:09,640 --> 00:58:12,600 PEOPLE LIVING WITH DEMENTIA. 1513 00:58:12,600 --> 00:58:14,400 THEY WERE RARELY CONSULTED AND 1514 00:58:14,400 --> 00:58:16,680 THE CHOICE OF OUTCOMES MAY BE 1515 00:58:16,680 --> 00:58:17,440 DRIVEN MORE BY THE EXPECTATIONS 1516 00:58:17,440 --> 00:58:22,040 OF THE RESEARCH COMMUNITY. 1517 00:58:22,040 --> 00:58:25,000 SO WE HAD OUR UNDER PINNING 1518 00:58:25,000 --> 00:58:26,040 VALUE OF A CO-RESEARCH 1519 00:58:26,040 --> 00:58:26,840 PHILOSOPHY. 1520 00:58:26,840 --> 00:58:29,080 WE EMBEDDED THE PARTICIPATION OF 1521 00:58:29,080 --> 00:58:30,520 PEOPLE LIVING WITH DEMENTIA AND 1522 00:58:30,520 --> 00:58:32,720 THEIR CAR PARTNERS AS 1523 00:58:32,720 --> 00:58:33,720 CO-RESEARCHERS THROUGHOUT OUR 1524 00:58:33,720 --> 00:58:36,120 STUDY TO DESIGN CREATIVE AND 1525 00:58:36,120 --> 00:58:39,560 INCLUSIVE METHODS AND PROCESSES. 1526 00:58:39,560 --> 00:58:41,000 SO WE HAD TWO MAIN RESEARCH 1527 00:58:41,000 --> 00:58:44,080 QUESTIONS IN RELATION TO 1528 00:58:44,080 --> 00:58:44,920 NON-PHARMACOLOGIC 1529 00:58:44,920 --> 00:58:47,520 COMMUNITY-BASED INTERVENTIONS 1530 00:58:47,520 --> 00:58:48,840 FOR PEOPLE LIVING WITH DEMENTIA 1531 00:58:48,840 --> 00:58:49,720 AT HOME. 1532 00:58:49,720 --> 00:58:51,720 WHICH OUTCOMES SHOULD BE 1533 00:58:51,720 --> 00:58:53,600 MEASURED FROM THE PERSPECTIVE OF 1534 00:58:53,600 --> 00:58:55,840 PEOPLE LIVING WITH DEMENTIA AND 1535 00:58:55,840 --> 00:58:57,320 HEALTH AND SOCIAL PROFESSIONALS 1536 00:58:57,320 --> 00:58:59,720 AND POLICY MAKERS AND RESEARCH 1537 00:58:59,720 --> 00:59:02,040 LEADERS AND THEN HOW SHOULD 1538 00:59:02,040 --> 00:59:07,120 THESE OUTCOMES BE MEASURED. 1539 00:59:07,120 --> 00:59:13,720 SO, WE USED A RIGOROUS 1540 00:59:13,720 --> 00:59:15,120 THREE-PHASED MIXED METHOD DESIGN 1541 00:59:15,120 --> 00:59:19,080 WITH INTERVIEWS AND FOCUS GROUPS 1542 00:59:19,080 --> 00:59:21,520 WITH 55 PEOPLE. 1543 00:59:21,520 --> 00:59:28,000 AND WE IDENTIFIED 170 POSSIBLE 1544 00:59:28,000 --> 00:59:29,840 OUTCOMES IN PHASE 1 AND WORKED 1545 00:59:29,840 --> 00:59:32,200 THE OUTCOMES INTO A SUITABLE 1546 00:59:32,200 --> 00:59:33,720 FORMAT TO PEOPLE COULD ANSWER 1547 00:59:33,720 --> 00:59:37,640 THE QUESTION INS PHASE 2 WHICH 1548 00:59:37,640 --> 00:59:38,560 CONSISTS OF CONSENSUS MEETING. 1549 00:59:38,560 --> 00:59:41,960 THE MAJORITY OF OUR DATA FOR 1550 00:59:41,960 --> 00:59:45,880 PHASE 1 AND 2 WAS COLLECTED IN 1551 00:59:45,880 --> 00:59:46,080 ENGLAND. 1552 00:59:46,080 --> 00:59:49,720 54 OUTCOME ITEMS MADE THE SURVEY 1553 00:59:49,720 --> 00:59:53,480 AND PEOPLE HAD TO RATE THE 1554 00:59:53,480 --> 00:59:54,200 PERFORMANCE FROM THE PERSPECTIVE 1555 00:59:54,200 --> 00:59:57,520 OF THOSE LIVING WITH DEMENTIA. 1556 00:59:57,520 --> 01:00:00,880 IT WAS SENT TO OVER 300 PEOPLE 1557 01:00:00,880 --> 01:00:02,840 FROM THE KEY STAKEHOLDER GROUPS 1558 01:00:02,840 --> 01:00:06,040 MENTIONED EARLIER. 1559 01:00:06,040 --> 01:00:08,560 IT WAS A SENT A SECOND TIME A 1560 01:00:08,560 --> 01:00:09,720 MONTH OR TWO LATER TO REPEAT THE 1561 01:00:09,720 --> 01:00:12,040 SURVEY. 1562 01:00:12,040 --> 01:00:14,200 SO THE TWO PICTURES WERE TAKEN 1563 01:00:14,200 --> 01:00:19,680 AT THE CONSENSUS WORKSHOP FOR 1564 01:00:19,680 --> 01:00:23,360 AGREEMENT ON THE CORE OUTCOMES. 1565 01:00:23,360 --> 01:00:26,560 AND I'LL RUN THROUGH THIS 1566 01:00:26,560 --> 01:00:26,800 QUICKLY. 1567 01:00:26,800 --> 01:00:29,760 HERE'S THE PUBLICATION THAT 1568 01:00:29,760 --> 01:00:40,200 DESCRIBES ALL THE DETAILS. 1569 01:00:43,600 --> 01:00:45,480 OUR FINAL PHASE LOOKED AT WHAT 1570 01:00:45,480 --> 01:00:46,600 MATTERS MOST TO THOSE LIVING 1571 01:00:46,600 --> 01:00:48,320 WITH DEMENTIA AND HOPING YOU CAN 1572 01:00:48,320 --> 01:00:50,000 SEE THESE ON THE SCREENS. 1573 01:00:50,000 --> 01:00:53,000 WE ENLISTED THE SUPPORT OF THE 1574 01:00:53,000 --> 01:00:55,320 RENOWN CARTOONIST AND WANTED TO 1575 01:00:55,320 --> 01:00:56,720 MAKE OUR FINDINGS ACCESSIBLE TO 1576 01:00:56,720 --> 01:00:59,040 AS MANY PEOPLE AS POSSIBLE. 1577 01:00:59,040 --> 01:01:03,880 HIS FATHER HAD DEMENTIA AND HAD 1578 01:01:03,880 --> 01:01:05,640 WRITTEN A BOOK ABOUT THIS SO HE 1579 01:01:05,640 --> 01:01:07,560 HAD REAL UNDERSTANDING AND IS 1580 01:01:07,560 --> 01:01:09,160 PASSIONATE ABOUT IMPROVING THE 1581 01:01:09,160 --> 01:01:11,800 LIVES OF PEOPLE WITH DEMENTIA. 1582 01:01:11,800 --> 01:01:14,920 MANY OF THE 13 OUTCOME ITEMS 1583 01:01:14,920 --> 01:01:16,800 HAVE SUBSTANTIVE OVERLAP WITH 1584 01:01:16,800 --> 01:01:18,880 THE CONCEPT OF SOCIAL HEALTH 1585 01:01:18,880 --> 01:01:21,280 WHICH AS MANY WILL KNOW IS A 1586 01:01:21,280 --> 01:01:24,520 SHIFT IN FOCUS FROM THE SYMPTOMS 1587 01:01:24,520 --> 01:01:25,920 DEFICIT IN DISABILITY TOWARDS 1588 01:01:25,920 --> 01:01:28,240 THE CAPACITY AND POTENTIAL OF 1589 01:01:28,240 --> 01:01:31,160 THE PERSON WITH DEMENTIA. 1590 01:01:31,160 --> 01:01:33,440 SOME OUTCOMES WE DIDN'T FIND 1591 01:01:33,440 --> 01:01:34,880 REPRESENTED IN THE TRIALS WE 1592 01:01:34,880 --> 01:01:37,080 LOOKED AT IN THE SYSTEMATIC 1593 01:01:37,080 --> 01:01:38,760 REVIEW IN PHASE 1. 1594 01:01:38,760 --> 01:01:41,800 FOR EXAMPLE, FEELING SAFE AND 1595 01:01:41,800 --> 01:01:42,000 SECURE. 1596 01:01:42,000 --> 01:01:44,560 THE IMPORTANCE OF RELATIONSHIPS, 1597 01:01:44,560 --> 01:01:45,840 FEELING VALUED AND RESPECTED 1598 01:01:45,840 --> 01:01:54,200 FROM OTHERS AND HAVING A LAUGH. 1599 01:01:54,200 --> 01:01:56,840 WE CONDUCTED A LITERATURE REVIEW 1600 01:01:56,840 --> 01:01:59,600 TO IDENTIFY INSTRUMENTS THAT HAD 1601 01:01:59,600 --> 01:02:01,320 PREVIOUSLY BEEN USED IN DEMENTIA 1602 01:02:01,320 --> 01:02:03,240 RESEARCH TO DETERMINE HOW OR IF 1603 01:02:03,240 --> 01:02:06,520 THE 13 OUTCOME ITEMS COULD BE 1604 01:02:06,520 --> 01:02:06,760 MEASURED. 1605 01:02:06,760 --> 01:02:09,880 SO WE EXTRACTED OUTCOMES FROM 1606 01:02:09,880 --> 01:02:13,680 ROUGHLY 350 SOURCES AND 1607 01:02:13,680 --> 01:02:16,400 IDENTIFIED 347 MEASURES AND OF 1608 01:02:16,400 --> 01:02:19,000 THESE 76 MEASURES MET THE 1609 01:02:19,000 --> 01:02:21,400 INCLUSION CRITERIA, IA, WE 1610 01:02:21,400 --> 01:02:25,120 LOOKED AT ENGLISH LANGUAGE 1611 01:02:25,120 --> 01:02:26,040 QUESTIONNAIRES THAT PEOPLE 1612 01:02:26,040 --> 01:02:28,080 LIVING WITH DEMENTIA COMPLETED 1613 01:02:28,080 --> 01:02:31,320 AND THOSE WHO ASKED SUBJECTIVE 1614 01:02:31,320 --> 01:02:32,680 QUESTIONS AND THOSE THAT USED 1615 01:02:32,680 --> 01:02:33,200 SOCIAL RESEARCH IN THE 1616 01:02:33,200 --> 01:02:36,320 COMMUNITY. 1617 01:02:36,320 --> 01:02:39,160 SO FOR EACH OF THE 76 MEASURES 1618 01:02:39,160 --> 01:02:41,960 WE LOOKED CLOSELY AT EACH ITEM 1619 01:02:41,960 --> 01:02:45,040 AND EACH MEASURE TO STE HOW IT 1620 01:02:45,040 --> 01:02:47,120 REFLECTED EACH OF THE 13 CORE 1621 01:02:47,120 --> 01:02:49,360 OUTCOME ITEMS. 1622 01:02:49,360 --> 01:02:50,960 THIS INVOLVED NEARLY 18,000 1623 01:02:50,960 --> 01:02:56,040 ITEMS BY ITEMS ASSESSMENTS. 1624 01:02:56,040 --> 01:02:57,280 HERE'S ONE EXAMPLE. 1625 01:02:57,280 --> 01:03:00,240 SO THIS SHOWS THE ENGAGEMENT AND 1626 01:03:00,240 --> 01:03:01,480 INDEPENDENCE IN DEMENTIA 1627 01:03:01,480 --> 01:03:02,320 QUESTIONNAIRE. 1628 01:03:02,320 --> 01:03:05,360 THIS WAS THE HIGHEST SCORING 1629 01:03:05,360 --> 01:03:06,880 QUESTIONNAIRE. 1630 01:03:06,880 --> 01:03:08,360 THE ROWS ARE THE 13 CORE 1631 01:03:08,360 --> 01:03:10,520 OUTCOMES AND THE COLUMNS ARE THE 1632 01:03:10,520 --> 01:03:12,840 ITEMS IN THIS OUTCOME MEASURE. 1633 01:03:12,840 --> 01:03:15,200 SO WE SIMPLY COMPARED EACH OF 1634 01:03:15,200 --> 01:03:17,240 THE OUTCOME MEASURE ITEMS IN THE 1635 01:03:17,240 --> 01:03:18,880 COLUMNS WITH THE 13 CORE 1636 01:03:18,880 --> 01:03:21,480 OUTCOMES IN THE ROWS TRYING TO 1637 01:03:21,480 --> 01:03:23,640 IDENTIFY WHERE THERE WAS A GOOD 1638 01:03:23,640 --> 01:03:23,840 MATCH. 1639 01:03:23,840 --> 01:03:27,440 WE DID THIS ON A FOUR-POINT 1640 01:03:27,440 --> 01:03:27,720 SCALE. 1641 01:03:27,720 --> 01:03:30,400 THE GREEN REPRESENTS VERY GOOD, 1642 01:03:30,400 --> 01:03:33,600 ORANGE ADEQUATE, YELLOW, 1643 01:03:33,600 --> 01:03:36,280 DOUBTFUL AND THE RED INADEQUATE. 1644 01:03:36,280 --> 01:03:40,080 EACH MEASURE WAS ASSESSED BY TWO 1645 01:03:40,080 --> 01:03:41,120 RESEARCHERS AND THOSE AGREED 1646 01:03:41,120 --> 01:03:43,520 WITH THE ASSESSMENTS AND THE 1647 01:03:43,520 --> 01:03:44,640 REST WERE DISCUSSED AND A 1648 01:03:44,640 --> 01:03:51,120 DECISION WAS MADE. 1649 01:03:51,120 --> 01:03:54,160 SO WE FOUND AN INCREDIBLE LEVEL 1650 01:03:54,160 --> 01:03:56,360 OF DISSONANCE BETWEEN THE 13 1651 01:03:56,360 --> 01:03:59,040 CORE ITEMS AND THE TENTS OF THE 1652 01:03:59,040 --> 01:04:00,960 76 OUTCOME MEASUREMENT 1653 01:04:00,960 --> 01:04:02,440 INSTRUMENTS WE WERE ASSESSED. 1654 01:04:02,440 --> 01:04:05,720 SO THIS TABLE SHOWS THE TOP 10 1655 01:04:05,720 --> 01:04:06,840 OUTCOME MEASUREMENT INSTRUMENTS 1656 01:04:06,840 --> 01:04:09,400 THAT COVERED THE MOST ITEMS IN 1657 01:04:09,400 --> 01:04:11,640 OUR 13 CORE OUTCOMES. 1658 01:04:11,640 --> 01:04:13,720 SO AS SEEN IN THE PREVIOUS SLIDE 1659 01:04:13,720 --> 01:04:15,680 THE MOST RELEVANT INSTRUMENT TO 1660 01:04:15,680 --> 01:04:17,280 MEASURE THE CAUSE WAS THE 1661 01:04:17,280 --> 01:04:22,080 ENGAGEMENT AND INDEPENDENCE IN 1662 01:04:22,080 --> 01:04:23,440 DEMENTIA QUESTIONNAIRE. 1663 01:04:23,440 --> 01:04:26,760 THIS WAS ADEQUATE OR VERY GOOD 1664 01:04:26,760 --> 01:04:32,200 FOR ONLY 7 OF 13 OUTCOME ITEMS. 1665 01:04:32,200 --> 01:04:35,840 MANY OF THE MOST FREQUENTLY USED 1666 01:04:35,840 --> 01:04:37,760 HAVE ADDED A FEW TO THE SLIDE 1667 01:04:37,760 --> 01:04:46,960 AND HIGHLIGHTED THE POPULAR ONLY 1668 01:04:46,960 --> 01:04:48,320 THE SELF-REPORT MEASURE 1669 01:04:48,320 --> 01:04:49,920 HIGHLIGHT U.K. NATIONAL 1670 01:04:49,920 --> 01:04:51,960 INSTITUTE FOR HEALTH AND CARE 1671 01:04:51,960 --> 01:04:52,320 GUIDELINES. 1672 01:04:52,320 --> 01:04:54,800 BUT THIS MEASURE WAS ONLY RATED 1673 01:04:54,800 --> 01:04:57,720 ADEQUATE OR VERY GOOD FOR TWO OF 1674 01:04:57,720 --> 01:04:59,920 THE 13 CORE OUTCOME ITEMS. 1675 01:04:59,920 --> 01:05:04,600 AND OUR RESEARCH HIGHLIGHTS THE 1676 01:05:04,600 --> 01:05:08,720 EXCITING MEASUREMENTS DO NOT 1677 01:05:08,720 --> 01:05:11,000 REFLECT WHAT STAKEHOLDERS TELL 1678 01:05:11,000 --> 01:05:11,400 YOU. 1679 01:05:11,400 --> 01:05:12,600 SO WHAT'S THIS MEAN? 1680 01:05:12,600 --> 01:05:14,440 WE NEED TO KEEP OUR FOCUS ON 1681 01:05:14,440 --> 01:05:16,360 WHAT MATTERS MOST TO THOSE 1682 01:05:16,360 --> 01:05:23,440 LIVING WITH DEMENTIA AT HOME AND 1683 01:05:23,440 --> 01:05:23,760 NEIGHBORHOODS. 1684 01:05:23,760 --> 01:05:25,160 THERE'S MUCH WORK STILL TO DO 1685 01:05:25,160 --> 01:05:25,440 HERE. 1686 01:05:25,440 --> 01:05:28,160 WE BELIEVE FOCUSSING ON THE 13 1687 01:05:28,160 --> 01:05:30,080 CORE OUTCOME AREAS AND MEASURING 1688 01:05:30,080 --> 01:05:35,360 THEM CONSISTENTLY WILL INCREASE 1689 01:05:35,360 --> 01:05:37,480 THE QUALITY OF EVIDENCE AND WE 1690 01:05:37,480 --> 01:05:43,640 NEED TO DEVELOP AND TEST NEW 1691 01:05:43,640 --> 01:05:45,560 MEASUREMENTS TO DETERMINE WHAT 1692 01:05:45,560 --> 01:05:48,120 MATTERS MOST TO THOSE LIVING 1693 01:05:48,120 --> 01:05:49,640 WITH DEMENTIA AND LIFE CARE 1694 01:05:49,640 --> 01:05:51,240 PARTNERS AND LOOK AT 1695 01:05:51,240 --> 01:05:52,160 COLLABORATIVE RESEARCH FOR 1696 01:05:52,160 --> 01:05:54,720 INVESTIGATORS MAKING PROGRESS ON 1697 01:05:54,720 --> 01:05:56,200 PERSON-CENTERED MEASUREMENT, 1698 01:05:56,200 --> 01:05:57,920 EVALUATION AND WE'VE BEGUN TO DO 1699 01:05:57,920 --> 01:06:00,080 WORK AROUND THIS DEVELOPING AN 1700 01:06:00,080 --> 01:06:01,520 OUTCOME MEASURE AND WE'LL BE 1701 01:06:01,520 --> 01:06:02,840 SEEKING FUNDING TO FURTHER THE 1702 01:06:02,840 --> 01:06:03,040 WORK. 1703 01:06:03,040 --> 01:06:05,240 IT WOULD BE GREAT TO WORK WITH 1704 01:06:05,240 --> 01:06:07,120 OTHERS PLANNING TO RUN STUDIES 1705 01:06:07,120 --> 01:06:10,200 WHERE THIS NEW MEASURE COULD BE 1706 01:06:10,200 --> 01:06:11,840 ADMINISTERED ALONG SIDE OTHER 1707 01:06:11,840 --> 01:06:13,760 MEASURES TO TEST THE PSYCH 1708 01:06:13,760 --> 01:06:14,840 METRIC PROPERTIES AND 1709 01:06:14,840 --> 01:06:16,040 SENSITIVITY TO MEASURING CHANGE. 1710 01:06:16,040 --> 01:06:19,080 IF YOU'RE INTERESTED IN WORKING 1711 01:06:19,080 --> 01:06:29,640 WITH US, PLEASE DO LET US KNOW. 1712 01:06:37,160 --> 01:06:43,040 HERE ARE THE STUDY REFERENCES 1713 01:06:43,040 --> 01:06:44,400 AND SUMMIT. 1714 01:06:44,400 --> 01:06:46,400 >>I'LL CONTINUE OUR DISCUSSION 1715 01:06:46,400 --> 01:06:47,720 REGARDING MEANINGFUL OUTCOMES 1716 01:06:47,720 --> 01:06:50,680 WITH A FOCUS ON POSITIVE AND 1717 01:06:50,680 --> 01:06:54,040 NEGATIVE EMOTION AND AFFECT 1718 01:06:54,040 --> 01:06:56,880 BALANCE. 1719 01:06:56,880 --> 01:06:58,560 THANK YOU TO THE NATIONAL 1720 01:06:58,560 --> 01:07:01,880 INSTITUTE ON AGES AND NATIONAL 1721 01:07:01,880 --> 01:07:02,560 INSTITUTE OF HEALTH IN 1722 01:07:02,560 --> 01:07:03,320 SUPPORTING OUR WORK. 1723 01:07:03,320 --> 01:07:05,760 THE CDC AND THEIR DEFINITION OF 1724 01:07:05,760 --> 01:07:07,720 WELL BEING MENTIONED 1725 01:07:07,720 --> 01:07:11,440 FULFILLMENT, LIFE SATISFACTION, 1726 01:07:11,440 --> 01:07:12,080 POSITIVE FUNCTIONING AND THE 1727 01:07:12,080 --> 01:07:14,960 PRESENCE OF POSITIVE EMOTIONS 1728 01:07:14,960 --> 01:07:18,000 AND ABSENCE OF NEGATIVE 1729 01:07:18,000 --> 01:07:19,240 EMOTIONS. 1730 01:07:19,240 --> 01:07:21,880 STUDIES WITH PEOPLE LIVING WITH 1731 01:07:21,880 --> 01:07:23,200 DEMENTIA CONFIRMED HOLISTIC 1732 01:07:23,200 --> 01:07:25,080 HEALTH AND POSITIVE EMOTIONS AND 1733 01:07:25,080 --> 01:07:25,640 WELL BEING ARE MEANINGFUL 1734 01:07:25,640 --> 01:07:28,200 OUTCOMES. 1735 01:07:28,200 --> 01:07:30,840 DRAWING FROM THE LITERATURE ON 1736 01:07:30,840 --> 01:07:36,680 LIVED EXPERIENCES OF WELL-BEING 1737 01:07:36,680 --> 01:07:39,080 THERE WAS A MAP OF PROPOSED WELL 1738 01:07:39,080 --> 01:07:41,960 BEING DOMAINS IN DEMENTIA. 1739 01:07:41,960 --> 01:07:43,720 CONCEPTUAL MODELS OF WELL BEING 1740 01:07:43,720 --> 01:07:45,720 INCLUDE POSITIVE EMOTIONS AS A 1741 01:07:45,720 --> 01:07:46,640 KEY COMPONENT AND THAT IS THE 1742 01:07:46,640 --> 01:07:51,800 FOCUS OF THIS PRESENTATION. 1743 01:07:51,800 --> 01:07:54,840 IN THEIR REVIEW THEY IDENTIFIED 1744 01:07:54,840 --> 01:07:56,120 35 SELF-REPORT MEASURES THAT 1745 01:07:56,120 --> 01:07:57,440 CORRESPONDED TO THE DOMAINS OF 1746 01:07:57,440 --> 01:07:59,880 WELL BEING DEPICTED IN THE 1747 01:07:59,880 --> 01:08:00,320 MODEL. 1748 01:08:00,320 --> 01:08:01,840 SIX MEASURES WERE SPECIFICALLY 1749 01:08:01,840 --> 01:08:05,480 DEVELOPED FOR PEOPLE WITH 1750 01:08:05,480 --> 01:08:05,720 DEMENTIA. 1751 01:08:05,720 --> 01:08:09,160 THE MEASURES VARIED IN LENGTH 1752 01:08:09,160 --> 01:08:12,880 AND PROPERTIES AND HIGHLIGHTS 1753 01:08:12,880 --> 01:08:18,360 THE NEED FOR FURTHER DEVELOPMENT 1754 01:08:18,360 --> 01:08:21,360 OF SELF-REPORT MEASUREMENTS AND 1755 01:08:21,360 --> 01:08:23,920 PARTICIPANTS LIVING WITH 1756 01:08:23,920 --> 01:08:25,800 DEMENTIA TOLD US THE FORMAT OF 1757 01:08:25,800 --> 01:08:26,800 THE RESEARCH WAS IMPORTANT 1758 01:08:26,800 --> 01:08:27,800 INCLUDING THE WORDING OF 1759 01:08:27,800 --> 01:08:29,360 QUESTIONS AND THE NUMBER OF 1760 01:08:29,360 --> 01:08:30,880 RESPONSE CHOICES. 1761 01:08:30,880 --> 01:08:34,560 IN ADDITION TO EMPHASIZING THE 1762 01:08:34,560 --> 01:08:37,280 IMPORTANCE OF WELL DESIGN 1763 01:08:37,280 --> 01:08:38,840 COLLABORATIVELY DESIGN RESEARCH 1764 01:08:38,840 --> 01:08:40,560 MEASURES PARTICIPANTS TOLD US 1765 01:08:40,560 --> 01:08:43,080 THEY VALUED OPEN ENDED QUESTIONS 1766 01:08:43,080 --> 01:08:45,440 WHENEVER POSSIBLE TO ALLOW THEM 1767 01:08:45,440 --> 01:08:47,160 TO TELL THEIR STORY IN ADDITION 1768 01:08:47,160 --> 01:08:49,280 TO A NUMBER OR RATING 1769 01:08:49,280 --> 01:08:51,560 HIGHLIGHTING THE VALUE OF MIXED 1770 01:08:51,560 --> 01:08:52,800 METHODS. 1771 01:08:52,800 --> 01:08:53,560 INDIVIDUALS WITH LIVED 1772 01:08:53,560 --> 01:08:55,360 EXPERIENCE EMPHASIZE THE CONTEXT 1773 01:08:55,360 --> 01:08:56,240 OF THE DATA COLLECTION. 1774 01:08:56,240 --> 01:08:57,840 THE IMPORTANCE OF ESTABLISHING 1775 01:08:57,840 --> 01:08:59,600 TRUST WITH THE RESEARCHER AND 1776 01:08:59,600 --> 01:09:02,040 BEING ABLE TO COMPLETE A 1777 01:09:02,040 --> 01:09:04,000 SELF-REPORT MEASURE IN A 1778 01:09:04,000 --> 01:09:04,960 COMFORTABLE, DISTRACTION-FREE 1779 01:09:04,960 --> 01:09:07,080 ENVIRONMENT AT A TIME OF DAY 1780 01:09:07,080 --> 01:09:09,320 WHEN THEY WERE AT THEIR BEST. 1781 01:09:09,320 --> 01:09:11,680 LANGUAGE DIFFICULTIES OR 1782 01:09:11,680 --> 01:09:13,280 PROGRESSION IN DISEASE MAY POSE 1783 01:09:13,280 --> 01:09:15,040 A CHALLENGE TO THE USE OF 1784 01:09:15,040 --> 01:09:16,200 SELF-REPORT MEASURES. 1785 01:09:16,200 --> 01:09:18,000 IN ORDER TO USE SELF-REPORT 1786 01:09:18,000 --> 01:09:19,720 MEASURES ACROSS A BROADER RANGE 1787 01:09:19,720 --> 01:09:21,400 OF DISEASE STAGES AND DEMENTIA 1788 01:09:21,400 --> 01:09:24,040 TYPES AND TRAJECTORIES WE MAY 1789 01:09:24,040 --> 01:09:25,840 NEED TO MODIFY EXISTING MEASURES 1790 01:09:25,840 --> 01:09:30,760 OR CREATE NEW MEASURES AND 1791 01:09:30,760 --> 01:09:34,400 METHODS. 1792 01:09:34,400 --> 01:09:35,680 COLLABORATIONS HAVE SUCCESSFULLY 1793 01:09:35,680 --> 01:09:37,360 ADAPTED SELF-REPORT MEASURES AND 1794 01:09:37,360 --> 01:09:38,240 ENHANCE USABILITY ACROSS A 1795 01:09:38,240 --> 01:09:40,400 BROADER RANGE OF FUNCTION. 1796 01:09:40,400 --> 01:09:42,880 AND SEVERAL STUDIES HAVE 1797 01:09:42,880 --> 01:09:44,000 DEMONSTRATED INDIVIDUALS WITH 1798 01:09:44,000 --> 01:09:45,480 ADVANCED COGNITIVE IMPAIRMENT 1799 01:09:45,480 --> 01:09:50,120 ARE ABLE TO SELF-REPORT 1800 01:09:50,120 --> 01:09:52,080 EMOTIONAL WELL BEING USING 1801 01:09:52,080 --> 01:09:53,720 YES/NO OPTIONS OR PICTURES. 1802 01:09:53,720 --> 01:09:56,360 WHEN SELF-REPORT IS NOT 1803 01:09:56,360 --> 01:09:58,840 FEASIBLE, OBSERVER RATED 1804 01:09:58,840 --> 01:10:00,600 MEASURES HAVE BEEN USED RELIABLE 1805 01:10:00,600 --> 01:10:02,480 AND DEMONSTRATED RELIABILITY AND 1806 01:10:02,480 --> 01:10:04,960 FEASIBILITY AND INTERPRETABILITY 1807 01:10:04,960 --> 01:10:09,640 IN PERSONS LIVING WITH DEMENTIA. 1808 01:10:09,640 --> 01:10:13,440 METHODOLOGICAL CHALLENGES HAVE 1809 01:10:13,440 --> 01:10:14,880 BEEN REPORTED WITH VARIABILITY 1810 01:10:14,880 --> 01:10:16,800 WITH INDIVIDUALS AND FROM HOUR 1811 01:10:16,800 --> 01:10:20,600 TO HOUR THE RESULTS VARIED. 1812 01:10:20,600 --> 01:10:24,160 SOME POINT TO FREQUENT 1813 01:10:24,160 --> 01:10:27,720 MEASUREMENT OF MOMENTARY WELL 1814 01:10:27,720 --> 01:10:28,040 BEING. 1815 01:10:28,040 --> 01:10:29,160 MANY MEASURES HAVE BEEN 1816 01:10:29,160 --> 01:10:30,640 DEVELOPED FOR ACTIVITY 1817 01:10:30,640 --> 01:10:33,560 ENGAGEMENT SUCH AS CREATIVE ARTS 1818 01:10:33,560 --> 01:10:35,320 OR INDIVIDUALIZED MUSIC. 1819 01:10:35,320 --> 01:10:36,320 OBSERVATION-BASED MEASURES ARE 1820 01:10:36,320 --> 01:10:39,400 SENSITIVE TO DYNAMIC CHANGES IN 1821 01:10:39,400 --> 01:10:41,440 THE ENVIRONMENT AND THE 1822 01:10:41,440 --> 01:10:47,200 SITUATIONAL CONTEXT SO THE 1823 01:10:47,200 --> 01:10:48,840 ANTETHIAN 1824 01:10:48,840 --> 01:10:58,000 ANTETHIS IS -- ANTECEDANTS ARE 1825 01:10:58,000 --> 01:10:59,400 IMPORTANT AND SOME REQUIRE 1826 01:10:59,400 --> 01:11:02,280 TRAINING TO PRODUCE RELIABILITY. 1827 01:11:02,280 --> 01:11:05,360 IF NURSING STAFF RATINGS ARE 1828 01:11:05,360 --> 01:11:08,320 USED THERE MAY BE MORE NEGATIVE 1829 01:11:08,320 --> 01:11:09,480 RATHER THAN POSITIVE EXPRESSIONS 1830 01:11:09,480 --> 01:11:10,800 AND BEHAVIORS AND MORE WORK IS 1831 01:11:10,800 --> 01:11:12,200 NEEDED TO UNDERSTAND THE ABILITY 1832 01:11:12,200 --> 01:11:14,200 OF EACH MEASURE TO DETECT 1833 01:11:14,200 --> 01:11:16,040 CLINICALLY SIGNIFICANT 1834 01:11:16,040 --> 01:11:20,920 IMPROVEMENT AFTER INTERVENTION. 1835 01:11:20,920 --> 01:11:22,880 OTHER RESEARCHERS HAVE DONE A 1836 01:11:22,880 --> 01:11:24,400 GREAT DEAL OF WORK PARTICULARLY 1837 01:11:24,400 --> 01:11:26,680 IN THE NURSING HOME ENVIRONMENT 1838 01:11:26,680 --> 01:11:28,320 WITH OBSERVABLE DTHERS OF 1839 01:11:28,320 --> 01:11:30,760 POSITIVE AND NEGATIVE EMOTION 1840 01:11:30,760 --> 01:11:31,960 USING AFFECT BALANCE. 1841 01:11:31,960 --> 01:11:34,120 AFFECT IS AN EXPERIENCE OF 1842 01:11:34,120 --> 01:11:35,760 FEELING OR EMOTION IN THE 1843 01:11:35,760 --> 01:11:35,960 MOMENT. 1844 01:11:35,960 --> 01:11:38,280 AFFECT BALANCE IS THE RATIO OF 1845 01:11:38,280 --> 01:11:41,800 POSITIVE TO NEGATIVE EMOTION. 1846 01:11:41,800 --> 01:11:44,440 POSITIVE AND NEGATIVE AFFECT ARE 1847 01:11:44,440 --> 01:11:46,200 SOMEWHAT CORRELATED BUT 1848 01:11:46,200 --> 01:11:48,960 INDEPENDENTLY ASSOCIATED WITH 1849 01:11:48,960 --> 01:11:50,560 DIFFERENT INDIVIDUAL AND 1850 01:11:50,560 --> 01:11:52,080 ENVIRONMENTAL VARIABLES. 1851 01:11:52,080 --> 01:11:53,320 OTHER WORK WITH YOUNGER 1852 01:11:53,320 --> 01:11:54,840 POPULATIONS WITHOUT DEMENTIA 1853 01:11:54,840 --> 01:11:56,640 SHOWS HIGHER RATIOS OF POSITIVE 1854 01:11:56,640 --> 01:12:00,280 TO NEGATIVE EMOTIONS ARE 1855 01:12:00,280 --> 01:12:01,080 ASSOCIATED WITH RESILIENCE AND 1856 01:12:01,080 --> 01:12:02,440 GREATER OPENNESS TO CREATIVITY 1857 01:12:02,440 --> 01:12:04,120 AND POSITIVE ENGAGEMENT. 1858 01:12:04,120 --> 01:12:06,880 THE HIGHER RATIO OF POSITIVE TO 1859 01:12:06,880 --> 01:12:08,360 NEGATIVE MOTION MAY BE BOTH 1860 01:12:08,360 --> 01:12:11,160 OUTCOME AND MEDIATOR OF 1861 01:12:11,160 --> 01:12:12,360 ENGAGEMENT LEADING TO GREATER 1862 01:12:12,360 --> 01:12:13,760 WELL BEING. 1863 01:12:13,760 --> 01:12:14,840 IN FURTHER SUPPORT OF AFFECT 1864 01:12:14,840 --> 01:12:17,600 BALANCE AS A PROMISING OUTCOME 1865 01:12:17,600 --> 01:12:18,920 MEASURE, HIGHER RATIOS OF 1866 01:12:18,920 --> 01:12:21,600 POSITIVE TO NEGATIVE EMOTIONS 1867 01:12:21,600 --> 01:12:24,880 HAVE BEEN KNOWN TO DIFFERENTIATE 1868 01:12:24,880 --> 01:12:27,960 LOWER AND HIGHER LEVELS OF 1869 01:12:27,960 --> 01:12:29,280 SELF-REPORTED WELL-BEING. 1870 01:12:29,280 --> 01:12:31,160 POSITIVE AFFECT HAS BEEN 1871 01:12:31,160 --> 01:12:32,600 ASSOCIATED WITH ACTIVITY 1872 01:12:32,600 --> 01:12:33,720 ENGAGEMENT AND AFFECT BALANCE IS 1873 01:12:33,720 --> 01:12:35,320 SENSITIVE TO CHANGE IN THE 1874 01:12:35,320 --> 01:12:36,840 QUALITY OF COMMUNICATION AND 1875 01:12:36,840 --> 01:12:39,360 QUALITY OF STAFF INTERACTION IN 1876 01:12:39,360 --> 01:12:40,360 NURSING HOMES. 1877 01:12:40,360 --> 01:12:41,320 AFFECT BALANCE IS ALSO 1878 01:12:41,320 --> 01:12:44,320 ASSOCIATED WITH QUALITIES OF THE 1879 01:12:44,320 --> 01:12:46,960 PHYSICAL SETTING, HIGHER LEVELS 1880 01:12:46,960 --> 01:12:50,520 OF AFFECT BALANCE HAVE BEEN IN 1881 01:12:50,520 --> 01:12:53,800 HOMES IN THE NETHERLANDS VERSUS 1882 01:12:53,800 --> 01:12:55,200 TRADITIONAL CARE MODEL HOMES. 1883 01:12:55,200 --> 01:12:57,080 WE NEED TO LEARN ABOUT THE 1884 01:12:57,080 --> 01:12:58,240 CORRELATES OF AFFECT BALANCE FOR 1885 01:12:58,240 --> 01:13:00,840 PERSONS WITH DEMENTIA IN 1886 01:13:00,840 --> 01:13:02,800 COMMUNITY SETTINGS AND WHETHER A 1887 01:13:02,800 --> 01:13:04,880 HIGHER THRESHOLD OF POSITIVE TO 1888 01:13:04,880 --> 01:13:09,320 NEGATIVE EMOTIONS MAY RESULT IN 1889 01:13:09,320 --> 01:13:10,440 BENEFITS AND WELL-BEING AND NEED 1890 01:13:10,440 --> 01:13:13,000 TO CONTINUE THE WORK ON TARGETED 1891 01:13:13,000 --> 01:13:13,720 INTERVENTIONS SUCH AS 1892 01:13:13,720 --> 01:13:15,560 COMMUNICATION FOCUSSED 1893 01:13:15,560 --> 01:13:16,600 INTERVENTIONS, 1894 01:13:16,600 --> 01:13:17,520 ENVIRONMENT-FOCUSSED 1895 01:13:17,520 --> 01:13:17,960 INTERVENTIONS AND 1896 01:13:17,960 --> 01:13:21,200 PREFERENCE-BASED ENGAGEMENT. 1897 01:13:21,200 --> 01:13:23,920 TO BETTER CAPTURE MEANINGFUL 1898 01:13:23,920 --> 01:13:25,240 OUTCOMES RELATED TO WELL-BEING 1899 01:13:25,240 --> 01:13:26,920 SUCH AS POSITIVE EMOTION AND 1900 01:13:26,920 --> 01:13:28,560 AFFECT BALANCE ACROSS THE 1901 01:13:28,560 --> 01:13:29,880 TRAJECTORY OF EARLY AND LATER 1902 01:13:29,880 --> 01:13:32,640 STAGES OF DISEASE, WE MAY NEED 1903 01:13:32,640 --> 01:13:35,000 TO ADAPT SELF-REPORT MEASURES, 1904 01:13:35,000 --> 01:13:37,080 DEVELOP NEW OBSERVABLE MEASURES 1905 01:13:37,080 --> 01:13:40,080 OF MOMENTARY WELL BEING AND USE 1906 01:13:40,080 --> 01:13:42,360 TIME SERIES ANALYSIS TO BETTER 1907 01:13:42,360 --> 01:13:43,520 UNDERSTAND VARIATIONS, PATTERNS 1908 01:13:43,520 --> 01:13:45,520 AND CONTEXT. 1909 01:13:45,520 --> 01:13:46,920 INTEGRATING CARE PARTNERS' 1910 01:13:46,920 --> 01:13:49,760 KNOWLEDGE OF THE LONG STANDING 1911 01:13:49,760 --> 01:13:51,360 PATTERNS OF EMOTIONAL EXPRESSION 1912 01:13:51,360 --> 01:13:54,400 MAY IMPROVE THE ACCURACY OF OUR 1913 01:13:54,400 --> 01:13:55,320 IMPROVED RATINGS AND 1914 01:13:55,320 --> 01:13:57,320 TECHNOLOGIES ARE CURRENTLY BEING 1915 01:13:57,320 --> 01:14:00,680 DEVELOPED TO ENABLE 1916 01:14:00,680 --> 01:14:01,840 SIMULTANEOUSLY MEASUREMENT MUCH 1917 01:14:01,840 --> 01:14:04,040 OF AFFECT BALANCE AND IN WHICH 1918 01:14:04,040 --> 01:14:05,200 THE EMOTIONS ARE EXPERIENCES. 1919 01:14:05,200 --> 01:14:09,360 MY OWN WORK ON AT HOMENESS HAS 1920 01:14:09,360 --> 01:14:11,000 FOCUSSED ON MEANINGFUL PERSON 1921 01:14:11,000 --> 01:14:13,160 ENVIRONMENT RELATIONSHIP. 1922 01:14:13,160 --> 01:14:15,920 AT HOMENESS HAS BEEN ASSOCIATED 1923 01:14:15,920 --> 01:14:17,720 WITH REDUCED DEPRESSION AND 1924 01:14:17,720 --> 01:14:21,280 QUALITY OF LIFE AND STUDIES 1925 01:14:21,280 --> 01:14:24,040 SUGGEST HIGHER RATIOS OF 1926 01:14:24,040 --> 01:14:27,000 EXPERIENCE OF HOMENESS IMPACT 1927 01:14:27,000 --> 01:14:30,840 WELL BEING AND AFFECT BALANCE 1928 01:14:30,840 --> 01:14:32,880 MAY ENABLE RELATIONSHIP ACROSS A 1929 01:14:32,880 --> 01:14:34,560 BROADER RANGE OF COGNITIVE AND 1930 01:14:34,560 --> 01:14:36,320 LANGUAGE ABILITIES AND ENABLE 1931 01:14:36,320 --> 01:14:38,440 RESEARCH ON ENHANCING THE RATIO 1932 01:14:38,440 --> 01:14:40,040 OF POSITIVE EXPERIENCES OF HOME 1933 01:14:40,040 --> 01:14:41,440 MAY RESULT IN HIGHER LEVELS OF 1934 01:14:41,440 --> 01:14:44,040 AFFECT BALANCE. 1935 01:14:44,040 --> 01:14:46,560 WHAT RESOURCES MIGHT ENABLE THIS 1936 01:14:46,560 --> 01:14:47,160 WORK? 1937 01:14:47,160 --> 01:14:49,520 TECHNOLOGIES TO CAPTURE A 1938 01:14:49,520 --> 01:14:50,920 BROADER RANGE OF 1939 01:14:50,920 --> 01:14:53,240 MICROEXPRESSIONS OF EMOTION 1940 01:14:53,240 --> 01:14:55,960 INCLUDING FACIAL, POSTURAL, 1941 01:14:55,960 --> 01:14:58,560 BEHAVIORAL AND VOCATIONAL AND 1942 01:14:58,560 --> 01:15:01,640 METHODOLOGIES FOR MOMENTARY AND 1943 01:15:01,640 --> 01:15:02,400 WITHIN INDIVIDUAL TIME SERIES 1944 01:15:02,400 --> 01:15:05,200 ANALYSIS TO EN HAS THE QUALITY 1945 01:15:05,200 --> 01:15:06,120 OF DATA AVAILABLE IN SMALLER 1946 01:15:06,120 --> 01:15:09,280 SAMPLE STUDIES. 1947 01:15:09,280 --> 01:15:11,120 WE NEED LONGER TERM MIXED 1948 01:15:11,120 --> 01:15:13,560 METHODS STUDIES THAT USE 1949 01:15:13,560 --> 01:15:14,760 SELF-REPORT AND CAREGIVER 1950 01:15:14,760 --> 01:15:17,280 INFORMED AND OBSERVATIONAL 1951 01:15:17,280 --> 01:15:19,880 METHODS TO BETTER UNDERSTAND 1952 01:15:19,880 --> 01:15:22,160 TRAJECTORIES OF AFFECT BALANCE 1953 01:15:22,160 --> 01:15:24,480 AS COGNITIVE FUNCTION DECLINES 1954 01:15:24,480 --> 01:15:26,080 AND TEST INTERVENTION AND 1955 01:15:26,080 --> 01:15:26,840 COLLABORATIVE RESEARCH WITH 1956 01:15:26,840 --> 01:15:29,160 PERSONS LIVING WITH DEMENTIA AND 1957 01:15:29,160 --> 01:15:34,400 CAREGIVERS TO DESIGN, IMPLEMENT 1958 01:15:34,400 --> 01:15:37,600 AND LOOK AT SELF-RATED MEASURES 1959 01:15:37,600 --> 01:15:38,440 IN DIVERSE CULTURAL CONTEXTS. 1960 01:15:38,440 --> 01:15:41,600 THANK YOU. 1961 01:15:41,600 --> 01:15:44,240 >>OUR NEXT SPEAKER IS DR 1962 01:15:44,240 --> 01:15:56,800 >>LEE JENNINGS. 1963 01:15:56,800 --> 01:15:59,080 YOU CAN SUBMIT QUESTIONS DURING 1964 01:15:59,080 --> 01:16:00,720 THE SEND LIVE FEEDBACK FEATURE 1965 01:16:00,720 --> 01:16:01,320 FOR EVERYONE WHO REGISTERED 1966 01:16:01,320 --> 01:16:04,360 THROUGH THE ZOOM. 1967 01:16:04,360 --> 01:16:08,800 I WILL SPEAK ABOUT PERSONALIZED 1968 01:16:08,800 --> 01:16:09,640 HOME MEASUREMENT UP DEMENTIA 1969 01:16:09,640 --> 01:16:10,840 CARE AND RESEARCH. 1970 01:16:10,840 --> 01:16:13,120 AND WHY PERSON-CENTERED OUTCOMES 1971 01:16:13,120 --> 01:16:16,120 AND IT'S HELPFUL TO ADDRESS TWO 1972 01:16:16,120 --> 01:16:17,160 MEASUREMENT QUESTIONS. 1973 01:16:17,160 --> 01:16:20,640 THE FIRST BEING DOES THE CARE WE 1974 01:16:20,640 --> 01:16:23,200 DELIVER HELP PEOPLE LIVING WITH 1975 01:16:23,200 --> 01:16:24,640 DEMENTIA AND PARTNER ACHIEVE THE 1976 01:16:24,640 --> 01:16:26,920 OUTCOMES MOST IMPORTANT TO THEM. 1977 01:16:26,920 --> 01:16:29,160 ONCE WE UNDERSTAND WHAT HEALTH 1978 01:16:29,160 --> 01:16:31,200 GOALS OR LIFE GOALS ARE MOST 1979 01:16:31,200 --> 01:16:32,560 IMPORTANT ARE THE TREATMENTS 1980 01:16:32,560 --> 01:16:35,440 WE'RE RECOMMENDING AND 1981 01:16:35,440 --> 01:16:37,080 TREATMENTS PEOPLE ARE RECEIVING 1982 01:16:37,080 --> 01:16:37,600 IN LINE? 1983 01:16:37,600 --> 01:16:40,200 THAT'S THE IMPETUS FOR THE AREA 1984 01:16:40,200 --> 01:16:40,680 OF RESEARCH. 1985 01:16:40,680 --> 01:16:42,200 AND IT'S AN EXCITING TIME TO BE 1986 01:16:42,200 --> 01:16:47,200 IN THE FIELD THERE'S BEEN A LOT 1987 01:16:47,200 --> 01:16:52,040 OF WORK AND THERE'S A PARADIGM 1988 01:16:52,040 --> 01:16:55,120 SHIFT MOVING FROM 1989 01:16:55,120 --> 01:16:56,680 DISEASE-ORIENTED CARE TO CARE 1990 01:16:56,680 --> 01:16:59,200 GOAL CONCORDANT AND IN 1991 01:16:59,200 --> 01:17:02,280 CONCORDANCE WITH WHAT MATTERS 1992 01:17:02,280 --> 01:17:03,360 MOST TO INDIVIDUALS WAS 1993 01:17:03,360 --> 01:17:05,000 IMPORTANT IN DEMENTIA SERVICES 1994 01:17:05,000 --> 01:17:07,200 RESEARCH. 1995 01:17:07,200 --> 01:17:10,600 THERE'S DIFFERENT WAYS TO THINK 1996 01:17:10,600 --> 01:17:12,560 ABOUT PERSON-CENTERED OUTCOME 1997 01:17:12,560 --> 01:17:14,120 MEASUREMENT AND WANT TO COMPARE 1998 01:17:14,120 --> 01:17:16,600 AND CONTRAST INDIVIDUALIZED 1999 01:17:16,600 --> 01:17:18,040 OUTCOMES VERSUS POPULATION OR 2000 01:17:18,040 --> 01:17:19,920 COHORT OUTCOMES. 2001 01:17:19,920 --> 01:17:23,200 AN EXAMPLE I'LL USE IS GOAL 2002 01:17:23,200 --> 01:17:24,480 ATTAINMENT SCALING. 2003 01:17:24,480 --> 01:17:25,680 WE'LL FOCUS ON THAT FOR THE REST 2004 01:17:25,680 --> 01:17:28,080 OF THE TALK AND I WANT TO 2005 01:17:28,080 --> 01:17:32,080 COMPARE IT TO POPULATION OR 2006 01:17:32,080 --> 01:17:35,680 COHORT OUTCOMES USING A SCORE. 2007 01:17:35,680 --> 01:17:38,880 IT'S HELPFUL WHEN THE FOCUS IS 2008 01:17:38,880 --> 01:17:40,920 UNDERSTANDING PERSON-SPECIFIC 2009 01:17:40,920 --> 01:17:41,280 GOALS. 2010 01:17:41,280 --> 01:17:45,200 SCALING IS A WAY TO TAKE A 2011 01:17:45,200 --> 01:17:47,280 PERSONALIZED GOAL AND OPERATION 2012 01:17:47,280 --> 01:17:49,800 IZE IT FROM CATEGORIES FROM MUCH 2013 01:17:49,800 --> 01:17:52,160 LESS THAN EXPECTED TO MUCH MORE 2014 01:17:52,160 --> 01:17:54,840 THAN EXPECTED GOAL ATTAINMENT. 2015 01:17:54,840 --> 01:17:57,880 THE OUTCOME IS INDIVIDUALIZED 2016 01:17:57,880 --> 01:17:59,920 BUT IT'S STANDARDIZED ACROSS THE 2017 01:17:59,920 --> 01:18:06,120 GROUP AND IT ACCOMMODATES 2018 01:18:06,120 --> 01:18:09,440 INDIVIDUALIZED GOALS AND A MEAN 2019 01:18:09,440 --> 01:18:11,760 SCORE IS LOOKING AT THE FOCUS ON 2020 01:18:11,760 --> 01:18:13,880 THE GROUP AND IT'S GOOD FOR 2021 01:18:13,880 --> 01:18:17,600 COMPARISON ACROSS INTERVENTIONS. 2022 01:18:17,600 --> 01:18:20,600 A PROM MAY NOT BE A FINE ENOUGH 2023 01:18:20,600 --> 01:18:23,520 MEASURE TO FIT WELL TO AN 2024 01:18:23,520 --> 01:18:24,280 INDIVIDUAL'S GOAL. 2025 01:18:24,280 --> 01:18:27,440 THERE'S NO PROM FOR ATTENDING A 2026 01:18:27,440 --> 01:18:29,920 GRANDSON'S WEDDING. 2027 01:18:29,920 --> 01:18:31,680 AND PROM SETTING HAS BEEN USED 2028 01:18:31,680 --> 01:18:33,280 IN LITERATURE FOR FUNCTIONAL 2029 01:18:33,280 --> 01:18:34,760 GOALS BUT MAY BE HARDER FOR MOOD 2030 01:18:34,760 --> 01:18:35,920 OR PAIN. 2031 01:18:35,920 --> 01:18:38,880 WHERE WE HAVE PROMS FOR MANY 2032 01:18:38,880 --> 01:18:40,600 CONSTRUCTS BUT WE STILL HAVE 2033 01:18:40,600 --> 01:18:41,600 LOTS OF AREAS WHERE WE NEED PROM 2034 01:18:41,600 --> 01:18:44,960 DEVELOPMENT. 2035 01:18:44,960 --> 01:18:47,400 ONE OF THE MEASUREMENT IS IT'S 2036 01:18:47,400 --> 01:18:48,760 RESPONSIVE TO SMALL CHANGE. 2037 01:18:48,760 --> 01:18:51,400 WHEREAS A PROM MAY OR MAY NOT BE 2038 01:18:51,400 --> 01:18:53,200 ABLE TO CAPTURE A SMALL CHANGE 2039 01:18:53,200 --> 01:18:55,080 DEPENDING ON HOW IT'S 2040 01:18:55,080 --> 01:18:55,400 CONSTRUCTED. 2041 01:18:55,400 --> 01:18:57,840 AND THERE'S A NEW CONCEPT FOR 2042 01:18:57,840 --> 01:19:00,120 RESEARCHERS AND INDIVIDUAL S WHO 2043 01:19:00,120 --> 01:19:01,360 MAY BE ASKED TO SET GOALS IN THE 2044 01:19:01,360 --> 01:19:02,560 CONTEXT OF CARE AND A DIFFERENT 2045 01:19:02,560 --> 01:19:04,760 WAY OF THINKING ABOUT CARE AND 2046 01:19:04,760 --> 01:19:07,800 REQUIRES MORE INTENSIVE TRAINING 2047 01:19:07,800 --> 01:19:10,480 WHERE MANY ARE SHELF READY AND 2048 01:19:10,480 --> 01:19:13,280 CAN BE EMBEDDED IN THE EMR. 2049 01:19:13,280 --> 01:19:14,760 GOAL ATTAINMENT SCALING ALLOWS 2050 01:19:14,760 --> 01:19:16,520 FOR VISION OF GOALS OVER TIME. 2051 01:19:16,520 --> 01:19:18,520 WE NOW AS THE DISEASE 2052 01:19:18,520 --> 01:19:19,560 PROGRESSES, THINGS CHANGE. 2053 01:19:19,560 --> 01:19:21,360 WHERE AS A PROM GOAL MAY ALLOW 2054 01:19:21,360 --> 01:19:23,520 YOU TO FOLLOW HOW SOMEONE'S CORE 2055 01:19:23,520 --> 01:19:26,600 MAY CHANGE OVER THE COURSE OF AN 2056 01:19:26,600 --> 01:19:27,080 INTERVENTION. 2057 01:19:27,080 --> 01:19:28,720 I THINK IN SUMMARY THERE'S VALUE 2058 01:19:28,720 --> 01:19:30,720 IN BOTH AND WHAT'S EXCITING IS 2059 01:19:30,720 --> 01:19:32,640 WE'RE BEGINNING TO SEE GOAL 2060 01:19:32,640 --> 01:19:36,760 ATTAINMENT IN ADDITION TO PROMS 2061 01:19:36,760 --> 01:19:40,640 BEING A MEASUREMENT IN A STUDY. 2062 01:19:40,640 --> 01:19:41,800 I WANT TO HIGHLIGHT THREE 2063 01:19:41,800 --> 01:19:43,680 EXAMPLE STUDIES. 2064 01:19:43,680 --> 01:19:49,160 THESE ARE ALL ONGOING PRAGMATIC 2065 01:19:49,160 --> 01:19:51,000 TRIAL USING SCALINGS A PRIMARY 2066 01:19:51,000 --> 01:19:53,240 OR SECONDARY OUTCOME IN ADDITION 2067 01:19:53,240 --> 01:19:55,040 TO OTHER PERSON-REPORTED OUTCOME 2068 01:19:55,040 --> 01:20:02,240 MEASURES. 2069 01:20:02,240 --> 01:20:05,960 THREES A CLUSTER PRAGMATIC TRIAL 2070 01:20:05,960 --> 01:20:11,400 OF 438 PERSONS WITH DEMENTIA AND 2071 01:20:11,400 --> 01:20:14,120 CAREGIVER DIADS WITH THE 2072 01:20:14,120 --> 01:20:15,360 INDIVIDUAL LIVING WITH DEMENTIA 2073 01:20:15,360 --> 01:20:17,520 AND THEIR CAREGIVERS AND THE 2074 01:20:17,520 --> 01:20:20,440 INTERVENTION IS MULTI-COMPONENT. 2075 01:20:20,440 --> 01:20:22,320 IT INCLUDES A NURSED STAFF 2076 01:20:22,320 --> 01:20:23,400 TRAINING, ENVIRONMENTAL AND 2077 01:20:23,400 --> 01:20:25,120 QUALITY ASSESSMENTS AND A FAMILY 2078 01:20:25,120 --> 01:20:27,400 CAREGIVER INTERVENTION PIECE AND 2079 01:20:27,400 --> 01:20:28,760 THAT INTERVENTION PIECE INVOLVES 2080 01:20:28,760 --> 01:20:30,200 SETTING GOALS FOR FUNCTIONAL 2081 01:20:30,200 --> 01:20:32,600 RECOVERY AS PART OF THE 2082 01:20:32,600 --> 01:20:34,120 INTERVENTION WITH AN 2083 01:20:34,120 --> 01:20:34,920 INTERDISCIPLINARY TEAM AND THEIR 2084 01:20:34,920 --> 01:20:37,000 INDIVIDUAL AND THEIR CAREGIVER. 2085 01:20:37,000 --> 01:20:39,680 THEY'RE REVIEWED DAILY AS PART 2086 01:20:39,680 --> 01:20:40,600 OF THE TREATMENT PLAN AND 2087 01:20:40,600 --> 01:20:41,520 INFORMED IN PLANNING. 2088 01:20:41,520 --> 01:20:47,080 THE GROUP HAS PUBLISHED AN 2089 01:20:47,080 --> 01:20:49,720 INITIAL STUDY FROM 134 DIADS WHO 2090 01:20:49,720 --> 01:20:53,080 SET GOALS RELATED TO MOBILITY, 2091 01:20:53,080 --> 01:20:55,280 CARE AND GOAL ATTAINMENT AND IT 2092 01:20:55,280 --> 01:20:57,520 WAS ASSOCIATED WITH A RETURN TO 2093 01:20:57,520 --> 01:21:00,360 BASELINE FUNCTION AND LOWER 2094 01:21:00,360 --> 01:21:01,040 DEMENTIA SEVERITY HIGHLIGHTING 2095 01:21:01,040 --> 01:21:03,160 IT'S USED AS AN OUTCOME AND ALSO 2096 01:21:03,160 --> 01:21:03,720 GOAL SETTING IS PART OF THE 2097 01:21:03,720 --> 01:21:06,680 INTERVENTION. 2098 01:21:06,680 --> 01:21:09,240 THE NEXT STUDY I WANT TO 2099 01:21:09,240 --> 01:21:13,800 HIGHLIGHT IS THE D-CARE STUDY. 2100 01:21:13,800 --> 01:21:18,120 IT'S A FOUR-SITE PRAGMATIC 2101 01:21:18,120 --> 01:21:20,920 RANDOMIZED TRIAL COMPARING CARE 2102 01:21:20,920 --> 01:21:22,480 MANAGEMENT TO COMMUNITY-BASED 2103 01:21:22,480 --> 01:21:24,520 MANAGEMENT TO USUAL CARE. 2104 01:21:24,520 --> 01:21:28,120 TARGET ENROLL MANY OF 5150 AND 2105 01:21:28,120 --> 01:21:30,120 150 IN CARE. 2106 01:21:30,120 --> 01:21:32,880 OUTCOMES ARE RELATED TO 2107 01:21:32,880 --> 01:21:34,560 CAREGIVER STRAIN AND IT INCLUDES 2108 01:21:34,560 --> 01:21:39,560 GOAL ATTAINMENT AND COLLECTED ON 2109 01:21:39,560 --> 01:21:41,720 THE FIRST HALF OF PARTICIPANTS. 2110 01:21:41,720 --> 01:21:43,640 I'M A CO-INVESTIGATOR SO I CAN 2111 01:21:43,640 --> 01:21:46,120 GIVE BACKGROUND WE HAVE 2112 01:21:46,120 --> 01:21:48,160 COLLECTED BASELINE GOALS FOR 85% 2113 01:21:48,160 --> 01:21:49,920 OF THE INITIAL HALF OF THE 2114 01:21:49,920 --> 01:21:50,240 SAMPLE. 2115 01:21:50,240 --> 01:21:53,640 AND THREE-QUARTERS HAVE GOAL 2116 01:21:53,640 --> 01:21:54,640 ATTAINMENT AT SIX MONTHS. 2117 01:21:54,640 --> 01:21:57,640 IT'S ONGOING AND THE DATA 2118 01:21:57,640 --> 01:21:58,320 COLLECTION WILL BE SET IN 2119 01:21:58,320 --> 01:21:59,800 SEPTEMBER AND IT WILL BE THE 2120 01:21:59,800 --> 01:22:01,680 LARGEST STUDY TO MY KNOWLEDGE OF 2121 01:22:01,680 --> 01:22:03,200 USING GOAL ATTAINMENT AS AN 2122 01:22:03,200 --> 01:22:04,440 OUTCOME AND IT WILL BE EXCITING 2123 01:22:04,440 --> 01:22:07,360 TO SEE WHAT COMES OF THIS. 2124 01:22:07,360 --> 01:22:09,600 THE LAST STUDY I WANT TO 2125 01:22:09,600 --> 01:22:12,080 HIGHLIGHT IS THE NEW 2126 01:22:12,080 --> 01:22:12,880 INTERVENTIONS FOR INDEPENDENCE 2127 01:22:12,880 --> 01:22:14,480 IN DEMENTIA STUDY. 2128 01:22:14,480 --> 01:22:18,680 IT'S A RANDOMIZED SINGLE MAS 2129 01:22:18,680 --> 01:22:21,160 TRIAL OF NEARLY 300 DIADS. 2130 01:22:21,160 --> 01:22:21,920 INTERVENTION IS DESIGN TO 2131 01:22:21,920 --> 01:22:23,680 SUPPORT INDIVIDUALS WITH 2132 01:22:23,680 --> 01:22:26,880 DEMENTIA TO STAY AT HOME TO 2133 01:22:26,880 --> 01:22:28,320 ADDRESS BARRIERS AND MAY 2134 01:22:28,320 --> 01:22:29,080 PRECIPITATE MOVES OUT OF THE 2135 01:22:29,080 --> 01:22:30,840 MOMENT AND THE STUDY HAS GOAL 2136 01:22:30,840 --> 01:22:33,200 ATTAINMENT AS A PRIMARY OUTCOME 2137 01:22:33,200 --> 01:22:33,680 MEASURE. 2138 01:22:33,680 --> 01:22:37,640 AND THEY HAVE A CONCEPTUAL MODEL 2139 01:22:37,640 --> 01:22:39,120 AS PART OF THE INTERVENTION. 2140 01:22:39,120 --> 01:22:40,680 THE IDEA BEING IF INDIVIDUALS 2141 01:22:40,680 --> 01:22:43,080 WITH DEMENTIA HAVE FEWER UNMET 2142 01:22:43,080 --> 01:22:44,200 NEEDS THEY'RE ABLE TO LIVE 2143 01:22:44,200 --> 01:22:45,600 LONGER AT HOME. 2144 01:22:45,600 --> 01:22:47,280 THE GOAL ATTAINMENT SCALING AS 2145 01:22:47,280 --> 01:22:49,120 AN ACTIVITY WILL HELP IDENTIFY 2146 01:22:49,120 --> 01:22:51,200 THE HIGHEST PRIORITY UNMET NEEDS 2147 01:22:51,200 --> 01:22:52,760 AND SETTING GOALS WILL HELP 2148 01:22:52,760 --> 01:22:54,160 FOCUS ACTION PLANNING AROUND HOW 2149 01:22:54,160 --> 01:22:55,880 IT MEET THE NEEDS. 2150 01:22:55,880 --> 01:22:59,080 THE GROUP PUBLISHED AN INITIAL 2151 01:22:59,080 --> 01:23:04,120 QUALITATIVE EVALUATION OF DIADS 2152 01:23:04,120 --> 01:23:06,120 AND FELT LIKE IT HELPED UNMET 2153 01:23:06,120 --> 01:23:09,480 NEEDS. 2154 01:23:09,480 --> 01:23:11,960 AND I WANT TO TALK ABOUT 2155 01:23:11,960 --> 01:23:13,280 INDIVIDUALIZED OUTCOMES IN 2156 01:23:13,280 --> 01:23:14,360 CLINICAL QUALITY MEASUREMENT. 2157 01:23:14,360 --> 01:23:16,800 WE'VE KNOWN FOR A LONG TIME WHEN 2158 01:23:16,800 --> 01:23:18,440 WE DO CLINICAL QUALITY 2159 01:23:18,440 --> 01:23:19,640 MEASUREMENT ONE SIZE DOES NOT 2160 01:23:19,640 --> 01:23:20,600 FIT ALL IT'S QUITE TRUE IN 2161 01:23:20,600 --> 01:23:24,960 DEMENTIA. 2162 01:23:24,960 --> 01:23:27,160 SO IN THE NATIONAL COMMITTEE FOR 2163 01:23:27,160 --> 01:23:30,360 QUALITY ASSURANCE HAS DONE WORK 2164 01:23:30,360 --> 01:23:33,280 IN DEVELOPING PERSON-DRIVEN 2165 01:23:33,280 --> 01:23:35,440 OUTCOME MEASURES FOR CARE 2166 01:23:35,440 --> 01:23:35,960 QUALITY MEASUREMENT. 2167 01:23:35,960 --> 01:23:38,560 THIS LOOKED AT GOAL ATTAINMENT 2168 01:23:38,560 --> 01:23:40,200 SCALING VERSUS PRIORITIZED PROM. 2169 01:23:40,200 --> 01:23:44,840 WE'RE TRYING TO PICK A PROM AS 2170 01:23:44,840 --> 01:23:46,120 CLOSE AS POSSIBLE TO THE 2171 01:23:46,120 --> 01:23:48,600 INDIVIDUAL'S GOAL DONE IN SEVEN 2172 01:23:48,600 --> 01:23:52,560 SITES, 33 CLINICIANS, 229 OLDER 2173 01:23:52,560 --> 01:23:55,240 ADULTS AND A FIFTH HAD DEMENTIA. 2174 01:23:55,240 --> 01:23:58,160 82% WERE ABLE TO SET A GOAL, 2175 01:23:58,160 --> 01:23:59,240 THREE-QUARTERS MET THEIR GOAL 2176 01:23:59,240 --> 01:24:00,920 AND NO DIFFERENCE BETWEEN GOAL 2177 01:24:00,920 --> 01:24:04,440 ATTAINMENT AND SCALING AND PROM 2178 01:24:04,440 --> 01:24:06,520 AND CLINICIANS INTERESTINGLY 2179 01:24:06,520 --> 01:24:08,760 OFTEN CHOSE TO USE GOAL 2180 01:24:08,760 --> 01:24:10,720 ATTAINMENT SCALING AS THE 2181 01:24:10,720 --> 01:24:11,000 METHODOLOGY. 2182 01:24:11,000 --> 01:24:12,520 PART MAY BE THE CLINICIANS IN 2183 01:24:12,520 --> 01:24:15,200 THE STUDY WERE SOCIAL WORKERS 2184 01:24:15,200 --> 01:24:18,520 AND CARE MANAGERS AND INDICATED 2185 01:24:18,520 --> 01:24:20,400 THAT TOOL WAS VERY ADVANTAGEOUS 2186 01:24:20,400 --> 01:24:21,840 FOR THE CARE PLANNING PROCESS TO 2187 01:24:21,840 --> 01:24:22,760 BE USED. 2188 01:24:22,760 --> 01:24:24,000 AND SO IT'S NOW USING THE 2189 01:24:24,000 --> 01:24:26,680 OUTCOMES FROM THIS STUDY TO 2190 01:24:26,680 --> 01:24:28,000 DEVELOP PROVIDER TRAINING TOOL 2191 01:24:28,000 --> 01:24:30,600 KITS AND USING IT TO INFORM 2192 01:24:30,600 --> 01:24:31,280 STUDIES YOU'RE GOING AROUND 2193 01:24:31,280 --> 01:24:34,600 QUALITY METRIC DEVELOPMENT. 2194 01:24:34,600 --> 01:24:36,320 SO IN CLOSING I THINK THERE'S 2195 01:24:36,320 --> 01:24:37,480 OPPORTUNITY TO THINK HOW WE 2196 01:24:37,480 --> 01:24:39,320 ADVANCE THE USE OF 2197 01:24:39,320 --> 01:24:40,080 INDIVIDUALIZED OUTCOME MEASURES 2198 01:24:40,080 --> 01:24:42,720 AND GOAL ATTAINMENT IN DEMENTIA 2199 01:24:42,720 --> 01:24:43,360 CARE RESEARCH. 2200 01:24:43,360 --> 01:24:46,360 FIRST AS YOU SAW IN THE EXAMPLES 2201 01:24:46,360 --> 01:24:48,320 IN THIS PRESENTATION THE FIRST 2202 01:24:48,320 --> 01:24:52,320 IS INCLUDING GOAL ATTAINMENT IN 2203 01:24:52,320 --> 01:24:53,600 STUDIES AND TRIALS AND THINKING 2204 01:24:53,600 --> 01:24:55,840 OF GOAL SETTING AS AN 2205 01:24:55,840 --> 01:24:59,720 INTERVENTION AS PART OF AN 2206 01:24:59,720 --> 01:25:03,120 INTERVENTION TO INFLUENCE THE 2207 01:25:03,120 --> 01:25:03,800 OUTCOME MEASURES. 2208 01:25:03,800 --> 01:25:07,160 TO DO THIS WELL I THINK IT TAKES 2209 01:25:07,160 --> 01:25:07,440 TRAINING. 2210 01:25:07,440 --> 01:25:08,920 IT'S WHAT WE'VE SEEN IN THE 2211 01:25:08,920 --> 01:25:10,040 RESEARCH AND TRAINING TOOL KITS 2212 01:25:10,040 --> 01:25:12,000 THAT COME FROM THE PRAGMATIC 2213 01:25:12,000 --> 01:25:14,480 RESEARCH THAT COULD BE 2214 01:25:14,480 --> 01:25:16,120 TRANSLATED TO CLINICAL PRACTICE 2215 01:25:16,120 --> 01:25:18,160 IS AN IMPORTANT COMPONENT AND 2216 01:25:18,160 --> 01:25:20,160 NOT AROUND THE USE OF SCALING 2217 01:25:20,160 --> 01:25:21,520 BUT SOLICITATION AND VALUES AND 2218 01:25:21,520 --> 01:25:22,760 CARE PREFERENCES OF INDIVIDUALS 2219 01:25:22,760 --> 01:25:25,800 AND WHEN WE TALK ABOUT DEMENTIA 2220 01:25:25,800 --> 01:25:28,000 WE'RE OFTEN TALKING ABOUT TRIAD 2221 01:25:28,000 --> 01:25:28,760 OF COMMUNICATION. 2222 01:25:28,760 --> 01:25:30,400 INCREASED RESEARCHERS ON HOW TO 2223 01:25:30,400 --> 01:25:31,480 DO IT WELL WITH INDIVIDUALS 2224 01:25:31,480 --> 01:25:33,160 LIVING WITH DEMENTIA AT 2225 01:25:33,160 --> 01:25:34,600 DIFFERENT STAGES OF DISEASE AND 2226 01:25:34,600 --> 01:25:36,160 THEIR CAREGIVER PARTNERS AND 2227 01:25:36,160 --> 01:25:37,320 DIFFERENT CLINICIANS. 2228 01:25:37,320 --> 01:25:39,280 AND LASTLY, GOAL ATTAINMENT 2229 01:25:39,280 --> 01:25:40,720 SCALING IS USED IN OTHER TYPES 2230 01:25:40,720 --> 01:25:42,600 OF RESEARCH BUT STILL NEW IN 2231 01:25:42,600 --> 01:25:44,400 DEMENTIA AND SO INCREASED WORK 2232 01:25:44,400 --> 01:25:46,880 AROUND STANDARDIZATION OF THE 2233 01:25:46,880 --> 01:25:49,200 METHODOLOGIES FOR SCHOOLING. 2234 01:25:49,200 --> 01:25:51,280 I THINK I'D LIKE TO ACKNOWLEDGE 2235 01:25:51,280 --> 01:25:51,960 MY COLLABORATORS AND FUNDERS. 2236 01:25:51,960 --> 01:26:02,160 THANK YOU. 2237 01:26:14,240 --> 01:26:16,120 >>THANK YOU, DR. JENNINGS AND 2238 01:26:16,120 --> 01:26:17,360 GLAD YOU WERE ABLE TO PRESENT 2239 01:26:17,360 --> 01:26:24,280 GIVEN THE CIRCUMSTANCES. 2240 01:26:24,280 --> 01:26:25,520 WE'LL INTRODUCE THE DRAFT 2241 01:26:25,520 --> 01:26:29,320 RESEARCH GAPS AND OPPORTUNITIES 2242 01:26:29,320 --> 01:26:31,520 IDENTIFIED THROUGH THE WORK AND 2243 01:26:31,520 --> 01:26:35,360 FOCUS OF THIS PARTICULAR 2244 01:26:35,360 --> 01:26:35,560 SESSION. 2245 01:26:35,560 --> 01:26:39,680 AND THESE ARE WHAT WE SEE AS 2246 01:26:39,680 --> 01:26:40,360 IMPORTANT AREAS FOR FUTURE 2247 01:26:40,360 --> 01:26:43,240 DEVELOPMENT IN MEASUREMENT. 2248 01:26:43,240 --> 01:26:45,640 THE FIRST IS TO DEVELOP AND TEST 2249 01:26:45,640 --> 01:26:47,480 INSTRUMENTS FOR USE IN RESEARCH 2250 01:26:47,480 --> 01:26:49,040 THAT MEASURE CORE OUTCOMES. 2251 01:26:49,040 --> 01:26:52,440 THESE WOULD BE STANDARD AND 2252 01:26:52,440 --> 01:26:53,960 HARMONIZABLE ACROSS STUDIES AND 2253 01:26:53,960 --> 01:26:56,200 OF CENTRAL IMPORTANCE TO DIVERSE 2254 01:26:56,200 --> 01:26:57,920 PERSONS LIVING WITH DEMENTIA AND 2255 01:26:57,920 --> 01:27:03,520 THEIR CARE PARTNERS AND SUITABLE 2256 01:27:03,520 --> 01:27:04,720 ACROSS THE PROGRESSION OF 2257 01:27:04,720 --> 01:27:06,080 DISEASE AND PRAGMATIC TRIALS. 2258 01:27:06,080 --> 01:27:09,800 IT WOULD BE VALUABLE TO HAVE 2259 01:27:09,800 --> 01:27:10,400 COLLABORATION AMONG 2260 01:27:10,400 --> 01:27:12,600 INVESTIGATORS MAKING PROGRESS ON 2261 01:27:12,600 --> 01:27:15,400 PERSON-CENTERED MEASUREMENT AND 2262 01:27:15,400 --> 01:27:16,000 EVALUATION AS WELL. 2263 01:27:16,000 --> 01:27:17,960 OUR SECOND IDENTIFIED GAP AND 2264 01:27:17,960 --> 01:27:19,440 OPPORTUNITY IS TO DEVELOP AND 2265 01:27:19,440 --> 01:27:22,640 REFINE APPROACH TO MEANINGFUL 2266 01:27:22,640 --> 01:27:24,880 OUTCOMES IN PARTICULAR WELL 2267 01:27:24,880 --> 01:27:26,720 BEING, AFFECT, AND POSITIVE OR 2268 01:27:26,720 --> 01:27:29,440 NEGATIVE EMOTIONS EXPERIENCED OR 2269 01:27:29,440 --> 01:27:30,960 EXHIBITED BY PERSONS LIVING WITH 2270 01:27:30,960 --> 01:27:33,040 DEMENTIA AND WE HAVE A NUMBER OF 2271 01:27:33,040 --> 01:27:35,000 SPECIFIC MEASUREMENT CHALLENGES 2272 01:27:35,000 --> 01:27:37,880 THAT WE'VE IDENTIFIED AND 2273 01:27:37,880 --> 01:27:41,840 THEY'RE LISTED BELOW. 2274 01:27:41,840 --> 01:27:43,080 OUR THIRD GAP AND OPPORTUNITY IS 2275 01:27:43,080 --> 01:27:45,800 TO DEVELOP AND REFINE APPROACHES 2276 01:27:45,800 --> 01:27:47,760 FOR INDIVIDUAL GOAL SETTING AND 2277 01:27:47,760 --> 01:27:49,440 ASSESSMENT OF GOAL ATTAINMENT 2278 01:27:49,440 --> 01:27:52,400 SUITABLE FOR USING IN DEMENTIA 2279 01:27:52,400 --> 01:27:54,520 CARE AND CARE GIVING RESEARCH. 2280 01:27:54,520 --> 01:27:55,840 INCLUDING PRAGMATIC TRIALS AND 2281 01:27:55,840 --> 01:27:58,000 THE DEVELOPMENT OF INSTRUMENTS, 2282 01:27:58,000 --> 01:28:00,520 TOOL KITS AND PROCESSES FOR 2283 01:28:00,520 --> 01:28:03,200 IMPLEMENTING GOAL ATTAINMENT 2284 01:28:03,200 --> 01:28:06,200 SCALING IN CLINICAL PRACTICE 2285 01:28:06,200 --> 01:28:06,920 SPECIFIC TO PERSONS LIVING WITH 2286 01:28:06,920 --> 01:28:15,000 DEMENTIA. 2287 01:28:15,000 --> 01:28:17,520 I'M DELIGHTED TO INTRODUCE OUR 2288 01:28:17,520 --> 01:28:18,800 PANELISTS TO PROVIDE REFLECTIONS 2289 01:28:18,800 --> 01:28:19,520 ON THE PRESENTATIONS WE HAVE 2290 01:28:19,520 --> 01:28:22,440 JUST SEEN. 2291 01:28:22,440 --> 01:28:24,920 DR. MANGI IS A MEMBER OF THE 2292 01:28:24,920 --> 01:28:26,040 LIVED EXPERIENCE PANEL AND A 2293 01:28:26,040 --> 01:28:28,240 CAREGIVER FOR HIS WIFE. 2294 01:28:28,240 --> 01:28:32,080 DR. FAZIO IS THE SENIOR DIRECTOR 2295 01:28:32,080 --> 01:28:36,360 OF QUALITY CARE AND PSYCHOSOCIAL 2296 01:28:36,360 --> 01:28:38,280 AT THE ALZHEIMER'S ASSOCIATION 2297 01:28:38,280 --> 01:28:40,760 AND DR. BELANGER IS A PROFESSOR 2298 01:28:40,760 --> 01:28:41,520 OF POLICY AND PRACTICE AT BROWN 2299 01:28:41,520 --> 01:28:48,120 UNIVERSITY. 2300 01:28:48,120 --> 01:28:57,640 DR. MANGI, WHAT DO YOU 2301 01:28:57,640 --> 01:28:59,440 UNDERSTAND MATTERS MOST TO YOUR 2302 01:28:59,440 --> 01:29:01,200 WIFE IN HER DAILY LIVING AND HOW 2303 01:29:01,200 --> 01:29:03,280 HAS THAT CHANGED AS HE DISEASE 2304 01:29:03,280 --> 01:29:04,880 HAS PROGRESSED? 2305 01:29:04,880 --> 01:29:09,560 >>TO QUOTE ONE OF MY WIFE'S 2306 01:29:09,560 --> 01:29:14,000 FAVORITE SONGS BY ARETHA 2307 01:29:14,000 --> 01:29:18,960 FRANKLIN, IT'S R-E-S-P-E-C-T. 2308 01:29:18,960 --> 01:29:23,080 IN THE 16 YEARS OF MY WIFE 2309 01:29:23,080 --> 01:29:25,200 KATHLEEN'S DEMENTIA JOURNEY, SHE 2310 01:29:25,200 --> 01:29:27,240 HAS NEVER WANTED SYMPATHY JUST 2311 01:29:27,240 --> 01:29:30,720 RESPECT. 2312 01:29:30,720 --> 01:29:35,880 EVEN NOW WHEN SHE HAS LOST MANY 2313 01:29:35,880 --> 01:29:36,720 ABILI 2314 01:29:36,720 --> 01:29:37,000 ABILITIES. 2315 01:29:37,000 --> 01:29:39,600 TO HOLD A FORK, TO WALK, TO 2316 01:29:39,600 --> 01:29:43,320 TALK, SHE STILL WANTS TO BE 2317 01:29:43,320 --> 01:29:47,520 RECOGNIZED AS A PERSON FOT A 2318 01:29:47,520 --> 01:29:51,120 GENERIC PATIENT, NOT A VICTIM OR 2319 01:29:51,120 --> 01:29:55,720 A GEM STONE BUT A PERSON. 2320 01:29:55,720 --> 01:30:03,720 NOT A USED TO BE A -- BUT IS AS 2321 01:30:03,720 --> 01:30:05,640 IN IS A SWEET, BEAUTIFUL PERSON 2322 01:30:05,640 --> 01:30:07,520 WHO KNOWS WHEN FOLKS ARE TALKING 2323 01:30:07,520 --> 01:30:11,280 ABOUT HER NOT WITH HER. 2324 01:30:11,280 --> 01:30:14,000 RECENTLY I TOLD THE MEMORY 2325 01:30:14,000 --> 01:30:17,080 CENTER STAFF ABOUT MY LOVELY 2326 01:30:17,080 --> 01:30:20,040 WALK OUTSIDE WITH MY SMILING 2327 01:30:20,040 --> 01:30:20,360 SWEETHEART. 2328 01:30:20,360 --> 01:30:23,280 I WAS LITERALLY TALKING OVER HER 2329 01:30:23,280 --> 01:30:26,600 HEAD FROM BEHIND HER WHEELCHAIR 2330 01:30:26,600 --> 01:30:29,360 WHEN SHE THUMPED THE ARMS OF HER 2331 01:30:29,360 --> 01:30:37,040 CHAIR TO TELL ME SHE WAS RIGHT 2332 01:30:37,040 --> 01:30:39,480 THERE. 2333 01:30:39,480 --> 01:30:40,840 I CAME AROUND AND LOOKED HER IN 2334 01:30:40,840 --> 01:30:42,360 THE EYES AND APOLOGIZED AND SAID 2335 01:30:42,360 --> 01:30:45,640 SOFTRY, OKAY. 2336 01:30:45,640 --> 01:30:47,600 -- SOFTLY, OKAY. 2337 01:30:47,600 --> 01:30:51,320 RESPECT IS IMPORTANT TO HER. 2338 01:30:51,320 --> 01:30:55,200 EARLY IN THE JOURNEY SHE WAS 2339 01:30:55,200 --> 01:30:56,800 CONCERNED ABOUT HER PARENTS AND 2340 01:30:56,800 --> 01:31:00,040 SIBLINGS AND THEIR PAST AND 2341 01:31:00,040 --> 01:31:01,320 FUTURE PROBLEMS. 2342 01:31:01,320 --> 01:31:04,520 WHEN I WOULD TELL HER THEY WERE 2343 01:31:04,520 --> 01:31:07,960 LONG DECEASED SHE'D BE OFFENDED 2344 01:31:07,960 --> 01:31:10,640 BECAUSE I FAILED TO RESPECT HER 2345 01:31:10,640 --> 01:31:18,080 CONCERNS IN HER REALITY. 2346 01:31:18,080 --> 01:31:20,200 THESE DAYS SHE'S JUST IN THE 2347 01:31:20,200 --> 01:31:20,800 PRESENT. 2348 01:31:20,800 --> 01:31:23,760 THOUGH IT SEEMS LIKE VERBAL 2349 01:31:23,760 --> 01:31:25,560 NONSENSE, SHE HAPPILY DISCUSSES 2350 01:31:25,560 --> 01:31:26,920 THINGS WITH HER PARENTS. 2351 01:31:26,920 --> 01:31:31,240 I CAN'T SEE THEM BUT I RESPECT 2352 01:31:31,240 --> 01:31:34,160 THAT THEY'RE PRESENT FOR HER. 2353 01:31:34,160 --> 01:31:35,200 AND SHE'S FINE WITH MY JUST 2354 01:31:35,200 --> 01:31:38,600 BEING PRESENT WITH HER. 2355 01:31:38,600 --> 01:31:40,400 I DON'T DISCUSS THE PAST OR IF 2356 01:31:40,400 --> 01:31:44,680 HE FUTURE OR ANYTHING ELSE. 2357 01:31:44,680 --> 01:31:47,680 I JUST SAY THINGS LIKE THANK YOU 2358 01:31:47,680 --> 01:31:50,640 FOR BEING MY BEST FRIEND. 2359 01:31:50,640 --> 01:31:51,360 YOU'RE SAFE. 2360 01:31:51,360 --> 01:31:56,200 WE WILL ALWAYS TAKE CARE OF YOU 2361 01:31:56,200 --> 01:31:57,920 AND I'LL LOVE YOU FOREVER. 2362 01:31:57,920 --> 01:32:02,320 THAT'S ABOUT ALL I CAN DO THESE 2363 01:32:02,320 --> 01:32:05,760 DAYS BUT HER SMILE TELLS ME IT 2364 01:32:05,760 --> 01:32:06,760 IS ENOUGH FOR HER. 2365 01:32:06,760 --> 01:32:16,200 THANK YOU. 2366 01:32:16,200 --> 01:32:17,640 >>THANK YOU FOR THESE TOUCHING 2367 01:32:17,640 --> 01:32:27,640 AND THOUGHTFUL REMARKS. 2368 01:32:27,640 --> 01:32:29,840 DR. FAZIO WOULD YOU LIKE TO 2369 01:32:29,840 --> 01:32:30,760 SHARE YOUR COMMENTS NEXT? 2370 01:32:30,760 --> 01:32:32,320 >>THANK YOU VERY MUCH. 2371 01:32:32,320 --> 01:32:36,800 THANKS TO THE NIH AND NIA AND 2372 01:32:36,800 --> 01:32:38,160 THE SESSION CHAIRS FOR INCLUDING 2373 01:32:38,160 --> 01:32:40,960 ME AND JIM, IT'S ALWAYS AN HONOR 2374 01:32:40,960 --> 01:32:42,600 TO HEAR YOUR GREAT WORDS FROM 2375 01:32:42,600 --> 01:32:44,600 THE HEART ILLUSTRATING WHAT 2376 01:32:44,600 --> 01:32:46,600 PERSON-CENTERED CARE REALLY 2377 01:32:46,600 --> 01:32:51,600 LOOKS LIKE. 2378 01:32:51,600 --> 01:32:54,480 EACH OF TODAY'S TALKS INVOLVES 2379 01:32:54,480 --> 01:32:55,640 THE IMPORTANCE OF LIVING WITH 2380 01:32:55,640 --> 01:32:57,760 INDIVIDUALS INVOLVED IN CARE AND 2381 01:32:57,760 --> 01:32:58,560 RESEARCH. 2382 01:32:58,560 --> 01:33:02,240 UNTIL RECENTLY INVOLVING PERSON 2383 01:33:02,240 --> 01:33:04,080 LIVING WITH RESEARCH MEANT 2384 01:33:04,080 --> 01:33:05,720 INVOLVING THEM AS SUBJECT AND 2385 01:33:05,720 --> 01:33:08,480 PARTICIPANTS NOT NOT REALLY 2386 01:33:08,480 --> 01:33:09,680 PARTNERS. 2387 01:33:09,680 --> 01:33:13,760 DR. REILLY REMIND US TO LISTEN 2388 01:33:13,760 --> 01:33:17,240 TO THEIR NEEDS AND OUTCOMES IN 2389 01:33:17,240 --> 01:33:20,400 PSYCHOSOCIAL DEMENTIA WORKSHOPS. 2390 01:33:20,400 --> 01:33:24,000 AND THERE'S EXPRESSIONS OF 2391 01:33:24,000 --> 01:33:28,800 POSITIVE AND NEGATIVE EMOTION 2392 01:33:28,800 --> 01:33:30,920 AND FUTURE DIRECTIONAL NEEDS AND 2393 01:33:30,920 --> 01:33:33,840 THE CONCEPT OF GOAL ATTAINING 2394 01:33:33,840 --> 01:33:35,960 SCALING AND HOW ESSENTIAL IT IS 2395 01:33:35,960 --> 01:33:37,400 TO UTILIZE OUTCOMES IMPORTANT TO 2396 01:33:37,400 --> 01:33:38,520 THE INDIVIDUAL. 2397 01:33:38,520 --> 01:33:40,640 IF WE DON'T PAY ATTENTION TO 2398 01:33:40,640 --> 01:33:42,720 THESE IMPORTANT CONCEPTS WE RISK 2399 01:33:42,720 --> 01:33:45,520 TREATING PEOPLE WITH DEMENTIA AS 2400 01:33:45,520 --> 01:33:47,440 A GROUP RATHER THAN EMBRACING 2401 01:33:47,440 --> 01:33:48,160 INDIVIDUAL DIFFERENCES AMONG 2402 01:33:48,160 --> 01:33:52,200 PERSONS AND GROUPS. 2403 01:33:52,200 --> 01:33:53,360 THE ALZHEIMER'S ASSOCIATION HAS 2404 01:33:53,360 --> 01:33:55,000 BEEN CONVENING WITH INDIVIDUALS 2405 01:33:55,000 --> 01:33:58,640 LIVING WITH DEMENTIA TO FIND OUT 2406 01:33:58,640 --> 01:34:01,600 WHAT'S IMPORTANT TO THEM AND 2407 01:34:01,600 --> 01:34:04,120 MONICA MORENO TOLD YOU ABOUT 2408 01:34:04,120 --> 01:34:05,360 THAT ABOUT THE OUR STAKEHOLDERS 2409 01:34:05,360 --> 01:34:10,400 HAVE MADE AN IMPACT ON CARE, 2410 01:34:10,400 --> 01:34:11,480 POLICY AND RESEARCH INCLUDING 2411 01:34:11,480 --> 01:34:14,720 OUR COLLABORATION WITH THE NIA 2412 01:34:14,720 --> 01:34:16,320 IMPACT COLLABORATORY YOU HEARD 2413 01:34:16,320 --> 01:34:17,120 ABOUT EARLIER. 2414 01:34:17,120 --> 01:34:19,560 SOME OF THE WORK OF OUR EARLY 2415 01:34:19,560 --> 01:34:22,200 STAGE ADVISER GROUP CAN BE SEEN 2416 01:34:22,200 --> 01:34:24,680 ON THE LIVE WELL SECTION OF THE 2417 01:34:24,680 --> 01:34:25,800 ALZHEIMER'S ASSOCIATION'S 2418 01:34:25,800 --> 01:34:27,640 WEBSITE AND HIGHLIGHTED IN OUR 2419 01:34:27,640 --> 01:34:29,480 JOURNAL, ALZHEIMER'S AND 2420 01:34:29,480 --> 01:34:30,000 DEMENTIA. 2421 01:34:30,000 --> 01:34:31,560 INVOLVING STAKEHOLDERS IN 2422 01:34:31,560 --> 01:34:33,520 RESEARCH AND SPECIFICALLY 2423 01:34:33,520 --> 01:34:36,480 MEASUREMENT HAS BEEN KEY TO THE 2424 01:34:36,480 --> 01:34:41,280 WORK OF AN NIH-FUNDED CONSORTIUM 2425 01:34:41,280 --> 01:34:46,440 FOR PERSON-CENTERED MEASUREMENT. 2426 01:34:46,440 --> 01:34:47,720 ONE CONTRIBUTION OF THE WORK IS 2427 01:34:47,720 --> 01:34:49,760 THE DEVELOPMENT OF THE PC NET. 2428 01:34:49,760 --> 01:34:53,880 A TOOL USED TO ASSESS THE 2429 01:34:53,880 --> 01:34:57,560 PERSON-CENTEREDNESS OF A MEASURE 2430 01:34:57,560 --> 01:35:01,160 AND RESULT ON THE MEASURES OF 2431 01:35:01,160 --> 01:35:03,400 THE ASSOCIATION'S WEBSITE. 2432 01:35:03,400 --> 01:35:05,440 THOUGH THEY'RE BEGINNING TO 2433 01:35:05,440 --> 01:35:08,880 ASSESS THOSE LIVING WITH 2434 01:35:08,880 --> 01:35:10,880 DEMENTIA FEW HAVE BEEN DEVELOPED 2435 01:35:10,880 --> 01:35:12,360 FROM PEOPLE LIVING WITH 2436 01:35:12,360 --> 01:35:13,400 DEMENTIA. 2437 01:35:13,400 --> 01:35:14,600 IF WE ARE TRUE TO INVOLVE THEM 2438 01:35:14,600 --> 01:35:15,640 IN RESEARCH IT'S CRITICAL 2439 01:35:15,640 --> 01:35:17,400 THEY'RE INVOLVED IN THE 2440 01:35:17,400 --> 01:35:19,000 DEVELOPMENT OF THE MEASURES. 2441 01:35:19,000 --> 01:35:24,600 THIS IS A KEY PART OF THE NIH 2442 01:35:24,600 --> 01:35:26,160 FUNDED HERD STUDY. 2443 01:35:26,160 --> 01:35:27,160 THANK YOU TO THE PRESENTERS FOR 2444 01:35:27,160 --> 01:35:28,760 THE WORK AND THANK YOU FOR YOU 2445 01:35:28,760 --> 01:35:31,800 TO ALLOWING ME TO SHARE OUR WORK 2446 01:35:31,800 --> 01:35:32,720 AT THE ALZHEIMER'S ASSOCIATION 2447 01:35:32,720 --> 01:35:33,000 WITH YOU. 2448 01:35:33,000 --> 01:35:35,160 THANK YOU. 2449 01:35:35,160 --> 01:35:38,840 >>THANK YOU, DR. FAZIO. 2450 01:35:38,840 --> 01:35:41,280 NOW TO YOU, DR. BELANGER. 2451 01:35:41,280 --> 01:35:42,040 >>THANK YOU SO MUCH. 2452 01:35:42,040 --> 01:35:44,280 I'M DELIGHTED TO CONTRIBUTE TO A 2453 01:35:44,280 --> 01:35:45,640 SESSION ON SUCH AN IMPORTANT 2454 01:35:45,640 --> 01:35:48,280 TOPIC AS PROVIDING CARE THAT 2455 01:35:48,280 --> 01:35:50,000 IMPROVES THE LIVES OF PERSONS 2456 01:35:50,000 --> 01:35:52,000 LIVING WITH DEMENTIA. 2457 01:35:52,000 --> 01:35:53,600 IT'S STRIKING THERE'S SO MUCH 2458 01:35:53,600 --> 01:35:56,320 COMMON GROUND ACROSS THE 2459 01:35:56,320 --> 01:35:57,040 PRESENTATIONS TODAY. 2460 01:35:57,040 --> 01:35:58,480 THERE'S BROAD CONSENSUS WE NEED 2461 01:35:58,480 --> 01:36:02,600 TO FOCUS ON WHAT MATTERS MOST TO 2462 01:36:02,600 --> 01:36:03,840 THOSE LIVING WITH DEMENTIA AND 2463 01:36:03,840 --> 01:36:07,040 CARE PARTNERS AND LOOK AT TRIALS 2464 01:36:07,040 --> 01:36:12,920 AND NEED TO BE BRIEF, SIMPLE, 2465 01:36:12,920 --> 01:36:15,440 AND USEFUL ACROSS THESE STAGES 2466 01:36:15,440 --> 01:36:16,680 AND TRAJECTORIES. 2467 01:36:16,680 --> 01:36:18,560 WE CANNOT OVERSTATE THE 2468 01:36:18,560 --> 01:36:21,360 CHALLENGES WE FACE OBTAINING 2469 01:36:21,360 --> 01:36:22,320 VALID WHEN SELF-REPORT BECOMES 2470 01:36:22,320 --> 01:36:24,720 IMPOSSIBLE AND THE NEED TO TRY 2471 01:36:24,720 --> 01:36:27,160 TO COMBINE THESE WITH METHODS TO 2472 01:36:27,160 --> 01:36:28,960 CAPTURE PEOPLE'S EXPERIENCES. 2473 01:36:28,960 --> 01:36:31,440 I WANTED TO POINT OUT WE MADE 2474 01:36:31,440 --> 01:36:34,040 MOTABLE PROGRESS INCORPORATING 2475 01:36:34,040 --> 01:36:37,920 MORE RIGOROUS AND STANDARDIZED 2476 01:36:37,920 --> 01:36:39,800 PERSON-CENTERED OUTCOMES AND 2477 01:36:39,800 --> 01:36:41,840 ROUTINE ASSESSMENTS GENERATED BY 2478 01:36:41,840 --> 01:36:42,800 OUR HEALTH SYSTEMS. 2479 01:36:42,800 --> 01:36:46,280 SOME NOTABLE EXAMPLES INCLUDE 2480 01:36:46,280 --> 01:36:48,080 RESIDENT MEASURES AVAILABLE IN 2481 01:36:48,080 --> 01:36:49,920 NURSING HOMES FOR OVER A DECADE. 2482 01:36:49,920 --> 01:36:51,960 AND I'M EXCITED TO SHARE A LOT 2483 01:36:51,960 --> 01:36:55,400 OF THE WORK WE DO AT BROWN 2484 01:36:55,400 --> 01:36:57,400 UNIVERSITY CENTER FOR 2485 01:36:57,400 --> 01:36:59,320 GERONTOLOGY WE HEARD ABOUT THIS 2486 01:36:59,320 --> 01:37:03,200 MORNING INCLUDING THE IMPACT 2487 01:37:03,200 --> 01:37:06,960 COLLABORATORY AND IT'S 2488 01:37:06,960 --> 01:37:08,560 CONTRIBUTING TO TRIALS AND 2489 01:37:08,560 --> 01:37:10,720 ESTABLISH AN INFRASTRUCTURE TO 2490 01:37:10,720 --> 01:37:14,800 SUPPORT REAL-WORLD EVIDENCE AND 2491 01:37:14,800 --> 01:37:16,440 IMPROVE THE CARE TO THOSE 2492 01:37:16,440 --> 01:37:18,080 PERSONS WITH DEMENTIA AND AS A 2493 01:37:18,080 --> 01:37:20,840 RESEARCHER I'M ACUTELY AWARE OUR 2494 01:37:20,840 --> 01:37:23,200 EFFORTS TO ASSESS THE 2495 01:37:23,200 --> 01:37:24,240 PERFORMANCE OF HEALTH SYSTEMS 2496 01:37:24,240 --> 01:37:27,120 ARE ONLY AS USEFUL AND RELEVANT 2497 01:37:27,120 --> 01:37:31,720 AS THE MEASURES WE ARE USING-. 2498 01:37:31,720 --> 01:37:35,360 FOR THIS REASONING I FOCUSSED ON 2499 01:37:35,360 --> 01:37:36,880 IMPROVING THE MEASURES OF 2500 01:37:36,880 --> 01:37:38,200 PATIENT-REPORTED OUTCOMES AND 2501 01:37:38,200 --> 01:37:39,960 THERE REMAINS SO MUCH TO BE DONE 2502 01:37:39,960 --> 01:37:41,560 TO MAKE SURE INDIVIDUALIZED AND 2503 01:37:41,560 --> 01:37:43,280 POPULATION OUTCOMES ARE MORE 2504 01:37:43,280 --> 01:37:45,160 WIDELY USED AND AVAILABLE. 2505 01:37:45,160 --> 01:37:47,120 WE STILL DON'T HAVE GOOD 2506 01:37:47,120 --> 01:37:50,400 MEASURES AT THE POPULATION 2507 01:37:50,400 --> 01:37:50,600 LEVEL. 2508 01:37:50,600 --> 01:37:55,040 WE USE THE BEST INDICATORS 2509 01:37:55,040 --> 01:37:56,840 AVAILABLE AND WE HAVE DONE AGING 2510 01:37:56,840 --> 01:37:58,840 IN CARE THAT HAVE PROVEN TO BE 2511 01:37:58,840 --> 01:38:00,280 BURDENSOME SUCH AS TRYING TO 2512 01:38:00,280 --> 01:38:01,000 REDUCE TRANSFERS IN THE LAST 2513 01:38:01,000 --> 01:38:03,000 DAYS OF LIFE. 2514 01:38:03,000 --> 01:38:05,200 I HOPE THE GAPS AND 2515 01:38:05,200 --> 01:38:06,880 OPPORTUNITIES THAT WERE SO 2516 01:38:06,880 --> 01:38:09,400 THOUGHTFULLY PRESENTED BY OUR 2517 01:38:09,400 --> 01:38:10,280 COLLEAGUES WILL CONTINUE TO 2518 01:38:10,280 --> 01:38:11,400 MAINTAIN OUR AWARENESS OF THE 2519 01:38:11,400 --> 01:38:13,560 GOAL OF FOCUSSING ON WHAT 2520 01:38:13,560 --> 01:38:14,720 MATTERS MOST TO THOSE LIVING 2521 01:38:14,720 --> 01:38:16,800 WITH DEMENTIA AND CARE PARTNERS 2522 01:38:16,800 --> 01:38:21,560 AND ENCOURAGE US AND 2523 01:38:21,560 --> 01:38:22,680 RESEARCHERS, HEALTH CARE 2524 01:38:22,680 --> 01:38:23,600 PROFESSIONALS AND POLICY MAKERS 2525 01:38:23,600 --> 01:38:29,640 TO MAKE THE GOAL A REALITY. 2526 01:38:29,640 --> 01:38:32,880 >>THANK YOU FOR THESE REMARKS. 2527 01:38:32,880 --> 01:38:35,080 WE'LL OPEN IT THE DISCUSSION TO 2528 01:38:35,080 --> 01:38:39,320 QUESTIONS ANYONE MAY HAVE ABOUT 2529 01:38:39,320 --> 01:38:42,920 THE PRESENTATIONS AND PANELIST 2530 01:38:42,920 --> 01:38:43,120 REMARKS. 2531 01:38:43,120 --> 01:38:45,560 THERE'S A VARIETY OF QUESTIONS 2532 01:38:45,560 --> 01:38:46,000 SUBMITTED. 2533 01:38:46,000 --> 01:38:47,360 FOR OUR DISCUSSION WE'LL BE 2534 01:38:47,360 --> 01:38:49,360 FOCUSSING ON QUESTIONS THAT ARE 2535 01:38:49,360 --> 01:38:51,720 RELATED TO MEASURING WHAT 2536 01:38:51,720 --> 01:38:52,400 MATTERS TO PEOPLE LIVING WITH 2537 01:38:52,400 --> 01:38:56,160 DEMENTIA. 2538 01:38:56,160 --> 01:39:00,320 TO START I HAVE A QUESTION FOR 2539 01:39:00,320 --> 01:39:03,400 DR. MOLONY. 2540 01:39:03,400 --> 01:39:04,880 YOU PRESENT THE IMPORTANCE OF 2541 01:39:04,880 --> 01:39:06,880 WELL BEING FOR THOSE LIVING WITH 2542 01:39:06,880 --> 01:39:07,800 DEMENTIA AS WELL AS RESEARCH 2543 01:39:07,800 --> 01:39:11,000 THAT FOCUSES ON A VERY SPECIFIC 2544 01:39:11,000 --> 01:39:12,920 MEASURE OF WELL BEING AFFECT 2545 01:39:12,920 --> 01:39:13,280 BALANCE. 2546 01:39:13,280 --> 01:39:16,440 COULD YOU TALK ABOUT THE PROCESS 2547 01:39:16,440 --> 01:39:19,240 AND ANY CHALLENGES RELATED TO 2548 01:39:19,240 --> 01:39:21,840 IDENTIFYING SPECIFIC CONCEPTS TO 2549 01:39:21,840 --> 01:39:25,000 MEASURE WITHIN A BROAD DOMAIN 2550 01:39:25,000 --> 01:39:25,800 THAT'S CLEARLY IMPORTANT? 2551 01:39:25,800 --> 01:39:28,560 >>THANK YOU FOR THAT QUESTION. 2552 01:39:28,560 --> 01:39:30,040 >>THERE ARE A VARIETY OF 2553 01:39:30,040 --> 01:39:32,120 DIFFERENT TYPES OF MEASURES FOR 2554 01:39:32,120 --> 01:39:33,360 POSITIVE EMOTION AND AFFECT 2555 01:39:33,360 --> 01:39:33,840 BALANCE. 2556 01:39:33,840 --> 01:39:35,920 POSITIVE AND NEGATIVE EMOTION. 2557 01:39:35,920 --> 01:39:39,520 AND DEPENDING UPON THE SPECIFIC 2558 01:39:39,520 --> 01:39:40,600 MEASURE THAT'S USED THEY 2559 01:39:40,600 --> 01:39:42,080 HIGHLIGHT DIFFERENT TYPE OF 2560 01:39:42,080 --> 01:39:43,600 EMOTION, WHAT COUNTS AS A 2561 01:39:43,600 --> 01:39:45,120 POSITIVE EMOTION OR WHAT COUNTS 2562 01:39:45,120 --> 01:39:50,920 AS A NEGATIVE EMOTION. 2563 01:39:50,920 --> 01:39:51,520 ALSO THEY REQUIRE DIFFERENT 2564 01:39:51,520 --> 01:39:52,360 AMOUNTS OF INTERPRETATION. 2565 01:39:52,360 --> 01:39:55,200 IT DEPENDS ON HOW MUCH OF THE 2566 01:39:55,200 --> 01:39:59,720 CO 2567 01:39:59,720 --> 01:40:01,400 CONTEXT IS BROUGHT IN AND THOSE 2568 01:40:01,400 --> 01:40:03,280 ARE IMPORTANT IN LOOKING AT THE 2569 01:40:03,280 --> 01:40:05,320 WORK GOING FORWARD AND MAY 2570 01:40:05,320 --> 01:40:08,480 AFFECT THE AMOUNT OF TRAINING TO 2571 01:40:08,480 --> 01:40:09,720 GET GOOD INTERRATED RELIABILITY 2572 01:40:09,720 --> 01:40:20,040 FOR THE MEASURES. 2573 01:40:23,320 --> 01:40:24,640 >>THANK YOU. 2574 01:40:24,640 --> 01:40:26,480 I'LL JUMP IN WITH QUESTIONS FROM 2575 01:40:26,480 --> 01:40:28,080 THE AUDIENCE. 2576 01:40:28,080 --> 01:40:32,360 WE'LL TRY TO GET TO AS MANY AS 2577 01:40:32,360 --> 01:40:34,760 WE CAN AND KNOW ALL THE 2578 01:40:34,760 --> 01:40:35,880 QUESTIONS WILL BE READ BY THE 2579 01:40:35,880 --> 01:40:39,040 STEERING COMMITTEE. 2580 01:40:39,040 --> 01:40:41,840 THIS IS A QUESTION PROBABLY BEST 2581 01:40:41,840 --> 01:40:43,640 ADDRESSED TO DR. REILLY. 2582 01:40:43,640 --> 01:40:47,000 I'D LOVE TO KNOW IF THE OUTCOME 2583 01:40:47,000 --> 01:40:48,280 OF PEOPLE LIVING WITH DEMENTIA 2584 01:40:48,280 --> 01:40:49,560 WERE FOCUSSED ON OTHERS RATHER 2585 01:40:49,560 --> 01:40:50,840 THAN THEMSELVES. 2586 01:40:50,840 --> 01:40:52,120 RATHER, THINKING ABOUT THEIR 2587 01:40:52,120 --> 01:40:56,080 CARE PARTNER'S WELL BEING OR 2588 01:40:56,080 --> 01:40:57,120 AFTER A PERSON LIVING WITH 2589 01:40:57,120 --> 01:41:05,000 DEMENTIA PASSES AWAY. 2590 01:41:05,000 --> 01:41:07,440 >>WHEN WE CONDUCTED THE 2591 01:41:07,440 --> 01:41:08,400 INTERVIEWS WE INTERVIEWED A 2592 01:41:08,400 --> 01:41:16,680 RANGE AND THAT WAS BROUGHT UP 2593 01:41:16,680 --> 01:41:19,120 WHEN WE NARROWED DOWN ON THE 2594 01:41:19,120 --> 01:41:21,160 ITEMS WE WANTED TO FOCUS ON 2595 01:41:21,160 --> 01:41:22,480 THOSE LIVING WITH DEMENTIA. 2596 01:41:22,480 --> 01:41:24,320 IT WASN'T A CORE OUTCOME FOR 2597 01:41:24,320 --> 01:41:29,360 CARE PARTNERS. 2598 01:41:29,360 --> 01:41:31,800 HAD IT BEEN WE'D GO INTO MORE 2599 01:41:31,800 --> 01:41:32,040 DETAIL. 2600 01:41:32,040 --> 01:41:32,560 I HOPE IT ANSWERED YOUR 2601 01:41:32,560 --> 01:41:42,760 QUESTION. 2602 01:41:45,240 --> 01:41:47,640 ALSO I THOUGHT WHAT JIM SAID WAS 2603 01:41:47,640 --> 01:41:52,680 POIGNANT ABOUT THE IMPORTANT OF 2604 01:41:52,680 --> 01:42:02,440 RESPECT THERE WAS A THOUGHT AND 2605 01:42:02,440 --> 01:42:07,960 FEELING OF BEING RESPECTED BY 2606 01:42:07,960 --> 01:42:11,640 NOERJZ AND WHEN WE -- 2607 01:42:13,520 --> 01:42:16,520 WHEN WE LOOKED AT OUTCOMES 2608 01:42:16,520 --> 01:42:19,240 SHOULD BE REPRESENTED IT WASN'T 2609 01:42:19,240 --> 01:42:20,320 REPRESENTED. 2610 01:42:20,320 --> 01:42:22,080 THIS IS AN IMPORTANT GAP WHICH 2611 01:42:22,080 --> 01:42:23,400 ALIGNS WITH EVERYTHING THAT'S 2612 01:42:23,400 --> 01:42:33,840 BEEN SAID IN THE SESSION. 2613 01:42:34,520 --> 01:42:37,360 >>DO OUTCOME MEASURES APPLY 2614 01:42:37,360 --> 01:42:38,000 EQUALLY ACROSS DIFFERENT TYPES 2615 01:42:38,000 --> 01:42:48,200 OF DEMENTIA? 2616 01:42:49,280 --> 01:42:50,960 >>I THINK YOU NEED DIFFERENT 2617 01:42:50,960 --> 01:42:52,000 OUTCOMES FOR DIFFERENT STAGES 2618 01:42:52,000 --> 01:42:57,240 AND THE WORK WE DID FOCUSSED ON 2619 01:42:57,240 --> 01:42:59,320 PEOPLE AT THE EARLIEST AND 2620 01:42:59,320 --> 01:43:01,320 MODERATE STAGE. 2621 01:43:01,320 --> 01:43:05,240 I THINK YOU NEED SEPARATE PIECES 2622 01:43:05,240 --> 01:43:06,480 OF WORK THOUGH WE'RE WORKING 2623 01:43:06,480 --> 01:43:08,040 WITH A NUMBER OF TRUSTS AND 2624 01:43:08,040 --> 01:43:10,640 LOOKING AT THE 13 OUTCOME ITEMS 2625 01:43:10,640 --> 01:43:12,040 AND HOW THESE RELATE TO PEOPLE 2626 01:43:12,040 --> 01:43:15,720 WITH ADVANCED DEMENTIA. 2627 01:43:15,720 --> 01:43:17,560 I THINK THERE'S OVERLAP AND WE 2628 01:43:17,560 --> 01:43:19,200 NEED TO GET THE MEASUREMENTS 2629 01:43:19,200 --> 01:43:19,440 RIGHT. 2630 01:43:19,440 --> 01:43:23,600 I THINK THERE'S A LOT OF WORK TO 2631 01:43:23,600 --> 01:43:26,920 BE DONE AROUND THE MEASUREMENT 2632 01:43:26,920 --> 01:43:29,800 AND SCIENCE OF MEASUREMENT AND 2633 01:43:29,800 --> 01:43:31,920 FOR THIS TIME RATHER THAN NOT 2634 01:43:31,920 --> 01:43:35,360 20, 30 YEARS AGO WHEN PEOPLE 2635 01:43:35,360 --> 01:43:36,600 WEREN'T -- PEOPLE LIVING WITH 2636 01:43:36,600 --> 01:43:40,800 DEMENTIA WEREN'T INCLUDED AND 2637 01:43:40,800 --> 01:43:41,360 THEIR VOICES WEREN'T HEARD 2638 01:43:41,360 --> 01:43:51,560 NECESSARILY. 2639 01:43:51,560 --> 01:43:55,480 >>DR. MOLONY AND JENNINGS I 2640 01:43:55,480 --> 01:43:58,720 WONDER IF YOU CAN TALK ABOUT THE 2641 01:43:58,720 --> 01:44:04,000 TOOLS YOU'VE BEEN FOCUSSING ON 2642 01:44:04,000 --> 01:44:12,240 THAT CAN BE USED THROUGHOUT THE 2643 01:44:12,240 --> 01:44:12,720 SPAN. 2644 01:44:12,720 --> 01:44:15,360 >>AND BALANCE IS ONE REGARDLESS 2645 01:44:15,360 --> 01:44:17,200 OF THE TIME OF DEMENTIA IS A 2646 01:44:17,200 --> 01:44:19,800 WORTHWHILE CONCEPT IN TERMS OF 2647 01:44:19,800 --> 01:44:23,320 AN OUTCOME MEASURE. 2648 01:44:23,320 --> 01:44:26,920 I THINK THE CHALLENGE BECOMES 2649 01:44:26,920 --> 01:44:28,880 WHEN IS SELF-REPORT -- WHEN DOES 2650 01:44:28,880 --> 01:44:31,200 THAT BECOME SO CHALLENGING THAT 2651 01:44:31,200 --> 01:44:33,240 THEN WE NEED TO SURROUND THAT 2652 01:44:33,240 --> 01:44:36,200 WITH OTHER TYPES AND CAN WE 2653 01:44:36,200 --> 01:44:38,680 SUPPORT SELF-REPORT IN OTHER 2654 01:44:38,680 --> 01:44:40,840 WAYS THAT MAKE IT VALUABLE 2655 01:44:40,840 --> 01:44:50,120 LONGER INTO THE DISEASE PROCESS. 2656 01:44:50,120 --> 01:44:52,560 >>I THINK ONE OF THE NICE 2657 01:44:52,560 --> 01:44:54,480 THINGS OF GOAL ATTAINMENT 2658 01:44:54,480 --> 01:44:56,240 SCALING IT CAN ACCOMMODATE 2659 01:44:56,240 --> 01:44:57,800 DIFFERENT STAGES OF THE DISEASE 2660 01:44:57,800 --> 01:45:00,920 BUT STILL HAS ISSUE WITH 2661 01:45:00,920 --> 01:45:02,200 SELF-REPORT OR IDENTIFICATION OF 2662 01:45:02,200 --> 01:45:03,120 THE GOAL. 2663 01:45:03,120 --> 01:45:05,760 AS THE DISEASE PROGRESSES THAT 2664 01:45:05,760 --> 01:45:07,960 MAY BECOME MORE CHALLENGING AND 2665 01:45:07,960 --> 01:45:11,280 HOW TO INVOLVE THE CARE PARTNER 2666 01:45:11,280 --> 01:45:17,760 AND THIS CONCEPT OF TRIATIC 2667 01:45:17,760 --> 01:45:24,400 COMMUNICATION IS CRITICAL TOFIDE 2668 01:45:24,400 --> 01:45:28,600 GOALS AND MAKE SURE THEY'RE 2669 01:45:28,600 --> 01:45:28,920 CONCORDANT. 2670 01:45:28,920 --> 01:45:31,560 IT'S AN EXCITING FIELD TO WORK 2671 01:45:31,560 --> 01:45:33,120 IN BECAUSE THERE'S SO MUCH TO BE 2672 01:45:33,120 --> 01:45:35,640 DONE TOWARDS IMPROVING THE WAY 2673 01:45:35,640 --> 01:45:37,400 WE MEASURE OUTCOMES SO OUR 2674 01:45:37,400 --> 01:45:41,480 INTERS ARE GETTING AT WHAT IS 2675 01:45:41,480 --> 01:45:43,440 MOST IMPORTANT TO PEOPLE. 2676 01:45:43,440 --> 01:45:46,040 >>IN YOUR EXPERIENCE AS A CARE 2677 01:45:46,040 --> 01:45:49,000 PARTNER AND I BELIEVE YOU 2678 01:45:49,000 --> 01:45:50,920 MENTIONED THAT YOUR WIFE HAD 2679 01:45:50,920 --> 01:45:53,280 PARTICIPATED IN SOME TRIALS. 2680 01:45:53,280 --> 01:45:59,160 I WONDER IF YOU HAVE THOUGHTS 2681 01:45:59,160 --> 01:46:05,200 ABOUT REPORTING INTER RESEARCH 2682 01:46:05,200 --> 01:46:07,840 CONTEXT ON THESE TYPES OF 2683 01:46:07,840 --> 01:46:08,920 MEASURES IF YOU WERE A 2684 01:46:08,920 --> 01:46:19,480 PARTICIPANT IN A RESEARCH STUDY. 2685 01:46:22,480 --> 01:46:24,800 >>SHE WAS NOT ABLE TO PROVIDE 2686 01:46:24,800 --> 01:46:26,400 VERY MUCH FEEDBACK. 2687 01:46:26,400 --> 01:46:30,160 SOME OF THE STUDIES WERE MORE 2688 01:46:30,160 --> 01:46:31,480 MEDICAL AS IN PHARMACOLOGY SO 2689 01:46:31,480 --> 01:46:34,360 I'M AFRAID I REALLY DON'T HAVE 2690 01:46:34,360 --> 01:46:38,760 ANY GREAT INSIGHT ON THAT. 2691 01:46:38,760 --> 01:46:43,840 IT IS OBVIOUSLY VERY DIFFICULT 2692 01:46:43,840 --> 01:46:47,160 AND I RESPECT THE CHALLENGES 2693 01:46:47,160 --> 01:46:49,080 THEY FACE IN TERMS OF TRYING TO 2694 01:46:49,080 --> 01:46:52,400 COME UP WITH SOME SORT OF 2695 01:46:52,400 --> 01:46:55,000 OBJECTIVE MEASURES FOR SOMETHING 2696 01:46:55,000 --> 01:46:56,560 THAT IS INHERENTLY SUBJECTIVE 2697 01:46:56,560 --> 01:46:59,520 AND OF COURSE THE IRONY WE'RE 2698 01:46:59,520 --> 01:47:02,320 ALL TALKING ABOUT THE IMPORTANCE 2699 01:47:02,320 --> 01:47:06,640 OF PERSON-CENTERED CARE 2700 01:47:06,640 --> 01:47:09,360 RECOGNIZING THAT EACH PERSON IS 2701 01:47:09,360 --> 01:47:11,200 UNIQUE, THAT WONDERFUL SLIDE 2702 01:47:11,200 --> 01:47:14,680 ABOUT THE GREAT AMERICAN LINE 2703 01:47:14,680 --> 01:47:15,720 AND ONE SIZE FITS ALL. 2704 01:47:15,720 --> 01:47:17,000 THEY'RE ALL UNIQUE. 2705 01:47:17,000 --> 01:47:19,720 TRYING TO COME UP WITH SOME 2706 01:47:19,720 --> 01:47:23,680 STANDARD WAY TO MEASURE OR TO 2707 01:47:23,680 --> 01:47:30,120 REPORT IS AN ALMOST BUT NOT 2708 01:47:30,120 --> 01:47:31,360 INSUPERABLE CHALLENGE AND I 2709 01:47:31,360 --> 01:47:32,880 RESPECT ALL THE RESEARCHERS 2710 01:47:32,880 --> 01:47:36,720 GRAPPLING WITH THAT IRONY OF 2711 01:47:36,720 --> 01:47:39,560 TRYING TO COME UP WITH AN 2712 01:47:39,560 --> 01:47:40,720 OBJECTIVE WAY TO DEAL WITH 2713 01:47:40,720 --> 01:47:48,760 SOMETHING VERY SUBJECTIVE. 2714 01:47:48,760 --> 01:47:51,200 >>I WONDER IF WE'LL ARRIVE AT 2715 01:47:51,200 --> 01:47:54,440 WHAT IS COMMON TO THE HUMAN 2716 01:47:54,440 --> 01:47:55,720 EXPERIENCE AND WHAT PEOPLE DO 2717 01:47:55,720 --> 01:48:02,200 DESIRE FOR THEIR OWN LIVES. 2718 01:48:02,200 --> 01:48:07,480 THEN I BELIEVE THERE'S ALSO 2719 01:48:07,480 --> 01:48:14,360 SPACE FOR INDIVIDUALIZED GOALS. 2720 01:48:14,360 --> 01:48:15,360 DR. JENNINGS HIGHLIGHTED WITH 2721 01:48:15,360 --> 01:48:19,440 THE GOAL ATTAINMENT SCALING. 2722 01:48:19,440 --> 01:48:22,600 >>ONE THING ONE SHOULD CONSIDER 2723 01:48:22,600 --> 01:48:25,800 I THOUGHT THE QUESTION EARLIER 2724 01:48:25,800 --> 01:48:28,280 WAS ABOUT THE DIFFERENT TYPES OF 2725 01:48:28,280 --> 01:48:30,720 DEMEN 2726 01:48:30,720 --> 01:48:32,040 DEMENTIA, NOT STAGES, LIKE 2727 01:48:32,040 --> 01:48:34,960 FRONTAL, TEMPORAL AND LEWY BODY. 2728 01:48:34,960 --> 01:48:37,600 THEY CAN BE VERY DIFFERENT FROM 2729 01:48:37,600 --> 01:48:39,680 THE SYMPTOMS OF THE MOST COMMON 2730 01:48:39,680 --> 01:48:39,960 ALZHEIMER'S. 2731 01:48:39,960 --> 01:48:41,520 SO QUALITY OF LIFE MEASURES FOR 2732 01:48:41,520 --> 01:48:45,600 SOMEONE ESPECIALLY A YOUNGER 2733 01:48:45,600 --> 01:48:47,280 PERSON WHO IS DEALING WITH 2734 01:48:47,280 --> 01:48:50,160 FRONTAL TEMPORAL DEMENTIA MAY BE 2735 01:48:50,160 --> 01:48:52,600 VERY DIFFERENT FROM AN OLDER 2736 01:48:52,600 --> 01:48:53,480 PERSON EXPERIENCING THE EARLIER 2737 01:48:53,480 --> 01:48:54,200 STAGES OF ALZHEIMER'S. 2738 01:48:54,200 --> 01:48:57,760 I DON'T THINK THAT HAS BEEN 2739 01:48:57,760 --> 01:48:59,880 GRAPPLED WITH AND IT'S BEYOND ME 2740 01:48:59,880 --> 01:49:02,280 BUT THAT IS WORTH CONSIDERING 2741 01:49:02,280 --> 01:49:04,040 BECAUSE MANY TIMES THE SITUATION 2742 01:49:04,040 --> 01:49:08,800 FOR A YOUNGER WORKING PERSON 2743 01:49:08,800 --> 01:49:12,240 WITH FRONTAL TEMPORAL DEMENTIA 2744 01:49:12,240 --> 01:49:13,200 IS DIFFERENT FROM A RETIRED 2745 01:49:13,200 --> 01:49:16,560 PERSON BEGINNING TO DEAL WITH 2746 01:49:16,560 --> 01:49:17,080 ALZHEIMER'S. 2747 01:49:17,080 --> 01:49:20,400 >>THAT'S WHERE WE COME BACK TO 2748 01:49:20,400 --> 01:49:22,680 FOCUSSING ON THE VALIDITY OF THE 2749 01:49:22,680 --> 01:49:25,920 INSTRUMENTS FOR THE PEOPLE IN A 2750 01:49:25,920 --> 01:49:30,160 STUDY POPULATION MAKING SURE WE 2751 01:49:30,160 --> 01:49:31,640 HAVE -- WE'RE MEASURE THINGS 2752 01:49:31,640 --> 01:49:32,920 APPROPRIATE TO PEOPLE'S LIVES 2753 01:49:32,920 --> 01:49:33,560 AND THEIR EXPERIENCE WITH THE 2754 01:49:33,560 --> 01:49:39,080 DISEASE. 2755 01:49:39,080 --> 01:49:39,360 ABSOLUTELY. 2756 01:49:39,360 --> 01:49:40,480 I AGREE BECAUSE THERE'S MANY 2757 01:49:40,480 --> 01:49:44,800 TYPES OF DEMENTIA AND ALSO 2758 01:49:44,800 --> 01:49:50,760 DIFFERENT STAGES THAT WILL POSE 2759 01:49:50,760 --> 01:49:53,600 CHALLENGES. 2760 01:49:53,600 --> 01:49:56,160 LOOKING FOR COMMONALITY IS 2761 01:49:56,160 --> 01:49:57,520 VALUABLE TO NOT DEVELOP 25 2762 01:49:57,520 --> 01:49:59,080 DIFFERENT INSTRUMENTS BUT 2763 01:49:59,080 --> 01:50:02,040 LOOKING FOR AREAS OF OVERLAP AND 2764 01:50:02,040 --> 01:50:05,240 BEING ABLE TO BE A BIT MORE 2765 01:50:05,240 --> 01:50:07,000 FOCUSSED WOULD BE HELPFUL I 2766 01:50:07,000 --> 01:50:07,200 THINK. 2767 01:50:07,200 --> 01:50:09,200 >>I WANTED TO ADD TO THAT. 2768 01:50:09,200 --> 01:50:10,840 I THINK THAT IS ONE -- BECAUSE 2769 01:50:10,840 --> 01:50:15,280 THE DEMENTIA POPULATION IS SO 2770 01:50:15,280 --> 01:50:18,120 HETEROGENOUS AND DIFFERENT 2771 01:50:18,120 --> 01:50:19,000 STAGES AND DISEASE TYPES AND 2772 01:50:19,000 --> 01:50:23,120 CARE PARTNER AND FAMILY MEMBER 2773 01:50:23,120 --> 01:50:24,720 RELATIONSHIPS THEY ALL IMPACT 2774 01:50:24,720 --> 01:50:25,800 WHAT'S IMPORTANT TO SOMEONE AND 2775 01:50:25,800 --> 01:50:27,880 WHAT THEY WANT TO ACHIEVE OUT OF 2776 01:50:27,880 --> 01:50:29,200 THE INTERVENTION. 2777 01:50:29,200 --> 01:50:31,800 THAT'S ONE OF THE BENEFITS OF 2778 01:50:31,800 --> 01:50:33,800 INDIVIDUALIZED GOAL ATTAINMENT 2779 01:50:33,800 --> 01:50:35,560 IS IT DOES PRODUCE THE 2780 01:50:35,560 --> 01:50:37,040 OPPORTUNITY TO NOT ONLY MEASURE 2781 01:50:37,040 --> 01:50:38,160 WHAT'S IMPORTANT TO THE 2782 01:50:38,160 --> 01:50:40,880 INDIVIDUAL BUT YOU CAN ALSO 2783 01:50:40,880 --> 01:50:42,840 INCLUDE OTHER PERSON-REPORTED 2784 01:50:42,840 --> 01:50:44,960 OUTCOMES IN THAT STUDY. 2785 01:50:44,960 --> 01:50:50,120 SO MULTIPLE WAYS TO LOOK AT THE 2786 01:50:50,120 --> 01:50:51,320 OUTCOMES INDIVIDUALS ARE HOPING 2787 01:50:51,320 --> 01:50:59,160 TO ACHIEVE FROM AN INTERVENTION. 2788 01:50:59,160 --> 01:51:02,240 >>I THINK WE HAVE MUCH TO LEARN 2789 01:51:02,240 --> 01:51:04,040 FROM PROCESS MEASURES TO LEARN 2790 01:51:04,040 --> 01:51:05,640 FROM INDIVIDUALS WITH LIVED 2791 01:51:05,640 --> 01:51:06,800 EXPERIENCE WHAT'S WORKING WELL 2792 01:51:06,800 --> 01:51:07,760 FOR THEM. 2793 01:51:07,760 --> 01:51:10,520 FROM INDIVIDUALS WHO MAY BE 2794 01:51:10,520 --> 01:51:14,000 DEALING WITH LEWY BODY OR 2795 01:51:14,000 --> 01:51:17,240 FRONTAL TEMPORAL DEMENTIA WHO 2796 01:51:17,240 --> 01:51:19,240 ARE YOUNGER OUR OLDER CAN TELL 2797 01:51:19,240 --> 01:51:21,120 US STRATEGIES THAT WORK WELL FOR 2798 01:51:21,120 --> 01:51:23,080 THEM OR MORE DETRIMENTAL TO 2799 01:51:23,080 --> 01:51:24,160 THEIR WELL BEING. 2800 01:51:24,160 --> 01:51:25,120 SOME OF THE PROCESS MEASURES 2801 01:51:25,120 --> 01:51:27,120 THAT CAPTURE WHAT IS OR IS NOT 2802 01:51:27,120 --> 01:51:28,680 WORKING WELL IS ALSO A USEFUL 2803 01:51:28,680 --> 01:51:38,400 STRATEGY. 2804 01:51:38,400 --> 01:51:40,200 >>WE HAVE ANOTHER QUESTION FROM 2805 01:51:40,200 --> 01:51:43,640 THE AUDIENCE THAT WAS PROBABLY 2806 01:51:43,640 --> 01:51:47,040 PROMPTED BY DR. MOLONY'S 2807 01:51:47,040 --> 01:51:50,840 PRESENTATION ON AT-HOMENESS AND 2808 01:51:50,840 --> 01:51:53,520 A LARGER ISSUE OF BEING AT HOME. 2809 01:51:53,520 --> 01:51:56,840 IS THERE ANY RESEARCH ON HOW AN 2810 01:51:56,840 --> 01:51:59,520 IMPACT ON THE WELL BEING OF THE 2811 01:51:59,520 --> 01:52:01,840 CAREGIVER AND PERSON WITH 2812 01:52:01,840 --> 01:52:03,840 DEMENTIA DIAD WHO ARE AGING IN 2813 01:52:03,840 --> 01:52:06,320 PLACE SO SAFETY AND 2814 01:52:06,320 --> 01:52:07,960 ACCESSIBILITY FOR FALL 2815 01:52:07,960 --> 01:52:11,920 PREVENTION, MAINTENANCE AROUND 2816 01:52:11,920 --> 01:52:13,480 THE HOUSE -- IF ANY OF THE 2817 01:52:13,480 --> 01:52:22,960 PANELISTS WOULD LIKE TO COMMENT. 2818 01:52:22,960 --> 01:52:27,480 >>THERE'S CERTAINLY LITERATURE 2819 01:52:27,480 --> 01:52:30,200 IRRESPECTIVE IF SOMEONE HAS 2820 01:52:30,200 --> 01:52:32,880 IMPORTANCE OF THE PHYSICAL 2821 01:52:32,880 --> 01:52:33,880 ENVIRONMENT OF WELL-BEING AND IF 2822 01:52:33,880 --> 01:52:36,080 YOU AT THE VARIABLE OF LIVING 2823 01:52:36,080 --> 01:52:37,640 WITH DEMENTIA THERE'S RESEARCH 2824 01:52:37,640 --> 01:52:39,520 ON THE QUALITIES OF THE 2825 01:52:39,520 --> 01:52:41,400 ENVIRONMENT THAT MAY IMPACT BOTH 2826 01:52:41,400 --> 01:52:43,760 SAFETY AND OTHER ELEMENTS OF 2827 01:52:43,760 --> 01:52:48,760 HOLISTIC HEALTH AND QUALITY OF 2828 01:52:48,760 --> 01:52:49,080 LIFE. 2829 01:52:49,080 --> 01:52:52,040 I KNOW WHAT IN THE PHYSICAL 2830 01:52:52,040 --> 01:52:53,640 ENVIRONMENT MAY CONTRIBUTE TO 2831 01:52:53,640 --> 01:52:56,840 WELL-BEING AND IN TERMS OF BEING 2832 01:52:56,840 --> 01:53:02,200 ABLE TO FIND ONE'S WAY AROUND 2833 01:53:02,200 --> 01:53:06,320 THE ENVIRONMENT IN TERMS OF THE 2834 01:53:06,320 --> 01:53:07,320 USEFULNESS OF THE PHYSICAL 2835 01:53:07,320 --> 01:53:08,280 ENVIRONMENT AND AS THE PERSON 2836 01:53:08,280 --> 01:53:08,840 MENTIONED THE SAFETY OF THE 2837 01:53:08,840 --> 01:53:19,040 ENVIRONMENT. 2838 01:53:23,080 --> 01:53:25,040 >>HERE'S A QUESTION ABOUT GOAL 2839 01:53:25,040 --> 01:53:32,560 ATTAINMENT IDENTIFICATION. 2840 01:53:32,560 --> 01:53:34,880 THERE MAY BE DIFFERENCES BETWEEN 2841 01:53:34,880 --> 01:53:37,040 WHAT THE PERSON LIVING WITH 2842 01:53:37,040 --> 01:53:42,520 DEMENTIA WANTS AND WHAT THE CARE 2843 01:53:42,520 --> 01:53:44,760 PARTNER NEEDS OR WANTS. 2844 01:53:44,760 --> 01:53:47,880 WE'VE HAD OTHER QUESTIONS IN THE 2845 01:53:47,880 --> 01:53:50,280 CHAT ABOUT CARE GIVING AS WELL. 2846 01:53:50,280 --> 01:53:51,440 I WONDERED IF YOU COULD COMMENT 2847 01:53:51,440 --> 01:53:54,880 ON THAT. 2848 01:53:54,880 --> 01:53:57,240 HOW THAT'S ARISEN IN THE WORK 2849 01:53:57,240 --> 01:53:58,040 YOU'VE BEEN DOING. 2850 01:53:58,040 --> 01:54:01,240 >>DEFINITELY. 2851 01:54:01,240 --> 01:54:05,960 IT REFLECTS AND THINKING OF A 2852 01:54:05,960 --> 01:54:06,680 CLINICIAN REFLECTS THE REAL 2853 01:54:06,680 --> 01:54:09,280 WORLD CLINICAL SETTINGS IN THAT 2854 01:54:09,280 --> 01:54:10,080 YOU HAVE AN INDIVIDUAL WHOSE 2855 01:54:10,080 --> 01:54:12,360 VOICE YOU WANT TO HEAR AND HAVE 2856 01:54:12,360 --> 01:54:14,400 A CARE PARTNER WHOSE VOICE YOU 2857 01:54:14,400 --> 01:54:15,800 NEED TO HEAR. 2858 01:54:15,800 --> 01:54:21,360 THEY MAY BE CONCORDANT OR NOT. 2859 01:54:21,360 --> 01:54:22,520 NAVIGATING THAT COULD BE 2860 01:54:22,520 --> 01:54:24,360 CHALLENGING CLINICALLY. 2861 01:54:24,360 --> 01:54:25,840 WHEN YOU ARE USING THE GOAL 2862 01:54:25,840 --> 01:54:27,640 ATTAINMENT SCALING AS A TOOL 2863 01:54:27,640 --> 01:54:29,120 IT'S IMPORTANT TO THINK THROUGH 2864 01:54:29,120 --> 01:54:31,440 IN YOUR STUDY WHAT STAGE THE 2865 01:54:31,440 --> 01:54:33,600 PARTICIPANTS WILL BE AND HOW YOU 2866 01:54:33,600 --> 01:54:35,240 WILL NAVIGATE SETTING THE GOALS 2867 01:54:35,240 --> 01:54:38,760 WILL IT BE THE INDIVIDUAL OR THE 2868 01:54:38,760 --> 01:54:39,880 COMMUNICATION PROCESS WHERE 2869 01:54:39,880 --> 01:54:43,720 THERE'S AGREED UPON GOAL OR CARE 2870 01:54:43,720 --> 01:54:48,920 GOAL AND THEY ALL HAVE STRENGTHS 2871 01:54:48,920 --> 01:54:50,600 OR CHALLENGES OR WEAKNESSES BUT 2872 01:54:50,600 --> 01:54:53,080 IT'S SIMILAR IN A 2873 01:54:53,080 --> 01:54:53,840 PERSON-REPORTED OUTCOME 2874 01:54:53,840 --> 01:54:56,320 MEASUREMENT AND YOU'LL HAVE TO 2875 01:54:56,320 --> 01:54:58,920 DECIDE WHO YOU'LL HAVE TO HAVE 2876 01:54:58,920 --> 01:54:59,520 REPORT. 2877 01:54:59,520 --> 01:55:01,720 YOUR GOAL ATTAINMENT SCALING 2878 01:55:01,720 --> 01:55:04,760 DOESN'T SOLVE THAT ISSUE. 2879 01:55:04,760 --> 01:55:06,440 IT HAS THE SAME CONSIDERATION 2880 01:55:06,440 --> 01:55:16,280 THAT ANY KIND OF PERSON-REPORTED 2881 01:55:16,280 --> 01:55:18,560 OUTCOME MEASUREMENT WOULD. 2882 01:55:18,560 --> 01:55:19,920 >>THERE'S A QUESTION ON 2883 01:55:19,920 --> 01:55:22,440 ADOPTION OF RECOMMENDED 2884 01:55:22,440 --> 01:55:22,720 MEASURES. 2885 01:55:22,720 --> 01:55:24,280 SO IN THE PAST IT HASN'T BEEN 2886 01:55:24,280 --> 01:55:25,800 CLEAR RECOMMENDATIONS FOR 2887 01:55:25,800 --> 01:55:27,360 OUTCOME MEASURES HAVE BEEN TAKEN 2888 01:55:27,360 --> 01:55:28,280 UP BY RESEARCHERS OR HEALTH 2889 01:55:28,280 --> 01:55:38,440 SERVICES. 2890 01:55:46,000 --> 01:55:49,080 >>I KNOW THE NATIONAL INSTITUTE 2891 01:55:49,080 --> 01:55:51,720 FOR HEALTH RESEARCH IN ENGLAND 2892 01:55:51,720 --> 01:55:55,160 REQUIRES THAT PEOPLE WHO -- 2893 01:55:55,160 --> 01:55:56,720 RESEARCHERS GOING FOR FUNDING 2894 01:55:56,720 --> 01:55:58,080 LOOK AT THE COMET INITIATIVE. 2895 01:55:58,080 --> 01:55:59,520 LOOK BASICALLY TO SEE IF THERE'S 2896 01:55:59,520 --> 01:56:02,840 BEEN A CORE OUTCOME SET DONE ON 2897 01:56:02,840 --> 01:56:04,120 THIS PARTICULAR TOPIC, WHATEVER 2898 01:56:04,120 --> 01:56:05,800 THE TOPICS ARE. 2899 01:56:05,800 --> 01:56:10,480 AND TO STATE THAT IN THEIR 2900 01:56:10,480 --> 01:56:10,840 FUNDING. 2901 01:56:10,840 --> 01:56:13,400 IT'S RELIANT ON THE RESEARCHERS 2902 01:56:13,400 --> 01:56:15,760 TO INVESTIGATE PREVIOUS CORE 2903 01:56:15,760 --> 01:56:17,760 OUTCOME SETS, STUDIES AND 2904 01:56:17,760 --> 01:56:19,800 SHOULDN'T JUST BE ONE OR TWO BUT 2905 01:56:19,800 --> 01:56:20,360 LIKE A CLINICAL TRIAL THERE 2906 01:56:20,360 --> 01:56:25,520 SHOULD BE MANY. 2907 01:56:25,520 --> 01:56:27,320 IT'S INCUMBENT ON THE 2908 01:56:27,320 --> 01:56:28,880 RESEARCHERS TO INCLUDE THAT IN 2909 01:56:28,880 --> 01:56:32,560 THEIR CASE FOR SUPPORT. 2910 01:56:32,560 --> 01:56:34,200 AND LOTS OF RESEARCHERS DON'T 2911 01:56:34,200 --> 01:56:36,960 KNOW THIS SO I'M NOT SURE WHAT 2912 01:56:36,960 --> 01:56:40,360 THE SITUATION IS IN THE U.S. AND 2913 01:56:40,360 --> 01:56:41,000 WHETHER THAT'S A REQUIREMENT OR 2914 01:56:41,000 --> 01:56:51,080 NOT. 2915 01:56:51,720 --> 01:56:55,120 >>WE MADE PROGRESS ON THIS WITH 2916 01:56:55,120 --> 01:56:56,440 THINGS SUCH AS THE PREFERENCES 2917 01:56:56,440 --> 01:56:58,640 FOR EVERYDAY LIVING IN TERMS OF 2918 01:56:58,640 --> 01:57:00,960 BEING PART OF THE NURSING HOME 2919 01:57:00,960 --> 01:57:01,560 ASSESSMENT PROCESS AND OTHER 2920 01:57:01,560 --> 01:57:09,680 MEASURES LIKE THAT. 2921 01:57:09,680 --> 01:57:11,600 I'LL ADD THERE'S AN ALZHEIMER'S 2922 01:57:11,600 --> 01:57:13,280 ASSOCIATION AND IMPACT 2923 01:57:13,280 --> 01:57:15,600 COLLABORATORY ARE WORKING ON 2924 01:57:15,600 --> 01:57:17,160 COMPILING PERSON-REPORTED 2925 01:57:17,160 --> 01:57:18,640 OUTCOME MEASURES TO BE USED BY 2926 01:57:18,640 --> 01:57:19,040 RESEARCHERS. 2927 01:57:19,040 --> 01:57:22,440 THOSE ARE TWO NIA SUPPORTED 2928 01:57:22,440 --> 01:57:23,480 INITIATIVES AND WE CERTAINLY AS 2929 01:57:23,480 --> 01:57:24,840 RESEARCHERS SHOULD BE AWARE OF 2930 01:57:24,840 --> 01:57:28,280 THOSE AND SHOULD BE USING THEM. 2931 01:57:28,280 --> 01:57:29,920 >>THIS IS SAM. 2932 01:57:29,920 --> 01:57:32,320 I WAS GOING TO MENTION OUR WORK 2933 01:57:32,320 --> 01:57:33,760 WITH LINK I.D. 2934 01:57:33,760 --> 01:57:36,960 I THINK PART OF THE PROBLEM IS 2935 01:57:36,960 --> 01:57:38,600 THAT WE DON'T USE CONSISTENT 2936 01:57:38,600 --> 01:57:44,120 MEASURES OR WE'RE NOT LOOKING AT 2937 01:57:44,120 --> 01:57:45,280 CONSISTENT OUTCOMES. 2938 01:57:45,280 --> 01:57:47,320 WE SPOKE ABOUT THE IMPORTANCE OF 2939 01:57:47,320 --> 01:57:48,280 CORE OUTCOME AREAS. 2940 01:57:48,280 --> 01:57:51,480 I THINK THAT'S ONE OF OUR 2941 01:57:51,480 --> 01:57:53,320 EFFORTS OF LINK A.D. IS TO BE 2942 01:57:53,320 --> 01:57:54,640 ABLE TO SHARE THE OUTCOMES AS A 2943 01:57:54,640 --> 01:57:56,920 GROUP OR MEASURES AS A GROUP 2944 01:57:56,920 --> 01:58:00,080 THROUGH THE REPOSITORY. 2945 01:58:00,080 --> 01:58:01,680 AND OUR FIRST PASS IS LOOKING AT 2946 01:58:01,680 --> 01:58:04,760 HOW THE MEASURES ARE 2947 01:58:04,760 --> 01:58:06,080 PERSON-CENTERED BASED ON THE 2948 01:58:06,080 --> 01:58:08,160 CRITERIA I MENTIONED EARLIER TO 2949 01:58:08,160 --> 01:58:09,200 SHOW IF THEY'VE BEEN DEVELOPED 2950 01:58:09,200 --> 01:58:12,440 IN A PERSON-CENTERED WAY OR IF 2951 01:58:12,440 --> 01:58:15,120 THEY'RE APPLIED IN A 2952 01:58:15,120 --> 01:58:15,640 PERSON-CENTERED WAY. 2953 01:58:15,640 --> 01:58:17,240 IT WILL BE HOPEFULLY A NEW 2954 01:58:17,240 --> 01:58:18,280 ADDITION TO REPOSITORIES THAT 2955 01:58:18,280 --> 01:58:28,520 ARE OUT THERE. 2956 01:58:46,840 --> 01:58:48,600 >>THERE ARE LOCAL AND 2957 01:58:48,600 --> 01:58:53,640 INDIVIDUALIZED EFFORTS AROUND 2958 01:58:53,640 --> 01:58:55,200 IMPLEMENTING MEASURES IN THE 2959 01:58:55,200 --> 01:58:56,360 HEALTH CARE SYSTEM AS WELL. 2960 01:58:56,360 --> 01:58:58,600 I THINK DR. BELANGER YOU 2961 01:58:58,600 --> 01:59:01,240 MENTIONED THAT AND SO THINKING 2962 01:59:01,240 --> 01:59:05,000 WHAT SHOULD BE ASSESSED AT EACH 2963 01:59:05,000 --> 01:59:06,600 CLINICAL VISIT AND MAKING THAT 2964 01:59:06,600 --> 01:59:07,120 INFORMATION AVAILABLE TO 2965 01:59:07,120 --> 01:59:12,560 RESEARCHERS AS WELL. 2966 01:59:12,560 --> 01:59:13,920 >>I'LL ADD ONE OF THE WAYS 2967 01:59:13,920 --> 01:59:16,120 AROUND THIS IN SOME OF OUR WORK 2968 01:59:16,120 --> 01:59:19,560 IS TO DO MIXED METHODS RESEARCH 2969 01:59:19,560 --> 01:59:21,480 AND BY THAT I MEAN THE TIME TO 2970 01:59:21,480 --> 01:59:23,560 DO QUALITATIVE INTERVIEWS AND TO 2971 01:59:23,560 --> 01:59:31,000 GIVE A VOICE TO THE USER AND 2972 01:59:31,000 --> 01:59:33,360 THERE'S TENSION BETWEEN 2973 01:59:33,360 --> 01:59:34,360 GENERALIZABLE DATA TO GUIDE 2974 01:59:34,360 --> 01:59:35,720 POLICY DECISIONS AND WHERE WE 2975 01:59:35,720 --> 01:59:37,280 DON'T HAVE A REAL SENSE OF WHAT 2976 01:59:37,280 --> 01:59:44,080 THAT MEANT IN PEOPLE'S LIVES. 2977 01:59:44,080 --> 01:59:44,600 >>THANK YOU. 2978 01:59:44,600 --> 01:59:45,840 I WANTED TO THANK EVERYONE. 2979 01:59:45,840 --> 01:59:49,720 OUR PRESENTERS, OUR PANELISTS 2980 01:59:49,720 --> 01:59:52,040 AND EVERYONE WHO ASKED SUCH 2981 01:59:52,040 --> 01:59:54,440 THOUGHTFUL QUESTIONS FOR YOUR 2982 01:59:54,440 --> 01:59:55,160 PARTICIPATION IN OUR FIRST 2983 01:59:55,160 --> 01:59:55,480 SESSION TODAY. 2984 01:59:55,480 --> 02:00:00,680 THANK YOU VERY MUCH. 2985 02:00:00,680 --> 02:00:02,480 >>WONDERFUL TO SEE ALL THE 2986 02:00:02,480 --> 02:00:04,800 CLAPS ON THE SCREEN. 2987 02:00:04,800 --> 02:00:07,360 THANK YOU SO MUCH, SESSION 1, 2988 02:00:07,360 --> 02:00:09,080 CO-CHAIRS, PANELISTS AND 2989 02:00:09,080 --> 02:00:09,400 PRESENTERS. 2990 02:00:09,400 --> 02:00:12,040 WE'RE NOW GOING TO TRANSITION TO 2991 02:00:12,040 --> 02:00:13,880 AN APPROXIMATELY 45-MINUTE BREAK 2992 02:00:13,880 --> 02:00:16,680 AND RECONVENE THE SUMMIT WITH 2993 02:00:16,680 --> 02:00:18,880 OUR NEXT SCIENTIFIC SESSION AT 2994 02:00:18,880 --> 02:00:21,800 1:45 P.M. EASTERN STANDARD TIME. 2995 02:00:21,800 --> 02:00:30,280 THANK YOU ALL AND SEE YOU THEN. 2996 02:00:30,280 --> 02:00:31,040 >>WELCOME BACK TO THE DEMENTIA 2997 02:00:31,040 --> 02:00:35,600 CARE SUMMIT AND THANK YOU TO THE 2998 02:00:35,600 --> 02:00:36,560 MORNING PARTICIPANTS. 2999 02:00:36,560 --> 02:00:39,760 WE WELCOME YOUR COMMENTS DURING 3000 02:00:39,760 --> 02:00:40,520 THE Q&A PORTION. 3001 02:00:40,520 --> 02:00:43,000 I AM NOW PLEASED TO WELCOME 3002 02:00:43,000 --> 02:00:47,120 DR. LEWIS MEDINA AND DR. LUKE 3003 02:00:47,120 --> 02:00:49,120 STOECKEL CO-CHAIRS OF THE IMPACT 3004 02:00:49,120 --> 02:00:50,320 OF DETENTION AND DIAGNOSIS ON 3005 02:00:50,320 --> 02:00:57,400 INDIVIDUALS AND CARE PARTNERS. 3006 02:00:57,400 --> 02:01:00,080 >>I'M VERY EXCITED TO START 3007 02:01:00,080 --> 02:01:05,360 THIS SESSION ESPECIALLY AFTER 3008 02:01:05,360 --> 02:01:06,160 HEARING THAT WONDERFUL FIRST 3009 02:01:06,160 --> 02:01:09,160 SESSION WHICH I THINK SET THE 3010 02:01:09,160 --> 02:01:12,800 STAGE NICELY FOR TODAY. 3011 02:01:12,800 --> 02:01:20,840 I'M CO-CHAIR WITH LUKE STOECKEL. 3012 02:01:20,840 --> 02:01:22,320 WE'LL BE ADDRESSING APPROACHES 3013 02:01:22,320 --> 02:01:24,160 TO EARLY AND EQUITABLE DETECTION 3014 02:01:24,160 --> 02:01:26,520 OF DEMENTIA AS AN ENTRY TO 3015 02:01:26,520 --> 02:01:27,680 DEMENTIA CARE BUILDING OFF THE 3016 02:01:27,680 --> 02:01:30,440 INSTRUMENTS AND PROCEDURES THAT 3017 02:01:30,440 --> 02:01:32,480 WERE DESCRIBED IN SESSION 1. 3018 02:01:32,480 --> 02:01:33,680 WE'LL ALSO CONSIDER CONTEXT. 3019 02:01:33,680 --> 02:01:36,280 AND I MEAN LARGELY SOCIAL, 3020 02:01:36,280 --> 02:01:40,080 ECONOMIC AND INSTITUTIONAL 3021 02:01:40,080 --> 02:01:43,440 BARRIERS TO AND FACILITATORS OF 3022 02:01:43,440 --> 02:01:44,920 DIAGNOSIS WITHIN CARE SETTINGS 3023 02:01:44,920 --> 02:01:47,520 INCLUDING PRIMARY CARE AND WILL 3024 02:01:47,520 --> 02:01:48,840 PROBABLY BE REFERENCING PRIMARY 3025 02:01:48,840 --> 02:01:52,120 CARE MORE BROADLY AND IN THE 3026 02:01:52,120 --> 02:01:53,560 CONTEXT OF MEDICARE ANNUAL 3027 02:01:53,560 --> 02:01:54,240 WELLNESS VISITS. 3028 02:01:54,240 --> 02:01:54,920 RESEARCH PRESENTATIONS WILL 3029 02:01:54,920 --> 02:01:58,400 CONSIDER THE IMPACT OF DETECTION 3030 02:01:58,400 --> 02:02:00,800 AND DIAGNOSIS ON INDIVIDUALS AND 3031 02:02:00,800 --> 02:02:02,120 FAMILIES ACROSS DIVERSE CONTEXT 3032 02:02:02,120 --> 02:02:03,640 AND BACKGROUNDS AND WE'LL HEAR A 3033 02:02:03,640 --> 02:02:04,440 BIT OF THAT THROUGHOUT ALL OF 3034 02:02:04,440 --> 02:02:10,880 OUR PRESENTATIONS. 3035 02:02:10,880 --> 02:02:12,920 IN ORDER TO HELP FRAME WHO OUR 3036 02:02:12,920 --> 02:02:15,920 SPEAKERS WILL BE TALKING ABOUT, 3037 02:02:15,920 --> 02:02:20,120 WE'LL HIGHLIGHT BENEFIT TO EARLY 3038 02:02:20,120 --> 02:02:21,400 DEMENTIA DIAGNOSES AND MOST 3039 02:02:21,400 --> 02:02:24,680 DEMENTIA CASES REMAIN 3040 02:02:24,680 --> 02:02:27,400 UNDIAGNOSED EARLY AS WILL BE 3041 02:02:27,400 --> 02:02:29,400 DESCRIBED AND THIS UNDER 3042 02:02:29,400 --> 02:02:31,720 DIAGNOSIS IS MORE COMMON IN 3043 02:02:31,720 --> 02:02:32,840 CERTAIN GROUPS. 3044 02:02:32,840 --> 02:02:35,640 THE RESULTS OF THESE UNDER 3045 02:02:35,640 --> 02:02:39,160 DIAGNOSES LEAD TO DISPARITIES IN 3046 02:02:39,160 --> 02:02:42,880 CARE, SERVICES RECEIVED AND USED 3047 02:02:42,880 --> 02:02:45,080 AND SURVIVAL. 3048 02:02:45,080 --> 02:02:46,880 DR. SHAH WILL HIGHLIGHT HOW 3049 02:02:46,880 --> 02:02:49,200 THERE'S A NEED FOR IMPROVED 3050 02:02:49,200 --> 02:02:52,280 TOOLS AND RISK MODELS ESPECIALLY 3051 02:02:52,280 --> 02:02:59,880 IN PRIMARY CARE. 3052 02:02:59,880 --> 02:03:02,240 DR. McCREEDY WILL TALK ABOUT 3053 02:03:02,240 --> 02:03:04,560 ACCESSING CARE AND HOW THE 3054 02:03:04,560 --> 02:03:05,840 DEVELOPMENT AND VALIDATION OF 3055 02:03:05,840 --> 02:03:10,080 TOOLS AND ALGORITHMS IS KEY TO 3056 02:03:10,080 --> 02:03:11,920 ADDRESSING WHAT ACCOUNTS FOR 3057 02:03:11,920 --> 02:03:12,480 DISPARITIES IN DIAGNOSIS IN 3058 02:03:12,480 --> 02:03:18,960 CARE. 3059 02:03:18,960 --> 02:03:23,760 ARE THREE SPEAKER DR. SHAH FROM 3060 02:03:23,760 --> 02:03:26,960 RUSH UNIVERSITY AND DR. McCREEDY 3061 02:03:26,960 --> 02:03:29,840 FROM BROWN UNIVERSITY AND 3062 02:03:29,840 --> 02:03:30,440 DR. DRABO FROM JOHNS HOPKINS 3063 02:03:30,440 --> 02:03:37,160 UNIVERSITY. 3064 02:03:37,160 --> 02:03:38,480 >>DR. SHAH? 3065 02:03:38,480 --> 02:03:39,960 >>I APPRECIATE THE OPPORTUNITY 3066 02:03:39,960 --> 02:03:41,840 TO BE HERE TO TALK ABOUT RISK 3067 02:03:41,840 --> 02:03:42,680 PREDICTION OF ALZHEIMER'S 3068 02:03:42,680 --> 02:03:45,440 DISEASE AND RELATED DEMENTIAS IN 3069 02:03:45,440 --> 02:03:49,480 PRIMARY CARE SETTINGS. 3070 02:03:49,480 --> 02:03:51,000 THESE ARE MY DISCLOSURES. 3071 02:03:51,000 --> 02:03:56,120 IF WE CAN GO TO THE NEXT SLIDE. 3072 02:03:56,120 --> 02:03:58,720 AS A PROFESSOR OF FAMILY AND 3073 02:03:58,720 --> 02:04:02,040 PREVENTIVE MEDICINE AND THE RUSH 3074 02:04:02,040 --> 02:04:05,120 ALZHEIMER'S DISEASE CENTER IN 3075 02:04:05,120 --> 02:04:09,200 CHICAGO ILLINOIS I THOUGHT I'D 3076 02:04:09,200 --> 02:04:13,400 TALK ABOUT WHAT WE KNOW ABOUT 3077 02:04:13,400 --> 02:04:15,080 ADRD RISK PREVENTION AND PRIMARY 3078 02:04:15,080 --> 02:04:16,240 CARE. 3079 02:04:16,240 --> 02:04:17,840 WHAT WE DON'T KNOW THAT WE 3080 02:04:17,840 --> 02:04:20,640 SHOULD AND PROMISING AND 3081 02:04:20,640 --> 02:04:21,240 INNOVATIVE OPPORTUNITIES FOR 3082 02:04:21,240 --> 02:04:23,320 FUTURE RESEARCH AND THE 3083 02:04:23,320 --> 02:04:24,120 RESOURCES, INFRASTRUCTURE AND 3084 02:04:24,120 --> 02:04:26,520 DATA THAT THE FIELD NEEDS TO BE 3085 02:04:26,520 --> 02:04:28,760 SUCCESSFUL IN ADVANCING FUTURE 3086 02:04:28,760 --> 02:04:29,600 RESEARCH ON RISK PREDICTION AND 3087 02:04:29,600 --> 02:04:35,400 PRIMARY CARE. 3088 02:04:35,400 --> 02:04:37,960 WHY SHOULD WE TALK ABOUT RISK 3089 02:04:37,960 --> 02:04:38,960 PREDICTION IN PRIMARY CARE 3090 02:04:38,960 --> 02:04:41,440 SETTINGS FOR ADRD. 3091 02:04:41,440 --> 02:04:45,560 SOME OF IT HAS TO DO WITH OUR 3092 02:04:45,560 --> 02:04:46,200 DEMOGRAPHICS. 3093 02:04:46,200 --> 02:04:48,000 WHILE YOUNGER INDIVIDUALS CAN 3094 02:04:48,000 --> 02:04:52,120 DEVELOP AND ARE AT RISK FOR 3095 02:04:52,120 --> 02:04:54,280 ALZHEIMER'S DISEASE AND RELATED 3096 02:04:54,280 --> 02:04:54,800 DEMENTIAS. 3097 02:04:54,800 --> 02:04:59,600 THE MAJORITY OF PEOPLE WHO 3098 02:04:59,600 --> 02:05:01,720 EXPERIENCE DIAGNOSIS AND 3099 02:05:01,720 --> 02:05:05,040 SYMPTOMS OF ALZHEIMER'S DISEASE 3100 02:05:05,040 --> 02:05:08,520 ARE OVER 65 AND WE HAD 56.1 3101 02:05:08,520 --> 02:05:11,160 MILLION OVER AGE 65 AND WE 3102 02:05:11,160 --> 02:05:15,480 ANTICIPATE THAT TO GROW TO 94.7 3103 02:05:15,480 --> 02:05:21,120 MILLION IN THE NEXT 40 YEARS. 3104 02:05:21,120 --> 02:05:23,960 WHAT WE THINK ABOUT BASED ON A 3105 02:05:23,960 --> 02:05:25,160 USEFUL TOOL DEVELOPED BY THE 3106 02:05:25,160 --> 02:05:27,560 U.S. PREVENTIVE SERVICES TASK 3107 02:05:27,560 --> 02:05:30,280 FORCE IS THE ANALYTICAL 3108 02:05:30,280 --> 02:05:32,560 FRAMEWORK WHEN THEY MAKE 3109 02:05:32,560 --> 02:05:34,080 RECOMMENDATIONS ABOUT WHAT TO DO 3110 02:05:34,080 --> 02:05:35,200 AS FAR AS SCREENING INDIVIDUALS 3111 02:05:35,200 --> 02:05:37,520 THAT ARE ASYMPTOMATIC FOR A 3112 02:05:37,520 --> 02:05:42,600 CONDITION OF PUBLIC HEALTH 3113 02:05:42,600 --> 02:05:49,200 IMPORTANCE AND THINKING THROUGH 3114 02:05:49,200 --> 02:05:51,880 THE DIAGNOSTIC WORKUP AND 3115 02:05:51,880 --> 02:05:53,840 MANAGEMENT PROGRAM AND THE CARE 3116 02:05:53,840 --> 02:05:55,280 PARTNER AND OTHER SOCIETAL 3117 02:05:55,280 --> 02:05:55,720 OUTCOMES. 3118 02:05:55,720 --> 02:05:57,200 WHAT I'LL FOCUS ON IS WHAT 3119 02:05:57,200 --> 02:06:02,440 HAPPENS BEFORE WE HIT THIS 3120 02:06:02,440 --> 02:06:09,040 PIPELINE THIS WAS PART OF A 3121 02:06:09,040 --> 02:06:09,960 REVIEW TO DECIDE WHETHER WE 3122 02:06:09,960 --> 02:06:12,920 SHOULD BE SCREENING ALL ADULTS 3123 02:06:12,920 --> 02:06:15,560 COMMUNITY DWELLING OVER 65 WHO 3124 02:06:15,560 --> 02:06:17,120 DON'T HAVE A DIAGNOSIS OF 3125 02:06:17,120 --> 02:06:18,960 DEMENTIA AND IDENTIFY WHO HAS 3126 02:06:18,960 --> 02:06:26,920 DEMENTIA IN CASE FINDING. 3127 02:06:26,920 --> 02:06:30,480 I THINK OF THIS AS IN COLORECTAL 3128 02:06:30,480 --> 02:06:31,280 CANCER SCREENING. 3129 02:06:31,280 --> 02:06:33,440 WE COULD SCREEN THE OVER 50 3130 02:06:33,440 --> 02:06:38,320 MILLION PEOPLE OVER 65 SAY ON AN 3131 02:06:38,320 --> 02:06:40,040 YEARLY BASIS ON AN ANNUAL 3132 02:06:40,040 --> 02:06:43,320 WELLNESS VISIT BUT THAT WOULD BE 3133 02:06:43,320 --> 02:06:46,400 QUITE A LOT OF WORK WITH THE 3134 02:06:46,400 --> 02:06:48,440 UNIVERSAL SCREENING APPROACH AND 3135 02:06:48,440 --> 02:06:49,520 A CONDITION THAT CAN SOMETIMES 3136 02:06:49,520 --> 02:06:57,040 TAKE A WHILE TO MANIFEST, 3137 02:06:57,040 --> 02:06:58,000 IDENTIFYING WHO ARE IN THE 3138 02:06:58,000 --> 02:06:59,440 POPULATION THAT AREN'T SHOWING 3139 02:06:59,440 --> 02:07:00,960 SIGNS AND SYMPTOMS SHOULD WE 3140 02:07:00,960 --> 02:07:03,240 SCREEN BASED ON A RISK-BASED 3141 02:07:03,240 --> 02:07:03,520 APPROACH. 3142 02:07:03,520 --> 02:07:06,360 DO THAT THE A DIFFERENT 3143 02:07:06,360 --> 02:07:09,360 INTERVALS AND FROM THE GROUP AT 3144 02:07:09,360 --> 02:07:11,760 AT HIGHER RISK HAVE THEM GO 3145 02:07:11,760 --> 02:07:14,800 THROUGH THE PIPELINE WHERE THEY 3146 02:07:14,800 --> 02:07:17,480 GET INVOLVED IN A MORE CARE AND 3147 02:07:17,480 --> 02:07:19,960 SUPPORT SERVICES FOR DEMENTIA 3148 02:07:19,960 --> 02:07:25,440 AND TREATMENT AND DIAGNOSIS. 3149 02:07:25,440 --> 02:07:27,840 WHAT DO WE KNOW ABOUT RISK 3150 02:07:27,840 --> 02:07:29,360 PREDICTION IN PRIMARY CARE 3151 02:07:29,360 --> 02:07:30,400 SETTINGS? 3152 02:07:30,400 --> 02:07:34,200 >>THERE WAS A NICE SYSTEMATIC 3153 02:07:34,200 --> 02:07:36,120 REVIEW OF RISK PREDICTION MODELS 3154 02:07:36,120 --> 02:07:38,520 IN TOLD FOR ALL DEMENTIAS DONE 3155 02:07:38,520 --> 02:07:42,160 IN 2019 AND OUT OF THE OVER30 3156 02:07:42,160 --> 02:07:43,880 STUDIES THAT WERE FOUND ONLY 3157 02:07:43,880 --> 02:07:45,880 THREE HAD SOME WORK THAT WAS 3158 02:07:45,880 --> 02:07:50,760 DONE IN A PRIMARY CARE SETTING. 3159 02:07:50,760 --> 02:07:53,080 ONLY ONE CALLED THE TOOL 3160 02:07:53,080 --> 02:07:55,480 DEVELOPED BY BARNES IN 2014 HAD 3161 02:07:55,480 --> 02:07:57,760 DEVELOPMENT AND VALIDATION AS A 3162 02:07:57,760 --> 02:07:59,960 SCREENING INDICATOR IN PRIMARY 3163 02:07:59,960 --> 02:08:06,120 CARE SETTINGS. 3164 02:08:06,120 --> 02:08:07,880 TO SHOW YOU THE DEMENTIA 3165 02:08:07,880 --> 02:08:09,480 SCREENING INDICATOR IN THE 2014 3166 02:08:09,480 --> 02:08:11,440 PAPER, THE CONCEPT WAS TO BE 3167 02:08:11,440 --> 02:08:15,200 ABLE TO IDENTIFY SEVEN QUESTIONS 3168 02:08:15,200 --> 02:08:19,520 OF THINGS SUCH AS YEARS, 3169 02:08:19,520 --> 02:08:21,960 EDUCATION, DIABETES RISK, 3170 02:08:21,960 --> 02:08:23,320 STROKE, DIFFICULTY MANAGING 3171 02:08:23,320 --> 02:08:24,240 MONEY AND POTENTIAL OTHER 3172 02:08:24,240 --> 02:08:25,480 MEDICATIONS PEOPLE TAKE 3173 02:08:25,480 --> 02:08:27,280 ASSIGNING THE SCORE TO THEM 3174 02:08:27,280 --> 02:08:28,640 BASED ON A RISK PREDICTION MODEL 3175 02:08:28,640 --> 02:08:31,560 AND IF THE SCORE WAS ABOVE 22, 3176 02:08:31,560 --> 02:08:33,800 THAT PERSON WAS AT HIGHER RISK 3177 02:08:33,800 --> 02:08:36,560 IN A PRIMARY CARE SETTING OF 3178 02:08:36,560 --> 02:08:38,000 DEVELOPING A DEMENTIA. 3179 02:08:38,000 --> 02:08:40,440 ON THE RIGHT THEY END UP SHOWING 3180 02:08:40,440 --> 02:08:42,840 THAT IN FOUR DIFFERENT 3181 02:08:42,840 --> 02:08:44,280 COMMUNITY-BASED AND THE 3182 02:08:44,280 --> 02:08:48,040 POPULATION-BASED COHORTS, THE 3183 02:08:48,040 --> 02:08:49,400 LOWEST LINE AS FAR AS RISK FOR 3184 02:08:49,400 --> 02:08:51,760 DEVELOPING A DEMENTIA WITHIN SIX 3185 02:08:51,760 --> 02:08:55,000 YEARS WAS THE GROUP THAT SCORED 3186 02:08:55,000 --> 02:09:01,160 BELOW 22 ON THE SCALE. 3187 02:09:01,160 --> 02:09:07,040 THEY WERE BETWEEN 65 AND 79 AND 3188 02:09:07,040 --> 02:09:12,920 THE LINE WITH THE DASHES SHOWS 3189 02:09:12,920 --> 02:09:14,600 THOSE SCREENED WITH THE TOOL 3190 02:09:14,600 --> 02:09:16,200 HIRE THAN AND HAD AN ELEVATED 3191 02:09:16,200 --> 02:09:17,600 RISK TO SOMEBODY WITH NORMAL 3192 02:09:17,600 --> 02:09:21,080 RISK FACTORS AND ABOVE AGE 80. 3193 02:09:21,080 --> 02:09:23,920 THEY WERE ABLE TO SEE THE 3194 02:09:23,920 --> 02:09:25,880 CALIBRATION OF RISK BASED ON THE 3195 02:09:25,880 --> 02:09:33,120 SCALE IN FOUR DIFFERENT COHORTS. 3196 02:09:33,120 --> 02:09:35,360 SO WHAT DON'T WE KNOW THAT WE 3197 02:09:35,360 --> 02:09:35,680 SHOULD? 3198 02:09:35,680 --> 02:09:37,440 LET ME GO THROUGH A COUPLE KEY 3199 02:09:37,440 --> 02:09:38,000 POINTS HERE? 3200 02:09:38,000 --> 02:09:40,120 THE FIRST AS WE SHOWED WITH THE 3201 02:09:40,120 --> 02:09:41,720 SYSTEMATIC REVIEW, THERE'S 3202 02:09:41,720 --> 02:09:44,200 FAIRLY FEW VALIDATED LATE LIFE 3203 02:09:44,200 --> 02:09:46,800 RISK ASSESSMENT TOOLS IN PRIMARY 3204 02:09:46,800 --> 02:09:47,880 CARE ESPECIALLY ONES IN THE 3205 02:09:47,880 --> 02:09:49,520 PUBLIC DOMAIN AND COULD BE USED 3206 02:09:49,520 --> 02:09:51,440 IN CLINICAL SETTINGS. 3207 02:09:51,440 --> 02:09:54,400 WHILE WE ACCEPT IN THE FIELD OF 3208 02:09:54,400 --> 02:09:56,920 MEDICINE STATISTICS AROUND HOW 3209 02:09:56,920 --> 02:09:58,760 WELL A RISK MODEL DOES WITH AN 3210 02:09:58,760 --> 02:10:01,680 AREA UNDER THE CURVE OF .75 OR 3211 02:10:01,680 --> 02:10:04,120 ABOVE, WE NEED TO GET THEM TO A 3212 02:10:04,120 --> 02:10:10,320 HIGHER LEVEL OF BEING ABLE TO 3213 02:10:10,320 --> 02:10:12,520 DIFFERENTIATE BETWEEN GROUPS SO 3214 02:10:12,520 --> 02:10:13,960 WE DON'T RUN INTO FALSE 3215 02:10:13,960 --> 02:10:15,720 POSITIVES AND NEGATIVES. 3216 02:10:15,720 --> 02:10:17,200 WE HAVE A HARD TIME COMPARING 3217 02:10:17,200 --> 02:10:19,800 THE STUDIES IN THE SYSTEMATIC 3218 02:10:19,800 --> 02:10:22,840 REVIEW BECAUSE THEY ALL REPORT 3219 02:10:22,840 --> 02:10:24,840 THEIR INFORMATION HOW THEY GO 3220 02:10:24,840 --> 02:10:26,640 ABOUT VALIDATION IN DIFFERENT 3221 02:10:26,640 --> 02:10:31,080 WAYS AND DON'T HAVE A GOLD 3222 02:10:31,080 --> 02:10:32,640 STANDARD DATA SET TO COMPARE 3223 02:10:32,640 --> 02:10:34,920 MODELS AND IDENTIFY MODEL ARE 3224 02:10:34,920 --> 02:10:37,600 BETTER AND LEAD TO THE DESIGN OF 3225 02:10:37,600 --> 02:10:38,360 CLINICAL TRIALS TO TEST 3226 02:10:38,360 --> 02:10:39,520 DIFFERENT MODELS IN DIVERSE 3227 02:10:39,520 --> 02:10:42,360 PRIMARY CARE SETTINGS. 3228 02:10:42,360 --> 02:10:44,280 AND FINALLY WE DO THINGS ONE AT 3229 02:10:44,280 --> 02:10:45,960 A TIME WITH A SURVEY OR 3230 02:10:45,960 --> 02:10:48,680 DATA-BASED METHODS BUT HAVE TO 3231 02:10:48,680 --> 02:10:50,280 CONSIDER COMBINATION MECHANISMS 3232 02:10:50,280 --> 02:10:58,080 INCLUDING BLOOD AND BIO MARKERS. 3233 02:10:58,080 --> 02:10:58,720 SO WHAT ARE OPPORTUNITIES FOR 3234 02:10:58,720 --> 02:11:03,240 FUTURE RESEARCH? 3235 02:11:03,240 --> 02:11:05,840 I THINK WHAT WE'RE STARTING TO 3236 02:11:05,840 --> 02:11:07,920 SEE IN 2022 AND 2023 IS 3237 02:11:07,920 --> 02:11:11,080 PUBLICATIONS OF LOOKING AT DATA 3238 02:11:11,080 --> 02:11:14,000 THAT'S ELECTRONICALLY COLLECTED 3239 02:11:14,000 --> 02:11:15,320 IN THE ELECTRONIC HEALTH RECORD 3240 02:11:15,320 --> 02:11:18,760 TO BE ABLE TO VALIDATE ACROSS 3241 02:11:18,760 --> 02:11:19,400 MULTIPLE DIVERSE CLINICAL 3242 02:11:19,400 --> 02:11:22,600 SETTINGS OF TOOLS SIMILAR TO THE 3243 02:11:22,600 --> 02:11:25,200 BARNES TOOL CALLED E RADAR AND 3244 02:11:25,200 --> 02:11:26,480 HAVING GOOD PROPERTIES AND 3245 02:11:26,480 --> 02:11:33,040 FINDING OUT WHO MAYBE AT RISK 3246 02:11:33,040 --> 02:11:34,760 AND SAW ANOTHER PAPER BASED ON A 3247 02:11:34,760 --> 02:11:39,080 LARGE DATA SET IN FLORIDA FROM 3248 02:11:39,080 --> 02:11:41,640 THE P CORE MODEL THAT ENDED UP 3249 02:11:41,640 --> 02:11:42,760 FINDING GOOD PROPERTIES AS FAR 3250 02:11:42,760 --> 02:11:44,320 AS A RISK PREDICTION MODEL FROM 3251 02:11:44,320 --> 02:11:45,520 DATA ALREADY IN THE ELECTRONIC 3252 02:11:45,520 --> 02:11:51,160 HEALTH RECORD. 3253 02:11:51,160 --> 02:11:52,320 SO WHAT RESOURCES AND 3254 02:11:52,320 --> 02:11:53,600 INFRASTRUCTURE AND DATA WILL WE 3255 02:11:53,600 --> 02:11:55,240 NEED TO ADVANCE RISK PREDICTION 3256 02:11:55,240 --> 02:11:57,640 MODELS IN PRIMARY CARE SETTINGS? 3257 02:11:57,640 --> 02:12:01,080 THE FIRST THING I THINK WE HAVE 3258 02:12:01,080 --> 02:12:04,000 TO DO IS REFRAME HOW WE VIEW 3259 02:12:04,000 --> 02:12:05,280 PRIMARY CARE. 3260 02:12:05,280 --> 02:12:06,640 IN MANY WAYS PEOPLE THINK OF 3261 02:12:06,640 --> 02:12:08,400 PRIMARY CARE AS A PLACE. 3262 02:12:08,400 --> 02:12:10,120 THE IMAGE OF A PICTURE OF A 3263 02:12:10,120 --> 02:12:12,400 BUILDING OR A CLINIC AS WHERE 3264 02:12:12,400 --> 02:12:14,080 PRIMARY CARE IS DELIVERED. 3265 02:12:14,080 --> 02:12:15,920 BUT WHAT I'D LIKE TO MENTION IS 3266 02:12:15,920 --> 02:12:18,200 WE PROBABLY HAVE TO THINK OF IT 3267 02:12:18,200 --> 02:12:19,800 AS A MIND SET. 3268 02:12:19,800 --> 02:12:20,920 IT'S ABOUT HIGH QUALITY PRIMARY 3269 02:12:20,920 --> 02:12:22,720 CARE THAT TAKES THE WHOLE PERSON 3270 02:12:22,720 --> 02:12:25,240 INTO ACCOUNT ALONG WITH THEIR 3271 02:12:25,240 --> 02:12:27,640 CAREGIVERS TO SUSTAIN HEALTH AND 3272 02:12:27,640 --> 02:12:29,720 BECOMES PART OF THE LARGE ECO 3273 02:12:29,720 --> 02:12:32,920 SYSTEM WE'VE BEEN IDENTIFYING 3274 02:12:32,920 --> 02:12:36,240 AND WORKING ON CALLED DEMENTIA 3275 02:12:36,240 --> 02:12:39,560 FRIENDLY COMMUNITIES THROUGH 3276 02:12:39,560 --> 02:12:40,440 DEMENTIA CARE AND IT GETS US 3277 02:12:40,440 --> 02:12:44,760 BACK TO THE IDEA OF THE PRIOR 3278 02:12:44,760 --> 02:12:46,680 SUMMIT ABOUT THE IDEA OF USING 3279 02:12:46,680 --> 02:12:48,280 DATA FOR FITNESS AND BEING CLEAR 3280 02:12:48,280 --> 02:12:51,640 WE HAVE TO WORK IN A PARTICULAR 3281 02:12:51,640 --> 02:12:55,400 POPULATION SETTING AUDIENCE 3282 02:12:55,400 --> 02:13:05,600 RESOURCE. 3283 02:13:28,200 --> 02:13:29,000 THANK YOU FOR YOUR ATTENTION AND 3284 02:13:29,000 --> 02:13:30,160 TIME. 3285 02:13:30,160 --> 02:13:30,560 I APPRECIATE IT. 3286 02:13:30,560 --> 02:13:30,600 3287 02:13:32,760 --> 02:13:36,840 >>NEXT UP WE HAVE DR. EL EN 3288 02:13:36,840 --> 02:13:37,200 McCREEDY. 3289 02:13:37,200 --> 02:13:47,440 TAKE IT AWAY. 3290 02:13:51,040 --> 02:13:52,400 >>THANK YOU. 3291 02:13:52,400 --> 02:13:53,880 FUL I'LL TALK ABOUT CHALLENGE TO 3292 02:13:53,880 --> 02:13:55,400 EQUITABLE IDENTIFICATION OF 3293 02:13:55,400 --> 02:13:57,040 PEOPLE LIVING WITH DEMENTIA FOR 3294 02:13:57,040 --> 02:14:00,320 PRAGMATIC CLINICAL TRIALS. 3295 02:14:00,320 --> 02:14:04,360 PEOPLE WITH ADRD OR DEMENTIA 3296 02:14:04,360 --> 02:14:05,480 ENROLLED IN RESEARCH STUDIES ARE 3297 02:14:05,480 --> 02:14:06,680 OF THE DIFFERENT THAN THE 3298 02:14:06,680 --> 02:14:07,600 POPULATION OF ALL PEOPLE LIVING 3299 02:14:07,600 --> 02:14:08,680 WITH DEMENTIA. 3300 02:14:08,680 --> 02:14:11,320 THE GOAL OF PRAGMATIC OR 3301 02:14:11,320 --> 02:14:13,280 REAL-WORLD TRIES IS TO ENROLL 3302 02:14:13,280 --> 02:14:15,160 PEOPLE WHO BETTER REPRESENT ALL 3303 02:14:15,160 --> 02:14:16,840 PEOPLE LIVING WITH DEMENTIA AND 3304 02:14:16,840 --> 02:14:17,280 THEIR CAREGIVERS WHEN 3305 02:14:17,280 --> 02:14:18,800 APPROPRIATE. 3306 02:14:18,800 --> 02:14:20,360 IN THIS PRESENTATION WE'LL TALK 3307 02:14:20,360 --> 02:14:23,880 ABOUT BARRIERS AND FACILITATORS 3308 02:14:23,880 --> 02:14:25,760 TO IDENTIFYING A REPRESENTATIVE 3309 02:14:25,760 --> 02:14:26,840 POPULATION FOR REAL-WORLD TRIALS 3310 02:14:26,840 --> 02:14:28,520 OF INTERVENTIONS FOR PERSONS 3311 02:14:28,520 --> 02:14:29,520 LIVING WITH DEMENTIA AND THEIR 3312 02:14:29,520 --> 02:14:35,200 CAREGIVERS. 3313 02:14:35,200 --> 02:14:37,720 SO WHAT DO WE KNOW? 3314 02:14:37,720 --> 02:14:40,200 WE KNOW PRAGMATIC TRIALS SHOULD 3315 02:14:40,200 --> 02:14:41,240 REPRESENT A POPULATION. 3316 02:14:41,240 --> 02:14:43,480 EARLIER YOU HEARD FROM DR. FAZIO 3317 02:14:43,480 --> 02:14:45,200 WHO TALKS ABOUT THE STAGES OF 3318 02:14:45,200 --> 02:14:46,280 BEHAVIORAL INTERVENTION 3319 02:14:46,280 --> 02:14:49,080 DEVELOPMENT AND TESTING. 3320 02:14:49,080 --> 02:14:50,920 ONE OF THE LATER STAGES IS 3321 02:14:50,920 --> 02:14:51,440 EFFECTIVENESS TRIALS. 3322 02:14:51,440 --> 02:15:01,960 THESE ARE CONDUCTED IN THE REAL 3323 02:15:02,480 --> 02:15:04,320 WORLD SETTING AND INCLUDE FORMAL 3324 02:15:04,320 --> 02:15:05,920 TESTING OF THE EFFECTIVE 3325 02:15:05,920 --> 02:15:08,800 INTERVENTION ON PATIENT-CENTERED 3326 02:15:08,800 --> 02:15:10,800 OUTCOMES AND USUAL CARE 3327 02:15:10,800 --> 02:15:14,080 PRACTITIONERS OR PEOPLE LIVING 3328 02:15:14,080 --> 02:15:14,680 WITH DEMENTIA OR CAREGIVERS 3329 02:15:14,680 --> 02:15:20,800 DELIVER THE INTERVENTION. 3330 02:15:20,800 --> 02:15:23,680 IN ORDER TO FIND PEOPLE LIVING 3331 02:15:23,680 --> 02:15:25,760 WITH DEMENTIA TO ENROLL IN THE 3332 02:15:25,760 --> 02:15:29,200 TRIALS WE RELY ON A FORMAL 3333 02:15:29,200 --> 02:15:30,480 DIAGNOSIS WITHIN THE ELECTRONIC 3334 02:15:30,480 --> 02:15:30,840 HEALTH RECORD. 3335 02:15:30,840 --> 02:15:35,880 WE ALSO MAY LOOK FOR ADRD OR 3336 02:15:35,880 --> 02:15:37,440 DEMENTIA DIAGNOSIS IN CLAIMS AND 3337 02:15:37,440 --> 02:15:39,560 IF WE'RE LUCKY WE MAY HAVE A 3338 02:15:39,560 --> 02:15:41,720 SYMPTOM SCREENER EMBEDDED IN THE 3339 02:15:41,720 --> 02:15:42,240 ELECTRONIC HEALTH RECORD. 3340 02:15:42,240 --> 02:15:43,760 YOU MAY HAVE HEARD OF THOSE 3341 02:15:43,760 --> 02:15:48,880 CALLS FOR THE MOCA OR USE A 3342 02:15:48,880 --> 02:15:51,720 COMBINATION OF CLOSED ITEMS LIKE 3343 02:15:51,720 --> 02:15:58,280 THE E RADAR AND OTHER TOOLS 3344 02:15:58,280 --> 02:16:00,840 DR. SHAH TALKED ABOUT AND 3345 02:16:00,840 --> 02:16:02,360 CURRENTLY THERE'S NEW EMPHASIS 3346 02:16:02,360 --> 02:16:04,680 ON LOOKING AT OPEN-TEXT 3347 02:16:04,680 --> 02:16:06,560 CLINICIAN NOTES WITHIN THE 3348 02:16:06,560 --> 02:16:07,680 RECORD. 3349 02:16:07,680 --> 02:16:08,680 AFTER A PHYSICIAN OR CLINICIAN 3350 02:16:08,680 --> 02:16:10,240 IS DONE SEEING A PATIENT THEY 3351 02:16:10,240 --> 02:16:13,200 MAY MAKE A GENERAL NOTE ABOUT 3352 02:16:13,200 --> 02:16:14,920 THEIR DISPOSITION. 3353 02:16:14,920 --> 02:16:15,600 THEY'RE HAVING TROUBLE 3354 02:16:15,600 --> 02:16:16,560 UNDERSTANDING THEIR MEDICATION 3355 02:16:16,560 --> 02:16:17,920 INSTRUCTIONS OR MAY MAKE A 3356 02:16:17,920 --> 02:16:20,880 COMMENT ABOUT ANOTHER DEMENTIA 3357 02:16:20,880 --> 02:16:22,320 RELATED SYMPTOM LIKE LOST 3358 02:16:22,320 --> 02:16:23,520 INTEREST IN DOING THINGS THEY 3359 02:16:23,520 --> 02:16:24,760 USED TO ENJOY. 3360 02:16:24,760 --> 02:16:30,760 BY MINING THE DATA WE CAN LOOK 3361 02:16:30,760 --> 02:16:34,400 AT PATTERNS THAT MIGHT INDICATE 3362 02:16:34,400 --> 02:16:36,200 SOMEONE HAS COGNITIVE IMPAIRMENT 3363 02:16:36,200 --> 02:16:37,880 OR DEMENTIA. 3364 02:16:37,880 --> 02:16:39,480 THERE'S TRADE-OFF BETWEEN USING 3365 02:16:39,480 --> 02:16:43,320 THE ADRD DIAGNOSIS OR SOME OF 3366 02:16:43,320 --> 02:16:45,960 THE NEWER METHODS THAT MINE THE 3367 02:16:45,960 --> 02:16:46,960 OPEN TEXT FIELD AND CLINICIAN 3368 02:16:46,960 --> 02:16:47,480 NOTES. 3369 02:16:47,480 --> 02:16:50,640 IF WE START WITH AN ADRD 3370 02:16:50,640 --> 02:16:52,720 DIAGNOSIS THIS MAY BE OUR LEAST 3371 02:16:52,720 --> 02:16:54,680 EQUITABLE OPTION. 3372 02:16:54,680 --> 02:16:56,200 WE KNOW MINORITIZED POPULATION 3373 02:16:56,200 --> 02:16:57,320 AND OTHER UNDER REPRESENTED 3374 02:16:57,320 --> 02:16:59,240 POPULATION LEAST LIKELY TO GET 3375 02:16:59,240 --> 02:17:01,640 AN ADRD DIAGNOSIS. 3376 02:17:01,640 --> 02:17:03,320 IF YOU'VE GONE THROUGH THE 3377 02:17:03,320 --> 02:17:05,560 PROCESS TO GET A DIAGNOSIS AND 3378 02:17:05,560 --> 02:17:06,480 INVOLVING SPECIALTY CARE. 3379 02:17:06,480 --> 02:17:08,240 THE PEOPLE WITHOUT ACCESS TO THE 3380 02:17:08,240 --> 02:17:09,760 CARE DON'T GET THE DIAGNOSIS. 3381 02:17:09,760 --> 02:17:11,760 BUT ON THE FLIP SIDE FOR 3382 02:17:11,760 --> 02:17:13,720 IDENTIFYING PEOPLE TO ENROLL IN 3383 02:17:13,720 --> 02:17:15,520 THE TRIAL YOU'RE PROBABLY LEAST 3384 02:17:15,520 --> 02:17:16,960 LIKELY TO IDENTIFY PEOPLE WHO 3385 02:17:16,960 --> 02:17:19,560 DON'T HAVE THE DISEASE OR WHO 3386 02:17:19,560 --> 02:17:21,960 ALSO DON'T KNOW THEY HAVE THE 3387 02:17:21,960 --> 02:17:22,840 DISEASE. 3388 02:17:22,840 --> 02:17:26,240 OFTEN IF WE USE ON THE FLIP SIDE 3389 02:17:26,240 --> 02:17:29,080 IF WE USE CLINICIAN NOTES TO 3390 02:17:29,080 --> 02:17:32,160 INDICATE POSSIBLE IMPAIRMENT, IT 3391 02:17:32,160 --> 02:17:33,760 MIGHT BE A MORE EQUITABLE 3392 02:17:33,760 --> 02:17:34,000 OPTION. 3393 02:17:34,000 --> 02:17:35,400 WE MIGHT IDENTIFY MORE PEOPLE 3394 02:17:35,400 --> 02:17:41,400 WHO HAVE LESS ACCESS TO 3395 02:17:41,400 --> 02:17:44,240 SPECIALTY CARE. 3396 02:17:44,240 --> 02:17:49,520 THAT TRADE IS THERE AND WE MIGHT 3397 02:17:49,520 --> 02:17:51,120 IDENTIFY PEOPLE WHO SYSTEMS ARE 3398 02:17:51,120 --> 02:17:52,560 CONSISTENT WITH COGNITIVE 3399 02:17:52,560 --> 02:17:54,480 IMPAIRMENT OR DEMENTIA BUT DON'T 3400 02:17:54,480 --> 02:17:56,360 KNOW THEY HAVE THE DISEASE. 3401 02:17:56,360 --> 02:17:58,760 WE NEED TO THINK OF OFFERING THE 3402 02:17:58,760 --> 02:18:01,360 INTERVENTION WITH THE POTENTIAL 3403 02:18:01,360 --> 02:18:05,280 BENEFIT TO THE POTENTIAL HARM OR 3404 02:18:05,280 --> 02:18:07,000 OF LEARNING THEY HAVE COGNITIVE 3405 02:18:07,000 --> 02:18:08,200 IMPAIRMENT OR DEMENTIA. 3406 02:18:08,200 --> 02:18:09,840 THERE'S TRADE-OFFS TO THINKING 3407 02:18:09,840 --> 02:18:14,200 HOW TO ENROLL PEOPLE USING 3408 02:18:14,200 --> 02:18:16,000 NATURALISTIC NON-TRADITIONAL 3409 02:18:16,000 --> 02:18:21,480 DIAGNOSTIC CODES. 3410 02:18:21,480 --> 02:18:25,280 I PUT EXTRA CIRCLES BECAUSE IT 3411 02:18:25,280 --> 02:18:26,560 INVOLVES HAVING ACCESS TO OUT 3412 02:18:26,560 --> 02:18:29,480 PATIENT CARE TO BE IDENTIFIED 3413 02:18:29,480 --> 02:18:34,520 AND THERE ARE INDEPENDENT 3414 02:18:34,520 --> 02:18:35,640 PROVIDERS WITHOUT COMPREHENSIVE 3415 02:18:35,640 --> 02:18:40,560 E.H.R.s AND WANT TO BE INCLUDED 3416 02:18:40,560 --> 02:18:43,640 AND FINALLY CAREGIVERS ARE 3417 02:18:43,640 --> 02:18:45,720 MISSING AND IF YOU WANTED TO 3418 02:18:45,720 --> 02:18:47,200 TARGET THEM IT'S HARD TO LOCATE 3419 02:18:47,200 --> 02:18:48,360 THEM AND TALKED ABOUT MAYBE 3420 02:18:48,360 --> 02:18:49,640 COMMUNITY BASED ORGANIZATIONS 3421 02:18:49,640 --> 02:18:57,120 FOR THAT PURPOSE. 3422 02:18:57,120 --> 02:18:58,840 MINORITIZED OPTION LESS LIKELY 3423 02:18:58,840 --> 02:19:01,960 TO BE INCLUDED IF BASED ON 3424 02:19:01,960 --> 02:19:03,720 DIAGNOSIS AND POSSIBLE CASES 3425 02:19:03,720 --> 02:19:05,360 INCREASES THE RISK OF 3426 02:19:05,360 --> 02:19:06,760 MISIDENTIFICATION OR IDENTIFYING 3427 02:19:06,760 --> 02:19:08,400 PEOPLE WHO DON'T KNOW THEY HAVE 3428 02:19:08,400 --> 02:19:10,480 THE DISEASE. 3429 02:19:10,480 --> 02:19:15,240 ALL ALGORITHMS DON'T HAVE ACCESS 3430 02:19:15,240 --> 02:19:17,600 TO OUT-PATIENT CARE. 3431 02:19:17,600 --> 02:19:18,280 WHAT SHOULD WE KNOW THAT WE 3432 02:19:18,280 --> 02:19:27,240 DON'T? 3433 02:19:27,240 --> 02:19:29,520 WE DON'T HAVE ENOUGH DATA TO 3434 02:19:29,520 --> 02:19:31,400 REPLICATE ALGORITHMS. 3435 02:19:31,400 --> 02:19:33,920 EXISTING ALGORITHMS ARE OFTEN IN 3436 02:19:33,920 --> 02:19:36,760 SPECIALIZED MEDICAL SETTINGS 3437 02:19:36,760 --> 02:19:39,320 UNDER REPRESENTING MINORITIZED 3438 02:19:39,320 --> 02:19:40,520 POPULATION AND NOT ENOUGH IS 3439 02:19:40,520 --> 02:19:44,440 NOBODY ABOUT THE VALIDITY IN 3440 02:19:44,440 --> 02:19:48,000 ALGORITHMS IN SETTINGS THAT 3441 02:19:48,000 --> 02:19:52,360 REPRESENT USUAL CARE. 3442 02:19:52,360 --> 02:19:54,320 WHAT ARE THE OPPORTUNITIES? 3443 02:19:54,320 --> 02:19:56,640 CREATING AND REPORTING 3444 02:19:56,640 --> 02:19:59,320 PHENOTYPIC ALGORITHMS HAVE BEEN 3445 02:19:59,320 --> 02:20:01,000 IDENTIFIED AND NOT WIDELY 3446 02:20:01,000 --> 02:20:01,800 ADOPTED YET. 3447 02:20:01,800 --> 02:20:03,520 SEVERAL REPOSITORIES EXIST AND 3448 02:20:03,520 --> 02:20:05,040 THE KNOWLEDGE BASE TO PROVIDE 3449 02:20:05,040 --> 02:20:07,240 DETAIL TO RESEARCHERS WHO WANT 3450 02:20:07,240 --> 02:20:10,040 TO REPLICATE VALIDATED 3451 02:20:10,040 --> 02:20:12,600 ALGORITHMS IN THEIR DATA AND 3452 02:20:12,600 --> 02:20:14,520 RAPID TECHNIQUES ARE BECOMING 3453 02:20:14,520 --> 02:20:16,400 MORE AVAILABLE ALLOWING 3454 02:20:16,400 --> 02:20:19,160 RESEARCHERS TO USE THE VALIDATED 3455 02:20:19,160 --> 02:20:20,160 ALGORITHMS AVAILABLE IN THE 3456 02:20:20,160 --> 02:20:22,200 KNOWLEDGE BASE TO TEST IN THEIR 3457 02:20:22,200 --> 02:20:23,240 OWN POPULATION PRIOR TO USING IT 3458 02:20:23,240 --> 02:20:24,240 FOR A STUDY. 3459 02:20:24,240 --> 02:20:25,280 THEY KNOW HOW WELL IT'S WORKING 3460 02:20:25,280 --> 02:20:30,400 IN THEIR DATA. 3461 02:20:30,400 --> 02:20:33,120 WHAT RESOURCES DO WE NEED? 3462 02:20:33,120 --> 02:20:36,000 ONE, WE NEED TO DEMOCRATIZE THE 3463 02:20:36,000 --> 02:20:38,240 USE OF EXISTING ALGORITHM AND 3464 02:20:38,240 --> 02:20:39,640 SUPPORT CRITERIA AND INVEST IN 3465 02:20:39,640 --> 02:20:41,520 DEVELOPMENT AND DISSEMINATION OF 3466 02:20:41,520 --> 02:20:42,800 RAPID VALIDATION TOOLS SO 3467 02:20:42,800 --> 02:20:46,360 TESTING WITHIN YOUR OWN DATA. 3468 02:20:46,360 --> 02:20:50,800 TWO, NEED TO INCORPORATE 3469 02:20:50,800 --> 02:20:51,720 UNSTRUCTURED DATA INTO 3470 02:20:51,720 --> 02:20:55,240 ALGORITHMS AND MONITOR THE 3471 02:20:55,240 --> 02:20:56,240 RELATIONSHIP BETWEEN MORE 3472 02:20:56,240 --> 02:20:58,440 UNSTRUCTURED DATA AND CRIN 3473 02:20:58,440 --> 02:21:00,760 COLLUSION OF MINORITIZED 3474 02:21:00,760 --> 02:21:01,760 POPULATIONS AND IS THERE BIAS 3475 02:21:01,760 --> 02:21:03,280 WITHIN THE TEXT. 3476 02:21:03,280 --> 02:21:05,160 IT'S IMPORTANT TO MONITOR WHAT'S 3477 02:21:05,160 --> 02:21:07,680 HAPPENING AS WE OPEN UP OUR 3478 02:21:07,680 --> 02:21:08,280 ALGORITHMS TO USING THIS TYPE OF 3479 02:21:08,280 --> 02:21:11,240 DATA. 3480 02:21:11,240 --> 02:21:13,320 WE NEED TO MONITOR THE ETHICAL 3481 02:21:13,320 --> 02:21:16,960 IMPLICATIONS AND IDENTIFYING 3482 02:21:16,960 --> 02:21:17,920 PEOPLE WHO DON'T KNOW THEY'RE 3483 02:21:17,920 --> 02:21:20,280 LIVING WITH DEMENTIA OR 3484 02:21:20,280 --> 02:21:21,800 COGNITIVE IMPAIRMENT. 3485 02:21:21,800 --> 02:21:26,680 THREE, REACH PEOPLE WITHOUT 3486 02:21:26,680 --> 02:21:28,480 ACCESS TO SPECIALTY CARE. 3487 02:21:28,480 --> 02:21:30,720 PEOPLE NOT IN THE E.H.R. 3488 02:21:30,720 --> 02:21:36,680 THAT'S THE HARDEST PART. 3489 02:21:36,680 --> 02:21:37,320 DR. GILMORE-BYKOVSKYI HAS NICE 3490 02:21:37,320 --> 02:21:40,440 WORK BUT WE HAVE TO THINK 3491 02:21:40,440 --> 02:21:41,080 OUTSIDE OF THAT. 3492 02:21:41,080 --> 02:21:42,960 DR. THOMAS HAS BEEN WORKING WITH 3493 02:21:42,960 --> 02:21:45,200 MEALS ON WHEELS TO IDENTIFY 3494 02:21:45,200 --> 02:21:46,320 PEOPLE IN THE COMMUNITY WHO MAY 3495 02:21:46,320 --> 02:21:47,680 BE LIVING WITH DEMENTIA. 3496 02:21:47,680 --> 02:21:51,520 THESE ARE EXCITING AVENUES FOR 3497 02:21:51,520 --> 02:21:54,080 FURTHER RESEARCH AND KEEP BETTER 3498 02:21:54,080 --> 02:21:55,760 TABS ON THE CAREGIVERS AND WE 3499 02:21:55,760 --> 02:21:56,880 NEED TO LEVERAGE MORE 3500 02:21:56,880 --> 02:21:58,080 COMMUNITY-BASED ORGANIZATIONS TO 3501 02:21:58,080 --> 02:21:59,480 IDENTIFY THE DIAD AND THE PERSON 3502 02:21:59,480 --> 02:22:03,320 LIVING WITH DEMENTIA AND THEIR 3503 02:22:03,320 --> 02:22:07,280 CAREGIVERS BECAUSE THE 3504 02:22:07,280 --> 02:22:08,640 CAREGIVERS IS ALMOST COMPLETELY 3505 02:22:08,640 --> 02:22:14,960 MISSING THE E.H.R. 3506 02:22:14,960 --> 02:22:16,720 THAT'S THE END OF MY 3507 02:22:16,720 --> 02:22:17,480 PRESENTATION, THANK YOU. 3508 02:22:17,480 --> 02:22:22,840 >>OUR NEXT SPEAKER IS 3509 02:22:22,840 --> 02:22:28,520 DR. EMANNUAL DRABO. 3510 02:22:28,520 --> 02:22:34,400 >>HOW TO FOR ALLOWING ME TO 3511 02:22:34,400 --> 02:22:36,720 TALK ABOUT THIS IMPORTANT TOPIC. 3512 02:22:36,720 --> 02:22:39,440 I'LL BEGIN BY FOLLOWING THE 3513 02:22:39,440 --> 02:22:43,280 FOOTSTEPS OF DR. SHAH AND 3514 02:22:43,280 --> 02:22:46,440 McCREEDY AND TRYING TO FRAME MY 3515 02:22:46,440 --> 02:22:48,160 PRESENTATION AROUND WHAT WE KNOW 3516 02:22:48,160 --> 02:22:50,920 ABOUT DEMENTIA DIAGNOSIS AND 3517 02:22:50,920 --> 02:22:51,760 POST-DIAGNOSIS CARE AND WHAT WE 3518 02:22:51,760 --> 02:22:54,280 DON'T KNOW THAT WE SHOULD AND 3519 02:22:54,280 --> 02:22:55,800 SOME PROMISING AND INNOVATIVE 3520 02:22:55,800 --> 02:22:56,360 OPPORTUNITIES FOR FUTURE 3521 02:22:56,360 --> 02:23:03,080 RESEARCH. 3522 02:23:03,080 --> 02:23:05,680 SO WHAT IS THE ISSUE HERE? 3523 02:23:05,680 --> 02:23:08,160 >>THERE'S MANY BENEFITS TO 3524 02:23:08,160 --> 02:23:09,640 DIAGNOSIS AS THE TALKS HAVE 3525 02:23:09,640 --> 02:23:10,240 ALLUDED TO. 3526 02:23:10,240 --> 02:23:13,040 FOR EXAMPLE, PROMOTING EARLY AND 3527 02:23:13,040 --> 02:23:15,080 OPTIMAL DISEASE MANAGEMENT OR 3528 02:23:15,080 --> 02:23:17,840 GAINING EARLY ACCESS TO 3529 02:23:17,840 --> 02:23:19,000 INFORMATION, APPROPRIATE 3530 02:23:19,000 --> 02:23:20,480 SERVICES AND RESOURCES. 3531 02:23:20,480 --> 02:23:23,800 AND THIS BENEFITS NOT ONLY THE 3532 02:23:23,800 --> 02:23:24,680 PATIENT BUT ALSO THE PERSON 3533 02:23:24,680 --> 02:23:29,960 LIVING WITH DEMENTIA AND THE 3534 02:23:29,960 --> 02:23:30,200 CAREGIVER. 3535 02:23:30,200 --> 02:23:33,240 ALSO IT ALLOWS ONE TO HAVE EARLY 3536 02:23:33,240 --> 02:23:35,720 DISCUSSIONS AROUND ADVANCED CARE 3537 02:23:35,720 --> 02:23:37,760 PLANNING AND FINALLY SOME 3538 02:23:37,760 --> 02:23:39,840 OPPORTUNITIES TO ENROLL IN 3539 02:23:39,840 --> 02:23:40,640 CLINICAL TRIALS AND BENEFIT FROM 3540 02:23:40,640 --> 02:23:45,640 EMERGING TREATMENTS. 3541 02:23:45,640 --> 02:23:47,280 UNFORTUNATELY, MOST DEMENTIA 3542 02:23:47,280 --> 02:23:50,640 CASES REMAIN UNDIAGNOSED EARLY. 3543 02:23:50,640 --> 02:23:59,120 AND WHY IS THAT HELP -- 3544 02:23:59,120 --> 02:23:59,360 HAPPENING? 3545 02:23:59,360 --> 02:24:00,520 WE THINK BECAUSE OF THE 3546 02:24:00,520 --> 02:24:05,600 SCREENING AND DIAGNOSES AND THE 3547 02:24:05,600 --> 02:24:07,360 PHARMACEUTICALS HAVE LIMITS AND 3548 02:24:07,360 --> 02:24:09,240 DRUGS ARE PRIMARILY LABELLED FOR 3549 02:24:09,240 --> 02:24:11,600 ALZHEIMER'S DISEASE AND THE MOST 3550 02:24:11,600 --> 02:24:14,200 PREVALENT DEMENTIA SUBTYPE BUT 3551 02:24:14,200 --> 02:24:15,800 NOT OTHER DEMENTIAS. 3552 02:24:15,800 --> 02:24:20,880 WE KNOW THE U.S. PREVENTIVE TASK 3553 02:24:20,880 --> 02:24:23,880 FORCES STATEMENT STEMS FROM 3554 02:24:23,880 --> 02:24:28,960 FINDING OF LIMITED EVIDENCE TO 3555 02:24:28,960 --> 02:24:31,480 RECOMMEND FOR SCREENING IN OLDER 3556 02:24:31,480 --> 02:24:41,600 ADULTS. 3557 02:24:41,960 --> 02:24:44,280 WHAT DO WE KNOW? 3558 02:24:44,280 --> 02:24:46,640 THERE'S MANY COMMUNITY-BASED AND 3559 02:24:46,640 --> 02:24:49,480 CORE STUDIES AND RESEARCH THAT 3560 02:24:49,480 --> 02:24:50,360 CONSISTENTLY SHOW EVIDENCE OF 3561 02:24:50,360 --> 02:24:53,040 RACIAL AND ETHNIC DISPARITIES IN 3562 02:24:53,040 --> 02:24:54,600 DEMENTIA RISK. 3563 02:24:54,600 --> 02:24:57,880 FOR EXAMPLE, USING DATA FROM 3564 02:24:57,880 --> 02:24:59,040 PARTICIPANTS IN THE HEALTH AND 3565 02:24:59,040 --> 02:25:01,160 RETIREMENT SURVEY LINKED TO 3566 02:25:01,160 --> 02:25:04,280 MEDICARE CLAIMS, MEDICARE AND 3567 02:25:04,280 --> 02:25:05,800 MEDICAID CLAIMS, COLLEAGUES HAVE 3568 02:25:05,800 --> 02:25:08,320 SHOWN BLACK ADULTS HAVE UP TO 3569 02:25:08,320 --> 02:25:11,600 TWOFOLD LIKELIHOOD OF DEVELOPING 3570 02:25:11,600 --> 02:25:14,480 DEMENTIA AS WHITES RESPECTIVE OF 3571 02:25:14,480 --> 02:25:20,640 THE OUTCOME AND DATA THEY USE. 3572 02:25:20,640 --> 02:25:25,080 THERE'S RECENT EVIDENCE IN A 3573 02:25:25,080 --> 02:25:27,960 STUDY THAT FIND BLACK AND 3574 02:25:27,960 --> 02:25:29,600 HISPANICS ARE TWICE AND FOUR 3575 02:25:29,600 --> 02:25:32,920 TIMES MORE LIKELY THAN WHITES TO 3576 02:25:32,920 --> 02:25:35,080 HAVE MILD COGNITIVE IMPAIRMENT 3577 02:25:35,080 --> 02:25:38,880 AND DEMENTIA DUE TO HIGHER 3578 02:25:38,880 --> 02:25:40,320 PREVALENCE OF VASCULAR RISK 3579 02:25:40,320 --> 02:25:45,080 FACTORS AND IN BLACKS AND WHITE 3580 02:25:45,080 --> 02:25:48,400 HYPERINTENSITY BURDEN WAS 3581 02:25:48,400 --> 02:25:49,440 ASSOCIATED WITH GREATER ODDS OF 3582 02:25:49,440 --> 02:25:55,600 DEMENTIA. 3583 02:25:55,600 --> 02:26:00,760 NOW, AGAIN, ANOTHER WAVE OF 3584 02:26:00,760 --> 02:26:03,160 STUDY FINDS THAT BLACKS AND 3585 02:26:03,160 --> 02:26:05,200 HISPANICS ARE 1.1 TO 1.6 TIMES 3586 02:26:05,200 --> 02:26:07,960 MORE LIKELY THAN WHITES TO HAVE 3587 02:26:07,960 --> 02:26:10,760 MISSED OR DELAYED CLINICAL 3588 02:26:10,760 --> 02:26:12,320 DEMENTIA DIAGNOSIS AND BLACKS 3589 02:26:12,320 --> 02:26:14,960 AND HISPANICS ARE LIKELY TO HAVE 3590 02:26:14,960 --> 02:26:17,240 MORE FUNCTIONAL LIMITATIONS BY 3591 02:26:17,240 --> 02:26:19,920 THE TIME OF DIAGNOSIS. 3592 02:26:19,920 --> 02:26:23,800 IN THE SAME LITERATURE WE SEE 3593 02:26:23,800 --> 02:26:26,200 SOME FINDINGS USING CMS DATA 3594 02:26:26,200 --> 02:26:31,040 REPORTING THAT ASIANS, HISPANICS 3595 02:26:31,040 --> 02:26:37,720 AND BLACKS ARE 0.5, 0.4 AND 0.3 3596 02:26:37,720 --> 02:26:42,080 TIMES LESS LIKELY THAN WHITES TO 3597 02:26:42,080 --> 02:26:47,720 RECEIVE TIMELY DIAGNOSIS. 3598 02:26:47,720 --> 02:26:52,600 NOT SHOWN IS DATA FROM THE 3599 02:26:52,600 --> 02:26:53,680 NATIONAL ALZHEIMER'S 3600 02:26:53,680 --> 02:26:56,040 COORDINATING CENTER FIND 3601 02:26:56,040 --> 02:26:57,600 DEMENTIA PREVALENCE WAS GREATER 3602 02:26:57,600 --> 02:27:03,920 IN WHITES THAN BLACKS SUGGESTING 3603 02:27:03,920 --> 02:27:05,760 UNDER DIAGNOSIS AMONG BLACKS. 3604 02:27:05,760 --> 02:27:07,080 WHEN WE LOOK AT THE 3605 02:27:07,080 --> 02:27:08,920 U.S. VETERANS POPULATION WE SEE 3606 02:27:08,920 --> 02:27:16,480 A DIFFERENT PATTERN. 3607 02:27:16,480 --> 02:27:17,720 THEY FIND DIAGNOSE RATES FOR 3608 02:27:17,720 --> 02:27:19,920 BLACKS AND HISPANICS COMPARED TO 3609 02:27:19,920 --> 02:27:22,320 AMERICAN INDIAN OR ALASKAN 3610 02:27:22,320 --> 02:27:25,920 NATIVES, ASIANS AND WHITES AND 3611 02:27:25,920 --> 02:27:27,520 BECAUSE MOST SEE THE AGE OF 3612 02:27:27,520 --> 02:27:30,600 ADJUSTED INCIDENT RATES ARE 3613 02:27:30,600 --> 02:27:32,000 HIGHEST FOR BLACKS AND HISPANIC 3614 02:27:32,000 --> 02:27:34,480 PARTICIPANTS WITH THE RATES 3615 02:27:34,480 --> 02:27:37,120 SIMILAR AMONG AMERICAN INDIAN OR 3616 02:27:37,120 --> 02:27:37,680 ALASKAN NATIVE PATIENTS AND 3617 02:27:37,680 --> 02:27:43,840 WHITE PARTICIPANTS. 3618 02:27:43,840 --> 02:27:45,880 THIS IS SOME OF MY OWN WORK 3619 02:27:45,880 --> 02:27:47,680 AROUND DIFFERENCES IN MEDICAL 3620 02:27:47,680 --> 02:27:50,520 CARE AND SERVICES THAT PEOPLE 3621 02:27:50,520 --> 02:27:52,200 LIVING WITH DEMENTIA ALSO 3622 02:27:52,200 --> 02:27:52,440 RECEIVE. 3623 02:27:52,440 --> 02:27:54,800 THERE'S A RACIAL AND ETHNIC 3624 02:27:54,800 --> 02:27:56,120 MINORITY POPULATIONS ARE LESS 3625 02:27:56,120 --> 02:27:59,480 LIKELY TO RECEIVE A 3626 02:27:59,480 --> 02:28:01,160 COMPREHENSIVE DIAGNOSIS 3627 02:28:01,160 --> 02:28:03,640 EVALUATION AND TREATMENT THAT 3628 02:28:03,640 --> 02:28:04,040 OPTIMIZE OUTCOMES. 3629 02:28:04,040 --> 02:28:06,640 SO ONE OF THE STUDIES WE 3630 02:28:06,640 --> 02:28:08,600 CONDUCTED WE FIND ONLY 36% OF 3631 02:28:08,600 --> 02:28:11,240 OLDER ADULTS ARE SEEN BY A 3632 02:28:11,240 --> 02:28:13,560 SPECIALIST WITHIN FIVE YEARS OF 3633 02:28:13,560 --> 02:28:16,040 A DIAGNOSIS AND THE USE OF 3634 02:28:16,040 --> 02:28:18,320 SPECIALIST CARE IS LOWER FOR 3635 02:28:18,320 --> 02:28:20,200 ASIANS AND HISPANICS COMPARED TO 3636 02:28:20,200 --> 02:28:21,920 WHITES AND BLACKS. 3637 02:28:21,920 --> 02:28:23,720 WE FIND INTERESTINGLY 3638 02:28:23,720 --> 02:28:28,520 UNSPECIFIED DIAGNOSIS IS COMMON 3639 02:28:28,520 --> 02:28:30,320 IN HIGHER DIAGNOSIS FOR 3640 02:28:30,320 --> 02:28:32,160 NON-DEMENTIA SPECIALISTS THAN 3641 02:28:32,160 --> 02:28:33,520 DEMENTIA SPECIALISTS SHOWING 3642 02:28:33,520 --> 02:28:37,000 THERE IS VALUE IN RECEIVING 3643 02:28:37,000 --> 02:28:39,560 SPECIALTY CARE BUT THE DISPA 3644 02:28:39,560 --> 02:28:42,280 DISPARITIES COULD HAVE PROFOUND 3645 02:28:42,280 --> 02:28:43,440 CONSEQUENCES IN TERMS OF THE 3646 02:28:43,440 --> 02:28:50,640 MANAGEMENT OF DISEASE. 3647 02:28:50,640 --> 02:28:56,400 ALSO ASIAN RECEIVE FEWER 3648 02:28:56,400 --> 02:28:57,200 DIAGNOSIS AND TESTING AND SO ON 3649 02:28:57,200 --> 02:29:01,720 AND SO FORTH. 3650 02:29:01,720 --> 02:29:03,400 THERE'S ANOTHER VEIN OF WORK 3651 02:29:03,400 --> 02:29:05,680 THAT SUGGESTS DISPARITIES IN USE 3652 02:29:05,680 --> 02:29:09,640 OF PHARMACEUTICAL TREATMENTS AND 3653 02:29:09,640 --> 02:29:11,960 HIGHEST USE OF PHARMACEUTICALS 3654 02:29:11,960 --> 02:29:15,240 AMONG FEMALES AND HISPANICS AND 3655 02:29:15,240 --> 02:29:16,920 WHITE MALES THAN BLACK MALES. 3656 02:29:16,920 --> 02:29:18,280 MINORITIES ARE SIGNIFICANTLY 3657 02:29:18,280 --> 02:29:24,480 LESS LIKELY THAN WHITES TO USE 3658 02:29:24,480 --> 02:29:28,880 MEDICATIONS WE ALSO SEE 3659 02:29:28,880 --> 02:29:29,600 DISPARITIES IN THE USE OF 3660 02:29:29,600 --> 02:29:31,320 PROGRAMS AT THE ENDS OF LIFE. 3661 02:29:31,320 --> 02:29:34,080 BLACKS WITH DEMENTIA HAS 9% 3662 02:29:34,080 --> 02:29:37,320 LOWER LIKELIHOOD OF ENROLLING IN 3663 02:29:37,320 --> 02:29:39,560 CARE AND MANAGEMENT AND WHITES 3664 02:29:39,560 --> 02:29:43,440 ALSO BLACK AND HISPANICS USELESS 3665 02:29:43,440 --> 02:29:46,200 HOSPICE BUT MORE PATIENT 3666 02:29:46,200 --> 02:29:49,280 SERVICES SO SIGNIFICANTLY 60% 3667 02:29:49,280 --> 02:29:53,040 HIGHER IN PATIENT EXPENDITURES 3668 02:29:53,040 --> 02:29:55,440 AS A RESULT OF THAT UNDER 3669 02:29:55,440 --> 02:30:01,920 UTILIZATION OF E.D. 3670 02:30:01,920 --> 02:30:03,520 WE SEE LOWER COMPLETION RATES OF 3671 02:30:03,520 --> 02:30:04,160 ADVANCED CARE PLANNING COMPARED 3672 02:30:04,160 --> 02:30:11,400 TO WHITES. 3673 02:30:11,400 --> 02:30:13,520 THERE'S DISPARITIES IN 3674 02:30:13,520 --> 02:30:15,160 POSTDIAGNOSIS SURVIVAL AND A 3675 02:30:15,160 --> 02:30:17,760 LOWER MORTALITY RATE FOR 3676 02:30:17,760 --> 02:30:19,640 HISPANICS AND BLACKS COMPARED TO 3677 02:30:19,640 --> 02:30:21,760 WHITES AND LOWER IN AMERICAN 3678 02:30:21,760 --> 02:30:24,320 INDIANS AND ALASKAN NATIVES AND 3679 02:30:24,320 --> 02:30:26,040 WHITES AND ADVANTAGES AMONG 3680 02:30:26,040 --> 02:30:27,400 WHITES AT LOWER INCOMES. 3681 02:30:27,400 --> 02:30:29,720 AND THERE'S ALSO NARROWING OF 3682 02:30:29,720 --> 02:30:31,080 ASIAN AND HISPANIC WHITE 3683 02:30:31,080 --> 02:30:38,880 MORTALITY GAPS OVER TIME. 3684 02:30:38,880 --> 02:30:41,080 SO WHAT ARE THE CRITICAL GAPS IN 3685 02:30:41,080 --> 02:30:41,720 KNOWLEDGE? 3686 02:30:41,720 --> 02:30:43,480 WE NEED MORE DATA ON 3687 02:30:43,480 --> 02:30:44,680 SUBPOPULATIONS BECAUSE ALL THE 3688 02:30:44,680 --> 02:30:48,280 STUDIES WE HAVE SEEN SO FAR ARE 3689 02:30:48,280 --> 02:30:49,560 FOCUSSING ON LARGER GROUPS LIKE 3690 02:30:49,560 --> 02:30:51,720 BLACK, WHITE, HISPANICS BUT NOT 3691 02:30:51,720 --> 02:30:53,680 SO MUCH ON AMERICAN INDIAN, 3692 02:30:53,680 --> 02:31:00,240 ALASKAN NATIVES OR ASIANS AND WE 3693 02:31:00,240 --> 02:31:03,840 NEED TO ELUCIDATE THE CAUSES AND 3694 02:31:03,840 --> 02:31:05,840 MECHANISMS FOR THE OBSERVED 3695 02:31:05,840 --> 02:31:06,880 DISPARITIES IN DIAGNOSIS AND 3696 02:31:06,880 --> 02:31:09,160 CARE AND NEED TO CONSIDER OTHER 3697 02:31:09,160 --> 02:31:12,640 DIMENSION OF RISK BENEFITS, RISK 3698 02:31:12,640 --> 02:31:13,600 AND COST. 3699 02:31:13,600 --> 02:31:15,600 FOR EXAMPLE THE VALUE OF THE 3700 02:31:15,600 --> 02:31:17,680 DIAGNOSIS AND DIMENSIONS PEOPLE 3701 02:31:17,680 --> 02:31:21,520 LIVE WITH DEMENTIA AND 3702 02:31:21,520 --> 02:31:22,160 CAREGIVERS MIGHT CONSIDER TO BE 3703 02:31:22,160 --> 02:31:27,000 VALUABLE. 3704 02:31:27,000 --> 02:31:29,640 FINALLY WE NEED POLICIES AND 3705 02:31:29,640 --> 02:31:30,240 PRACTICES TO PROMOTE HEALTH 3706 02:31:30,240 --> 02:31:36,880 EQUITY. 3707 02:31:36,880 --> 02:31:39,240 SO HOW DO WE MAKE PROGRESS? 3708 02:31:39,240 --> 02:31:44,000 WE NEED TO LOOK AT THE RACIAL 3709 02:31:44,000 --> 02:31:45,520 DIFFERENCES IN DIAGNOSIS AND 3710 02:31:45,520 --> 02:31:48,560 CARE AND PROMOTE BRAIN HEALTH 3711 02:31:48,560 --> 02:31:50,720 EQUITY AND INCORPORATE DEMENTIA 3712 02:31:50,720 --> 02:31:53,040 CARE MODELS AND PREPARE THE 3713 02:31:53,040 --> 02:31:54,960 WORKFORCE TO CARE FOR DIVERSE 3714 02:31:54,960 --> 02:31:57,720 OLDER ADULT POPULATION AND 3715 02:31:57,720 --> 02:32:00,480 INCREASE DIVERSITY AMONG HEALTH 3716 02:32:00,480 --> 02:32:02,000 CARE STAFF AND RECRUIT DIVERSE 3717 02:32:02,000 --> 02:32:02,880 POPULATIONS IN CLINICAL TRIALS. 3718 02:32:02,880 --> 02:32:06,720 THIS IS IT FOR ME. 3719 02:32:06,720 --> 02:32:10,040 I AM CURRENTLY SUPPORTED BY NIA 3720 02:32:10,040 --> 02:32:13,960 THROUGH VARIOUS MECHANISMS AND 3721 02:32:13,960 --> 02:32:16,640 THIS IS WHAT I AM REPORTING ON 3722 02:32:16,640 --> 02:32:16,960 HERE. 3723 02:32:16,960 --> 02:32:21,520 >>THANK YOU. 3724 02:32:21,520 --> 02:32:26,680 NICE WORK EVERYONE. 3725 02:32:26,680 --> 02:32:29,160 I'M SUMMARIZE OUR DRAFT, GAPS 3726 02:32:29,160 --> 02:32:30,800 AND OPPORTUNITIES AND ADD YOUR 3727 02:32:30,800 --> 02:32:32,000 QUESTIONS TO THE Q&A AT THE 3728 02:32:32,000 --> 02:32:34,680 BOTTOM OF YOUR SCREEN. 3729 02:32:34,680 --> 02:32:41,480 IN TERMS OF THE GAPS AND 3730 02:32:41,480 --> 02:32:45,360 OPPORTUNITIES DRAFTED BY OUR 3731 02:32:45,360 --> 02:32:47,480 SESSION GROUP FIRST WE SUGGEST 3732 02:32:47,480 --> 02:32:49,360 CONDUCTING STAGE 1 AND 2 AND 3 3733 02:32:49,360 --> 02:32:50,320 RESEARCH FOLLOWING THE STAGE 3734 02:32:50,320 --> 02:32:52,360 MODEL FOR BEHAVIORAL 3735 02:32:52,360 --> 02:32:54,200 INTERVENTION AND DEVELOPMENT AS 3736 02:32:54,200 --> 02:32:55,400 DESCRIBED EARLIER THIS MORNING 3737 02:32:55,400 --> 02:32:57,760 THAT'S INCLUSIVE OF DIVERSE 3738 02:32:57,760 --> 02:32:58,080 POPULATIONS. 3739 02:32:58,080 --> 02:33:00,000 GEOGRAPHIC SETTINGS AND 3740 02:33:00,000 --> 02:33:01,480 ENVIRONMENTS OF CARE TO 3741 02:33:01,480 --> 02:33:02,760 UNDERSTAND OUR ABILITY AND 3742 02:33:02,760 --> 02:33:04,640 FEASIBILITY AND ACCESSIBILITY OF 3743 02:33:04,640 --> 02:33:05,880 EARLY DETECTION TOOLS FOR 3744 02:33:05,880 --> 02:33:07,480 PERSONS AT RISK FOR DEMENTIA AS 3745 02:33:07,480 --> 02:33:09,760 WELL AS THE IMPACTS ON HEALTH 3746 02:33:09,760 --> 02:33:13,800 DECISIONS AT THE IMPACT OF 3747 02:33:13,800 --> 02:33:14,200 SERVICES. 3748 02:33:14,200 --> 02:33:17,880 THE SECOND GAP IN OPPORTUNITY WE 3749 02:33:17,880 --> 02:33:19,480 SUGGEST CURATING REPRESENTATIVE 3750 02:33:19,480 --> 02:33:22,040 REAL WORLD PRIMARY CARE AND 3751 02:33:22,040 --> 02:33:23,160 POPULATION-BASED DATA RESOURCES 3752 02:33:23,160 --> 02:33:26,520 TO ACCELERATE RESEARCH ON THE 3753 02:33:26,520 --> 02:33:27,600 DEVELOPMENT OF FAIR AND 3754 02:33:27,600 --> 02:33:30,800 EQUITABLE EARLY DETECTION AND 3755 02:33:30,800 --> 02:33:32,800 RISK STRATIFICATION TOOLS FOR 3756 02:33:32,800 --> 02:33:33,440 DEMENTIA. 3757 02:33:33,440 --> 02:33:34,640 ELUCIDATE THE MECHANISMS 3758 02:33:34,640 --> 02:33:37,040 RESPONSIBLE FOR DISPARITIES IN 3759 02:33:37,040 --> 02:33:39,000 DEMENTIA DIAGNOSIS AND TIMING 3760 02:33:39,000 --> 02:33:41,440 AND CARE AND LASTLY TO IMPROVE 3761 02:33:41,440 --> 02:33:45,480 EQUITY IN DEMENTIA CARE. 3762 02:33:45,480 --> 02:33:49,920 I WILL NOW INVITE OUR WONDERFUL 3763 02:33:49,920 --> 02:33:51,120 PANELISTS THAT WILL BE PROVIDING 3764 02:33:51,120 --> 02:33:53,560 BRIEF REMARKS. 3765 02:33:53,560 --> 02:33:56,560 WE HAVE DEBORAH JOBE I'LL BE 3766 02:33:56,560 --> 02:33:59,560 INTRODUCING SHORTLY FIRST 3767 02:33:59,560 --> 02:34:01,480 FOLLOWED BY NATHANIEL CHIN FROM 3768 02:34:01,480 --> 02:34:03,680 THE UNIVERSITY OF WISCONSIN 3769 02:34:03,680 --> 02:34:10,360 MADISON AND DR. LARGENT FROM THE 3770 02:34:10,360 --> 02:34:11,400 UNIVERSITY OF PENNSYLVANIA. 3771 02:34:11,400 --> 02:34:13,480 I'D LIKE FOR YOU TO PROVIDE YOUR 3772 02:34:13,480 --> 02:34:19,360 REMARKS FIRST. 3773 02:34:19,360 --> 02:34:21,240 MY QUESTION IS WHAT WERE THE 3774 02:34:21,240 --> 02:34:24,840 NEGATIVE AND POSITIVE ASPECTS OF 3775 02:34:24,840 --> 02:34:26,080 DIAGNOSIS AND GETTING STARTED 3776 02:34:26,080 --> 02:34:27,240 WITH CARE. 3777 02:34:27,240 --> 02:34:32,120 >>I'M DEBORAH JOBE I WAS 3778 02:34:32,120 --> 02:34:41,520 DIAGNOSED WITH POSTERI II IIOR 3779 02:34:41,520 --> 02:34:42,440 CORTICAL ATROPHY. 3780 02:34:42,440 --> 02:34:45,960 I STARTED HAVING MEMORY PROBLEMS 3781 02:34:45,960 --> 02:34:47,760 AND OTHER SITUATIONS AS WELL AND 3782 02:34:47,760 --> 02:34:50,760 MY HUSBAND URGED ME TO GO TO MY 3783 02:34:50,760 --> 02:34:52,040 PRIMARY AND FINALLY DID. 3784 02:34:52,040 --> 02:34:53,960 I WAS BLESSED TO HAVE A 3785 02:34:53,960 --> 02:34:56,000 WONDERFUL PRIMARY CARE 3786 02:34:56,000 --> 02:34:57,760 EXPERIENCE WHERE SHE DID NOT 3787 02:34:57,760 --> 02:35:00,960 DISCOUNT MY HUSBAND OR MY 3788 02:35:00,960 --> 02:35:02,320 CONCERNS. 3789 02:35:02,320 --> 02:35:04,960 AND AFTER EXTENSIVE TESTING THE 3790 02:35:04,960 --> 02:35:06,720 DIAGNOSIS WAS REVEALED BUT WE 3791 02:35:06,720 --> 02:35:11,360 WERE PROVIDED CRITICAL NEXT 3792 02:35:11,360 --> 02:35:12,760 STEPS IMMEDIATELY. 3793 02:35:12,760 --> 02:35:15,640 AND THOSE STEPS DON'T OFTEN 3794 02:35:15,640 --> 02:35:18,440 HAPPEN FOR A LOT OF PEOPLE AS A 3795 02:35:18,440 --> 02:35:20,640 RESULT OF THE BARRIERS. 3796 02:35:20,640 --> 02:35:21,600 WE WERE REFERRED TO ALZHEIMER'S 3797 02:35:21,600 --> 02:35:23,200 ASSOCIATION WHERE WE GOT ACCESS 3798 02:35:23,200 --> 02:35:24,640 TO EDUCATION SUPPORT GROUPS AND 3799 02:35:24,640 --> 02:35:25,240 ELDER CARE RESOURCES IN OUR 3800 02:35:25,240 --> 02:35:28,640 AREA. 3801 02:35:28,640 --> 02:35:31,480 I WENT TO COGNITIVE SPEECH 3802 02:35:31,480 --> 02:35:33,000 THERAPY, OCCUPATIONAL THERAPY 3803 02:35:33,000 --> 02:35:35,360 AND A COUNSELOR SPECIALIZING IN 3804 02:35:35,360 --> 02:35:35,680 DEMENTIA. 3805 02:35:35,680 --> 02:35:38,120 AGAIN, I AM A LUCKY ONE BUT MANY 3806 02:35:38,120 --> 02:35:40,000 PEOPLE STRUGGLE AS A RESULT OF 3807 02:35:40,000 --> 02:35:40,960 THESE BARRIERS. 3808 02:35:40,960 --> 02:35:44,200 PRIMARY CARE EDUCATION IS HUGE. 3809 02:35:44,200 --> 02:35:47,240 NEED TO BE ABLE TO ASSESS AND 3810 02:35:47,240 --> 02:35:49,000 IDENTIFY PRIOR TO THE CLAIM. 3811 02:35:49,000 --> 02:35:49,240 ADVICE. 3812 02:35:49,240 --> 02:35:50,400 MOST PEOPLE DON'T LOOK AT 3813 02:35:50,400 --> 02:35:53,760 SOMEBODY MY AGE NOW AT 56 TO 3814 02:35:53,760 --> 02:35:55,560 EVEN CONSIDER THAT MIGHT BE AN 3815 02:35:55,560 --> 02:35:57,000 OPTION THAT'S HAPPENING. 3816 02:35:57,000 --> 02:35:59,840 ESPECIALLY IF YOU'RE A WOMAN, 3817 02:35:59,840 --> 02:36:03,040 THEY CHOCK IT UP TO BRAIN FOG 3818 02:36:03,040 --> 02:36:05,480 FROM MENOPAUSE AND STRESS. 3819 02:36:05,480 --> 02:36:07,080 THAT CAN WREAK HAVOC AS WELL. 3820 02:36:07,080 --> 02:36:09,880 ACCESS TO CARE, DIVERSE, RURAL 3821 02:36:09,880 --> 02:36:11,240 UNDER SERVED COMMUNITIES LACK 3822 02:36:11,240 --> 02:36:13,720 THOSE WITH RESOURCES AND LOCAL 3823 02:36:13,720 --> 02:36:15,360 RESOURCES TO AID IN THE 3824 02:36:15,360 --> 02:36:16,920 DIAGNOSTIC PROCESS. 3825 02:36:16,920 --> 02:36:18,400 MY EXPERIENCE WITH EACH AND 3826 02:36:18,400 --> 02:36:19,160 EVERY INDIVIDUAL SHOULD HAVE 3827 02:36:19,160 --> 02:36:22,160 WHEN TO GET FROM THE POINT OF 3828 02:36:22,160 --> 02:36:24,440 DIAGNOSIS TO THE PROCESS AFTER 3829 02:36:24,440 --> 02:36:25,800 WORDS, THE AFTER CARE 3830 02:36:25,800 --> 02:36:26,120 PROFESSION. 3831 02:36:26,120 --> 02:36:29,200 THE HORROR STORIES I HAVE HEARD 3832 02:36:29,200 --> 02:36:32,240 WITH INDIVIDUALS IN MY SITUATION 3833 02:36:32,240 --> 02:36:34,360 ARE HORRENDOUS AND HEART 3834 02:36:34,360 --> 02:36:34,640 WRENCHING. 3835 02:36:34,640 --> 02:36:37,880 CLOSE YOUR EYES AND PUT THIS IN 3836 02:36:37,880 --> 02:36:39,000 THE SCENARIO WHERE YOU'RE IN 3837 02:36:39,000 --> 02:36:41,720 YOUR DOCTOR'S OFFICE AND SAY YOU 3838 02:36:41,720 --> 02:36:44,360 HAVE ALZHEIMER'S AND OTHER 3839 02:36:44,360 --> 02:36:44,640 DEMENTIAS. 3840 02:36:44,640 --> 02:36:46,280 GET YOUR AFFAIRS IN ORDER AND 3841 02:36:46,280 --> 02:36:47,560 I'LL SEE YOU IN A YEAR. 3842 02:36:47,560 --> 02:36:49,320 WHAT WOULD BE A TRUE VALUE FOR 3843 02:36:49,320 --> 02:36:51,480 THOSE OF US LIVING THIS IS A 3844 02:36:51,480 --> 02:36:53,600 DEMENTIA CARE COORDINATOR IN ALL 3845 02:36:53,600 --> 02:36:55,160 MEDICAL SYSTEMS WHERE IT'S 3846 02:36:55,160 --> 02:37:00,040 ALMOST A CASE WORKER LIKE HEART 3847 02:37:00,040 --> 02:37:02,320 DISEASE OR DIABETES TO BE ABLE 3848 02:37:02,320 --> 02:37:05,400 TO ADVISE US, ASSIST IN 3849 02:37:05,400 --> 02:37:07,400 SCHEDULING, NAVIGATING THE 3850 02:37:07,400 --> 02:37:08,960 TERRAIN OF EDUCATION, 3851 02:37:08,960 --> 02:37:10,640 MEDICATIONS, THERAPIES, 3852 02:37:10,640 --> 02:37:13,320 FINANCIAL NEEDS, ADVANCED CARE 3853 02:37:13,320 --> 02:37:14,960 PLANNING, SUPPORT, TECHNOLOGY TO 3854 02:37:14,960 --> 02:37:17,440 ASSIST WITH INDEPENDENCE. 3855 02:37:17,440 --> 02:37:20,720 I BELIEVE THE TIMELY ACTIONS OF 3856 02:37:20,720 --> 02:37:22,480 MY PRIMARY CARE PHYSICIAN AND 3857 02:37:22,480 --> 02:37:25,680 THE IMMEDIATE INTERVENTIONS FOR 3858 02:37:25,680 --> 02:37:27,560 ME WERE CRITICAL IN GAINING MY 3859 02:37:27,560 --> 02:37:27,880 ADJUSTMENT. 3860 02:37:27,880 --> 02:37:30,080 I HAVE A QUALITY OF LIFE THOUGH 3861 02:37:30,080 --> 02:37:32,560 I CAN'T DO MANY THINGS BUT THE 3862 02:37:32,560 --> 02:37:34,800 KEY IS I AM LIVING WELL WITH 3863 02:37:34,800 --> 02:37:37,200 DEMENTIA. 3864 02:37:37,200 --> 02:37:39,720 >>THANK YOU SO MUCH, DEB. 3865 02:37:39,720 --> 02:37:41,480 I'M SURE YOUR WORDS RESONATE 3866 02:37:41,480 --> 02:37:45,360 WITH MANY FOLKS IN OUR AUDIENCE. 3867 02:37:45,360 --> 02:37:50,240 I WILL NOW HAND IT OVER TO OUR 3868 02:37:50,240 --> 02:37:53,280 NEXT PANELIST DR. NATHANIEL 3869 02:37:53,280 --> 02:37:53,680 CHIN. 3870 02:37:53,680 --> 02:37:55,520 >>THANK YOU, EVERYONE. 3871 02:37:55,520 --> 02:37:57,640 AS WE KNOW, THE 2020 3872 02:37:57,640 --> 02:38:00,360 U.S. PREVENTIVE SERVICES TASK 3873 02:38:00,360 --> 02:38:02,200 FORCE RECOMMENDATION IS NOT FOR 3874 02:38:02,200 --> 02:38:03,000 UNIVERSAL SCREENING WHICH MEANS 3875 02:38:03,000 --> 02:38:06,360 IT HAS TO BE TRIGGERED. 3876 02:38:06,360 --> 02:38:07,600 IN CLINICAL PRACTICE THE TRIGGER 3877 02:38:07,600 --> 02:38:08,720 COULD BE A CONCERN FROM THE 3878 02:38:08,720 --> 02:38:10,760 PATIENT FAMILY MEMBER OR 3879 02:38:10,760 --> 02:38:11,440 PROVIDERS THEMSELVES. 3880 02:38:11,440 --> 02:38:13,200 A CONSEQUENCE OF THIS APPROACH 3881 02:38:13,200 --> 02:38:16,120 IS IT HAS CONTRIBUTED TO MANY 3882 02:38:16,120 --> 02:38:18,440 UNDIAGNOSED CASES PARTICULARLY 3883 02:38:18,440 --> 02:38:20,480 AMONG PEOPLE OF COLOR. 3884 02:38:20,480 --> 02:38:22,360 IN THINKING WHY MORE PEOPLE ARE 3885 02:38:22,360 --> 02:38:23,480 NOT GETTING A COGNITIVE SCREEN I 3886 02:38:23,480 --> 02:38:27,080 COME BACK TO THE FINDINGS FROM 3887 02:38:27,080 --> 02:38:28,720 THE ALZHEIMER'S DISEASE 3888 02:38:28,720 --> 02:38:31,400 INTERNATIONAL 2021 WORLD 3889 02:38:31,400 --> 02:38:33,240 ALZHEIMER'S AND ASSOCIATION 2022 3890 02:38:33,240 --> 02:38:35,240 FACTS AND FIGURES REPORT THAT 3891 02:38:35,240 --> 02:38:37,320 HIGHLIGHT CONFUSION, BIAS AND 3892 02:38:37,320 --> 02:38:39,240 STIGMA ARE NOT JUST AMONG THE 3893 02:38:39,240 --> 02:38:41,400 PUBLIC BUT HEALTH CARE 3894 02:38:41,400 --> 02:38:41,920 PROVIDERS. 3895 02:38:41,920 --> 02:38:45,920 IF BOTH THE HEALTH CARE 3896 02:38:45,920 --> 02:38:47,560 PROVIDERS AND THE PATIENT 3897 02:38:47,560 --> 02:38:48,880 CAREGIVERS LACK THE INFORMATION 3898 02:38:48,880 --> 02:38:50,960 ON COGNITIVE AGING HOW CAN THERE 3899 02:38:50,960 --> 02:38:53,880 BE A RELIABLE TRIGGER FOR 3900 02:38:53,880 --> 02:38:56,120 SCREENING AND EVENT DIAGNOSIS. 3901 02:38:56,120 --> 02:38:57,120 VALIDATED SCREENING TOOL AND 3902 02:38:57,120 --> 02:38:59,920 PROTOCOL WOULD BE HELPFUL FOR 3903 02:38:59,920 --> 02:39:02,240 PROVIDER IN FACILITATING THE 3904 02:39:02,240 --> 02:39:03,080 IDENTIFICATION HOWEVER, UNLESS 3905 02:39:03,080 --> 02:39:05,360 THIS IS DONE IN A SYSTEMATIC OR 3906 02:39:05,360 --> 02:39:07,360 AUTOMATIC WAY, THE LACK OF 3907 02:39:07,360 --> 02:39:09,360 KNOWLEDGE AND BIAS AMONG 3908 02:39:09,360 --> 02:39:11,440 PROVIDERS IS STILL HAMPERING THE 3909 02:39:11,440 --> 02:39:15,800 TRIGGER TO UTILIZE SUCH A TOOL. 3910 02:39:15,800 --> 02:39:16,640 USING ELECTRONIC HEALTH RECORD 3911 02:39:16,640 --> 02:39:18,440 AS EXPANDING THE TOOL FOR 3912 02:39:18,440 --> 02:39:19,640 IDENTIFICATION BUT STILL COULD 3913 02:39:19,640 --> 02:39:26,720 FACE SOME CONSEQUENCES OF STIGMA 3914 02:39:26,720 --> 02:39:27,520 AND BIAS. 3915 02:39:27,520 --> 02:39:29,760 IF PROVIDERS ARE NOT ASKING 3916 02:39:29,760 --> 02:39:30,680 ABOUT COGNITION OR DOCUMENTING 3917 02:39:30,680 --> 02:39:33,080 THE CONVERSATIONS WHEN THEY 3918 02:39:33,080 --> 02:39:33,640 HAPPEN, CHART RELIABILITY 3919 02:39:33,640 --> 02:39:36,200 DECLINES. 3920 02:39:36,200 --> 02:39:39,200 THIS MAY IMPROVE WITH VIRTUAL 3921 02:39:39,200 --> 02:39:40,360 SCRIBES BUT IMPROVED EDUCATION 3922 02:39:40,360 --> 02:39:42,200 FOR PROVIDERS IS STILL NEEDED 3923 02:39:42,200 --> 02:39:43,880 AND SHOULD BE CENTRAL. 3924 02:39:43,880 --> 02:39:47,320 TO END, HEALTH CARE CANNOT RELY 3925 02:39:47,320 --> 02:39:50,440 ON PRIMARY CARE CLINICS ALONE. 3926 02:39:50,440 --> 02:39:52,240 IF HEALTH CARE WISHES TO HELP 3927 02:39:52,240 --> 02:39:53,240 COMMUNITIES, ESPECIALLY 3928 02:39:53,240 --> 02:39:54,360 COMMUNITIES OF COLOR IT NEEDS TO 3929 02:39:54,360 --> 02:39:55,520 GO TO THE COMMUNITY. 3930 02:39:55,520 --> 02:39:57,000 DOING SO CAN HELP PEOPLE BUT 3931 02:39:57,000 --> 02:39:59,280 ALSO ADDRESSES THE STIGMA, BIAS 3932 02:39:59,280 --> 02:40:01,360 AND MISINFORMATION OUT THERE. 3933 02:40:01,360 --> 02:40:02,920 I APPRECIATE THE SLIDE THAT SAID 3934 02:40:02,920 --> 02:40:05,680 PRIMARY CARE IS NOT A PLACE BUT 3935 02:40:05,680 --> 02:40:06,880 AN IDEA. 3936 02:40:06,880 --> 02:40:08,800 AND ALONG THOSE LINES I PROPOSE 3937 02:40:08,800 --> 02:40:11,520 WE HAVE MORE COMMUNITY HEALTH 3938 02:40:11,520 --> 02:40:12,600 WORKERS WORKING FOR HEALTH CARE 3939 02:40:12,600 --> 02:40:14,760 ORGANIZATIONS THAT GO IN THE 3940 02:40:14,760 --> 02:40:16,480 COMMUNITY TO PROVIDE EDUCATION 3941 02:40:16,480 --> 02:40:18,400 ON CHRONIC DISEASES AND 3942 02:40:18,400 --> 02:40:21,000 POTENTIAL TREATMENTS AND PROMOTE 3943 02:40:21,000 --> 02:40:22,320 HEALTHY HABITS INCLUDING BRAIN 3944 02:40:22,320 --> 02:40:24,400 HEALTHY HABITS AND DO THE 3945 02:40:24,400 --> 02:40:26,080 SCREENING FOR MANY CHRONIC 3946 02:40:26,080 --> 02:40:27,360 HEALTH CONDITIONS INCLUDING 3947 02:40:27,360 --> 02:40:30,800 DEMENTIA BUT NOT LIMITED TO THAT 3948 02:40:30,800 --> 02:40:36,560 AND LOOKING AT DIABETES, 3949 02:40:36,560 --> 02:40:38,160 HYPERTENSION AND DEPRESSION AND 3950 02:40:38,160 --> 02:40:39,520 WE CAN LOOK AT THE SCREENING 3951 02:40:39,520 --> 02:40:42,040 AND/OR THE PROCESS OF WHAT TO DO 3952 02:40:42,040 --> 02:40:44,720 AFTER A POSITIVE SCORE. 3953 02:40:44,720 --> 02:40:46,560 HEALTH WORKERS CAN THEN CONNECT 3954 02:40:46,560 --> 02:40:51,840 WITH CLINICS AND SPECIALISTS SO 3955 02:40:51,840 --> 02:40:53,680 THE TRANSITION CAN HAPPEN 3956 02:40:53,680 --> 02:40:56,600 QUICKER AND AT AN ESTABLISHED 3957 02:40:56,600 --> 02:40:57,000 COMMUNITY CASE. 3958 02:40:57,000 --> 02:40:58,640 IT DOESN'T HAVE TO BE A CLINIC. 3959 02:40:58,640 --> 02:41:01,400 ALL THIS CAN BE DONE WITH AN 3960 02:41:01,400 --> 02:41:02,400 ELECTRONIC HEALTH RECORD AND 3961 02:41:02,400 --> 02:41:03,280 ACCESSIBLE DATA. 3962 02:41:03,280 --> 02:41:04,960 ULTIMATELY WORKING WITH THE 3963 02:41:04,960 --> 02:41:06,560 COMMUNITY MEANS WORKING WITH 3964 02:41:06,560 --> 02:41:07,200 FUTURE PATIENTS AND CARE 3965 02:41:07,200 --> 02:41:12,760 PARTNERS TOO. 3966 02:41:12,760 --> 02:41:15,600 >>OUR NEXT PANELIST IS 3967 02:41:15,600 --> 02:41:16,880 DR. EMILY LARGENT. 3968 02:41:16,880 --> 02:41:17,960 >>THANK YOU. 3969 02:41:17,960 --> 02:41:19,800 AS PANELISTS REMARKS HAVE 3970 02:41:19,800 --> 02:41:21,120 HIGHLIGHTED PATIENTS STAND TO 3971 02:41:21,120 --> 02:41:22,320 BENEFIT FROM THE EARLY DETECTION 3972 02:41:22,320 --> 02:41:24,800 OF DEMENTIA AND CAREGIVERS STAND 3973 02:41:24,800 --> 02:41:26,560 TO BENEFIT AND WILL BE AFFECTED 3974 02:41:26,560 --> 02:41:27,400 BY EARLY DIAGNOSIS. 3975 02:41:27,400 --> 02:41:29,600 MOVING FORWARD I WOULD SAY IT'S 3976 02:41:29,600 --> 02:41:30,400 ESSENTIAL TO CONTINUE SUPPORTING 3977 02:41:30,400 --> 02:41:32,200 RESEARCH AND DEVELOPING 3978 02:41:32,200 --> 02:41:33,440 INTERVENTIONS THAT CENTER CARE 3979 02:41:33,440 --> 02:41:36,440 STRUCTURES AND SUPPORTS ON THE 3980 02:41:36,440 --> 02:41:39,360 PATIENT CAREGIVER DIAD. 3981 02:41:39,360 --> 02:41:41,080 I HAVE FIVE ILLUSTRATIONS. 3982 02:41:41,080 --> 02:41:44,600 FIRST WE NEED TO NAME THE CARE 3983 02:41:44,600 --> 02:41:44,840 PARTNER. 3984 02:41:44,840 --> 02:41:46,880 IN CLINICAL SETTINGS WHEN 3985 02:41:46,880 --> 02:41:47,760 THERE'S A DIAGNOSIS OF 3986 02:41:47,760 --> 02:41:49,360 ALZHEIMER'S OR RELATED DEMENTIA 3987 02:41:49,360 --> 02:41:52,200 WE NEED TO INCLUDE THE CARE 3988 02:41:52,200 --> 02:41:55,040 PARTNER'S NAME AND CONTACT 3989 02:41:55,040 --> 02:41:57,280 INFORMATION IN THE CHART. 3990 02:41:57,280 --> 02:41:58,800 IT HIT DOESN'T TYPICALLY HAPPEN. 3991 02:41:58,800 --> 02:42:00,560 HAVING A NAME WILL HAVE A 3992 02:42:00,560 --> 02:42:02,000 CONTACT FOR SUPPORT AND 3993 02:42:02,000 --> 02:42:02,320 RESEARCH. 3994 02:42:02,320 --> 02:42:05,880 IN MY ROLE WITH NIA IMPACT 3995 02:42:05,880 --> 02:42:08,280 COLLABORATORY WE REGULARLY SEE 3996 02:42:08,280 --> 02:42:13,080 OUTREACH HAMPERED BY THE 3997 02:42:13,080 --> 02:42:16,320 INABILITY TO REACH CAREGIVERS. 3998 02:42:16,320 --> 02:42:19,240 PHARMACIES COULD BE A SITE OF 3999 02:42:19,240 --> 02:42:23,680 COMMUNITY-BASED INTERVENTION BUT 4000 02:42:23,680 --> 02:42:25,520 OFTEN LACK CAREGIVERS AND 4001 02:42:25,520 --> 02:42:27,440 COMMUNICATING AND NEED TO LOOK 4002 02:42:27,440 --> 02:42:30,000 AT CAREGIVER EXPERIENCE AND WELL 4003 02:42:30,000 --> 02:42:31,120 BEING. 4004 02:42:31,120 --> 02:42:32,960 CONSIDER SOME DATA SUGGESTS 4005 02:42:32,960 --> 02:42:34,560 NEITHER EARLY DIAGNOSIS WHEN THE 4006 02:42:34,560 --> 02:42:36,040 BURDEN OF SYMPTOMS IS LOWER NOR 4007 02:42:36,040 --> 02:42:40,640 THE ABILITY OF DISEASE-MODIFYING 4008 02:42:40,640 --> 02:42:41,800 THERAPIES WILL EXTEND TO DISEASE 4009 02:42:41,800 --> 02:42:44,080 AND DEMENTIA AND IT CAN SPILL 4010 02:42:44,080 --> 02:42:45,400 OVER TO CAREGIVERS AND AFFECT 4011 02:42:45,400 --> 02:42:48,320 CARE FOR THE PERSON LIVING WITH 4012 02:42:48,320 --> 02:42:48,680 DEMENTIA. 4013 02:42:48,680 --> 02:42:50,200 WE NEED TO APPRECIATE THE 4014 02:42:50,200 --> 02:42:51,600 EXPERIENCE OF DIVERSE CAREGIVERS 4015 02:42:51,600 --> 02:42:54,160 WHETHER IT'S RURAL AND URBAN AND 4016 02:42:54,160 --> 02:42:55,320 MINORITIZED POPULATIONS AND 4017 02:42:55,320 --> 02:42:56,600 ETCETERA. 4018 02:42:56,600 --> 02:42:59,720 THIRD WE NEED TO DEVELOP AND PAY 4019 02:42:59,720 --> 02:43:00,360 EVIDENCE-BASED COLLABORATIVE 4020 02:43:00,360 --> 02:43:02,640 CARE MODELS THAT FOSTER THE WELL 4021 02:43:02,640 --> 02:43:04,200 BEING OF PEOPLE LIVING WITH 4022 02:43:04,200 --> 02:43:05,640 DEMENTIA AND REDUCE STRAIN ON 4023 02:43:05,640 --> 02:43:05,960 CAREGIVERS. 4024 02:43:05,960 --> 02:43:08,200 THIS IS AN OPPORTUNITY TO TAKE 4025 02:43:08,200 --> 02:43:09,920 INTO ACCOUNT SOCIAL, ECONOMIC 4026 02:43:09,920 --> 02:43:11,280 AND INSTITUTIONAL BARRIERS AND 4027 02:43:11,280 --> 02:43:14,160 TO ADDRESS DISPARITIES. 4028 02:43:14,160 --> 02:43:17,760 CARE MUST BE TAKEN TO NAME AND 4029 02:43:17,760 --> 02:43:19,480 AMEALIORATE THE STRUCTURES THAT 4030 02:43:19,480 --> 02:43:21,640 MAKE CARE GIVING DIFFICULT AND 4031 02:43:21,640 --> 02:43:23,320 NOT DEMAND CAREGIVERS BEING 4032 02:43:23,320 --> 02:43:24,360 RESILIENT TO THE CHALLENGES THEY 4033 02:43:24,360 --> 02:43:25,160 FACE. 4034 02:43:25,160 --> 02:43:31,960 FOURTH, WE NEED TO CONTINUE 4035 02:43:31,960 --> 02:43:35,640 WORKING ON HELPING CARE 4036 02:43:35,640 --> 02:43:35,920 PARTNERS. 4037 02:43:35,920 --> 02:43:36,680 THEY'RE VULNERABLE TO LOWER 4038 02:43:36,680 --> 02:43:39,120 QUALITY CARE AND POORER 4039 02:43:39,120 --> 02:43:39,400 OUTCOMES. 4040 02:43:39,400 --> 02:43:40,760 CAN TECHNOLOGIES HELP FACILITATE 4041 02:43:40,760 --> 02:43:43,920 OR RECONCEPTUALIZE CARE GIVING? 4042 02:43:43,920 --> 02:43:45,360 FINALLY, WHEN A PATIENT HAS 4043 02:43:45,360 --> 02:43:47,360 ALZHEIMER'S DISEASE OR A RELATED 4044 02:43:47,360 --> 02:43:48,600 DEMENTIA, CARE GIVING IS NOT 4045 02:43:48,600 --> 02:43:50,480 JUST CARE FOR A BODY BUT SUPPORT 4046 02:43:50,480 --> 02:43:51,320 OF A MIND. 4047 02:43:51,320 --> 02:43:53,000 THE CARE PARTNER PLAYS AN 4048 02:43:53,000 --> 02:43:54,480 ESSENTIAL ROLE IN SCAFFOLDING 4049 02:43:54,480 --> 02:43:55,600 THE PERSON LIVING WITH 4050 02:43:55,600 --> 02:43:56,720 DEMENTIA'S THINKING AND 4051 02:43:56,720 --> 02:43:58,720 SUPPORTING THEIR DECISION 4052 02:43:58,720 --> 02:43:58,960 MAKING. 4053 02:43:58,960 --> 02:44:00,760 DECISION MAKING'S IMPORTANT 4054 02:44:00,760 --> 02:44:03,000 BECAUSE DEMENTIA IS A DISEASE OF 4055 02:44:03,000 --> 02:44:03,280 AUTONOMY. 4056 02:44:03,280 --> 02:44:06,360 TOO OFTEN WE FOCUS ON ADVANCED 4057 02:44:06,360 --> 02:44:08,000 CARE PLANNING BUT ONCE AN 4058 02:44:08,000 --> 02:44:09,920 INDIVIDUAL IS DIAGNOSED WITH 4059 02:44:09,920 --> 02:44:11,000 DEMENTIA THEY FACE COUNTLESS 4060 02:44:11,000 --> 02:44:12,600 DECISIONS ACROSS DOMAINS. 4061 02:44:12,600 --> 02:44:14,760 THEY'RE OFTEN MADE 4062 02:44:14,760 --> 02:44:15,760 COLLABORATIVELY WITH THE PERSON 4063 02:44:15,760 --> 02:44:17,400 LIVING WITH DEMENTIA AND THEIR 4064 02:44:17,400 --> 02:44:19,200 CARE PARTNER PARTICULARLY AS 4065 02:44:19,200 --> 02:44:20,960 DIAGNOSIS COMES EARLIER AND 4066 02:44:20,960 --> 02:44:22,960 PEOPLE LIVING LONGER WITH 4067 02:44:22,960 --> 02:44:24,880 DEMENTIA WORK TO SPAN ALL 4068 02:44:24,880 --> 02:44:27,800 DOMAINS OF DECISION MAKING AS 4069 02:44:27,800 --> 02:44:29,960 THE SAMPLES SUGGEST EARLY 4070 02:44:29,960 --> 02:44:31,240 DIAGNOSIS MUST ACCOUNT FOR THE 4071 02:44:31,240 --> 02:44:33,120 PERSON WITH DEMENTIA AND THEIR 4072 02:44:33,120 --> 02:44:34,840 CAREGIVER. 4073 02:44:34,840 --> 02:44:35,360 THANK YOU. 4074 02:44:35,360 --> 02:44:38,360 >>I'LL NOW ASK ALL OF OUR 4075 02:44:38,360 --> 02:44:43,360 DISCUSSANTS TO JOIN US ON THE 4076 02:44:43,360 --> 02:44:53,800 SCREEN AND GREAT SESSION. 4077 02:44:58,680 --> 02:45:02,040 SUBMIT QUESTIONS DURING KWAEP ON 4078 02:45:02,040 --> 02:45:02,640 THE LIVE STREAM AND YOU CAN 4079 02:45:02,640 --> 02:45:04,880 SUBMIT QUESTIONS THROUGH THERE. 4080 02:45:04,880 --> 02:45:06,440 GREAT PRESENTATIONS AND I THINK 4081 02:45:06,440 --> 02:45:08,960 I'LL KICK IT OFF WITH THE IDEA 4082 02:45:08,960 --> 02:45:11,120 OF PRIMARY CARE IS NOT A PLACE 4083 02:45:11,120 --> 02:45:14,360 BUT AN IDEA. 4084 02:45:14,360 --> 02:45:15,680 AND MOVING BEYOND THE 4085 02:45:15,680 --> 02:45:17,360 TRADITIONAL CARE SETTINGS AND SO 4086 02:45:17,360 --> 02:45:23,120 I HEARD A COUPLE OF DIFFERENT 4087 02:45:23,120 --> 02:45:26,640 COMMENTS DEB POINTED OUT NEEDING 4088 02:45:26,640 --> 02:45:30,320 A DEMENTIA CARE LIAISON IN 4089 02:45:30,320 --> 02:45:32,440 CLINICAL SETTINGS AND DR. CHIN 4090 02:45:32,440 --> 02:45:33,480 POINTED OUT THE COMMUNITY HEALTH 4091 02:45:33,480 --> 02:45:35,480 WORKERS AND THEIR ABILITY TO GO 4092 02:45:35,480 --> 02:45:36,360 INTO COMMUNITIES AND DO A LOT OF 4093 02:45:36,360 --> 02:45:43,640 THIS WORK. 4094 02:45:43,640 --> 02:45:46,160 WHAT ARE OTHER THOUGHTS TO MOVE 4095 02:45:46,160 --> 02:45:47,960 OUTSIDE THE TRADITIONAL SETTING 4096 02:45:47,960 --> 02:45:50,440 TO HELP PEOPLE WHERE THEY ARE IN 4097 02:45:50,440 --> 02:45:52,760 TERMS OF AN EARLY DIAGNOSIS IN 4098 02:45:52,760 --> 02:45:55,560 AN EQUITABLE PLANNER? 4099 02:45:55,560 --> 02:45:56,640 -- MANNER. 4100 02:45:56,640 --> 02:45:58,640 LET'S START WITH DR. SHAH. 4101 02:45:58,640 --> 02:46:00,400 >>SURE. 4102 02:46:00,400 --> 02:46:00,640 THANK YOU. 4103 02:46:00,640 --> 02:46:02,120 IT'S WONDERFUL TO BE ON THE 4104 02:46:02,120 --> 02:46:07,560 SESSION WITH EVERYBODY AND THE 4105 02:46:07,560 --> 02:46:07,840 RESPONSES. 4106 02:46:07,840 --> 02:46:11,320 I THINK WE HAVE TO INCLUDE MORE 4107 02:46:11,320 --> 02:46:14,000 OF THE ENGAGEMENT OF DIFFERENT 4108 02:46:14,000 --> 02:46:16,360 RESOURCES THAT INTERACT WITH THE 4109 02:46:16,360 --> 02:46:19,320 PRIMARY CARE PROVIDERS AND 4110 02:46:19,320 --> 02:46:21,240 BROADER ECO SYSTEM, SOCIAL 4111 02:46:21,240 --> 02:46:24,160 SERVICES AND EVEN LOCAL 4112 02:46:24,160 --> 02:46:24,440 RESTAURANTS. 4113 02:46:24,440 --> 02:46:26,280 THERE'S AN ENTIRE ECO SYSTEM 4114 02:46:26,280 --> 02:46:29,800 THAT MONITORS AND ENGAGES WITH 4115 02:46:29,800 --> 02:46:31,440 US IN OUR EVERYDAY LIVES AND IF 4116 02:46:31,440 --> 02:46:33,640 WE CAN BUILD THE CAPABILITIES OF 4117 02:46:33,640 --> 02:46:34,680 SHARING INFORMATION OR ENGAGE 4118 02:46:34,680 --> 02:46:37,280 AND LEARN FROM EACH OTHER, I 4119 02:46:37,280 --> 02:46:39,480 THINK WE GET BETTER AT BEING 4120 02:46:39,480 --> 02:46:44,960 ABLE TO UTILIZE ALL OF OUR 4121 02:46:44,960 --> 02:46:46,360 RESOURCES AVAILABLE IT'S ALWAYS 4122 02:46:46,360 --> 02:46:48,160 IMPRESSIVE WITH THE STIGMA 4123 02:46:48,160 --> 02:46:49,440 ASSOCIATED WITH ALZHEIMER'S 4124 02:46:49,440 --> 02:46:51,560 DISEASE PEOPLE THINK NOBODY 4125 02:46:51,560 --> 02:46:52,920 RECOGNIZES SOMETHING IS GOING ON 4126 02:46:52,920 --> 02:46:54,200 BUT USUALLY PEOPLE RECOGNIZE IT 4127 02:46:54,200 --> 02:46:56,360 AND HOW DO WE GET THAT IN OUR 4128 02:46:56,360 --> 02:46:58,760 SPACES WHERE WE CAN HAVE 4129 02:46:58,760 --> 02:46:59,400 CONVERSATIONS AND START THE 4130 02:46:59,400 --> 02:46:59,960 DIAGNOSTIC AND TREATMENT 4131 02:46:59,960 --> 02:47:02,600 OPTIONS. 4132 02:47:02,600 --> 02:47:07,080 >>THANK YOU. 4133 02:47:07,080 --> 02:47:09,240 DR. DRABO. 4134 02:47:09,240 --> 02:47:13,040 >>ALSO HAVING IN PLACE SOME 4135 02:47:13,040 --> 02:47:14,680 MECHANISMS FOR A SURVEILLANCE 4136 02:47:14,680 --> 02:47:16,000 SYSTEM THE WAY WE HAVE FOR 4137 02:47:16,000 --> 02:47:19,840 EXAMPLE FOR OTHER CONDITIONS 4138 02:47:19,840 --> 02:47:20,560 LIKE CANCER. 4139 02:47:20,560 --> 02:47:22,280 IT WOULD BE VERY HELPFUL TO 4140 02:47:22,280 --> 02:47:24,800 MONITOR AT THE COMMUNITY LEVEL. 4141 02:47:24,800 --> 02:47:26,840 WE KNOW THERE'S REALLY GOOD 4142 02:47:26,840 --> 02:47:28,960 TOOLS AVAILABLE RIGHT NOW TO SEE 4143 02:47:28,960 --> 02:47:31,520 WHETHER SOMEONE HAS COGNITIVE 4144 02:47:31,520 --> 02:47:33,760 DIFFICULTY OR COGNITIVE 4145 02:47:33,760 --> 02:47:36,400 IMPAIRMENT OR ETCETERA. 4146 02:47:36,400 --> 02:47:39,400 IF WE CAN DO MONITORING AT A 4147 02:47:39,400 --> 02:47:41,080 COMMUNITY LEVEL THIS COULD BE 4148 02:47:41,080 --> 02:47:46,960 HELPFUL IN TERMS OF HELPING US 4149 02:47:46,960 --> 02:47:55,160 IDENTIFY EARLY DEMENTIA 4150 02:47:55,160 --> 02:47:56,280 >>THANK YOU. 4151 02:47:56,280 --> 02:47:58,200 DR. McCREEDY DO YOU HAVE POINTS 4152 02:47:58,200 --> 02:48:02,560 YOU'D LIKE TO ADD? 4153 02:48:02,560 --> 02:48:06,640 >>I THINK WORK WITH PARAMEDICS 4154 02:48:06,640 --> 02:48:08,520 AND FIRST RESPONDERS AND PEOPLE 4155 02:48:08,520 --> 02:48:10,200 OUT THERE INTERACTING WITH FOLKS 4156 02:48:10,200 --> 02:48:11,880 LIVING AT HOME. 4157 02:48:11,880 --> 02:48:14,920 MEALS ON WHEELS IS AN EXAMPLE I 4158 02:48:14,920 --> 02:48:16,040 GAVE. 4159 02:48:16,040 --> 02:48:17,280 THINKING OF THE NATURAL TOUCH 4160 02:48:17,280 --> 02:48:19,480 POINTS AND HOW TO LEVERAGE THOSE 4161 02:48:19,480 --> 02:48:22,080 EXISTING TOUCH POINTS TO 4162 02:48:22,080 --> 02:48:23,280 IDENTIFY PEOPLE. 4163 02:48:23,280 --> 02:48:24,560 MAYBE NOT BY SAYING WHICH DO YOU 4164 02:48:24,560 --> 02:48:28,240 THINK HAVE DEMENTIA BUT OTHER 4165 02:48:28,240 --> 02:48:29,520 TYPES AND ALERTING PEOPLE TO 4166 02:48:29,520 --> 02:48:33,040 OTHER SYSTEMS THEY COULD BE ON 4167 02:48:33,040 --> 02:48:35,520 THE LOOK OUT WHEN THEY'RE DOING 4168 02:48:35,520 --> 02:48:36,080 THEIR USUAL CARE FOR THESE 4169 02:48:36,080 --> 02:48:39,520 PEOPLE. 4170 02:48:39,520 --> 02:48:41,520 >>THANK YOU, DR. McCREEDY. 4171 02:48:41,520 --> 02:48:44,200 LET'S TAKE A QUESTION FROM THE 4172 02:48:44,200 --> 02:48:45,680 Q&A, LUKE. 4173 02:48:45,680 --> 02:48:50,560 >>THERE'S A FEW THAT TOUCH ON A 4174 02:48:50,560 --> 02:48:52,240 COMMON THEME HERE AROUND 4175 02:48:52,240 --> 02:48:55,720 DIAGNOSIS AND THE QUESTION IS 4176 02:48:55,720 --> 02:48:58,960 ABOUT LIMITATIONS IN SOME OF OUR 4177 02:48:58,960 --> 02:49:00,720 TRADITIONAL MEASURES. 4178 02:49:00,720 --> 02:49:02,760 SO POINTING TO DR. CHIN SAYING 4179 02:49:02,760 --> 02:49:04,080 WE NEED ONE MEASURE. 4180 02:49:04,080 --> 02:49:07,520 SOMEONE ASKED WHAT IS THAT 4181 02:49:07,520 --> 02:49:07,760 MEASURE. 4182 02:49:07,760 --> 02:49:09,640 SOMEONE ELSE MENTIONED IF 4183 02:49:09,640 --> 02:49:13,200 THERE'S DISPARITIES IN TIMELY 4184 02:49:13,200 --> 02:49:14,040 AND SPECIFIC DIAGNOSIS HOW MUCH 4185 02:49:14,040 --> 02:49:16,520 HAS TO DO WITH THE BIASES IN THE 4186 02:49:16,520 --> 02:49:17,600 MEASURES DEVELOPED OR LANGUAGE 4187 02:49:17,600 --> 02:49:20,720 BARRIERS OR THINGS LIKE THAT. 4188 02:49:20,720 --> 02:49:21,920 THEY MAY IMPACT PERFORMANCE ON 4189 02:49:21,920 --> 02:49:24,680 MEASURES. 4190 02:49:24,680 --> 02:49:26,480 I'LL STOP THERE FIRST AND I'LL 4191 02:49:26,480 --> 02:49:29,320 JUMP INTO ANOTHER ONE IN A 4192 02:49:29,320 --> 02:49:30,680 SECOND. 4193 02:49:30,680 --> 02:49:31,800 COMMENTS. 4194 02:49:31,800 --> 02:49:36,480 I DON'T KNOW NATE OR EMMANUEL 4195 02:49:36,480 --> 02:49:38,280 WANTED TO TOUCH ON THOSE BECAUSE 4196 02:49:38,280 --> 02:49:39,600 YOU COMMENTED ON THOSE IN YOUR 4197 02:49:39,600 --> 02:49:39,920 DISCUSSION. 4198 02:49:39,920 --> 02:49:44,360 >>I CAN GO FIRST. 4199 02:49:44,360 --> 02:49:45,640 YES, THERE'S CERTAINLY A NEED -- 4200 02:49:45,640 --> 02:49:47,080 THE TESTING TOOLS NEED TO BE 4201 02:49:47,080 --> 02:49:52,640 TESTED AND VALIDATED FOR DIVERSE 4202 02:49:52,640 --> 02:49:56,240 POPULATIONS. 4203 02:49:56,240 --> 02:49:58,120 WE KNOW IN OTHER DISEASE AREAS, 4204 02:49:58,120 --> 02:50:00,800 FOR EXAMPLE, MENTAL HEALTH, 4205 02:50:00,800 --> 02:50:03,480 THOSE ISSUES ARE THERE AND FOR 4206 02:50:03,480 --> 02:50:05,320 ALZHEIMER'S AND DEMENTIA THAT 4207 02:50:05,320 --> 02:50:06,520 ISSUE IS STILL THERE AND UNLESS 4208 02:50:06,520 --> 02:50:08,880 WE ADDRESS IT WE WON'T GET GOOD 4209 02:50:08,880 --> 02:50:12,640 MEASURES AND IDENTIFY WHO IS 4210 02:50:12,640 --> 02:50:15,080 TRULY SUFFERING OR HAS DEMENTIA 4211 02:50:15,080 --> 02:50:16,560 AND WHO DOESN'T. 4212 02:50:16,560 --> 02:50:22,000 THAT TESTING AN VALIDATION 4213 02:50:22,000 --> 02:50:28,440 PROCESS NEEDS TO DONE. 4214 02:50:28,440 --> 02:50:31,560 >>I WOULD ADD TOO I THINK THE 4215 02:50:31,560 --> 02:50:32,640 NEUROPSYCHOLOGISTS PROBABLY THE 4216 02:50:32,640 --> 02:50:35,280 ONES ON THIS CALL ARE BRILLIANT 4217 02:50:35,280 --> 02:50:36,400 AND HAVE FROM DOUBT THEY'LL 4218 02:50:36,400 --> 02:50:38,440 VALIDATE THE TOOLS NEEDED BUT 4219 02:50:38,440 --> 02:50:39,360 I'D ALSO RECOMMEND WE THINK OF 4220 02:50:39,360 --> 02:50:43,840 THE TOOL AS JUST A TOOL AND PUT 4221 02:50:43,840 --> 02:50:45,360 IT IN CONTEXT TO THE PERSON. 4222 02:50:45,360 --> 02:50:46,600 WHEN I THINK OF SCREENING I 4223 02:50:46,600 --> 02:50:49,360 DON'T JUST THINK OF A 15-MINUTE 4224 02:50:49,360 --> 02:50:52,280 COGNITIVE SCREENER THAT LOOKS AT 4225 02:50:52,280 --> 02:50:54,000 OBJECTIVE IMPAIRMENT JUST LOW 4226 02:50:54,000 --> 02:50:54,200 SCORER. 4227 02:50:54,200 --> 02:50:55,880 IT'S TALKING TO A PERSON ABOUT 4228 02:50:55,880 --> 02:50:57,000 WHAT ARE YOU LIVING. 4229 02:50:57,000 --> 02:50:58,600 WHAT ARE THE SYMPTOMS. 4230 02:50:58,600 --> 02:51:01,040 I FEEL LIKE DR. SHAW MENTIONED 4231 02:51:01,040 --> 02:51:02,440 SOME THINGS A PERSON COULD 4232 02:51:02,440 --> 02:51:03,200 DESCRIBE. 4233 02:51:03,200 --> 02:51:05,880 PUTTING INTO CONTEXT A PERSON'S 4234 02:51:05,880 --> 02:51:07,960 LIVED LIFE OF WHAT ARE THEIR 4235 02:51:07,960 --> 02:51:10,120 SYMPTOMS AND WHAT ARE THEY 4236 02:51:10,120 --> 02:51:11,920 NOTICING AND WHAT ARE OTHERS 4237 02:51:11,920 --> 02:51:13,560 NOTICE AND WHAT'S A POTENTIAL 4238 02:51:13,560 --> 02:51:15,320 OBJECTIVE SCORE THAT WOULD 4239 02:51:15,320 --> 02:51:17,520 TRIGGER A MORE THOROUGH 4240 02:51:17,520 --> 02:51:17,880 EVALUATION. 4241 02:51:17,880 --> 02:51:20,120 I THINK YOU COULD HAVE MULTIPLE 4242 02:51:20,120 --> 02:51:20,440 OPTIONS. 4243 02:51:20,440 --> 02:51:22,560 I DIDN'T MEAN TO IMPLY THERE ONE 4244 02:51:22,560 --> 02:51:24,400 TEST BUT I FEEL THERE COULD BE A 4245 02:51:24,400 --> 02:51:25,880 PROCESS WE DON'T NEED A 4246 02:51:25,880 --> 02:51:27,360 PHYSICIAN OR NEUROLOGIST IN 4247 02:51:27,360 --> 02:51:27,640 PARTICULAR. 4248 02:51:27,640 --> 02:51:29,560 I SAW A COMMENT OR NOT A 4249 02:51:29,560 --> 02:51:31,360 SPECIALIST BUT I DON'T THINK WE 4250 02:51:31,360 --> 02:51:32,800 NEED SPECIALISTS IN ORDER TO 4251 02:51:32,800 --> 02:51:34,760 TALK TO SOMEONE TO GET A SENSE 4252 02:51:34,760 --> 02:51:37,440 OF WHAT ARE YOU EXPERIENCING AND 4253 02:51:37,440 --> 02:51:41,600 COULD THIS BE ABNORMAL? 4254 02:51:41,600 --> 02:51:42,360 >>THANKS. 4255 02:51:42,360 --> 02:51:44,880 MAYBE ONE COMMENT RELATED TO 4256 02:51:44,880 --> 02:51:48,240 THAT SPECIFICALLY EQUIPPING NOT 4257 02:51:48,240 --> 02:51:51,120 JUST SPECIALISTS AND 4258 02:51:51,120 --> 02:51:52,080 GERIATRICIANS BUT OTHERS 4259 02:51:52,080 --> 02:51:53,120 INVOLVED IN THE CARE PROCESS 4260 02:51:53,120 --> 02:51:55,560 LIKE DEMENTIA CAREGIVERS. 4261 02:51:55,560 --> 02:51:58,080 ARE THERE RECOMMENDATIONS AROUND 4262 02:51:58,080 --> 02:52:01,000 TRAINING OR OTHER IDEAS YOU HAVE 4263 02:52:01,000 --> 02:52:04,200 ABOUT HOW TO EQUIP PEOPLE NOT 4264 02:52:04,200 --> 02:52:05,640 MEDICALLY TRAINED BUT EXPERTS IN 4265 02:52:05,640 --> 02:52:07,520 CARE GIVING TO DO A BETTER JOB 4266 02:52:07,520 --> 02:52:09,400 OF SCREENING AND MONITORING AND 4267 02:52:09,400 --> 02:52:10,840 THINGS LIKE THAT FROM A 4268 02:52:10,840 --> 02:52:18,320 MEASUREMENT PERSPECTIVE. 4269 02:52:18,320 --> 02:52:20,680 >>AGAIN, I THINK WE'RE NEVER 4270 02:52:20,680 --> 02:52:23,480 GOING TO HAVE A PERFECT TOOL OR 4271 02:52:23,480 --> 02:52:26,560 EVEN IF WE GET MULTIPLE TOOLS. 4272 02:52:26,560 --> 02:52:27,800 THERE'S FUNDAMENTAL RESEARCH 4273 02:52:27,800 --> 02:52:31,920 THAT STILL HAS TO BE DONE AROUND 4274 02:52:31,920 --> 02:52:33,600 WHAT ARE THE CAUSAL PATHWAYS 4275 02:52:33,600 --> 02:52:35,600 TOWARDS A DEMENTIA. 4276 02:52:35,600 --> 02:52:37,400 WORK WITH BRAIN AUTOPSY AND 4277 02:52:37,400 --> 02:52:38,840 LOOKING AT BRAINS IN PEOPLE THAT 4278 02:52:38,840 --> 02:52:41,440 HAVE BEEN AGING AND DONATE THEIR 4279 02:52:41,440 --> 02:52:42,560 BRAINS AT TIME OF DEATH SHOWS 4280 02:52:42,560 --> 02:52:45,680 THE PATHWAY TO DEMENTIA IS VERY 4281 02:52:45,680 --> 02:52:46,160 DIVERSE. 4282 02:52:46,160 --> 02:52:49,600 IT USUALLY DOES INCLUDE 4283 02:52:49,600 --> 02:52:51,000 ALZHEIMER'S DISEASE BUT 60% WE 4284 02:52:51,000 --> 02:52:52,320 STILL DON'T KNOW THE DRIVERS FOR 4285 02:52:52,320 --> 02:52:52,760 COGNITIVE LOSS. 4286 02:52:52,760 --> 02:52:55,040 WE HAVE MORE TO DO TO IDENTIFY 4287 02:52:55,040 --> 02:52:56,920 THE BEST TOOLS. 4288 02:52:56,920 --> 02:52:59,040 WE HAVE TO BALANCE WHAT HAPPENS 4289 02:52:59,040 --> 02:53:01,160 WITH POPULATION TOOLS THAT WE DO 4290 02:53:01,160 --> 02:53:04,320 IN LARGE GROUPS AND TAKE THAT 4291 02:53:04,320 --> 02:53:05,200 INFORMATION AND LOOK AT THE 4292 02:53:05,200 --> 02:53:06,920 PERSON IN FRONT OF US AND WHO 4293 02:53:06,920 --> 02:53:08,120 THEY COME WITH THEIR LIVED 4294 02:53:08,120 --> 02:53:10,280 EXPERIENCE AND DO THAT PRECISION 4295 02:53:10,280 --> 02:53:14,000 TEST ABOUT WHETHER THOSE THINGS 4296 02:53:14,000 --> 02:53:14,160 FIT. 4297 02:53:14,160 --> 02:53:16,360 THAT PATTERN RECOGNITION AND 4298 02:53:16,360 --> 02:53:17,640 ENGAGEMENT I THINK PEOPLE THAT 4299 02:53:17,640 --> 02:53:18,960 KNOW EACH OTHER HAVE A GOOD 4300 02:53:18,960 --> 02:53:19,880 SENSE OF THAT. 4301 02:53:19,880 --> 02:53:21,360 I ALWAYS COME BACK TO IF YOU SEE 4302 02:53:21,360 --> 02:53:29,520 SOMETHING, SAY SOMETHING. 4303 02:53:29,520 --> 02:53:31,520 THAT'S THE SIMPLEST TOOL IF A 4304 02:53:31,520 --> 02:53:33,560 CAREGIVER IS NOTICING A CHANGE, 4305 02:53:33,560 --> 02:53:34,560 WE HAVE TO GET THEM TO TALK 4306 02:53:34,560 --> 02:53:40,840 ABOUT IT AND BRING IT UP AND TO 4307 02:53:40,840 --> 02:53:42,480 BE RECEPTIVE OF SAYING LET'S 4308 02:53:42,480 --> 02:53:43,280 LOOK AT IT AND TRY TO FIGURE IT 4309 02:53:43,280 --> 02:53:53,360 OUT. 4310 02:53:55,040 --> 02:53:59,240 >>WE DON'T OFTEN SEE CAREGIVERS 4311 02:53:59,240 --> 02:54:00,120 IN THE ELECTRONIC HEALTH RECORD 4312 02:54:00,120 --> 02:54:02,480 AND IN THE NOTES WE CAN SEE THE 4313 02:54:02,480 --> 02:54:04,520 DOCTOR TAKES A NOTE THE PERSON 4314 02:54:04,520 --> 02:54:06,360 WHO ACCOMPANIED THEM SAID THEY 4315 02:54:06,360 --> 02:54:10,000 HAD THIS OR THAT GOING ON. 4316 02:54:10,000 --> 02:54:12,840 THAT'S A WAY CAREGIVERS CAN 4317 02:54:12,840 --> 02:54:14,760 APPEAR IN THE ELECTRONIC HEALTH 4318 02:54:14,760 --> 02:54:15,880 RECORD OF SOMEONE LIVING WITH 4319 02:54:15,880 --> 02:54:18,280 DEMENTIA AND GETS TO THEIR 4320 02:54:18,280 --> 02:54:19,400 KNOWING OF THE EARLY SYMPTOMS 4321 02:54:19,400 --> 02:54:22,240 AND SIGNS THAT MAY BE ANOTHER 4322 02:54:22,240 --> 02:54:32,760 WAY TO LOOK AT THAT INFORMATION. 4323 02:54:34,880 --> 02:54:39,480 4324 02:54:39,480 --> 02:54:42,640 >>IF I MAY, IT WAS MY CARE 4325 02:54:42,640 --> 02:54:44,360 PARTNER, MY HUSBAND THAT NOTICED 4326 02:54:44,360 --> 02:54:47,800 THE MEMORY ISSUES AND MY SPEECH, 4327 02:54:47,800 --> 02:54:51,240 MY THOUGHT PROCESS WAS VERY 4328 02:54:51,240 --> 02:54:51,520 SPORADIC. 4329 02:54:51,520 --> 02:54:56,120 HE'S THE ONE THAT NOTICED THE 4330 02:54:56,120 --> 02:54:57,400 LITTLE THINGS THAT JUST SAID 4331 02:54:57,400 --> 02:54:59,280 SOMETHING IS WRONG. 4332 02:54:59,280 --> 02:55:01,560 THIS IS NOT YOU. 4333 02:55:01,560 --> 02:55:08,240 AND I'M AN EDUCATED MOSTLY ONE 4334 02:55:08,240 --> 02:55:10,760 THAT STRIVES TO EXCEED. 4335 02:55:10,760 --> 02:55:12,280 SOMEONE FROM THE OUTSIDE WILL 4336 02:55:12,280 --> 02:55:19,120 LOOK AT ME AND SAY, NA, IT CAN'T 4337 02:55:19,120 --> 02:55:19,280 BE. 4338 02:55:19,280 --> 02:55:22,960 BUT HE KNOWS HE KNEW BEFORE I 4339 02:55:22,960 --> 02:55:23,280 REALIZED. 4340 02:55:23,280 --> 02:55:28,880 HE STILL SEES THINGS THAT 4341 02:55:28,880 --> 02:55:29,120 HAPPEN. 4342 02:55:29,120 --> 02:55:34,200 I DON'T SEE IT IN MYSELF BUT HE 4343 02:55:34,200 --> 02:55:36,960 DOES AND IT'S CRITICAL THE 4344 02:55:36,960 --> 02:55:42,040 PARTNER BE A PART OF THE 4345 02:55:42,040 --> 02:55:43,720 DIAGNOSTIC PROCESS. 4346 02:55:43,720 --> 02:55:47,120 THERE WAS A TAKE. 4347 02:55:47,120 --> 02:55:51,360 SO YOU ARE AN EXAMPLE OF HOW TO 4348 02:55:51,360 --> 02:55:53,600 TAKE A DIAGNOSIS AND TAKE IT 4349 02:55:53,600 --> 02:55:55,920 FULL ON AND ADVOCATE FOR 4350 02:55:55,920 --> 02:55:57,000 YOURSELF AND WORK WITH YOUR 4351 02:55:57,000 --> 02:56:03,440 PARTNER AND CARE PROVIDERS. 4352 02:56:03,440 --> 02:56:04,960 SOMEONE HAS A QUESTION ON THE 4353 02:56:04,960 --> 02:56:06,840 NEGATIVE IMPACT ON PEOPLE WHO 4354 02:56:06,840 --> 02:56:08,400 HAVE A DIAGNOSIS AND IS THERE 4355 02:56:08,400 --> 02:56:10,600 RESEARCH OR OTHER THINGS YOU'RE 4356 02:56:10,600 --> 02:56:12,480 AWARE OF LIKE DEPRESSION OR 4357 02:56:12,480 --> 02:56:13,840 OTHER NEGATIVE OUTCOMES PEOPLE 4358 02:56:13,840 --> 02:56:14,600 HAVE EXPERIENCED? 4359 02:56:14,600 --> 02:56:16,600 >>I DID IT. 4360 02:56:16,600 --> 02:56:19,760 IT TOOK A WHILE. 4361 02:56:19,760 --> 02:56:21,320 HAVING THAT COUNSELOR THAT 4362 02:56:21,320 --> 02:56:24,320 SPECIALIZED IN DEMENTIAS WAS 4363 02:56:24,320 --> 02:56:25,640 HELPFUL BUT I WENT THROUGH 4364 02:56:25,640 --> 02:56:26,640 SERIOUS DEPRESSION AND TO BE 4365 02:56:26,640 --> 02:56:28,120 HONEST I DIDN'T WANT TO LIVE. 4366 02:56:28,120 --> 02:56:29,800 I DIDN'T WANT TO PUT MY CHILDREN 4367 02:56:29,800 --> 02:56:34,680 AND FAMILY THROUGH THIS. 4368 02:56:34,680 --> 02:56:36,680 SO DEPRESSION, I TELL PEOPLE 4369 02:56:36,680 --> 02:56:40,320 IT'S OKAY TO TAKE AN 4370 02:56:40,320 --> 02:56:40,680 ANTIDEPRESSANT. 4371 02:56:40,680 --> 02:56:42,200 IT'S ALL RIGHT IF IT'S GOING TO 4372 02:56:42,200 --> 02:56:42,760 HELP. 4373 02:56:42,760 --> 02:56:44,080 DON'T SHY AWAY BECAUSE OF THE 4374 02:56:44,080 --> 02:56:48,320 STIGMA OF IT. 4375 02:56:48,320 --> 02:56:53,040 WHAT WOULD HELP IS 4376 02:56:53,040 --> 02:56:54,360 SOCIALIZATION, EDUCATION AND 4377 02:56:54,360 --> 02:56:58,160 ALSO PRACTICAL DAY TO DAY TOOLS. 4378 02:56:58,160 --> 02:57:00,680 A TOOLBOX. 4379 02:57:00,680 --> 02:57:02,200 SO TECHNOLOGY. 4380 02:57:02,200 --> 02:57:07,040 I USE ALEXA, I USE TILES. 4381 02:57:07,040 --> 02:57:11,360 MY HUSBAND HAS ALARM ON THE 4382 02:57:11,360 --> 02:57:12,960 DOORS IN CASE I WANDER. 4383 02:57:12,960 --> 02:57:14,480 THERE'S SO MUCH OUT THERE PEOPLE 4384 02:57:14,480 --> 02:57:19,360 CAN BE EXPOSED TO TO HELP MAKE 4385 02:57:19,360 --> 02:57:20,560 YOU FEEL LIKE YOU'RE STILL A 4386 02:57:20,560 --> 02:57:20,800 PERSON. 4387 02:57:20,800 --> 02:57:22,320 YOU HAVE VALUE STILL. 4388 02:57:22,320 --> 02:57:23,760 YOU'RE STILL YOU. 4389 02:57:23,760 --> 02:57:26,040 THERE'S CHANGES, YES, DRIVING. 4390 02:57:26,040 --> 02:57:27,720 MORE OPTIONS FOR TECHNOLOGY. 4391 02:57:27,720 --> 02:57:28,600 I CAN'T DRIVE ANYMORE. 4392 02:57:28,600 --> 02:57:32,480 I WISH I COULD. 4393 02:57:32,480 --> 02:57:34,480 AND THEN I THINK SOCIAL 4394 02:57:34,480 --> 02:57:37,120 ACTIVITIES FOR ME I WAS ABRUPTLY 4395 02:57:37,120 --> 02:57:40,960 CUT FROM AN OVER 30-YEAR PLUS 4396 02:57:40,960 --> 02:57:45,040 PROFESSIONAL CAREER. 4397 02:57:45,040 --> 02:57:48,000 I FOUND I LOST A HUGE PART OF 4398 02:57:48,000 --> 02:57:48,360 ME. 4399 02:57:48,360 --> 02:57:51,000 BEING ABLE TO HAVE DIFFERENT 4400 02:57:51,000 --> 02:57:53,760 SOCIAL ACTIVITIES AND DIFFERENT 4401 02:57:53,760 --> 02:57:56,840 PROGRAMS AND/OR GAMES OR 4402 02:57:56,840 --> 02:57:58,120 WHATEVER TO HELP THAT PERSON 4403 02:57:58,120 --> 02:57:59,400 LIVE AS INDEPENDENTLY AND 4404 02:57:59,400 --> 02:58:03,560 QUALITY. 4405 02:58:03,560 --> 02:58:07,720 >>THANK YOU VERY MUCH. 4406 02:58:07,720 --> 02:58:10,320 I'LL CHANGE TOPICS FOR A SECOND. 4407 02:58:10,320 --> 02:58:12,360 THERE'S A QUESTION EARLY ON 4408 02:58:12,360 --> 02:58:14,280 ABOUT SOME OF THE RACIAL AND 4409 02:58:14,280 --> 02:58:15,160 ETHNIC DIFFERENCES THAT WERE 4410 02:58:15,160 --> 02:58:22,400 OBSERVED AND REPORTED. 4411 02:58:22,400 --> 02:58:24,720 SPECIFICALLY REGARDING 4412 02:58:24,720 --> 02:58:28,720 AMERIAMERICAN 4413 02:58:28,720 --> 02:58:30,360 INDIAN AND ALASKAN NATIVE RATES 4414 02:58:30,360 --> 02:58:32,800 AND THE RATES CONFLICT WITH THE 4415 02:58:32,800 --> 02:58:34,520 STUDIES THAT ARE POPULATION 4416 02:58:34,520 --> 02:58:35,800 SPECIFIC IN THE RISK FACTORS 4417 02:58:35,800 --> 02:58:39,080 WHICH POINT SIGNIFICANTLY TO 4418 02:58:39,080 --> 02:58:41,960 DISPROPORTIONATE RATES OF 4419 02:58:41,960 --> 02:58:45,840 FACTORS AMONG POPULATIONS WITH 4420 02:58:45,840 --> 02:58:49,240 SOME EVEN HIGHER THAN BLACK 4421 02:58:49,240 --> 02:58:52,000 POPULATIONS IN THE STUDIES. 4422 02:58:52,000 --> 02:58:54,320 FEEL FREE TO WEIGH IN. 4423 02:58:54,320 --> 02:58:55,920 ARE THERE BIGGER OBSERVATIONS 4424 02:58:55,920 --> 02:58:58,880 YOU MADE OR SPECIFIC FINDINGS 4425 02:58:58,880 --> 02:59:00,960 BECAUSE OF PECULIARITY IN DATA 4426 02:59:00,960 --> 02:59:02,840 SETS OR HOW WE COLLECT DATA OR 4427 02:59:02,840 --> 02:59:11,320 THOUGHTS ON THAT QUESTION. 4428 02:59:11,320 --> 02:59:14,680 >>AROUND THE VETERANS AFFAIRS 4429 02:59:14,680 --> 02:59:15,000 POPULATION. 4430 02:59:15,000 --> 02:59:18,000 IT'S DIFFERENT FROM THE GENERAL 4431 02:59:18,000 --> 02:59:18,920 POPULATION. 4432 02:59:18,920 --> 02:59:20,240 THERE ARE PROBABLY AT THE HIGHER 4433 02:59:20,240 --> 02:59:24,520 RISK OF DEMENTIA, ONE WOULD 4434 02:59:24,520 --> 02:59:26,880 ARGUE BECAUSE OF THE TRAUMA 4435 02:59:26,880 --> 02:59:27,480 HAVING BEEN ON THE FIELD OF 4436 02:59:27,480 --> 02:59:37,600 BATTLE. 4437 02:59:42,360 --> 02:59:43,960 WHAT WE SEE IN THE POPULATION IS 4438 02:59:43,960 --> 02:59:44,240 DIFFERENT. 4439 02:59:44,240 --> 02:59:49,520 THIS SEEMS TO SUGGEST THERE ARE 4440 02:59:49,520 --> 02:59:51,160 DIFFERENT MECHANISMS AND COULD 4441 02:59:51,160 --> 02:59:54,120 BE RELATED TO DIFFERENCES IN 4442 02:59:54,120 --> 02:59:58,680 COMORBIDITIES IN THE GENERAL 4443 02:59:58,680 --> 03:00:00,280 POPULATION VERSUS THE GENERAL 4444 03:00:00,280 --> 03:00:00,560 POPULATION. 4445 03:00:00,560 --> 03:00:11,080 THAT'S ONE HYPOTHESIS WE HAVE. 4446 03:00:29,320 --> 03:00:31,240 >>THERE'S COMMENTS IN THE Q&A 4447 03:00:31,240 --> 03:00:33,080 THAT ARE GOOD BUT TOUCH ON THE 4448 03:00:33,080 --> 03:00:33,600 THEMES WE'VE ALREADY BEEN 4449 03:00:33,600 --> 03:00:43,800 ADDRESSING. 4450 03:00:44,280 --> 03:00:45,880 I'LL BRING ONE UP IN THE 4451 03:00:45,880 --> 03:00:46,520 INTERIM. 4452 03:00:46,520 --> 03:00:48,000 THERE'S QUESTIONS ABOUT 4453 03:00:48,000 --> 03:00:50,080 COMPLICATIONS RELATED TO COVID 4454 03:00:50,080 --> 03:00:52,400 AND DIAGNOSIS AND WONDER IF THE 4455 03:00:52,400 --> 03:00:55,000 TOPIC OF COMORBIDITIES AND 4456 03:00:55,000 --> 03:00:55,840 DIFFERENTIATING EARLY CHANGES 4457 03:00:55,840 --> 03:00:59,800 FROM AGE-RELATED CHANGE OR OTHER 4458 03:00:59,800 --> 03:01:01,400 ILLNESSES THAT IMPACT COGNITIVE 4459 03:01:01,400 --> 03:01:08,440 FUNCTION LIKE COVID EMERGING 4460 03:01:08,440 --> 03:01:11,400 POST-COVID SYMPTOMS. 4461 03:01:11,400 --> 03:01:13,120 DO YOU HAVE GUIDANCE HOW TO 4462 03:01:13,120 --> 03:01:16,120 NEGOTIATE THE FACTORS THAT CAN 4463 03:01:16,120 --> 03:01:17,680 IMPACT THINGS LIKE COGNITIVE 4464 03:01:17,680 --> 03:01:19,280 FUNCTION THAT MAY HAVE DIFFERENT 4465 03:01:19,280 --> 03:01:27,160 ORIGINS OR ROUTES? 4466 03:01:27,160 --> 03:01:29,000 >>IN MY DISCUSSIONS WITH 4467 03:01:29,000 --> 03:01:33,560 PRIMARY CARE PHYSICIANS, THIS IS 4468 03:01:33,560 --> 03:01:36,880 ALWAYS THE CHALLENGE OF MAKING 4469 03:01:36,880 --> 03:01:40,240 THE DIAGNOSIS BECAUSE OF VARIOUS 4470 03:01:40,240 --> 03:01:41,480 COMORBIDITIES SO DEMENTIA 4471 03:01:41,480 --> 03:01:43,360 DOESN'T TEND TO HAPPEN BY ITSELF 4472 03:01:43,360 --> 03:01:44,680 AND TENDS TO BE SURROUNDED BY 4473 03:01:44,680 --> 03:01:45,880 OTHER CONDITIONS. 4474 03:01:45,880 --> 03:01:47,960 I THINK THAT'S WHERE PRIMARY 4475 03:01:47,960 --> 03:01:50,640 CARE PHYSICIANS USUALLY ARE GOOD 4476 03:01:50,640 --> 03:01:53,480 AT STARTING THE UNDIFFERENTIATED 4477 03:01:53,480 --> 03:01:55,200 PROCESS AND FIGURE OUT PATTERNS 4478 03:01:55,200 --> 03:01:58,360 BASED ON COLLECTING A HISTORY, 4479 03:01:58,360 --> 03:02:01,280 DOING AN EXAMINE AND USING TIME 4480 03:02:01,280 --> 03:02:06,760 TO HELP US TEST SOME IDEAS OUT 4481 03:02:06,760 --> 03:02:11,480 AND SOMETHING ELSE IS HAPPENING 4482 03:02:11,480 --> 03:02:13,520 AND SEEING WHAT HAPPENS WHETHER 4483 03:02:13,520 --> 03:02:16,000 THOSE HYPOTHESES OF WHAT MIGHT 4484 03:02:16,000 --> 03:02:16,680 BE CAUSING THE COGNITIVE CHANGES 4485 03:02:16,680 --> 03:02:19,520 ARE HANDLED. 4486 03:02:19,520 --> 03:02:23,000 AND WE HAVE CHALLENGES WITH 4487 03:02:23,000 --> 03:02:25,520 OTHER CONDITIONS SUCH AS COVID 4488 03:02:25,520 --> 03:02:27,080 EXPOSURES AND VARIOUS OTHER 4489 03:02:27,080 --> 03:02:28,120 CONDITIONS LIKE VASCULAR 4490 03:02:28,120 --> 03:02:30,480 DISEASES AND WE HAVE TO BE AWARE 4491 03:02:30,480 --> 03:02:31,920 OF THEM AND CONTINUE TO ADJUST 4492 03:02:31,920 --> 03:02:38,280 FOR THE PERSON IN FRONT OF US. 4493 03:02:38,280 --> 03:02:40,360 >>NATE, GO AHEAD. 4494 03:02:40,360 --> 03:02:45,040 >>I WAS GOING ADD THAT IN THIS 4495 03:02:45,040 --> 03:02:46,400 FIELD WE HAVE TO BE COMFORTABLE 4496 03:02:46,400 --> 03:02:48,120 NOT KNOWING EVERYTHING AND I 4497 03:02:48,120 --> 03:02:50,680 THINK WE'RE GETTING THERE BUT 4498 03:02:50,680 --> 03:02:52,840 THE IDEA OF COVID SCIENTISTS ARE 4499 03:02:52,840 --> 03:02:55,120 LOOKING INTO THE MECHANISMS AND 4500 03:02:55,120 --> 03:02:56,880 POTENTIAL CONTRIBUTION BUT WE 4501 03:02:56,880 --> 03:02:58,640 JUST DON'T KNOW. 4502 03:02:58,640 --> 03:03:05,400 IN WISCONSIN WE TALK A LOT ABOUT 4503 03:03:05,400 --> 03:03:08,200 LYME'S DISEASE AND THE IDEA OF 4504 03:03:08,200 --> 03:03:11,280 INFLAMMATION AND WE TALK TO THE 4505 03:03:11,280 --> 03:03:18,240 CLINICAL SYNDROME AND DEMENTIA 4506 03:03:18,240 --> 03:03:20,520 AND WE DIAGNOSE AND GETTING TO 4507 03:03:20,520 --> 03:03:24,880 THE ETIOLOGY IS HARD AND 4508 03:03:24,880 --> 03:03:25,920 HOPEFULLY WITH MORE BIOMARKERS 4509 03:03:25,920 --> 03:03:27,920 WELL GET BETTER BUT ALLOWS FOR 4510 03:03:27,920 --> 03:03:30,440 US TO BE OPEN TO WHAT IS IT THAT 4511 03:03:30,440 --> 03:03:31,000 MATTERS TO YOU. 4512 03:03:31,000 --> 03:03:32,920 WHAT CAN WE WORK ON AND SO 4513 03:03:32,920 --> 03:03:34,920 THERE'S A DUALITY OF TALKING 4514 03:03:34,920 --> 03:03:36,840 ABOUT ETIOLOGY AND ABOUT BRAIN 4515 03:03:36,840 --> 03:03:39,960 HEALTH AND THE IDEA WE CAN DO 4516 03:03:39,960 --> 03:03:41,800 THINGS TO IMPROVE OUR SYMPTOMS 4517 03:03:41,800 --> 03:03:42,400 POTENTIALLY AS WELL AS OUR 4518 03:03:42,400 --> 03:03:42,920 QUALITY OF LIFE. 4519 03:03:42,920 --> 03:03:45,520 I THINK YOU CAN DO BOTH AT THE 4520 03:03:45,520 --> 03:03:46,360 SAME TIME. 4521 03:03:46,360 --> 03:03:47,520 WHILE STILL ACKNOWLEDGING I 4522 03:03:47,520 --> 03:03:49,400 DON'T KNOW EXACTLY WHAT THE 4523 03:03:49,400 --> 03:03:51,240 UNDERLYING PATHOLOGY IS. 4524 03:03:51,240 --> 03:03:54,920 >>I RECEIVED A COMMENT FROM 4525 03:03:54,920 --> 03:03:58,520 SOMEONE ASKING ABOUT THE 4526 03:03:58,520 --> 03:04:04,720 COMPLEXITIES OF DIAGNOSING MIXED 4527 03:04:04,720 --> 03:04:08,160 DEMENTIA TO DR. CHIN'S POINTS 4528 03:04:08,160 --> 03:04:12,000 ADD A LAYER OF COMPLEXITY TO ALL 4529 03:04:12,000 --> 03:04:14,920 THIS. 4530 03:04:14,920 --> 03:04:17,160 >>FROM A PATIENT STANDPOINT, 4531 03:04:17,160 --> 03:04:18,720 WHEN SOMEBODY GOES IN AND THEY 4532 03:04:18,720 --> 03:04:20,640 HAVE STOMACH PAIN OR SOMETHING 4533 03:04:20,640 --> 03:04:26,360 LIKE THAT, WHEN YOU DO YOUR 4534 03:04:26,360 --> 03:04:27,520 INVESTIGATIONS YOU'RE 4535 03:04:27,520 --> 03:04:28,600 INVESTIGATIONS ARE THOROUGH 4536 03:04:28,600 --> 03:04:31,160 LOOKING AT ALL ASPECTS. 4537 03:04:31,160 --> 03:04:32,920 MY ONLY ASK IS INCLUDING THE 4538 03:04:32,920 --> 03:04:37,720 POSSIBILITY OF MCI OR DEMENTIA 4539 03:04:37,720 --> 03:04:40,160 RELATED SYNDROME WHEN LOOKING AT 4540 03:04:40,160 --> 03:04:40,960 EVEN YOUNGER PEOPLE TO CAPTURE 4541 03:04:40,960 --> 03:04:48,000 THE EARLY STAGE. 4542 03:04:48,000 --> 03:04:49,320 >>THANK YOU SO MUCH. 4543 03:04:49,320 --> 03:04:50,040 GREAT POINTS. 4544 03:04:50,040 --> 03:04:53,240 I THINK WE'RE JUST ABOUT OUT OF 4545 03:04:53,240 --> 03:04:53,440 TIME. 4546 03:04:53,440 --> 03:04:57,000 I DON'T KNOW IF WE HAVE TIME FOR 4547 03:04:57,000 --> 03:04:57,920 ANOTHER QUESTION, LUKE. 4548 03:04:57,920 --> 03:05:00,760 A ROUND OF APPLAUSE FOR OUR 4549 03:05:00,760 --> 03:05:02,280 WONDERFUL SESSION 2 GROUP AND 4550 03:05:02,280 --> 03:05:03,960 WE'LL NOW HAND IT OVER TO OUR 4551 03:05:03,960 --> 03:05:04,280 CO-CHAIRS. 4552 03:05:04,280 --> 03:05:12,480 THANK YOU. 4553 03:05:12,480 --> 03:05:13,960 >>THANK YOU FOR THE EXCELLENT 4554 03:05:13,960 --> 03:05:17,120 PRESENTATIONS IN SESSION 2 AND 4555 03:05:17,120 --> 03:05:18,200 THE IMPORTANT DISCUSSION 4556 03:05:18,200 --> 03:05:18,520 AFTERWARDS. 4557 03:05:18,520 --> 03:05:20,800 WE'LL INTERESTING TO OUR PLENARY 4558 03:05:20,800 --> 03:05:24,200 TALK CHALLENGES AND BEST 4559 03:05:24,200 --> 03:05:27,200 PRACTICES FOR DEVELOPMENT AND 4560 03:05:27,200 --> 03:05:28,240 PREVENTION FOR PERSONS LIVING 4561 03:05:28,240 --> 03:05:30,440 WITH DEMENTIA AND CARE PARTNERS. 4562 03:05:30,440 --> 03:05:33,280 OUR PRESENTERS, DR. COLLINS 4563 03:05:33,280 --> 03:05:38,680 FOLLOWED BY A DISCUSSION 4564 03:05:38,680 --> 03:05:42,800 MODERATED BY DR. ONKEN AND OUR 4565 03:05:42,800 --> 03:05:45,920 PRESENTERS, DR. HEFFNER AND 4566 03:05:45,920 --> 03:05:48,760 DR. MAUSBACH AND DR. McCRAE. 4567 03:05:48,760 --> 03:05:59,120 I WELCOME DR. COLLINS. 4568 03:05:59,600 --> 03:06:00,160 >>THANK YOU, IT'S GREAT TO BE 4569 03:06:00,160 --> 03:06:10,280 HERE. 4570 03:06:15,240 --> 03:06:16,560 >>THANK YOU. 4571 03:06:16,560 --> 03:06:16,760 OKAY. 4572 03:06:16,760 --> 03:06:18,160 IT'S REALLY GREAT TO BE HERE. 4573 03:06:18,160 --> 03:06:19,720 THANK YOU SO MUCH FOR INVITING 4574 03:06:19,720 --> 03:06:22,360 ME AND GIVING ME A CHANCE TO 4575 03:06:22,360 --> 03:06:30,760 TALK ABOUT SOME NEW METHOD 4576 03:06:30,760 --> 03:06:31,520 OLOGICAL DEVELOPMENTS IN THIS 4577 03:06:31,520 --> 03:06:41,640 AREA. 4578 03:06:54,280 --> 03:06:56,000 HERE'S AN OUTLINE OF MY TALK 4579 03:06:56,000 --> 03:06:56,800 TODAY. 4580 03:06:56,800 --> 03:07:00,160 I'M GOING TO TALK ABOUT PLANET 4581 03:07:00,160 --> 03:07:02,480 EARTH'S APPROACH TO INVENTION 4582 03:07:02,480 --> 03:07:04,160 DEVELOPMENT AND EVALUATION AND 4583 03:07:04,160 --> 03:07:05,720 INTRODUCE ANOTHER PLANET YOU MAY 4584 03:07:05,720 --> 03:07:07,440 NOT HAVE HEARD OF, PLANET TERRA 4585 03:07:07,440 --> 03:07:10,040 AND THEY HAVE THEIR OWN STORY OF 4586 03:07:10,040 --> 03:07:15,360 DEMENTIA CARE AND PREVENTIONS 4587 03:07:15,360 --> 03:07:20,720 AND THEN WHERE TO LEARN MORE. 4588 03:07:20,720 --> 03:07:23,120 HERE ON PLANET EARTH WE USE THE 4589 03:07:23,120 --> 03:07:24,520 CLASSICAL TREATMENT PACKAGE 4590 03:07:24,520 --> 03:07:26,400 APPROACH FOR INTERVENTION 4591 03:07:26,400 --> 03:07:28,360 DEVELOPMENT AND EVALUATION. 4592 03:07:28,360 --> 03:07:30,040 WE HAVE USED IT FOR PRETTY MUCH 4593 03:07:30,040 --> 03:07:31,800 THE ENTIRE HISTORY OF 4594 03:07:31,800 --> 03:07:34,400 INTERVENTION DEVELOPMENT AND 4595 03:07:34,400 --> 03:07:34,720 EVALUATION. 4596 03:07:34,720 --> 03:07:37,000 THIS APPROACH ANY COMPONENTS OF 4597 03:07:37,000 --> 03:07:38,960 THE INTERVENTION ARE PERHAPS 4598 03:07:38,960 --> 03:07:44,120 PILOT TESTED AND THEN ASSEMBLED 4599 03:07:44,120 --> 03:07:46,080 INTO AN INTERVENTION PACKAGE AND 4600 03:07:46,080 --> 03:07:51,560 AS A PACKAGE IT'S EVALUATED IN 4601 03:07:51,560 --> 03:07:54,840 CLASSICAL EVALUATION RANDOMIZED 4602 03:07:54,840 --> 03:07:56,560 CONTROL TRIAL AN EXPERIMENTAL 4603 03:07:56,560 --> 03:07:57,280 DESIGN. 4604 03:07:57,280 --> 03:07:58,320 USUALLY THERE'S TWO EXPERIMENTAL 4605 03:07:58,320 --> 03:08:01,480 CONDITIONS OR ARMS AND ONE OF 4606 03:08:01,480 --> 03:08:02,640 THOSE PEOPLE ARE RANDOMLY 4607 03:08:02,640 --> 03:08:03,880 ASSIGNED TO ONE OR THE OTHER AND 4608 03:08:03,880 --> 03:08:07,280 IN ONE OF THEM AND USUALLY 4609 03:08:07,280 --> 03:08:08,480 THERE'S TWO A PARTICIPANT WILL 4610 03:08:08,480 --> 03:08:10,680 UNDER GO THE INTERVENTION AND 4611 03:08:10,680 --> 03:08:12,760 THEN THE OTHER ONE IS A CONTROL. 4612 03:08:12,760 --> 03:08:16,000 SO THE IDEA IS A DIRECT 4613 03:08:16,000 --> 03:08:20,400 COMPARISON FOR THE PERFORMANCE 4614 03:08:20,400 --> 03:08:23,520 OF THE INTERVENTION TO THE 4615 03:08:23,520 --> 03:08:25,040 CONTROL CONDITION. 4616 03:08:25,040 --> 03:08:27,960 THE VAST MAJORITY USES THIS 4617 03:08:27,960 --> 03:08:33,640 EVALUATION RANDOMIZED CONTROL 4618 03:08:33,640 --> 03:08:36,440 TRIAL OR CLINICAL TRIAL 4619 03:08:36,440 --> 03:08:38,440 SOMETIMES CALLED TO THE 4620 03:08:38,440 --> 03:08:40,400 EXCLUSION OF ALMOST ANY OTHER 4621 03:08:40,400 --> 03:08:41,320 EXPERIMENTAL DESIGN. 4622 03:08:41,320 --> 03:08:43,560 THERE'S A RECENTLY DISCOVERED 4623 03:08:43,560 --> 03:08:47,200 PLANET IDENTICAL TO EARTH. 4624 03:08:47,200 --> 03:08:50,040 THE ONLY DIFFERENCE IS THAT 4625 03:08:50,040 --> 03:08:51,040 EARTH HAS BEHAVIORAL 4626 03:08:51,040 --> 03:08:54,920 INTERVENTIONS IN DEMENTIA CARE 4627 03:08:54,920 --> 03:08:56,120 AND TERRA DOES NOT YET HAVE 4628 03:08:56,120 --> 03:08:58,280 INTERVENTIONS IN DEMENTIA CARE. 4629 03:08:58,280 --> 03:09:01,520 COME WITH ME ON THE SPACE SHIP 4630 03:09:01,520 --> 03:09:03,000 AND WE'RE GOING TO PLANET TERRA 4631 03:09:03,000 --> 03:09:04,280 AND LOOK AT WHAT THEY'RE DOING 4632 03:09:04,280 --> 03:09:07,520 TO DO. 4633 03:09:07,520 --> 03:09:09,480 TERRA'S OBJECTIVES ARE TO BUILD 4634 03:09:09,480 --> 03:09:11,960 A KNOWLEDGE BASE ABOUT WHAT 4635 03:09:11,960 --> 03:09:14,000 DEMENTIA AND DEMENTIA CARE 4636 03:09:14,000 --> 03:09:16,000 INTERVENTION STRATEGIES WORK, 4637 03:09:16,000 --> 03:09:21,000 FOR WHOM AND WHY. 4638 03:09:21,000 --> 03:09:21,800 FIRST, INHERENT KNOWLEDGE BASE 4639 03:09:21,800 --> 03:09:26,560 THEY WANT TO USE IT TO DEVELOP 4640 03:09:26,560 --> 03:09:28,000 INTERVENTIONS WITH IMMEDIATE 4641 03:09:28,000 --> 03:09:31,240 HIGH PUBLIC HEALTH IMPACT. 4642 03:09:31,240 --> 03:09:32,200 THEY WANT IMMEDIATE HIGH PUBLIC 4643 03:09:32,200 --> 03:09:34,480 HEALTH IMPACT AND THIRD TO KEEP 4644 03:09:34,480 --> 03:09:39,240 MAKING IMPROVEMENTS OVER TIME. 4645 03:09:39,240 --> 03:09:39,960 IMMEDIATE HIGH IMPACT AND 4646 03:09:39,960 --> 03:09:43,880 IMPROVEMENTS OVER TIME. 4647 03:09:43,880 --> 03:09:45,760 TERRA HAS BEEN WATCHING EARTH 4648 03:09:45,760 --> 03:09:48,000 AND WHAT WE'VE BEEN DOING AND 4649 03:09:48,000 --> 03:09:48,880 THOUGHT THEY'D START WITH A 4650 03:09:48,880 --> 03:09:54,240 TREATMENT PACKAGE APPROACH AND 4651 03:09:54,240 --> 03:09:57,000 THEN RE-EVALUATE. 4652 03:09:57,000 --> 03:09:59,040 THE CLASSICAL TREATMENT APPROACH 4653 03:09:59,040 --> 03:10:03,440 FOR FIVE YEARS AND 4654 03:10:03,440 --> 03:10:03,760 RE-EVALUATION. 4655 03:10:03,760 --> 03:10:05,000 THEY'LL IDENTIFY THEIR 4656 03:10:05,000 --> 03:10:06,120 COMPONENTS AND PUT THEM TOGETHER 4657 03:10:06,120 --> 03:10:11,280 IN AN INTERVENTION AS A PACKAGE 4658 03:10:11,280 --> 03:10:16,840 AND EVALUATE IT IN CLASSICAL 4659 03:10:16,840 --> 03:10:21,960 EVALUATION RCT. 4660 03:10:21,960 --> 03:10:25,400 SO FIVE YEARS GO BY AND LET'S 4661 03:10:25,400 --> 03:10:28,920 LOOK AT WHAT TARA CONCLUDED. 4662 03:10:28,920 --> 03:10:33,800 IT LOOKED AT THE COHIRNT 4663 03:10:33,800 --> 03:10:37,520 KNOWLEDGE BASE AND NOTICED WHEN 4664 03:10:37,520 --> 03:10:42,520 THEY THE APPROACH A DETECTABLE 4665 03:10:42,520 --> 03:10:45,080 AFFECT IT WASN'T CLEAR WHY IT 4666 03:10:45,080 --> 03:10:45,320 WORKED. 4667 03:10:45,320 --> 03:10:46,920 THE REASON WAS ALL THE 4668 03:10:46,920 --> 03:10:48,280 COMPONENTS WERE INCLUDED IN THE 4669 03:10:48,280 --> 03:10:48,800 TREATMENT GROUP. 4670 03:10:48,800 --> 03:10:50,880 KNOWLEDGE WERE INCLUDED IN THE 4671 03:10:50,880 --> 03:10:51,560 CONTROL GROUP. 4672 03:10:51,560 --> 03:10:54,360 THEY COULDN'T DISENTANGLE THE 4673 03:10:54,360 --> 03:10:57,400 AFFECTS OF THE INDIVIDUAL. 4674 03:10:57,400 --> 03:10:59,960 IT WASN'T CLEAR WHICH WERE 4675 03:10:59,960 --> 03:11:02,520 WORKING AND WHICH WERE NOT. 4676 03:11:02,520 --> 03:11:04,080 WHEN AN INTERVENTION DOES NOT 4677 03:11:04,080 --> 03:11:08,400 SHOW A SIGNIFICANT EFFECT IN THE 4678 03:11:08,400 --> 03:11:11,680 RCT, IN OTHER WORDS, THE RCT DID 4679 03:11:11,680 --> 03:11:14,000 NOT INDICATE THE INTERVENTION 4680 03:11:14,000 --> 03:11:15,960 WAS HAVING ANY EFFECT IT WASN'T 4681 03:11:15,960 --> 03:11:22,160 CLEAR WHY IT DID NOT WORK. 4682 03:11:22,160 --> 03:11:23,360 IT DIDN'T PROVIDE A SENSE OF 4683 03:11:23,360 --> 03:11:25,120 WHAT THE NEXT STEPS SHOULD BE. 4684 03:11:25,120 --> 03:11:30,160 THE CONCLUSION WAS THEY WERE NOT 4685 03:11:30,160 --> 03:11:31,800 SUCCESSFULLY BUILDING A 4686 03:11:31,800 --> 03:11:34,640 KNOWLEDGE BASE. 4687 03:11:34,640 --> 03:11:38,400 THE SECOND OBJECTIVE WAS 4688 03:11:38,400 --> 03:11:39,320 IMMEDIATE MY PUBLIC HEALTH 4689 03:11:39,320 --> 03:11:39,560 IMPACT. 4690 03:11:39,560 --> 03:11:41,800 MOST THE INVENTIONS WERE TOO 4691 03:11:41,800 --> 03:11:42,960 EXPENSIVE, COMPLEX OR BURDENSOME 4692 03:11:42,960 --> 03:11:45,920 TO BE IMPLEMENTED. 4693 03:11:45,920 --> 03:11:47,320 THE REASON WAS THAT THE 4694 03:11:47,320 --> 03:11:48,680 SCIENTISTS WERE FOCUSSED ON 4695 03:11:48,680 --> 03:11:50,000 GETTING A SIGNIFICANT AFFECT IN 4696 03:11:50,000 --> 03:11:53,840 THE RCT AND WEREN'T THINKING 4697 03:11:53,840 --> 03:11:55,360 VERY MUCH ABOUT WHETHER THE 4698 03:11:55,360 --> 03:11:58,240 INTERVENTIONS WERE PRACTICAL. 4699 03:11:58,240 --> 03:12:01,240 IN FACT, THE WAY THE SCIENTISTS 4700 03:12:01,240 --> 03:12:03,600 WERE THINKING WERE FIRST, LET'S 4701 03:12:03,600 --> 03:12:07,520 GET AN EFFECT IN THE RCT AND 4702 03:12:07,520 --> 03:12:10,400 THEN WE'LL WORRY WHETHER IT'S 4703 03:12:10,400 --> 03:12:13,280 TOO COMPLEX OR BURDENSOME. 4704 03:12:13,280 --> 03:12:19,040 IF IT TURNED OUT AN INTERVENTION 4705 03:12:19,040 --> 03:12:20,920 HAD AN AFFECT BUT BUT NOT 4706 03:12:20,920 --> 03:12:23,280 PRACTICAL THERE WAS NO WAY TO 4707 03:12:23,280 --> 03:12:30,320 RISK IT AND THE WAY TO CREATE AN 4708 03:12:30,320 --> 03:12:31,880 INTERVENTION LESS COMPLEX OR 4709 03:12:31,880 --> 03:12:33,760 BURDENSOME WOULD BE TO REMOVE 4710 03:12:33,760 --> 03:12:35,400 SOME COMPONENTS OR SET TO A 4711 03:12:35,400 --> 03:12:39,600 LOWER LEVEL OR DOSAGE. 4712 03:12:39,600 --> 03:12:41,640 WITHOUT KNOWING WHICH DON'TS ARE 4713 03:12:41,640 --> 03:12:43,200 DRIVING THE EFFECTS THERE WAS NO 4714 03:12:43,200 --> 03:12:44,000 WAY TO DETERMINE WHICH WERE 4715 03:12:44,000 --> 03:12:48,240 EXPENDABLE. 4716 03:12:48,240 --> 03:12:49,680 AS A RESULT THE INTERVENTIONS 4717 03:12:49,680 --> 03:12:53,040 WHICH SHOWED AFFECTS IN THE RCT 4718 03:12:53,040 --> 03:12:55,520 NER SAW THE LIGHT OF DAY AND OF 4719 03:12:55,520 --> 03:12:57,560 COURSE NO IMPLEMENTATION BEING 4720 03:12:57,560 --> 03:12:59,440 ZERO PUBLIC HEALTH IMPACT 4721 03:12:59,440 --> 03:13:00,720 BECAUSE IT'S A FUNCTION OF 4722 03:13:00,720 --> 03:13:04,640 EFFECTIVENESS AND REACH BOTH. 4723 03:13:04,640 --> 03:13:06,720 SO THE CONCLUSION THEY DREW WAS 4724 03:13:06,720 --> 03:13:08,120 THEY WERE NOT SUCCESSFULLY 4725 03:13:08,120 --> 03:13:09,120 ACHIEVING THE GOAL OF HIGH 4726 03:13:09,120 --> 03:13:12,400 PUBLIC HEALTH IMPACT. 4727 03:13:12,400 --> 03:13:13,640 THE THIRD OBJECTIVE WAS MAKING 4728 03:13:13,640 --> 03:13:18,640 IMPROVEMENTS OVER TIME. 4729 03:13:18,640 --> 03:13:21,920 WHILE THEY FOUND THE EVALUATION 4730 03:13:21,920 --> 03:13:24,240 RCT DID NOT REVEAL THE STRONG 4731 03:13:24,240 --> 03:13:25,720 AND WEAK PARTS OF AN 4732 03:13:25,720 --> 03:13:27,240 INTERVENTION AND SO THE NEXT 4733 03:13:27,240 --> 03:13:29,040 STEPS TO MAKING IMPROVEMENTS 4734 03:13:29,040 --> 03:13:30,920 WERE UNCLEAR. 4735 03:13:30,920 --> 03:13:32,520 WE'D LIKE KNOW WHAT'S NOT 4736 03:13:32,520 --> 03:13:32,960 PERFORMING WELL. 4737 03:13:32,960 --> 03:13:34,880 WE CAN WORK ON THAT BUT THERE 4738 03:13:34,880 --> 03:13:38,400 REALLY WASN'T ANY WAY TO TELL. 4739 03:13:38,400 --> 03:13:40,200 SO THEY DREW THE FOLLOWING 4740 03:13:40,200 --> 03:13:40,520 CONCLUSIONS. 4741 03:13:40,520 --> 03:13:41,920 THEY REALIZED THEY WERE NOT SET 4742 03:13:41,920 --> 03:13:43,960 UP TO MAKE ONGOING IMPROVEMENTS 4743 03:13:43,960 --> 03:13:45,960 AND WITHOUT THOSE ONGOING 4744 03:13:45,960 --> 03:13:47,040 IMPROVEMENTS THERE WAS NOT MUCH 4745 03:13:47,040 --> 03:13:49,120 HOPE ACHIEVING THE FIRST TWO 4746 03:13:49,120 --> 03:13:51,040 OBJECTIVES EITHER. 4747 03:13:51,040 --> 03:13:54,480 SO ALL OF THIS TOGETHER MADE THE 4748 03:13:54,480 --> 03:13:58,640 TERNS THINK MAYBE WE NEED TO 4749 03:13:58,640 --> 03:14:01,720 THINK OF SOMETHING DIFFERENT AND 4750 03:14:01,720 --> 03:14:03,960 THEY HAVE AN HRQ AND THEY WROTE 4751 03:14:03,960 --> 03:14:06,200 A REPORT SAYING THE AMOUNT OF 4752 03:14:06,200 --> 03:14:08,520 HIGH QUALITY EVIDENCE WAS 4753 03:14:08,520 --> 03:14:10,160 INSUFFICIENT TO DRAW FIRM 4754 03:14:10,160 --> 03:14:11,800 CONCLUSIONS OF INTERVENTION 4755 03:14:11,800 --> 03:14:13,520 WOULD WORK FOR DEMENTIA AND 4756 03:14:13,520 --> 03:14:15,200 DEMENTIA CARE AND THE CRITICAL 4757 03:14:15,200 --> 03:14:16,000 IMPROVEMENTS WERE NEEDED IN 4758 03:14:16,000 --> 03:14:21,400 DEMENTIA CARE RESEARCH. 4759 03:14:21,400 --> 03:14:26,640 SO THIS REPORT GOT THE TERREANS 4760 03:14:26,640 --> 03:14:28,200 THINKING HARD. 4761 03:14:28,200 --> 03:14:29,920 ULTIMATELY THEY DECIDED THEY 4762 03:14:29,920 --> 03:14:31,440 NEEDED A NEW RESEARCH FRAMEWORK. 4763 03:14:31,440 --> 03:14:33,320 THIS IS WHAT THEY CAME UP WITH. 4764 03:14:33,320 --> 03:14:38,200 THEY DECIDED TO DRAW ON GOOD 4765 03:14:38,200 --> 03:14:39,960 IDEAS FROM A LOT OF SOURCES AND 4766 03:14:39,960 --> 03:14:42,240 DREW ON IDEAS FROM BEHAVIORAL 4767 03:14:42,240 --> 03:14:45,600 SCIENCE AND DREW ON IDEAS ABOUT 4768 03:14:45,600 --> 03:14:46,760 EVIDENCE-BASED STRATEGIES AND 4769 03:14:46,760 --> 03:14:49,520 ALSO WENT TO OTHER FIELD AS 4770 03:14:49,520 --> 03:14:49,920 WELL. 4771 03:14:49,920 --> 03:14:52,040 THEY WENT TO INDUSTRIAL ENGINEER 4772 03:14:52,040 --> 03:14:55,480 WHERE THEY IMPORTED THE IDEA OF 4773 03:14:55,480 --> 03:15:01,320 OPTIMIZATION AND BASIC PRINCI 4774 03:15:01,320 --> 03:15:04,040 PRINCIPLES AND IT'S NOT ABOUT 4775 03:15:04,040 --> 03:15:06,120 FINDING THE VERY BEST BUT 4776 03:15:06,120 --> 03:15:07,080 BALANCING DIFFERENT 4777 03:15:07,080 --> 03:15:10,200 CONSIDERATIONS TO IDENTIFY THE 4778 03:15:10,200 --> 03:15:12,800 BEST YOU CAN USE. 4779 03:15:12,800 --> 03:15:14,760 THEY ALSO WENT TO HEALTH 4780 03:15:14,760 --> 03:15:15,560 ECONOMICS WHICH TAUGHT THEM 4781 03:15:15,560 --> 03:15:18,600 ABOUT MANAGEMENT OF RESOURCES. 4782 03:15:18,600 --> 03:15:19,600 THEY WENT TO DECISION SCIENCE 4783 03:15:19,600 --> 03:15:21,760 WHERE THEY LEARNED ABOUT METHODS 4784 03:15:21,760 --> 03:15:23,360 FOR MAKING DIFFICULT TRADEOFFS 4785 03:15:23,360 --> 03:15:24,880 BUT STRATEGICALLY. 4786 03:15:24,880 --> 03:15:27,040 FOR EXAMPLE, MAYBE AN 4787 03:15:27,040 --> 03:15:28,840 INTERVENTION IS EXTREMELY 4788 03:15:28,840 --> 03:15:30,000 EXPENSIVE BUT VERY EFFECTIVE. 4789 03:15:30,000 --> 03:15:31,120 SO WHAT DO YOU DO? 4790 03:15:31,120 --> 03:15:33,560 DO YOU PAY A LOT FOR A 4791 03:15:33,560 --> 03:15:35,480 HIGH-LEVEL EFFECTIVENESS OR TRY 4792 03:15:35,480 --> 03:15:38,080 TO DEVELOP SOMETHING THAT IS A 4793 03:15:38,080 --> 03:15:40,080 LITTLE BIT MORE PRACTICAL BUT 4794 03:15:40,080 --> 03:15:41,480 MAYBE A LITTLE LESS EFFECTIVE. 4795 03:15:41,480 --> 03:15:42,600 THERE'S IMPORTANT TRADEOFFS. 4796 03:15:42,600 --> 03:15:44,720 THEY WENT TO IMPLEMENTATION 4797 03:15:44,720 --> 03:15:47,840 SCIENCE TO FIND METHODS FOR 4798 03:15:47,840 --> 03:15:51,360 ACHIEVING IMPLEMENTABILITY. 4799 03:15:51,360 --> 03:15:54,280 THIS IS THE EVALUATION OF 4800 03:15:54,280 --> 03:15:54,800 BEHAVIORAL INTERVENTIONS. 4801 03:15:54,800 --> 03:15:56,440 LET'S REVIEW CHARACTERISTICS OF 4802 03:15:56,440 --> 03:15:59,400 THE NEW FRAMEWORK. 4803 03:15:59,400 --> 03:16:02,280 THE OBJECTIVE IS TO DEVELOP AN 4804 03:16:02,280 --> 03:16:04,840 INTERVENTION THAT DEMONSTRATE A 4805 03:16:04,840 --> 03:16:07,840 SIGNIFICANT AFFECT IN THE MRCT 4806 03:16:07,840 --> 03:16:10,960 AND IS IMMEDIATELY 4807 03:16:10,960 --> 03:16:11,280 IMPLEMENTABLE. 4808 03:16:11,280 --> 03:16:12,960 BOTH ARE EQUALLY IMPORTANT. 4809 03:16:12,960 --> 03:16:16,720 THIS REQUIRES AS I SAID BEFORE 4810 03:16:16,720 --> 03:16:18,360 STRATEGICALLY BALANCING 4811 03:16:18,360 --> 03:16:20,120 EFFECTIVENESS AGAINST 4812 03:16:20,120 --> 03:16:20,720 AFFORDABILITY. 4813 03:16:20,720 --> 03:16:23,760 YOU CAN DEVELOP THE MOST 4814 03:16:23,760 --> 03:16:27,920 EFFECTIVE INTERVENTION AND IF 4815 03:16:27,920 --> 03:16:29,400 IT'S NEVER IMPLEMENTED THE 4816 03:16:29,400 --> 03:16:31,560 PUBLIC HEALTH IMPACT IS ZERO. 4817 03:16:31,560 --> 03:16:35,840 THE TERREANS DECIDED TO OPTIMIZE 4818 03:16:35,840 --> 03:16:42,960 FIRST AND THEN WENT ON TO RCT. 4819 03:16:42,960 --> 03:16:44,600 THE TERREANS' APPROACH IS MORE 4820 03:16:44,600 --> 03:16:46,560 LIKE THE WAY THE SCIENTISTS WERE 4821 03:16:46,560 --> 03:16:46,800 TRAINED. 4822 03:16:46,800 --> 03:16:50,560 IT USES A VARIETY OF 4823 03:16:50,560 --> 03:16:51,520 EXPERIMENTAL DESIGNS IN 4824 03:16:51,520 --> 03:16:53,160 RECOGNITION OF SOMETHING THEIR 4825 03:16:53,160 --> 03:16:57,120 SCIENTISTS HAVE BEEN TELLING 4826 03:16:57,120 --> 03:17:02,000 THEM NO ONE SINGLE EXPERIMENTAL 4827 03:17:02,000 --> 03:17:04,400 DESIGN CAN BE USED BUT DIDN'T 4828 03:17:04,400 --> 03:17:06,920 THROW OUT THE EVALUATION RCT AND 4829 03:17:06,920 --> 03:17:13,360 KEPT IT WITH A NUMBER OF USEFUL 4830 03:17:13,360 --> 03:17:15,440 AL DESIGNS AND KEPT THE 4831 03:17:15,440 --> 03:17:16,200 EXPECTATION THAT IMPROVEMENT IS 4832 03:17:16,200 --> 03:17:19,480 AN ONGOING PROCESS AND DECIDED 4833 03:17:19,480 --> 03:17:21,520 TO ASSIGN NUMBERS IN THE SAME 4834 03:17:21,520 --> 03:17:25,160 WAY THEY'RE ASSIGNED TO 4835 03:17:25,160 --> 03:17:25,560 SOFTWARE. 4836 03:17:25,560 --> 03:17:30,640 AS YOU MIGHT WORK WITH ZOOM, 4837 03:17:30,640 --> 03:17:32,200 7.1, SAY, YOU MAY HAVE A 4838 03:17:32,200 --> 03:17:34,640 PARTICULAR INTERVENTION AND MAY 4839 03:17:34,640 --> 03:17:37,240 BE ON VERSION 2.1 OR 3.5. 4840 03:17:37,240 --> 03:17:43,440 SOMETHING LIKE THAT. 4841 03:17:43,440 --> 03:17:46,400 SO COULD PLANET TERRA'S APPROACH 4842 03:17:46,400 --> 03:17:48,480 WORK ON EARTH? 4843 03:17:48,480 --> 03:17:49,960 LET'S TAKE THE SPACE SHIP BACK 4844 03:17:49,960 --> 03:17:57,280 AND CONSIDER IF IT WOULD WORK. 4845 03:17:57,280 --> 03:17:59,440 THERE'S THE MULTI-PHASE 4846 03:17:59,440 --> 03:18:04,360 OPTIMIZATION STRATEGY AND IT 4847 03:18:04,360 --> 03:18:09,520 DRAWS ON ALL THOSE TRADITIONS 4848 03:18:09,520 --> 03:18:10,760 AND IMPLEMENTATION SCIENCE. 4849 03:18:10,760 --> 03:18:21,280 THIS IS A SCLEM -- SCHEMATIC. 4850 03:18:23,240 --> 03:18:26,400 THE RED BOX IS THE PREPARATION 4851 03:18:26,400 --> 03:18:27,720 PHASE OF MOST. 4852 03:18:27,720 --> 03:18:29,160 THERE'S PREPARATION, 4853 03:18:29,160 --> 03:18:31,520 OPTIMIZATION AND EVALUATION. 4854 03:18:31,520 --> 03:18:33,680 THE PREPARATION IS WHERE THE 4855 03:18:33,680 --> 03:18:34,800 INVESTIGATOR LAYS THE GROUND 4856 03:18:34,800 --> 03:18:38,800 WORK FOR OPTIMIZATION. 4857 03:18:38,800 --> 03:18:40,000 FOR THOSE IN THE INTERVENTION 4858 03:18:40,000 --> 03:18:42,600 AND EVALUATION AND DEVELOPMENT 4859 03:18:42,600 --> 03:18:44,800 BUSINESS WILL RECOGNIZE THESE 4860 03:18:44,800 --> 03:18:45,600 ACTIVITIES. 4861 03:18:45,600 --> 03:18:48,320 THIS PART WON'T BE NEW TO YOU. 4862 03:18:48,320 --> 03:18:51,720 YOU DERIVE OR REVISE A 4863 03:18:51,720 --> 03:18:53,640 CONCEPTUAL MODEL AND IDENTIFY 4864 03:18:53,640 --> 03:18:55,560 CANDIDATE INTERVENTION 4865 03:18:55,560 --> 03:18:55,880 COMPONENTS. 4866 03:18:55,880 --> 03:18:58,880 NOTICE I'M CALLING THEM 4867 03:18:58,880 --> 03:18:59,440 CANDIDATE. 4868 03:18:59,440 --> 03:19:02,240 THEY'RE CALLED CANDIDATE 4869 03:19:02,240 --> 03:19:02,840 COMPONENTS BECAUSE THERE'S NO 4870 03:19:02,840 --> 03:19:04,840 GUARANTEE THEY'LL MAKE IT IN THE 4871 03:19:04,840 --> 03:19:05,160 INTERVENTION. 4872 03:19:05,160 --> 03:19:08,600 THERE'S CANDIDATES FOR POSSIBLE 4873 03:19:08,600 --> 03:19:09,240 INCLUSION. 4874 03:19:09,240 --> 03:19:11,240 THEY MAY TURN OUT TO PERFORM 4875 03:19:11,240 --> 03:19:13,000 WELL BUT END UP BEING EXPENSIVE. 4876 03:19:13,000 --> 03:19:18,080 ANY PILOT WORK IS CONDUCTED IN 4877 03:19:18,080 --> 03:19:21,000 THE PREPARATION PHASE AND THE 4878 03:19:21,000 --> 03:19:22,080 INVESTIGATOR IDENTIFIES THE 4879 03:19:22,080 --> 03:19:23,120 OBJECTIVE AND I'LL COME BACK TO 4880 03:19:23,120 --> 03:19:24,480 THAT IN A MOMENT. 4881 03:19:24,480 --> 03:19:26,280 THE NEXT PHASE IS OPTIMIZATION 4882 03:19:26,280 --> 03:19:28,080 WHERE THE INVESTIGATOR BUILDS 4883 03:19:28,080 --> 03:19:30,000 THE OPTIMIZED INTERVENTION. 4884 03:19:30,000 --> 03:19:33,240 AND HERE THE INVESTIGATOR 4885 03:19:33,240 --> 03:19:35,080 CONDUCTS AN OPTIMIZATION RCT. 4886 03:19:35,080 --> 03:19:37,880 THIS IS A DIFFERENT KIND OF 4887 03:19:37,880 --> 03:19:39,400 EXPERIMENT AND EVALUATION RCT. 4888 03:19:39,400 --> 03:19:42,200 THE EVALUATION RCT IS A GREAT 4889 03:19:42,200 --> 03:19:45,880 WAY TO DO A DIRECT COMPARISON OF 4890 03:19:45,880 --> 03:19:47,320 ONE VERSION OF AN INTERVENTION 4891 03:19:47,320 --> 03:19:51,040 TO ANOTHER OR TO A CONTROL. 4892 03:19:51,040 --> 03:19:54,240 OPTIMIZATION RCTs ARE DESIGN TO 4893 03:19:54,240 --> 03:19:58,680 GIVE AN EFFICIENT LOOK AT THE 4894 03:19:58,680 --> 03:20:00,680 PERFORMANCE OF COMPONENTS AND 4895 03:20:00,680 --> 03:20:02,120 ALSO WHETHER THE PRESENCE OR 4896 03:20:02,120 --> 03:20:03,480 ABSENCE OF A COMPONENT OR LEVEL 4897 03:20:03,480 --> 03:20:06,240 OF A COMPONENT MIGHT HAVE IMPACT 4898 03:20:06,240 --> 03:20:12,320 ON THE EFFECT OF ANOTHER. 4899 03:20:12,320 --> 03:20:13,880 IN THE OPTIMIZATION PHASE ONE OR 4900 03:20:13,880 --> 03:20:16,520 MORE OF THE RCTs ARE IMPLEMENTED 4901 03:20:16,520 --> 03:20:21,480 AND THEN BASED ON THE DATA FROM 4902 03:20:21,480 --> 03:20:22,600 THOSE THE INVESTIGATOR 4903 03:20:22,600 --> 03:20:23,440 IDENTIFIES THE INTERVENTION THAT 4904 03:20:23,440 --> 03:20:28,520 NEEDS THE OBJECTIVE. 4905 03:20:28,520 --> 03:20:30,360 AND THE LAST PHASE THE 4906 03:20:30,360 --> 03:20:33,280 INTERVENTION IS CONFIRMED IN A 4907 03:20:33,280 --> 03:20:35,000 TRADITIONAL EVALUATION RCT. 4908 03:20:35,000 --> 03:20:36,480 YOU MAY NOTICE THERE'S TWO 4909 03:20:36,480 --> 03:20:38,640 PRINCIPLES AT THE TOP. 4910 03:20:38,640 --> 03:20:39,920 THE CONTINUAL OPTIMIZATION 4911 03:20:39,920 --> 03:20:45,240 PRINCIPLE THE IDEA THAT AN 4912 03:20:45,240 --> 03:20:46,960 INTERVENTION SHOULD BE OPTIMIZED 4913 03:20:46,960 --> 03:20:53,480 IN ORDER TO KEEP IMPROVING IT 4914 03:20:53,480 --> 03:20:57,480 OVER TIME AND THE REASON 4915 03:20:57,480 --> 03:20:59,000 MANAGEMENT PRINCIPLE WHICH SAYS 4916 03:20:59,000 --> 03:21:01,240 THE INVESTIGATOR HAS THE 4917 03:21:01,240 --> 03:21:06,040 RESPONSIBILITY TO THE TAXPAYERS 4918 03:21:06,040 --> 03:21:08,960 TO MAKE THE BEST USE OF 4919 03:21:08,960 --> 03:21:10,280 RESOURCES AND SELECT A DESIGN 4920 03:21:10,280 --> 03:21:15,080 THAT'S THE MOST EFFICIENT ONE. 4921 03:21:15,080 --> 03:21:17,680 I WANT TO POINT OUT THE WIDE 4922 03:21:17,680 --> 03:21:20,120 VARIETY OF EXPERIMENTAL DESIGN 4923 03:21:20,120 --> 03:21:23,640 FOR OPTIMIZATION RCTs AND 4924 03:21:23,640 --> 03:21:25,160 EXPERIMENT AND FACTORIAL 4925 03:21:25,160 --> 03:21:30,400 EXPERIMENT AND RANDOMIZED TRIAL 4926 03:21:30,400 --> 03:21:33,640 AND IF YOU'RE NOT INTO 4927 03:21:33,640 --> 03:21:35,000 EXPERIMENTAL DESIGN DON'T MIND 4928 03:21:35,000 --> 03:21:35,200 THIS. 4929 03:21:35,200 --> 03:21:37,440 THE NERDS IN THE ROOM LIKE ME 4930 03:21:37,440 --> 03:21:38,440 GET EXCITED ABOUT EXPERIMENT 4931 03:21:38,440 --> 03:21:40,440 SIGNAL DESIGN BUT I WANT TO 4932 03:21:40,440 --> 03:21:43,600 POINT OUT THE VARIETY OF DESIGNS 4933 03:21:43,600 --> 03:21:50,000 THERE ARE. 4934 03:21:50,000 --> 03:21:51,960 THE DESIGN PRETTY MUCH SUGGESTS 4935 03:21:51,960 --> 03:21:53,560 ITSELF BUT THE CLASSICAL 4936 03:21:53,560 --> 03:21:55,120 EVALUATION RCT WE'VE NOT THROWN 4937 03:21:55,120 --> 03:21:58,520 IT AWAY. 4938 03:21:58,520 --> 03:22:03,880 IT'S A PART OF THE MULTI-PHASED 4939 03:22:03,880 --> 03:22:08,240 OPTIMIZATION STRATEGY. 4940 03:22:08,240 --> 03:22:13,680 IT'S POSSIBLE TO HAVE AN 4941 03:22:13,680 --> 03:22:14,440 OBJECTIVE. 4942 03:22:14,440 --> 03:22:18,040 HERE'S A FEW EXAMPLES OF BEST 4943 03:22:18,040 --> 03:22:20,000 EXPECTED OUTCOME FOR SAY $300 4944 03:22:20,000 --> 03:22:20,520 PER PERSON. 4945 03:22:20,520 --> 03:22:27,560 OR THE BEST EXPECTED OUTCOME FOR 4946 03:22:27,560 --> 03:22:31,080 OF FOR LESS THAN THREE MINUTES 4947 03:22:31,080 --> 03:22:32,400 OF STAFF TIME AND YOU CAN 4948 03:22:32,400 --> 03:22:33,400 ENGINEER AN INTERVENTION FOR 4949 03:22:33,400 --> 03:22:35,240 COST EFFECTIVENESS. 4950 03:22:35,240 --> 03:22:38,800 I'LL MOVE TO PUBLISHED EXAMPLES. 4951 03:22:38,800 --> 03:22:40,960 THIS IS UNFORTUNATELY NOT IN THE 4952 03:22:40,960 --> 03:22:45,280 AGING AREA BECAUSE I DIDN'T HAVE 4953 03:22:45,280 --> 03:22:49,040 ONE IN THIS AREA BUT I HAVE ONE 4954 03:22:49,040 --> 03:22:49,520 IN THE WHAETH LOSS AREA. 4955 03:22:49,520 --> 03:23:00,080 THIS WAS A STUDY WHERE WE WERE 4956 03:23:01,760 --> 03:23:04,320 MULTIPLE P.I.s AND YOU SEE THE 4957 03:23:04,320 --> 03:23:05,000 NAMES LISTED. 4958 03:23:05,000 --> 03:23:09,440 THE OBJECTIVE WAS TO APPLY THE 4959 03:23:09,440 --> 03:23:13,080 STRATEGY TO DEVELOP AN ENTIRELY 4960 03:23:13,080 --> 03:23:14,360 REMOTELY DELIVERED TECHNOLOGY 4961 03:23:14,360 --> 03:23:17,800 SUPPORTED WEIGHT LOSS PACKAGE TO 4962 03:23:17,800 --> 03:23:19,440 MAXIMIZE THE AMOUNT OF WEIGHT 4963 03:23:19,440 --> 03:23:25,600 LOSS LESS THAN OR EQUAL TO $500 4964 03:23:25,600 --> 03:23:30,040 A PERSON. 4965 03:23:30,040 --> 03:23:32,840 WE LOOK AT FIVE DIFFERENT 4966 03:23:32,840 --> 03:23:37,200 CANDIDATE COMPONENTS IN THE 4967 03:23:37,200 --> 03:23:37,560 STUDY. 4968 03:23:37,560 --> 03:23:40,440 WE LOOKED AT COACHING CALLS. 4969 03:23:40,440 --> 03:23:43,520 10 TO 15 MINUTE CALLS FROM A 4970 03:23:43,520 --> 03:23:44,560 HEALTH COACH AND LOOKED AT TWO 4971 03:23:44,560 --> 03:23:47,320 LEVELS. 4972 03:23:47,320 --> 03:23:49,360 HIGHER AND LOWER LEVEL. 4973 03:23:49,360 --> 03:23:51,520 THE HIGHER LEVEL WAS 24 CALLS. 4974 03:23:51,520 --> 03:23:54,120 THE LOWER LEVEL WAS 12 CALLS. 4975 03:23:54,120 --> 03:23:55,360 FOR THE REMAINING COMPONENTS THE 4976 03:23:55,360 --> 03:23:57,440 HIGHER LEVEL IS YES OR INCLUDED 4977 03:23:57,440 --> 03:24:00,720 AND THE LOWER LEVEL IS NOT 4978 03:24:00,720 --> 03:24:01,480 INCLUDED. 4979 03:24:01,480 --> 03:24:03,960 ENCOURAGING TEXT MESSAGES. 4980 03:24:03,960 --> 03:24:06,280 REPLACEMENT RECOMMENDATIONS AND 4981 03:24:06,280 --> 03:24:06,760 INSTRUCTIONS. 4982 03:24:06,760 --> 03:24:10,000 A REPORT ABOUT THE INDIVIDUAL'S 4983 03:24:10,000 --> 03:24:11,920 WEIGHT LOSS PROJECT SENT TO 4984 03:24:11,920 --> 03:24:13,960 THEIR PRIMARY CARE POSITION AND 4985 03:24:13,960 --> 03:24:14,200 TRAINING. 4986 03:24:14,200 --> 03:24:15,440 EVERYONE TO BE INCLUDED IN THE 4987 03:24:15,440 --> 03:24:17,920 STUDY HAD TO BE ABLE TO IDENTIFY 4988 03:24:17,920 --> 03:24:22,920 A WEIGHT LOSS BUDDY AND WHAT 4989 03:24:22,920 --> 03:24:24,520 WE'VE MANIPULATED WERE SOME 4990 03:24:24,520 --> 03:24:26,160 BUDDIES WERE TRAINED AND SOME 4991 03:24:26,160 --> 03:24:27,880 WERE NOT TRAINED. 4992 03:24:27,880 --> 03:24:29,680 PEOPLE WERE RANDOMLY ASSIGNED TO 4993 03:24:29,680 --> 03:24:31,720 HAVE THEIR BUDDY TRAINED OR NOT 4994 03:24:31,720 --> 03:24:41,880 TRAINED. 4995 03:24:45,880 --> 03:24:48,000 YOU MIGHT BE WONDERING HOW WOULD 4996 03:24:48,000 --> 03:24:49,800 I APPROACH LOOKING AT FIVE 4997 03:24:49,800 --> 03:24:52,120 INTERVENTION COMPONENTS. 4998 03:24:52,120 --> 03:24:53,200 LET'S REVIEW THAT. 4999 03:24:53,200 --> 03:24:55,440 IF YOU'VE BEEN TRAINED IN THE 5000 03:24:55,440 --> 03:24:56,040 CLASSICAL TREATMENT PACKAGE 5001 03:24:56,040 --> 03:24:57,240 APPROACH THE FIRST THOUGHT MIGHT 5002 03:24:57,240 --> 03:25:03,800 BE I WOULD CONDUCT AN INDIVIDUAL 5003 03:25:03,800 --> 03:25:03,960 RCT. 5004 03:25:03,960 --> 03:25:14,520 ONE ON EACH AND IT WOULD REQUIRE 5005 03:25:16,840 --> 03:25:20,320 ROUGHLY 2500 SUBJECTS AND 10 5006 03:25:20,320 --> 03:25:21,000 POSITION. 5007 03:25:21,000 --> 03:25:23,640 ONE IS THE COMPARATIVE TREATMENT 5008 03:25:23,640 --> 03:25:24,320 EXPERIMENT. 5009 03:25:24,320 --> 03:25:30,400 THERE'S ONE CONTROL GROUP AND AN 5010 03:25:30,400 --> 03:25:32,080 EXPERIMENTAL CONDITION 5011 03:25:32,080 --> 03:25:33,040 RESPONDING TO EACH OF THE 5012 03:25:33,040 --> 03:25:35,920 INTERVENTION COMPONENTS. 5013 03:25:35,920 --> 03:25:37,600 ONE WHERE THE NUMBER OF CALLS 5014 03:25:37,600 --> 03:25:38,640 WAS SET TO THE HIGH LEVEL AND 5015 03:25:38,640 --> 03:25:41,160 ALL THE OTHER COMPONENTS WERE 5016 03:25:41,160 --> 03:25:43,280 SET TO THE NO LEVEL. 5017 03:25:43,280 --> 03:25:45,440 THEN BE ANOTHER CONDITION WHERE 5018 03:25:45,440 --> 03:25:47,120 PEOPLE WERE GIVEN ENCOURAGING 5019 03:25:47,120 --> 03:25:51,280 TEXT MESSAGES BUT THE LOWER 5020 03:25:51,280 --> 03:25:53,080 LEVEL OF CALLS AND THE OTHERS 5021 03:25:53,080 --> 03:25:55,480 WERE SAID THE TO NO AND SO ON 5022 03:25:55,480 --> 03:26:01,160 AND ONE FOR EACH OF THE FIVE 5023 03:26:01,160 --> 03:26:11,360 COMPONENTS. 5024 03:26:16,440 --> 03:26:19,120 AND THE OTHER IS PEOPLE BELIEVE 5025 03:26:19,120 --> 03:26:20,960 THE FACTORIAL EXPERIMENTS ARE 5026 03:26:20,960 --> 03:26:23,720 RESOURCE INTENSIVE AND DO 5027 03:26:23,720 --> 03:26:27,000 REQUIRE EXPERIMENTAL CONDITIONS. 5028 03:26:27,000 --> 03:26:27,680 FACTORIAL EXPERIMENT WOULD 5029 03:26:27,680 --> 03:26:29,560 REQUIRE 32 EXPERIMENTAL 5030 03:26:29,560 --> 03:26:31,160 CONDITIONS BUT ONLY REQUIRE A 5031 03:26:31,160 --> 03:26:34,160 LITTLE OVER 500 PARTICIPANTS. 5032 03:26:34,160 --> 03:26:36,000 THIS MAY SURPRISE YOU IF YOU'VE 5033 03:26:36,000 --> 03:26:37,600 BEEN TRAINED PRIMARILY IN THE 5034 03:26:37,600 --> 03:26:40,400 CLASSICAL TREATMENT PACKAGE 5035 03:26:40,400 --> 03:26:41,000 APPROACH. 5036 03:26:41,000 --> 03:26:42,360 THE REASON WHY FACTORIAL 5037 03:26:42,360 --> 03:26:44,080 EXPERIMENTS WERE ORIGINALLY 5038 03:26:44,080 --> 03:26:45,680 DEVELOPED IN THE LATE 1800s WAS 5039 03:26:45,680 --> 03:26:49,400 FOR THE VERY REASON. 5040 03:26:49,400 --> 03:26:55,560 THEY MAKE VERY EFFICIENT USE OF 5041 03:26:55,560 --> 03:26:57,320 EXPERIMENTAL PARTICIPANTS WHICH 5042 03:26:57,320 --> 03:27:01,960 WERE PLANTS OR SEEDS AND 5043 03:27:01,960 --> 03:27:03,160 EXPERIMENTAL DESIGNS WERE 5044 03:27:03,160 --> 03:27:04,560 DEVELOPED IN AGRICULTURE AND A 5045 03:27:04,560 --> 03:27:05,600 CHARACTERISTIC THAT ENABLES YOU 5046 03:27:05,600 --> 03:27:07,240 TO LOOK AT INTERACTIONS. 5047 03:27:07,240 --> 03:27:09,440 IT ENABLES YOU TO EXAMINE 5048 03:27:09,440 --> 03:27:12,040 WHETHER THE PRESENCE OR ABSENCE 5049 03:27:12,040 --> 03:27:13,560 OF LEVEL OF ONE COMPONENT HAS AN 5050 03:27:13,560 --> 03:27:15,560 IMPACT ON THE PERFORMANCE OF 5051 03:27:15,560 --> 03:27:16,240 ANOTHER WHICH IS SOMETHING THAT 5052 03:27:16,240 --> 03:27:26,600 THAT'S VERY IMPORTANT. 5053 03:27:28,880 --> 03:27:30,200 SOME OF YOU ARE PROBABLY THINK 5054 03:27:30,200 --> 03:27:31,560 IT'S NOT RIGHT BUT WHEN 5055 03:27:31,560 --> 03:27:33,440 ADDRESSING SUITABLE QUESTIONS 5056 03:27:33,440 --> 03:27:35,600 AND BALANCED FACTORIAL 5057 03:27:35,600 --> 03:27:36,640 EXPERIMENTAL DESIGNS OFTEN 5058 03:27:36,640 --> 03:27:38,400 REQUIRE FEW IR PARTICIPANTS AND 5059 03:27:38,400 --> 03:27:39,560 ALTERNATIVE DESIGNS. 5060 03:27:39,560 --> 03:27:40,840 IF YOU DON'T BELIEVE ME -- IT 5061 03:27:40,840 --> 03:27:48,040 WAS HARD FOR ME TOO AT FIRST TRY 5062 03:27:48,040 --> 03:27:55,720 READING THE CITATIONS THERE. 5063 03:27:55,720 --> 03:28:00,600 WE CONDUCTED THE FACTORIAL 5064 03:28:00,600 --> 03:28:03,560 EXPERIMENT 2X2X2X2 AND GOT THE 5065 03:28:03,560 --> 03:28:06,120 DATA AND ANALYZED THE DATA AND 5066 03:28:06,120 --> 03:28:07,120 OBTAINED ESTIMATES OF THE 5067 03:28:07,120 --> 03:28:09,000 EFFECTS OF EACH OF THE 5068 03:28:09,000 --> 03:28:10,040 COMPONENTS AND USED THE 5069 03:28:10,040 --> 03:28:10,520 INFORMATION TO SELECT 5070 03:28:10,520 --> 03:28:14,760 COMPONENTS. 5071 03:28:14,760 --> 03:28:17,760 WE DISCARDS THOSE THAT WEREN'T 5072 03:28:17,760 --> 03:28:19,080 PERFORMING ADEQUATELY AND LOOKED 5073 03:28:19,080 --> 03:28:24,560 AT INTERACTIONS BECAUSE 5074 03:28:24,560 --> 03:28:29,560 SOMETIMES A COMPONENT MAY 5075 03:28:29,560 --> 03:28:30,200 ACTIVATE ANOTHER COMPONENT AND 5076 03:28:30,200 --> 03:28:31,760 SELECTED COMPONENTS TO MAKE UP 5077 03:28:31,760 --> 03:28:38,440 THE OPTIMIZED INTERVENTION. 5078 03:28:38,440 --> 03:28:44,960 WE WERE LOOKING TO DEVELOP AN 5079 03:28:44,960 --> 03:28:46,840 ENTIRELY REMOTE WEIGHT LOSS 5080 03:28:46,840 --> 03:28:50,360 PACKAGE AND TO OBTAIN THE 5081 03:28:50,360 --> 03:28:51,920 MAXIMUM WEIGHT LOSS OF $500 A 5082 03:28:51,920 --> 03:28:54,800 PERSON OR LESS AND LOOKED AT 32 5083 03:28:54,800 --> 03:28:58,560 COMBINATIONS OF COMPONENTS. 5084 03:28:58,560 --> 03:29:00,000 I'M SHOWING FOUR PERFORMED 5085 03:29:00,000 --> 03:29:07,760 ESPECIALLY WELL. 5086 03:29:07,760 --> 03:29:11,400 THERE'S A COLUMN I'VE MARK IN 5087 03:29:11,400 --> 03:29:21,960 KILOGRAMS AND YOU SEE THAT THE 5088 03:29:24,880 --> 03:29:28,400 ALTERNATIVE IN THE BOX MAX 5089 03:29:28,400 --> 03:29:31,280 MIDTHE AMOUNT OF WEIGHT LOSS 5090 03:29:31,280 --> 03:29:34,360 OBTAINABLE AND THIS IS THE 5091 03:29:34,360 --> 03:29:34,720 INTERVENTION. 5092 03:29:34,720 --> 03:29:35,960 THE LOWER LEVEL APPROACH CALLS 5093 03:29:35,960 --> 03:29:37,840 FOR 12 AND NO TEXT MESSAGES, NO 5094 03:29:37,840 --> 03:29:39,720 MEAL REPLACEMENTS. 5095 03:29:39,720 --> 03:29:43,040 IT TURNED OUT PEOPLE HATED MEAL 5096 03:29:43,040 --> 03:29:43,400 REPLACEMENTS. 5097 03:29:43,400 --> 03:29:45,960 YES, FOR THE PCP REPORT. 5098 03:29:45,960 --> 03:29:46,840 PEOPLE LIKED HAVING A REPORT 5099 03:29:46,840 --> 03:29:52,760 SENT TO THEIR PRIMARY CARE 5100 03:29:52,760 --> 03:29:57,320 PHYSICIAN AND THE VERSION OF THE 5101 03:29:57,320 --> 03:29:58,440 INTERVENTION THAT GAVE THE 5102 03:29:58,440 --> 03:30:00,320 SECOND BEST WEIGHT LOSS WAS THE 5103 03:30:00,320 --> 03:30:01,240 LEAST EXPENSIVE AND THAT'S 5104 03:30:01,240 --> 03:30:06,160 SOMETHING THAT WOULD HAVE BEEN 5105 03:30:06,160 --> 03:30:07,320 DIFFICULT USING THE CLASSICAL 5106 03:30:07,320 --> 03:30:08,520 TREATMENT PACKAGE APPROACH. 5107 03:30:08,520 --> 03:30:09,600 IF YOU'RE INTERESTED IN THE 5108 03:30:09,600 --> 03:30:12,000 STUDY THERE'S MORE ABOUT IT IN 5109 03:30:12,000 --> 03:30:12,640 THE ARTICLE IN THE JOURNAL OF 5110 03:30:12,640 --> 03:30:19,360 OBESITY. 5111 03:30:19,360 --> 03:30:20,680 THE OPTIMIZATION STRATEGY IS AN 5112 03:30:20,680 --> 03:30:22,640 ALTERNATIVE FRAMEWORK FOR 5113 03:30:22,640 --> 03:30:26,480 INTERVENTION DEVELOPMENT AND 5114 03:30:26,480 --> 03:30:26,800 EVALUATION. 5115 03:30:26,800 --> 03:30:29,160 IT'S AN ALTERNATIVE TO THE 5116 03:30:29,160 --> 03:30:30,680 TREATMENT PACKAGE APPROACH USED 5117 03:30:30,680 --> 03:30:31,680 FOR SO MANY YEARS AND SOME WOULD 5118 03:30:31,680 --> 03:30:40,520 LIKE TO LEARN MORE. 5119 03:30:40,520 --> 03:30:41,400 I SUGGEST YOU DON'T BUY THE 5120 03:30:41,400 --> 03:30:42,920 BOOKS AND IF YOU'RE AFFILIATED 5121 03:30:42,920 --> 03:30:44,960 WITH THE UNIVERSITY YOU CAN 5122 03:30:44,960 --> 03:30:46,960 PROBABLY DOWNLOAD PDF VERSIONS 5123 03:30:46,960 --> 03:30:49,400 FROM THE PORTAL AT YOUR 5124 03:30:49,400 --> 03:30:50,040 UNIVERSITY LIBRARY. 5125 03:30:50,040 --> 03:30:54,800 IF YOU'RE NOT AFFILIATED WITH 5126 03:30:54,800 --> 03:30:55,760 THE UNIVERSITY YOU CAN PURCHASE 5127 03:30:55,760 --> 03:30:56,920 THEM FROM SPRINGER. 5128 03:30:56,920 --> 03:30:59,480 THE BOOK ON THE LEFT IS 5129 03:30:59,480 --> 03:31:01,640 COMPREHENSIVE INTRODUCTION TO 5130 03:31:01,640 --> 03:31:02,840 OPTIMIZATION OF BEHAVIORAL AND 5131 03:31:02,840 --> 03:31:04,440 BIO MEDICAL INTERVENTIONS AND 5132 03:31:04,440 --> 03:31:06,920 THE BOOK ON THE RIGHT IS AN 5133 03:31:06,920 --> 03:31:08,960 EDITED BOOK THAT COVERS A NUMBER 5134 03:31:08,960 --> 03:31:12,120 OF MORE ADVANCED TOPICS THAT YOU 5135 03:31:12,120 --> 03:31:12,800 MIGHT BE INTERESTED IN. 5136 03:31:12,800 --> 03:31:14,520 I RECOMMEND STARTING WITH THE 5137 03:31:14,520 --> 03:31:15,160 AUTHORS BOOK. 5138 03:31:15,160 --> 03:31:18,040 THE ONE ON THE LEFT AND READING 5139 03:31:18,040 --> 03:31:19,920 SELECTED CHAPTERS ON THE BOOK ON 5140 03:31:19,920 --> 03:31:30,080 THE RIGHT. 5141 03:31:30,080 --> 03:31:34,400 I DIRECT A CENTER CALLED FOR 5142 03:31:34,400 --> 03:31:37,040 ADVANCEMENT OF INTERVENTION 5143 03:31:37,040 --> 03:31:38,160 OPTIMIZATION AND WE HAVE S ON 5144 03:31:38,160 --> 03:31:43,000 OUR WEBSITE AND LOTS OF 5145 03:31:43,000 --> 03:31:44,280 INFORMATION ABOUT INVENTION 5146 03:31:44,280 --> 03:31:47,560 OPTIMIZATION IN GENERAL FOR 5147 03:31:47,560 --> 03:31:48,360 PEOPLE INTERESTED IN LEARNING 5148 03:31:48,360 --> 03:31:49,040 MORE. 5149 03:31:49,040 --> 03:31:54,520 I'D LIKE YOU TO KNOW THERE IS A 5150 03:31:54,520 --> 03:32:02,240 FREE COURSE ON COURSEERA AND 5151 03:32:02,240 --> 03:32:04,480 THEY'LL TRY TO CHARGE YOU $50 5152 03:32:04,480 --> 03:32:06,560 BUT THAT'S FOR A CERTIFICATE AND 5153 03:32:06,560 --> 03:32:11,160 IT'S AN INTRODUCTION TO THE 5154 03:32:11,160 --> 03:32:11,800 MULTI-PHASE OPTIMIZATION POST 5155 03:32:11,800 --> 03:32:13,880 AND WE'RE ABOUT TO PUT UP 5156 03:32:13,880 --> 03:32:16,040 ANOTHER COURSE AN INTRODUCTION 5157 03:32:16,040 --> 03:32:20,520 TO FOR STATISTICIANS AND BIO 5158 03:32:20,520 --> 03:32:21,080 STATISTICIANS. 5159 03:32:21,080 --> 03:32:24,440 WE OFFER IS SYNCHRONOUS ONLINE 5160 03:32:24,440 --> 03:32:32,960 TRAININGS THAT USE THE A SYNC -- 5161 03:32:32,960 --> 03:32:37,240 ASYNCHRONOUS COURSE AND YOU CAN 5162 03:32:37,240 --> 03:32:40,960 GO TO CADIO.org AND GET THERE 5163 03:32:40,960 --> 03:32:41,200 EASILY. 5164 03:32:41,200 --> 03:32:46,200 WE'RE TAKING APPLICATIONS NOW 5165 03:32:46,200 --> 03:32:47,520 FOR ONE OF THE SYNCHRONOUS 5166 03:32:47,520 --> 03:32:48,400 ONLINE TRAININGS. 5167 03:32:48,400 --> 03:32:49,920 I THINK THE DIFFICULT FOR THAT 5168 03:32:49,920 --> 03:32:50,960 CLOSES ON FRIDAY. 5169 03:32:50,960 --> 03:32:54,080 IF YOU'RE INTERESTED IN THAT 5170 03:32:54,080 --> 03:32:59,520 IT'D BE GOOD TO LOOK AT THAT 5171 03:32:59,520 --> 03:33:02,800 SOO 5172 03:33:02,800 --> 03:33:05,360 SOON. 5173 03:33:05,360 --> 03:33:06,960 AND THERE'S THE D3 CENTER. 5174 03:33:06,960 --> 03:33:08,600 THEY'RE MOSTLY INTERESTED IN 5175 03:33:08,600 --> 03:33:10,240 HIGH-TECH INTERVENTIONS. 5176 03:33:10,240 --> 03:33:12,640 WHAT WE OFTEN CALL ADAPTIVE 5177 03:33:12,640 --> 03:33:13,960 INTERVENTIONS OR JUST IN TIME 5178 03:33:13,960 --> 03:33:16,640 ADAPTIVE INTERVENTIONS. 5179 03:33:16,640 --> 03:33:21,320 A SPECIALIZED AREA BUT GROWING 5180 03:33:21,320 --> 03:33:22,200 VERY FAST BECAUSE TECHNOLOGY 5181 03:33:22,200 --> 03:33:25,640 OFFERS SO MANY AMAZING 5182 03:33:25,640 --> 03:33:31,760 POSSIBILITIES FOR INTERVENTIONS. 5183 03:33:31,760 --> 03:33:38,360 IF YOU'RE INTERESTED AND WANT TO 5184 03:33:38,360 --> 03:33:42,480 KNOW MORE YOU CAN SIGN UP AND WE 5185 03:33:42,480 --> 03:33:52,960 DO MANY WEBINARS WITNESS -- 5186 03:33:53,720 --> 03:33:56,240 WEDNESDAYS AT 1:00 AND THEY'RE 5187 03:33:56,240 --> 03:34:00,320 VERY INFORMAL BUT I SEE LISA ON 5188 03:34:00,320 --> 03:34:01,680 AND THANK YOU FOR LISTENING. 5189 03:34:01,680 --> 03:34:04,400 >>THANK YOU, DR. COLLINS FOR 5190 03:34:04,400 --> 03:34:04,960 THAT INCREDIBLY INTERESTING 5191 03:34:04,960 --> 03:34:09,640 PRESENTATION. 5192 03:34:09,640 --> 03:34:11,200 WE HAVE PANELISTS WHO ARE GOING 5193 03:34:11,200 --> 03:34:21,400 TO JOIN US IN A MOMENT. 5194 03:34:21,400 --> 03:34:23,640 CATHY HEFFNER AND BRENT MAUSBACH 5195 03:34:23,640 --> 03:34:26,800 AND CHRISTINA McCRAE WILL SAY A 5196 03:34:26,800 --> 03:34:28,240 LITTLE BIT ABOUT THEIR 5197 03:34:28,240 --> 03:34:29,880 INTERVENTION WORK AND SPEAK 5198 03:34:29,880 --> 03:34:34,920 BRIEFLY HOW IT MIGHT RELATE TO 5199 03:34:34,920 --> 03:34:36,880 THE STRATEGY. 5200 03:34:36,880 --> 03:34:39,200 CATHY, WOULD YOU LIKE TO START? 5201 03:34:39,200 --> 03:34:45,440 >>SURE, THANK YOU. 5202 03:34:45,440 --> 03:34:49,080 THANK YOU FOR INVITE KNOWING 5203 03:34:49,080 --> 03:34:53,200 SERVE ON THE PANEL. 5204 03:34:53,200 --> 03:34:55,200 I'M KATHY HEFFNER FROM THE 5205 03:34:55,200 --> 03:35:01,680 DEPARTMENT OF PSYCHIATRY AND 5206 03:35:01,680 --> 03:35:02,360 MEDICINE. 5207 03:35:02,360 --> 03:35:05,560 I'LL PROVIDE A LITTLE BACKGROUND 5208 03:35:05,560 --> 03:35:11,480 ON RESEARCH AND OPTIMIZED 5209 03:35:11,480 --> 03:35:12,160 INTERVINTER 5210 03:35:12,160 --> 03:35:12,520 VE 5211 03:35:12,520 --> 03:35:13,120 INTERVENTION IT'S RECOGNIZING 5212 03:35:13,120 --> 03:35:14,560 STRESS MECHANISMS IN OLDER 5213 03:35:14,560 --> 03:35:17,160 ADULTS HEALTH AND PROPELLED AN 5214 03:35:17,160 --> 03:35:18,640 INTEREST IN MY COLLABORATORS TO 5215 03:35:18,640 --> 03:35:20,560 PROTECT THE HEALTH AND WELL 5216 03:35:20,560 --> 03:35:22,360 BEING OF OLDER AND STRESSED 5217 03:35:22,360 --> 03:35:24,640 CAREGIVERS OF A PERSON LIVING 5218 03:35:24,640 --> 03:35:26,960 WITH DEMENTIA. 5219 03:35:26,960 --> 03:35:30,040 IN MUCH OF OUR WORK WE'VE BEEN 5220 03:35:30,040 --> 03:35:34,360 USING ESTABLISHED BEHAVIORAL 5221 03:35:34,360 --> 03:35:36,480 INTERVENTIONS DEVELOPED NOT 5222 03:35:36,480 --> 03:35:38,320 NECESSARILY OPTIMIZED IN THE WAY 5223 03:35:38,320 --> 03:35:43,560 LINDA DESCRIBED BUT DEVELOPED TO 5224 03:35:43,560 --> 03:35:50,840 TARGET COGNITIVE MECHANISMS. 5225 03:35:50,840 --> 03:35:57,160 WE'RE FINISHING UP A TRIAL WE'RE 5226 03:35:57,160 --> 03:35:59,120 ASKING WHETHER OLDER CAREGIVERS 5227 03:35:59,120 --> 03:36:02,160 COGNITIVE ABILITIES PROCESSING 5228 03:36:02,160 --> 03:36:05,400 SPEED AND ATTENTION WHETHER 5229 03:36:05,400 --> 03:36:07,800 DOING SO -- AND IT'S IMPORTANT 5230 03:36:07,800 --> 03:36:09,880 TO SAY THESE COGNITIVE ABILITIES 5231 03:36:09,880 --> 03:36:11,440 WE HAVE VERY TARGETED BRAIN 5232 03:36:11,440 --> 03:36:14,480 TRAINING INTERVENTIONS TO DO 5233 03:36:14,480 --> 03:36:14,680 THIS. 5234 03:36:14,680 --> 03:36:17,360 AND SO DOING SO LOOKING AT THE 5235 03:36:17,360 --> 03:36:19,360 STRENGTH AND THE INVOLVED BRAIN 5236 03:36:19,360 --> 03:36:20,880 PATHWAY THAT SUPPORT RELATION OF 5237 03:36:20,880 --> 03:36:21,880 EMOTIONS AND STRESS RESPONSES 5238 03:36:21,880 --> 03:36:27,920 AND SO THIS IS ULTIMATELY TO 5239 03:36:27,920 --> 03:36:30,760 FOSTER CAREGIVERS' EMOTIONAL 5240 03:36:30,760 --> 03:36:34,160 WELL BEING AND TARGETED 5241 03:36:34,160 --> 03:36:36,240 INTERVENTIONS SHOULDN'T GO 5242 03:36:36,240 --> 03:36:37,360 OPTIMIZATION FOR SCALABILITY AND 5243 03:36:37,360 --> 03:36:44,600 COST AND THOSE KINDS OF THINGS. 5244 03:36:44,600 --> 03:36:51,760 AND RELATED TO COMPONENT 5245 03:36:51,760 --> 03:36:53,480 INTERVENTIONS FOUR FOUR YEARS 5246 03:36:53,480 --> 03:36:57,640 AGO WE LOOKED AT A DEMENTIA CARE 5247 03:36:57,640 --> 03:37:01,200 ROYBAL CENTER WHAT WE CALL THE 5248 03:37:01,200 --> 03:37:10,520 RODCHESTER ROYBAL CENTER AND THE 5249 03:37:10,520 --> 03:37:13,960 ACRONYM IS THE ROCK STAR CENTER 5250 03:37:13,960 --> 03:37:16,680 AND I CO-COORDINATE WITH AN 5251 03:37:16,680 --> 03:37:19,040 EXPERT IN OLDER ADULTS 5252 03:37:19,040 --> 03:37:20,240 LONELINESS AND THE OBJECTIVE IS 5253 03:37:20,240 --> 03:37:22,480 TO SUPPORT THE DEVELOPMENT OF 5254 03:37:22,480 --> 03:37:24,520 INTERVENTIONS FOR LONELY AND 5255 03:37:24,520 --> 03:37:25,920 ISOLATED CAREGIVERS OF A FAMILY 5256 03:37:25,920 --> 03:37:28,520 MEMBER WITH DEMENTIA. 5257 03:37:28,520 --> 03:37:30,400 WE KNOW LONELINESS AND ISOLATION 5258 03:37:30,400 --> 03:37:32,560 ARE POTENT STRESSORS AND RISK 5259 03:37:32,560 --> 03:37:39,000 FACTORS FOR OLDER ADULTS' 5260 03:37:39,000 --> 03:37:40,160 MORBIDITY AND WE NEED 5261 03:37:40,160 --> 03:37:42,080 INTERVENTIONS TO REDUCE THE 5262 03:37:42,080 --> 03:37:42,440 RISK. 5263 03:37:42,440 --> 03:37:43,640 THIS BRINGS ME NOW A BIT CLOSER 5264 03:37:43,640 --> 03:37:47,200 TO A QUESTION I WANT TO POSE 5265 03:37:47,200 --> 03:37:48,320 HERE TO DR. COLLINS. 5266 03:37:48,320 --> 03:37:50,840 WE'RE IN THE BUSINESS OF FUNDING 5267 03:37:50,840 --> 03:37:54,400 INVESTIGATORS ON THEIR PATH TO 5268 03:37:54,400 --> 03:37:57,360 OPTIMIZING INTERVENTION. 5269 03:37:57,360 --> 03:38:01,560 SOMETIMES THEY'RE 5270 03:38:01,560 --> 03:38:02,160 MULTI-INTERVENTIONS. 5271 03:38:02,160 --> 03:38:04,360 FOR EXAMPLE, MULTI-COMPONENT 5272 03:38:04,360 --> 03:38:06,920 MINDFULNESS INTERVENTION OR 5273 03:38:06,920 --> 03:38:08,000 PSYCHO EDUCATION COMBINED WITH 5274 03:38:08,000 --> 03:38:13,600 SELF-CARE ARE THE DOMAINS OF 5275 03:38:13,600 --> 03:38:15,520 BEHAVIORAL INTERVENTIONS AND 5276 03:38:15,520 --> 03:38:17,640 MOST IS VERY ATTRACTIVE TOOL FOR 5277 03:38:17,640 --> 03:38:18,600 IDENTIFYING THE COMPONENTS AND 5278 03:38:18,600 --> 03:38:21,680 THE MECHANISMS THAT CHANGE A 5279 03:38:21,680 --> 03:38:23,520 BEHAVIOR AND FOR US THAT MAY BE 5280 03:38:23,520 --> 03:38:25,040 SOMETHING LIKE ENGAGING IN 5281 03:38:25,040 --> 03:38:28,120 SOCIAL ACTIVITIES AND WE DO WANT 5282 03:38:28,120 --> 03:38:32,400 TO ENCOURAGE ITS USE. 5283 03:38:32,400 --> 03:38:34,200 BUT THERE'S SKEPTICISM THAT 5284 03:38:34,200 --> 03:38:35,160 BUBBLES UP IN SOME CONVERSATIONS 5285 03:38:35,160 --> 03:38:39,240 ABOUT THIS. 5286 03:38:39,240 --> 03:38:45,400 I'D LIKE TO ASK A BIT OF YOUR 5287 03:38:45,400 --> 03:38:45,720 ADVICE. 5288 03:38:45,720 --> 03:38:47,960 WHAT DO YOU SAY TO A NEW 5289 03:38:47,960 --> 03:38:53,320 INVESTIGATOR OR EVEN A SEASONED 5290 03:38:53,320 --> 03:38:54,640 ONE THAT SUGGEST A 5291 03:38:54,640 --> 03:38:59,680 MULTICOMPONENT INTERVENTION 5292 03:38:59,680 --> 03:39:08,840 CANNOT BE ALONE TO AFFECT THE 5293 03:39:08,840 --> 03:39:09,880 OUTCOME OF INTEREST. 5294 03:39:09,880 --> 03:39:20,280 WHAT DO YOU SAY TO THAT? 5295 03:39:20,880 --> 03:39:20,960 5296 03:39:20,960 --> 03:39:23,520 >>I WOULD SAY IF YOU SAY YOUR 5297 03:39:23,520 --> 03:39:24,880 INTERVENTION IS THAT TIGHTLY 5298 03:39:24,880 --> 03:39:26,640 INTEGRATED YOU'RE EITHER SAYING 5299 03:39:26,640 --> 03:39:31,600 IT'S A SINGLE COMPONENT OR THAT 5300 03:39:31,600 --> 03:39:36,840 IF YOU WERE TO CONDUCT A 5301 03:39:36,840 --> 03:39:38,320 FACTORIAL OPTIMIZATION TRIAL 5302 03:39:38,320 --> 03:39:41,960 THERE'D BE NO TWO OR THREE-WAY 5303 03:39:41,960 --> 03:39:42,320 INTERACTIONS. 5304 03:39:42,320 --> 03:39:43,560 THE ONLY IMPORTANT AFFECT WOULD 5305 03:39:43,560 --> 03:39:44,040 BE THE HIGHEST ORDER 5306 03:39:44,040 --> 03:39:50,520 INTERACTION. 5307 03:39:50,520 --> 03:39:51,920 THAT SEEMS HARD TO BELIEVE TO ME 5308 03:39:51,920 --> 03:39:55,320 BUT WOULD BE INTERESTING TO TRY 5309 03:39:55,320 --> 03:39:57,520 TO ESTABLISH THAT COULD HAPPEN. 5310 03:39:57,520 --> 03:39:59,360 IT'S AN EMPIRICAL QUESTION. 5311 03:39:59,360 --> 03:40:01,440 EVEN IF IT DID TURN OUT THAT WAS 5312 03:40:01,440 --> 03:40:04,880 THE CASE, YOU MIGHT ALSO BE 5313 03:40:04,880 --> 03:40:08,360 INTERESTED IN USING MOST TO 5314 03:40:08,360 --> 03:40:12,120 OPTIMIZE WHAT I SOMETIMES CALL A 5315 03:40:12,120 --> 03:40:13,720 WRAP AROUND INTERVENTION. 5316 03:40:13,720 --> 03:40:17,040 AN INTERVENTION TO ENCOURAGE 5317 03:40:17,040 --> 03:40:18,000 BETTER ADHERENCE TO THE 5318 03:40:18,000 --> 03:40:21,600 INTERVENTION OR ENGAGEMENT IN 5319 03:40:21,600 --> 03:40:23,400 THE INTERVENTION OR BETTER 5320 03:40:23,400 --> 03:40:25,080 DELIVERY OF THE INTERVENTION. 5321 03:40:25,080 --> 03:40:25,760 THAT WOULD BE MY RESPONSE TO 5322 03:40:25,760 --> 03:40:34,240 THAT. 5323 03:40:34,240 --> 03:40:36,600 >>CHRISTINA, McCRAE WOULD YOU 5324 03:40:36,600 --> 03:40:37,920 LIKE TO INTRODUCE YOURSELF AND 5325 03:40:37,920 --> 03:40:40,000 GO NEXT? 5326 03:40:40,000 --> 03:40:43,360 >>I WOULD. 5327 03:40:43,360 --> 03:40:45,120 >>THANK YOU FOR AN INTERESTING 5328 03:40:45,120 --> 03:40:45,520 PRESENTATION. 5329 03:40:45,520 --> 03:40:49,120 I'D CHRISTINA McCRAE ASSISTANT 5330 03:40:49,120 --> 03:40:50,720 DEAN IN THE COLLEGE OF NURSING 5331 03:40:50,720 --> 03:40:52,200 AT THE UNIVERSITY OF SOUTH 5332 03:40:52,200 --> 03:40:52,560 FLORIDA. 5333 03:40:52,560 --> 03:40:55,200 MY RESEARCH IS FOUNDED IN TWO 5334 03:40:55,200 --> 03:40:56,800 FUNDAMENTAL IDEAS, GOOD SLEEP 5335 03:40:56,800 --> 03:40:59,200 PROVIDE AS A GOOD SLEEP FOR GOOD 5336 03:40:59,200 --> 03:41:03,600 HEALTH AND IMPROVING POOR SLEEP 5337 03:41:03,600 --> 03:41:07,600 IMPROVES POOR HEALTH. 5338 03:41:07,600 --> 03:41:08,640 FOR SOME INSOMNIA AND STRESS 5339 03:41:08,640 --> 03:41:10,640 LEAD TO POOR FUNCTIONING. 5340 03:41:10,640 --> 03:41:13,280 MY TESTS WHETHER IMPROVING 5341 03:41:13,280 --> 03:41:16,600 INSOMNIA AND STRESS WITH THE USE 5342 03:41:16,600 --> 03:41:17,880 OF COGNITIVE TREATMENT FOR 5343 03:41:17,880 --> 03:41:20,520 INSOMNIA LEAD TO IMPROVEMENT IN 5344 03:41:20,520 --> 03:41:24,440 CAREGIVER HEALTH AND FUDGING. 5345 03:41:24,440 --> 03:41:26,160 MY TEAM AND I HAVE USED 5346 03:41:26,160 --> 03:41:30,440 TRADITIONAL ONE-ON-ONE THERAPY 5347 03:41:30,440 --> 03:41:32,920 IT DELIVERY AND TELEHEALTH AND 5348 03:41:32,920 --> 03:41:35,320 CONDUCTED AN RCT USING THE 5349 03:41:35,320 --> 03:41:37,320 INTERNET AND COMMUNITY-BASED 5350 03:41:37,320 --> 03:41:42,440 METHODS TO ENHANCE ACCESS AND 5351 03:41:42,440 --> 03:41:43,360 ACCESSIBILITY FOR RURAL AND 5352 03:41:43,360 --> 03:41:45,560 UNDER SERVED CAREGIVERS AND TO 5353 03:41:45,560 --> 03:41:47,480 TEST ITS IMPACT ON SLEEP, STRESS 5354 03:41:47,480 --> 03:41:51,480 AND RELATED HEALTH OUTCOMES. 5355 03:41:51,480 --> 03:41:56,000 MY QUESTION, CBTI IS AN 5356 03:41:56,000 --> 03:41:59,480 ESTABLISHED MULTI-COMPONENT 5357 03:41:59,480 --> 03:42:00,440 INTERVENTION WITH EVIDENCE BASED 5358 03:42:00,440 --> 03:42:03,640 IN ADULTS SEEING IMPROVEMENTS IN 5359 03:42:03,640 --> 03:42:05,200 SLEEP, COGNITION AND RESPONDER 5360 03:42:05,200 --> 03:42:06,720 RATES AND COSTS. 5361 03:42:06,720 --> 03:42:10,600 THERE'S WEAKER EVIDENCE 5362 03:42:10,600 --> 03:42:12,160 SUPPORTING THREE OF THE STAND 5363 03:42:12,160 --> 03:42:13,280 ALONE THERAPIES AND EVIDENCE 5364 03:42:13,280 --> 03:42:14,680 AGAINST ONE COMPONENT AS A 5365 03:42:14,680 --> 03:42:16,240 STANDS ALONE BUT THAT'S BASED ON 5366 03:42:16,240 --> 03:42:20,800 FEWER AND LOWER QUALITY STUDIES. 5367 03:42:20,800 --> 03:42:23,520 HOW WOULD MOST APPLY IN THIS 5368 03:42:23,520 --> 03:42:24,080 SITUATION? 5369 03:42:24,080 --> 03:42:27,280 ONCE YOU HAVE NUMEROUS RCTs 5370 03:42:27,280 --> 03:42:30,160 PROVIDING STRONG SUPPORT FOR THE 5371 03:42:30,160 --> 03:42:31,160 MULTI-COMPONENT INTERVENTION ARE 5372 03:42:31,160 --> 03:42:34,760 WE TOO FAR DOWN THE ROAD TO USE 5373 03:42:34,760 --> 03:42:38,280 MOST? 5374 03:42:38,280 --> 03:42:40,800 >>I DEFINITELY DON'T THINK 5375 03:42:40,800 --> 03:42:44,640 WE'RE TOO DOWN THE ROAD BUT 5376 03:42:44,640 --> 03:42:46,920 THERE'S TWO WAYS I IMAGINE YOU 5377 03:42:46,920 --> 03:42:47,880 WOULD GO. 5378 03:42:47,880 --> 03:42:53,160 ONE IS BECAUSE THERE'S LOTS OF 5379 03:42:53,160 --> 03:42:54,720 EVIDENCE FOR THE PACKAGE AND WE 5380 03:42:54,720 --> 03:42:58,480 DON'T KNOW WHETHER ALL OF THE 5381 03:42:58,480 --> 03:43:03,560 COMPONENTS ARE REALLY TRACT. 5382 03:43:03,560 --> 03:43:09,120 AND EVEN THOUGH IT'S PERHAPS AN 5383 03:43:09,120 --> 03:43:10,440 ONLINE DELIVERED INTERVENTION 5384 03:43:10,440 --> 03:43:11,680 TIME IS A COST. 5385 03:43:11,680 --> 03:43:16,120 PARTICIPANT'S TIME IS AN 5386 03:43:16,120 --> 03:43:18,120 IMPORTANT COST. 5387 03:43:18,120 --> 03:43:22,680 IF YOU COULD HAVE AN 5388 03:43:22,680 --> 03:43:24,480 INTERVENTION THAT WAS SHORTER I 5389 03:43:24,480 --> 03:43:29,920 THINK YOU'D TAKE THAT. 5390 03:43:29,920 --> 03:43:31,760 I'D RECOMMEND TRYING TO SEE IF 5391 03:43:31,760 --> 03:43:36,320 ANY COMPONENTS COULD REMOVED. 5392 03:43:36,320 --> 03:43:38,120 BASED ON MY EXPERIENCE IT'S 5393 03:43:38,120 --> 03:43:44,600 LIMITED LIKE ANYONE ELSE'S BUT 5394 03:43:44,600 --> 03:43:46,200 I'VE BEEN SURPRISED AT HOW THE 5395 03:43:46,200 --> 03:43:48,440 OBSERVED EFFECTIVE INTERVENTIONS 5396 03:43:48,440 --> 03:43:50,040 TEND TO BE DRIVEN BY MORE THAN 5397 03:43:50,040 --> 03:43:50,760 WHAT PEOPLE THINK. 5398 03:43:50,760 --> 03:43:53,960 I THINK IT WOULD BE WORTH DOING. 5399 03:43:53,960 --> 03:43:55,600 THAT'S ONE THING. 5400 03:43:55,600 --> 03:43:56,480 THE SECOND THING IS MAYBE YOU 5401 03:43:56,480 --> 03:43:58,240 DON'T WANT TO GO THERE AND 5402 03:43:58,240 --> 03:44:02,600 THAT'S FINE. 5403 03:44:02,600 --> 03:44:08,720 YOU ALSO COULD START WORKING ON 5404 03:44:08,720 --> 03:44:11,440 ENGAGEMENT BECAUSE ANY ONLINE 5405 03:44:11,440 --> 03:44:12,160 INTERVENTION THERE'LL BE ISSUES 5406 03:44:12,160 --> 03:44:13,680 WITH ENGAGEMENT AND YOU KNOW 5407 03:44:13,680 --> 03:44:17,960 IT'S A BIG THING NOW IN HEALTH. 5408 03:44:17,960 --> 03:44:19,280 YOU COULD DEVELOP WHAT A 5409 03:44:19,280 --> 03:44:20,440 MENTIONED BEFORE WHAT A 5410 03:44:20,440 --> 03:44:21,880 SOMETIMES CALL A WRAP AROUND 5411 03:44:21,880 --> 03:44:22,240 INTERVENTION. 5412 03:44:22,240 --> 03:44:23,840 YOU'RE SATISFIED WITH THE 5413 03:44:23,840 --> 03:44:25,120 INTERVENTION, WHAT YOU THINK OF 5414 03:44:25,120 --> 03:44:27,040 AS THE INTERVENTION ITSELF AND 5415 03:44:27,040 --> 03:44:29,520 NOW YOU WANT AN INTERVENTION TO 5416 03:44:29,520 --> 03:44:30,480 WRAP AROUND THAT THAT'S GOING TO 5417 03:44:30,480 --> 03:44:32,760 DO SOMETHING ELSE RELATED TO THE 5418 03:44:32,760 --> 03:44:36,120 INTERVENTION AND IN THIS CASE 5419 03:44:36,120 --> 03:44:38,160 IMPROVE AND MAINTAIN ENGAGEMENT. 5420 03:44:38,160 --> 03:44:39,360 I GUESS THAT'S MY ANSWER TO YOU, 5421 03:44:39,360 --> 03:44:49,560 CHRISTINA. 5422 03:44:59,600 --> 03:45:02,760 >>I'M BRENT MAUSBACH IN THE 5423 03:45:02,760 --> 03:45:05,280 UNIVERSITY OF CALIFORNIA, SAN 5424 03:45:05,280 --> 03:45:07,240 DIEGO MY TRAINING IS IN CLINICAL 5425 03:45:07,240 --> 03:45:08,520 PSYCHOLOGY AND HAVE BEEN PART OF 5426 03:45:08,520 --> 03:45:10,280 A NUMBER OF INTERVENTION TRIALS 5427 03:45:10,280 --> 03:45:12,000 GOING BACK ALL THE WAY AS A 5428 03:45:12,000 --> 03:45:13,920 GRADUATE STUDENT BEING PART OF 5429 03:45:13,920 --> 03:45:15,360 THE REACH AND REACH 2 STUDY. 5430 03:45:15,360 --> 03:45:19,480 IT'S BEEN A LONG TIME SINCE I'VE 5431 03:45:19,480 --> 03:45:20,680 BEEN A PART OF THESE CAREGIVER 5432 03:45:20,680 --> 03:45:21,840 INTERVENTION STUDIES. 5433 03:45:21,840 --> 03:45:23,280 REALLY QUICK BRIEFLY FOR WHAT I 5434 03:45:23,280 --> 03:45:26,600 WAS HOPING TO TALK ABOUT TODAY, 5435 03:45:26,600 --> 03:45:29,640 I WANTED TO HIGHLIGHT THIS LARGE 5436 03:45:29,640 --> 03:45:32,480 GAP IN THE SCIENCE OF TESTING 5437 03:45:32,480 --> 03:45:34,200 INTERVENTIONS TO HELP CAREGIVERS 5438 03:45:34,200 --> 03:45:36,320 AND THE GAP IN GETTING THE 5439 03:45:36,320 --> 03:45:37,440 INTERVENTIONS TO CAREGIVERS WHO 5440 03:45:37,440 --> 03:45:39,320 NEED THEM. 5441 03:45:39,320 --> 03:45:42,080 I THINK LINDA DID A FANTASTIC 5442 03:45:42,080 --> 03:45:43,880 JOB HIGHLIGHTING THE CRITICAL 5443 03:45:43,880 --> 03:45:44,120 ISSUES. 5444 03:45:44,120 --> 03:45:48,120 I LOVED THE EXAMPLE OF THE 5445 03:45:48,120 --> 03:45:51,480 FICTITIOUS PLANET OF TERRA. 5446 03:45:51,480 --> 03:46:01,920 I'LL TAKE TIME TO PROVIDE 5447 03:46:04,640 --> 03:46:07,200 CORROBORATIVE RESEARCH FOR THE 5448 03:46:07,200 --> 03:46:12,000 WORK LINDA DOES AND IF YOU DO A 5449 03:46:12,000 --> 03:46:13,320 LITERATURE RESEARCH YOU CAN SEE 5450 03:46:13,320 --> 03:46:15,320 A NUMBER OF PUBLICATIONS. 5451 03:46:15,320 --> 03:46:17,280 THERE'S MORE THAN 80 PUBLISHED 5452 03:46:17,280 --> 03:46:18,880 INTERVENTION STUDIES. 5453 03:46:18,880 --> 03:46:21,280 YOU CAN FIND REVIEWS AND 5454 03:46:21,280 --> 03:46:22,200 META-ANALYSES ON THE 5455 03:46:22,200 --> 03:46:22,680 EFFECTIVENESS OF THE 5456 03:46:22,680 --> 03:46:32,120 INTERVENTIONS. 5457 03:46:32,120 --> 03:46:34,640 I DID A SURVEY IN SAN DIEGO WITH 5458 03:46:34,640 --> 03:46:35,720 COMMUNITY-BASED ORGANIZATIONS 5459 03:46:35,720 --> 03:46:36,600 THAT SAID THEY OFFERED SERVICES 5460 03:46:36,600 --> 03:46:43,680 TO SENIORS. 5461 03:46:43,680 --> 03:46:45,680 AND MANY SAID THEY OFFERED 5462 03:46:45,680 --> 03:46:47,440 SERVICE TO HELP CAREGIVERS WITH 5463 03:46:47,440 --> 03:46:48,000 DISTRESS IN THOSE KINDS OF 5464 03:46:48,000 --> 03:46:53,520 THINGS. 5465 03:46:53,520 --> 03:46:57,360 AND THE MOST COMMONLY USED 5466 03:46:57,360 --> 03:46:59,560 INTERVENTION FOR KAFRZ WAS WE 5467 03:46:59,560 --> 03:47:02,040 OFFER BROCHURES, INFORMATIONAL 5468 03:47:02,040 --> 03:47:03,800 BROCHURES, I THINK 58% OF THE 5469 03:47:03,800 --> 03:47:07,040 AGENCIES SAID THEY OFFER THE 5470 03:47:07,040 --> 03:47:07,840 BROCHURES. 5471 03:47:07,840 --> 03:47:12,880 42% SAID THEY OFFERED RESPITE 5472 03:47:12,880 --> 03:47:14,680 SERVICES AND ANOTHER OFFERED 5473 03:47:14,680 --> 03:47:16,800 INFORMAL SUPPORT GROUPS. 5474 03:47:16,800 --> 03:47:27,320 IF YOU DIG DOWN FURTHER, WHAT 5475 03:47:27,320 --> 03:47:28,160 READ WAS AN EVIDENCE-BASED 5476 03:47:28,160 --> 03:47:33,440 PRACTICE FOR CAREGIVERS. 5477 03:47:33,440 --> 03:47:35,080 WHEN YOU DIG FURTHER YOU FIND 5478 03:47:35,080 --> 03:47:36,560 THE AGENCIES DID EXACTLY LIKE 5479 03:47:36,560 --> 03:47:38,400 YOU WERE SAYING. 5480 03:47:38,400 --> 03:47:40,840 THEY FOUND IT TOO BURDENSOME AND 5481 03:47:40,840 --> 03:47:43,480 IT WAS A REACH 2 INTERVENTION. 5482 03:47:43,480 --> 03:47:45,760 TOO BURDENSOME TO OFFER THE 5483 03:47:45,760 --> 03:47:46,520 COMPLETE INTERVENTION. 5484 03:47:46,520 --> 03:47:48,720 WHAT THEY WOULD DO IS MAKE 5485 03:47:48,720 --> 03:47:51,040 MODIFICATIONS MAKING IT SHORTER 5486 03:47:51,040 --> 03:47:52,200 AND WE'LL TAKE A COMPONENT WE 5487 03:47:52,200 --> 03:47:57,480 LIKE AND OFFER IT AS A ONE-DAY 5488 03:47:57,480 --> 03:47:58,080 WORKSHOP. 5489 03:47:58,080 --> 03:48:00,120 AND OTHERS IF YOU ASKED THEM 5490 03:48:00,120 --> 03:48:01,040 THEY THOUGHT IT'S TOO MUCH TO 5491 03:48:01,040 --> 03:48:01,560 GET TRAINED. 5492 03:48:01,560 --> 03:48:07,560 WE DON'T WANT TO DRAIN THE 5493 03:48:07,560 --> 03:48:14,200 PEOPLE TO OFFER THE INTERVENTION 5494 03:48:14,200 --> 03:48:15,400 AND SAY THE SUPPORT GROUPS ARE 5495 03:48:15,400 --> 03:48:16,160 FINE AND SO WE'LL JUST OFFER 5496 03:48:16,160 --> 03:48:20,400 WHAT THEY WANT. 5497 03:48:20,400 --> 03:48:23,680 I THINK THAT ON A DATA LEVEL 5498 03:48:23,680 --> 03:48:25,400 HIGHLIGHTS WHAT KIND OF A GAP WE 5499 03:48:25,400 --> 03:48:28,080 HAVE OF 30 YEARS OF EVIDENCE 5500 03:48:28,080 --> 03:48:30,320 BASED INTERVENTION RESEARCH AND 5501 03:48:30,320 --> 03:48:34,240 ONE OF 24 WHAT IS MAYBE 4% OF 5502 03:48:34,240 --> 03:48:36,160 THE AGENCIES WILL OFFER SOME 5503 03:48:36,160 --> 03:48:40,040 KIND OF INTERVENTION THAT WORK. 5504 03:48:40,040 --> 03:48:42,600 FOR ME THE BIG QUESTION WOULD BE 5505 03:48:42,600 --> 03:48:43,880 THE NEXT STEPS MOVING FORWARD. 5506 03:48:43,880 --> 03:48:49,440 FOR ME IT'S HOW DO WE DO WE HAVE 5507 03:48:49,440 --> 03:48:55,520 THE IDEA OF TAKING THE EXISTING 5508 03:48:55,520 --> 03:48:56,560 INTERVENTIONS OUT THERE AND 5509 03:48:56,560 --> 03:48:58,880 WORKING WITH COMMUNITY AGENCIES 5510 03:48:58,880 --> 03:49:06,160 TO FIND THE XOINCOMPONENTS THATK 5511 03:49:06,160 --> 03:49:07,920 BEST OR MORE WORKING WITH THE 5512 03:49:07,920 --> 03:49:09,160 AGENCIES TO COME UP WITH NEW 5513 03:49:09,160 --> 03:49:11,080 IDEAS THEY THINK MAY BE HELPFUL 5514 03:49:11,080 --> 03:49:13,480 FROM GROUND ZERO, I GUESS, FROM 5515 03:49:13,480 --> 03:49:15,160 STEP ONE AND GOING FROM THERE. 5516 03:49:15,160 --> 03:49:18,600 I THINK THIS IS A WIDE OPEN AREA 5517 03:49:18,600 --> 03:49:23,800 FOR FUTURE RESEARCH. 5518 03:49:23,800 --> 03:49:24,800 >>I AGREE. 5519 03:49:24,800 --> 03:49:28,040 I SORT OF WANT TO OFFER YOU 5520 03:49:28,040 --> 03:49:29,680 LISTED TWO ALTERNATIVES. 5521 03:49:29,680 --> 03:49:33,080 I THINK I WANT TO GIVE TWO AND A 5522 03:49:33,080 --> 03:49:36,120 HALF ALTERNATIVES. 5523 03:49:36,120 --> 03:49:38,000 I THINK THIS IS AN AREA WHERE 5524 03:49:38,000 --> 03:49:44,360 I'M HOPING TO GO IN MY RESEARCH 5525 03:49:44,360 --> 03:49:48,520 IN THE NEXT FEW YEARS OR 5526 03:49:48,520 --> 03:49:51,400 ENCOURAGE SOMEONE ELSE TO GO IN 5527 03:49:51,400 --> 03:49:52,160 THIS DIRECTION. 5528 03:49:52,160 --> 03:49:56,840 YOU ARE SETTING OUT TO DEVELOP' 5529 03:49:56,840 --> 03:49:57,920 BEHAVIORAL INTERVENTION AND 5530 03:49:57,920 --> 03:49:59,160 STARTING AS STEP ONE BY TALKING 5531 03:49:59,160 --> 03:50:02,320 TO THE PEOPLE IN THE COMMUNITIES 5532 03:50:02,320 --> 03:50:04,360 WHO ARE GOING TO BE USING THE 5533 03:50:04,360 --> 03:50:05,560 INTERVENTION AND TALKING -- 5534 03:50:05,560 --> 03:50:06,800 FINDING THE PAYERS WHICH IS 5535 03:50:06,800 --> 03:50:08,480 OFTEN NOT AN EASY THING TO DO. 5536 03:50:08,480 --> 03:50:10,120 WHEN I TALK TO INTERVENTION 5537 03:50:10,120 --> 03:50:11,960 SCIENTISTS I OFTEN ASK THEM 5538 03:50:11,960 --> 03:50:14,160 WHO'S GOING TO PAY FOR THIS 5539 03:50:14,160 --> 03:50:15,960 INTERVENTION IF IT GOES SCALE? 5540 03:50:15,960 --> 03:50:19,960 OFTEN THAT IS UNKNOWN. 5541 03:50:19,960 --> 03:50:22,400 PEOPLE HAVE THIS -- IF I BUILD 5542 03:50:22,400 --> 03:50:23,960 IT THEY WILL COME ATTITUDE IF I 5543 03:50:23,960 --> 03:50:25,400 BUILD A GREAT INTERVENTION, 5544 03:50:25,400 --> 03:50:27,600 SOMEONE'S GOING PAY FOR IT. 5545 03:50:27,600 --> 03:50:30,000 THAT'S MAYBE TRUE BUT MAYBE NOT. 5546 03:50:30,000 --> 03:50:32,640 IT WOULD BE NICE TO HAVE SOMEONE 5547 03:50:32,640 --> 03:50:35,040 YOU TALK TO WHO SAID YEAH, I'LL 5548 03:50:35,040 --> 03:50:37,360 PROBABLY PAY FOR THAT BUT THAT'S 5549 03:50:37,360 --> 03:50:39,520 NOT CONSIDERED A STEP ONE AWAY. 5550 03:50:39,520 --> 03:50:42,120 THE IDEA IS TO FIND OUT THE 5551 03:50:42,120 --> 03:50:42,440 CONSTRAINTS. 5552 03:50:42,440 --> 03:50:43,920 IS IT THE CASE IN MOST THE 5553 03:50:43,920 --> 03:50:45,120 SETTINGS WHERE THE INTERVENTION 5554 03:50:45,120 --> 03:50:47,320 IS GOING TO BE DELIVERED THE 5555 03:50:47,320 --> 03:50:49,080 STAFF CAN ARE ONLY AVAILABLE FOR 5556 03:50:49,080 --> 03:50:54,120 X NUMBER OF HOURS A WEEK OR 5557 03:50:54,120 --> 03:50:55,880 THINGS AS SIMPLE AS MAYBE YOU 5558 03:50:55,880 --> 03:50:58,800 CAN'T GET A CONFERENCE ROOM. 5559 03:50:58,800 --> 03:51:01,640 MAYBE YOU CAN'T GET THAT AND IF 5560 03:51:01,640 --> 03:51:02,640 THE INTERVENTION REQUIRES A 5561 03:51:02,640 --> 03:51:03,240 CONFERENCE ROOM THAT WON'T BE 5562 03:51:03,240 --> 03:51:06,240 IMPLEMENTED. 5563 03:51:06,240 --> 03:51:08,040 MAYBE THE RELATE IS THE PEOPLE 5564 03:51:08,040 --> 03:51:09,400 LIKELY TO BE PARTICIPANTS WILL 5565 03:51:09,400 --> 03:51:11,680 ONLY SHOW UP AN X NUMBER OF 5566 03:51:11,680 --> 03:51:12,600 TIMES OR ONLY HAVE AN X NUMBER 5567 03:51:12,600 --> 03:51:19,680 OF MINUTES TO SPEND. 5568 03:51:19,680 --> 03:51:24,440 YOU GET THE IDEA. 5569 03:51:24,440 --> 03:51:25,960 ONCE YOU IDENTIFY THAT THEN YOU 5570 03:51:25,960 --> 03:51:28,000 CAN BUILD THE INTERVENTION TO 5571 03:51:28,000 --> 03:51:29,520 WORK WITHIN THE PROGRAMERS IS. 5572 03:51:29,520 --> 03:51:32,400 THAT BECOMES A PART OF YOUR 5573 03:51:32,400 --> 03:51:37,000 OPTIMIZATION OBJECTIVE. 5574 03:51:37,000 --> 03:51:38,000 THE INTERVENTION CAN'T REQUIRE 5575 03:51:38,000 --> 03:51:42,640 CONFERENCE ROOM. 5576 03:51:42,640 --> 03:51:46,040 WE'RE LOOKING FOR THE BEST 5577 03:51:46,040 --> 03:51:47,600 EXPECTED OUTCOMES AND DIDN'T 5578 03:51:47,600 --> 03:51:49,360 REQUIRE MORE THAN 60 MINUTES OF 5579 03:51:49,360 --> 03:51:50,920 STAFF TIME OR THE BEST EXPECTED 5580 03:51:50,920 --> 03:51:52,320 OUTCOME THAT DOESN'T REQUIRE 5581 03:51:52,320 --> 03:51:53,520 MORE THAN FIVE VISITS. 5582 03:51:53,520 --> 03:51:55,600 I'M MAKING THESE UP BUT THERE'S 5583 03:51:55,600 --> 03:51:59,360 AN INFINITE NUMBER OF DIFFERENT 5584 03:51:59,360 --> 03:52:05,160 OPTIMIZATION OBJECTIVES. 5585 03:52:05,160 --> 03:52:08,840 I THOUGHT THE TWO POSSIBILITIES 5586 03:52:08,840 --> 03:52:10,240 YOU DESCRIBE THEY'RE NOT 5587 03:52:10,240 --> 03:52:11,640 MUTUALLY EXCLUSIVE AND EITHER 5588 03:52:11,640 --> 03:52:13,480 ONE WOULD BE GREAT OR BOTH BUT 5589 03:52:13,480 --> 03:52:16,280 EITHER WAY I SUGGEST STARTING -- 5590 03:52:16,280 --> 03:52:18,480 WHEN I TALK TO PEOPLE I SAY 5591 03:52:18,480 --> 03:52:20,160 STARTING AT THE END. 5592 03:52:20,160 --> 03:52:22,720 YOU VISIT THE END AND SAY OKAY, 5593 03:52:22,720 --> 03:52:27,600 WHEN THIS INTERVENTION IS 5594 03:52:27,600 --> 03:52:29,480 DEVELOPED,S WHEN YOU GOING TO 5595 03:52:29,480 --> 03:52:32,400 HAVE TO BE IN PLACE TO IMPLEMENT 5596 03:52:32,400 --> 03:52:34,560 THIS AND SAY OKAY, THIS IS WHAT 5597 03:52:34,560 --> 03:52:35,800 WE HAVE TO WORK WITH. 5598 03:52:35,800 --> 03:52:39,800 WE'RE GOING DEVELOP SOMETHING 5599 03:52:39,800 --> 03:52:40,600 THAT IS PRACTICAL. 5600 03:52:40,600 --> 03:52:45,040 THE IDEA IS TO GET THE BEST 5601 03:52:45,040 --> 03:52:49,280 STRATEGIC BALANCE OF 5602 03:52:49,280 --> 03:52:49,600 EFFECTIVENESS. 5603 03:52:49,600 --> 03:52:52,160 DOES THAT ANSWER YOUR QUESTION? 5604 03:52:52,160 --> 03:53:00,360 >>FAN -- FANTASTIC. 5605 03:53:00,360 --> 03:53:02,960 WE'RE AT A NEW DIRECTION AND 5606 03:53:02,960 --> 03:53:04,960 FINALLY ADDRESSING ONE OF THE 5607 03:53:04,960 --> 03:53:06,680 BIGGEST ISSUES IN INTERVENTION 5608 03:53:06,680 --> 03:53:09,320 WORK AND SO APPRECIATIVE YOU'RE 5609 03:53:09,320 --> 03:53:10,800 AT THE FOREFRONT AND GIVING 5610 03:53:10,800 --> 03:53:12,440 SUGGESTIONS WHERE TO GO AND MAKE 5611 03:53:12,440 --> 03:53:13,800 SURE THE INTERVENTIONS GET TO 5612 03:53:13,800 --> 03:53:14,360 THE PEOPLE WHO NEED THEM. 5613 03:53:14,360 --> 03:53:24,600 >>THANK YOU. 5614 03:53:31,720 --> 03:53:33,680 >>CREATIVE TALK. 5615 03:53:33,680 --> 03:53:35,960 SOME INTERVENTIONS ARE 5616 03:53:35,960 --> 03:53:37,560 NECESSARILY COMPLEX. 5617 03:53:37,560 --> 03:53:39,320 FOR YEARS QUALITY IMPROVEMENT 5618 03:53:39,320 --> 03:53:41,240 PROJECTS TRIED SIMPLE 5619 03:53:41,240 --> 03:53:42,520 INTERVENTIONS SUCH AS EDUCATION, 5620 03:53:42,520 --> 03:53:44,720 PROMPT, REMINDERS, ETCETERA. 5621 03:53:44,720 --> 03:53:51,800 THIS DID NOT WORK. 5622 03:53:51,800 --> 03:53:54,240 THERE'S A CLAIM THAT COMPLEX 5623 03:53:54,240 --> 03:53:55,880 INTERVENTIONS NEED TO BE BROKEN 5624 03:53:55,880 --> 03:53:57,960 UP TO BE UNDERSTOOD AND WHAT 5625 03:53:57,960 --> 03:53:58,920 COMPONENTS WORK BECAUSE 5626 03:53:58,920 --> 03:54:00,520 COMPONENTS OF COMPLEX 5627 03:54:00,520 --> 03:54:05,680 INTERVENTIONS ARE NOT DESIGN TO 5628 03:54:05,680 --> 03:54:10,160 WORK AND IT WILL AGREE WITH THE 5629 03:54:10,160 --> 03:54:12,200 IMPORTANCE OF INVOLVING 5630 03:54:12,200 --> 03:54:13,120 IMPLEMENTATION SCIENCE, 5631 03:54:13,120 --> 03:54:15,800 BEHAVIORAL SCIENCE, ETCETERA, 5632 03:54:15,800 --> 03:54:18,040 WHAT EVIDENCE DO WE HAVE THAT 5633 03:54:18,040 --> 03:54:19,600 SIMPLE INTERVENTIONS ARE LIKELY 5634 03:54:19,600 --> 03:54:29,640 TO IMPROVE OUTCOMES IN THIS? 5635 03:54:29,640 --> 03:54:32,560 >>RESPECTFULLY, I THINK THAT'S 5636 03:54:32,560 --> 03:54:34,560 AN EMPIRICAL QUESTION. 5637 03:54:34,560 --> 03:54:39,800 IF WHAT YOU'RE SAYING IS TRUE, 5638 03:54:39,800 --> 03:54:41,880 I'M NOT SURE HOW THE TREATMENT 5639 03:54:41,880 --> 03:54:47,200 WILL MOVE IS CLOSER TO THE GOAL 5640 03:54:47,200 --> 03:54:49,400 OF EFFECTIVE AND PRACTICAL 5641 03:54:49,400 --> 03:54:54,400 INTERVENTIONS THEN THE APPROACH 5642 03:54:54,400 --> 03:54:57,520 THE MULTIPHASED OPTIMIZATION 5643 03:54:57,520 --> 03:54:58,600 STRATEGY BUT I DIDN'T TALK IT 5644 03:54:58,600 --> 03:55:04,600 MUCH BECAUSE I DIDN'T HAVE TIME. 5645 03:55:04,600 --> 03:55:07,160 WE GIVE A WEEK LONG TRAINING ON 5646 03:55:07,160 --> 03:55:08,360 THE APPROACH. 5647 03:55:08,360 --> 03:55:09,800 I COULDN'T COVERING EVERYTHING 5648 03:55:09,800 --> 03:55:11,320 IN ONE 30-MINUTE TALK. 5649 03:55:11,320 --> 03:55:16,880 PART OF THE ISSUES YOU'RE 5650 03:55:16,880 --> 03:55:17,840 RAISING COULD PARTIALLY 5651 03:55:17,840 --> 03:55:22,680 ADDRESSED WITH A CLEAR AND WELL 5652 03:55:22,680 --> 03:55:25,880 SPECIFIED CONCEPTUAL MODEL. 5653 03:55:25,880 --> 03:55:31,680 IT'S PART OF A MODEL OF THE 5654 03:55:31,680 --> 03:55:33,240 PROCESS BEING INTERVENED ON AND 5655 03:55:33,240 --> 03:55:36,920 ONCE YOU HAVE A MOLT IT'S BEING 5656 03:55:36,920 --> 03:55:38,560 INTERVENED ON YOU ADD THE 5657 03:55:38,560 --> 03:55:43,640 COMPONENTS AND INDICATE WHICH 5658 03:55:43,640 --> 03:55:49,000 COMPONENTS ARE HYPOTHESIZED TO 5659 03:55:49,000 --> 03:55:53,280 EFFECT THE MODEL AND HOW. 5660 03:55:53,280 --> 03:55:55,120 A LOT OF TIMES THE COMPLEX 5661 03:55:55,120 --> 03:55:56,880 INTERVENTIONS CONTAIN SO MANY 5662 03:55:56,880 --> 03:55:59,200 COMPONENTS BECAUSE THEY DON'T 5663 03:55:59,200 --> 03:56:01,480 HAVE A CLEAR CONCEPTUAL MODEL 5664 03:56:01,480 --> 03:56:06,440 AND A LOT OF COMPONENTS HAVE 5665 03:56:06,440 --> 03:56:07,440 BEEN INCLUDED BECAUSE YOU WANT 5666 03:56:07,440 --> 03:56:13,000 TO MAKE SURE SOMETHING IS 5667 03:56:13,000 --> 03:56:13,240 WORKING. 5668 03:56:13,240 --> 03:56:16,880 I RECOMMEND STARTING WITH 5669 03:56:16,880 --> 03:56:20,240 CONCEPTUAL MODEL AND DIVIDE IT 5670 03:56:20,240 --> 03:56:23,640 INTO PARTS A LITTLE BIT MORE 5671 03:56:23,640 --> 03:56:23,880 EASILY. 5672 03:56:23,880 --> 03:56:25,280 ALSO THERE'S SOME COMPONENTS OF 5673 03:56:25,280 --> 03:56:30,720 AN INTERVENTION YOU DON'T 5674 03:56:30,720 --> 03:56:35,080 NECESSARILY WANT TO MANIPULATE. 5675 03:56:35,080 --> 03:56:37,320 FOR EXAMPLE, I WORKED A LOT IN 5676 03:56:37,320 --> 03:56:39,560 DIFFERENT AREA OF DRUG ABUSE 5677 03:56:39,560 --> 03:56:45,040 PREVENTION AND EVERY DRUG ABUSE 5678 03:56:45,040 --> 03:56:46,400 PREVENTION INTERVENTION HAS SOME 5679 03:56:46,400 --> 03:56:48,000 CONTENT EXPLAINING DRUGS AND 5680 03:56:48,000 --> 03:56:48,800 THEIR EFFECTS. 5681 03:56:48,800 --> 03:56:54,160 THAT CONTENT HAS NEVER BEEN 5682 03:56:54,160 --> 03:56:58,720 SHOWN ALONE TO EFFECT THE UPTAKE 5683 03:56:58,720 --> 03:56:59,960 OF DRUG USE BUT AN ESSENTIAL 5684 03:56:59,960 --> 03:57:01,160 BUILDING BLOCK OF THE REST OF 5685 03:57:01,160 --> 03:57:01,840 THE INTERVENTION. 5686 03:57:01,840 --> 03:57:03,000 THAT HAS TO BE INCLUDED. 5687 03:57:03,000 --> 03:57:05,440 USUALLY THAT'S PART OF WHAT WE 5688 03:57:05,440 --> 03:57:10,520 SOMETIMES CALL A CORE 5689 03:57:10,520 --> 03:57:10,840 INTERVENTION. 5690 03:57:10,840 --> 03:57:12,160 IT'S NOT PART OF THE EXPERIMENT. 5691 03:57:12,160 --> 03:57:17,160 I PROBABLY DIDN'T ANSWER ALL 5692 03:57:17,160 --> 03:57:20,840 THAT INDIVIDUAL'S QUESTIONS BUT 5693 03:57:20,840 --> 03:57:26,000 HOPEFULLY TALKED ABOUT SOME OF 5694 03:57:26,000 --> 03:57:26,400 IT. 5695 03:57:26,400 --> 03:57:28,200 >>THANK YOU. 5696 03:57:28,200 --> 03:57:29,760 >>DID YOU WANT TO COMMENT? 5697 03:57:29,760 --> 03:57:32,480 >>IT'S NOT FROM THE REALM OF 5698 03:57:32,480 --> 03:57:34,720 DEMENTIA RESEARCH BUT A COUPLE 5699 03:57:34,720 --> 03:57:35,960 DECADES AGO THERE WAS A 5700 03:57:35,960 --> 03:57:38,200 COMPONENT ANALYSIS OF CBT. 5701 03:57:38,200 --> 03:57:40,400 AND THE IDEA IS THAT IT'S A 5702 03:57:40,400 --> 03:57:43,160 COMPLEX INTERVENTION THAT 5703 03:57:43,160 --> 03:57:44,440 REQUIRES BEHAVIOR CHANGE 5704 03:57:44,440 --> 03:57:45,560 PROCESSING OF AUTOMATIC THOUGHTS 5705 03:57:45,560 --> 03:57:48,560 AND CHANGING THOSE AND GETTING 5706 03:57:48,560 --> 03:57:51,520 INTO CORE DEEP SCHEMA FROM A 5707 03:57:51,520 --> 03:57:53,560 LIFE TIME OF EXPERIENCE. 5708 03:57:53,560 --> 03:57:56,720 AND HE WAS SHOCKED, HIM AND HIS 5709 03:57:56,720 --> 03:57:57,960 INVESTIGATIVE TEAM TO FIND 5710 03:57:57,960 --> 03:58:00,240 COMPONENTS WERE JUST AS GOOD AS 5711 03:58:00,240 --> 03:58:02,400 THE ENTIRE PACKAGE AND THAT 5712 03:58:02,400 --> 03:58:06,240 OPENS THE DOOR FOR WHAT WE DO. 5713 03:58:06,240 --> 03:58:09,440 WE MAY FIND AND BELIEVE ENTIRE 5714 03:58:09,440 --> 03:58:10,640 PACKAGES ARE NECESSARY TO 5715 03:58:10,640 --> 03:58:12,720 PRODUCE A RESULT AND CERTAIN 5716 03:58:12,720 --> 03:58:13,760 COMPONENTS SEEM TO WORK AS WELL 5717 03:58:13,760 --> 03:58:15,200 AS AN ENTIRE PACKAGE. 5718 03:58:15,200 --> 03:58:25,600 I'LL LEAVE IT AT THAT. 5719 03:58:30,480 --> 03:58:32,680 >>ANOTHER QUESTION FOR YOU, 5720 03:58:32,680 --> 03:58:35,800 DR. COLLINS, WHAT ADVICE DO YOU 5721 03:58:35,800 --> 03:58:39,960 HAVE FOR MORE JUNIOR 5722 03:58:39,960 --> 03:58:41,720 INVESTIGATORS TO FIND BIO 5723 03:58:41,720 --> 03:58:46,200 STATISTICIANS TO CONDUCT COST OF 5724 03:58:46,200 --> 03:58:47,240 INTERVENTION DESIGN WHICH OFTEN 5725 03:58:47,240 --> 03:58:50,560 TIMES IS UNKNOWN WITHIN THE 5726 03:58:50,560 --> 03:58:52,000 HEALTH CARE SYSTEM WHEN 5727 03:58:52,000 --> 03:58:53,080 DIFFERENT STAFF ARE PAID FOR 5728 03:58:53,080 --> 03:58:56,960 DIFFERENT ENTITIES FOR CLINICAL 5729 03:58:56,960 --> 03:59:05,520 RVU CALCULATIONS AND GRANTS? 5730 03:59:05,520 --> 03:59:06,520 >>THERE'S TWO DIFFERENT 5731 03:59:06,520 --> 03:59:06,840 QUESTIONS. 5732 03:59:06,840 --> 03:59:08,640 ONE IS THE QUESTION OF WHAT 5733 03:59:08,640 --> 03:59:10,320 THINGS COST AND YOU NEED A GOOD 5734 03:59:10,320 --> 03:59:15,120 HEALTH ECONOMIST ON YOUR TEAM. 5735 03:59:15,120 --> 03:59:16,400 THEY'RE INTERESTED IN BEHAVIORAL 5736 03:59:16,400 --> 03:59:17,200 SCIENCE AND THEY'RE SCARCE AND 5737 03:59:17,200 --> 03:59:19,840 WHEN YOU FIND A GOOD ONE THEY'RE 5738 03:59:19,840 --> 03:59:24,000 A WONDERFUL PERSON TO HAVE ON 5739 03:59:24,000 --> 03:59:24,240 YOUR TEAM. 5740 03:59:24,240 --> 03:59:29,880 I'M LUCKY I WORK WITH A GREAT 5741 03:59:29,880 --> 03:59:30,560 HEALTH ECONOMIST. 5742 03:59:30,560 --> 03:59:32,320 I ENCOURAGE YOU TO LOOK FOR ONE 5743 03:59:32,320 --> 03:59:36,440 AND I KNOW WHAT YOU MEAN ABOUT 5744 03:59:36,440 --> 03:59:38,120 FINDING A BIO STATISTICIAN TO DO 5745 03:59:38,120 --> 03:59:40,600 THE KIND OF PROBABLY POWER 5746 03:59:40,600 --> 03:59:41,360 ANALYSIS YOU NEED. 5747 03:59:41,360 --> 03:59:44,360 YOU HAVE TO DO A POWER ANALYSTS 5748 03:59:44,360 --> 03:59:46,520 BEFORE YOU CAN GET A SENSE OF 5749 03:59:46,520 --> 03:59:48,080 WHAT THE COST OF A PARTICULAR 5750 03:59:48,080 --> 03:59:49,800 EXPERIMENTAL DESIGN IS GOING TO 5751 03:59:49,800 --> 03:59:50,000 BE. 5752 03:59:50,000 --> 03:59:55,280 BY THE WAY, THERE'S A CHAPTER IN 5753 03:59:55,280 --> 03:59:58,360 MY BOOK THAT THE ED BOOK THAT 5754 03:59:58,360 --> 04:00:03,840 GOES OVER HOW YOU COMPUTE THE 5755 04:00:03,840 --> 04:00:06,520 COST OF AN EXPERIMENT TO COMPARE 5756 04:00:06,520 --> 04:00:07,640 THE COST OF EXPERIMENTAL 5757 04:00:07,640 --> 04:00:11,440 DESIGNS. 5758 04:00:11,440 --> 04:00:16,560 I TALKED ABOUT THE COURSERA 5759 04:00:16,560 --> 04:00:19,960 COURSE AND I HOPE BY MID MAY 5760 04:00:19,960 --> 04:00:22,400 WE'LL HAVE ANOTHER COURSE UP 5761 04:00:22,400 --> 04:00:22,600 THERE. 5762 04:00:22,600 --> 04:00:26,360 A FREE ASYNCHRONOUS COURSE FOR 5763 04:00:26,360 --> 04:00:28,200 BIO STATISTICIANS ON BEHAVIORAL 5764 04:00:28,200 --> 04:00:32,720 SCIENCE TEAM. 5765 04:00:32,720 --> 04:00:34,240 YOU CAN SUGGEST HE OR SHE TAKE 5766 04:00:34,240 --> 04:00:35,480 THAT COURSE. 5767 04:00:35,480 --> 04:00:38,800 THAT WILL HELP THEM GET STARTED. 5768 04:00:38,800 --> 04:00:41,880 YOU CAN ALWAYS POINT PEOPLE 5769 04:00:41,880 --> 04:00:43,000 TOWARD MY BOOK. 5770 04:00:43,000 --> 04:00:44,720 >>THANK YOU. 5771 04:00:44,720 --> 04:00:47,920 >>AND OPTIMIZATION TRIAL BE 5772 04:00:47,920 --> 04:00:51,960 CONDUCTED AFTER THERE IS 5773 04:00:51,960 --> 04:00:56,800 EVIDENCE OF EFFECTIVENESS? 5774 04:00:56,800 --> 04:00:58,400 >>IT DEPENDS ON THE RESEARCH 5775 04:00:58,400 --> 04:01:01,560 QUESTIONS BUT DEFINITELY. 5776 04:01:01,560 --> 04:01:06,320 SOMETIMES PEOPLE ASK ME DON'T 5777 04:01:06,320 --> 04:01:07,880 YOU EVERYONE SHOULD DO A 5778 04:01:07,880 --> 04:01:09,960 CLASSICAL TREATMENT PACKAGE RCT 5779 04:01:09,960 --> 04:01:11,880 AND ESTABLISH A SIGNAL AND THEN 5780 04:01:11,880 --> 04:01:14,920 DO AN OPTIMIZATION TRIAL AND MY 5781 04:01:14,920 --> 04:01:17,160 ANSWER IS HARD NO. 5782 04:01:17,160 --> 04:01:20,520 I DOESN'T MEAN IF YOU'VE DONE IT 5783 04:01:20,520 --> 04:01:22,400 ALREADY YOU CAN'T CONDUCT THE 5784 04:01:22,400 --> 04:01:24,560 TRIAL, YOU DEFINITELY CAN AND I 5785 04:01:24,560 --> 04:01:26,520 ENCOURAGE YOU TO DO SO BUT IS A 5786 04:01:26,520 --> 04:01:36,000 TREATMENT PACKAGE RCT A LOGICAL 5787 04:01:36,000 --> 04:01:36,320 PREREQUISITE. 5788 04:01:36,320 --> 04:01:37,640 I ALWAYS RECOMMEND AN 5789 04:01:37,640 --> 04:01:47,800 OPTIMIZATION TRIAL FIRST. 5790 04:01:47,800 --> 04:01:56,960 >>YOUR PRESENTATION -- 5791 04:01:56,960 --> 04:01:58,680 [BACKGROUND NOISE] 5792 04:01:58,680 --> 04:02:02,200 HOW CAN WE DELIVER SUCH 5793 04:02:02,200 --> 04:02:03,440 INTERVENTIONS FOR PERSONS WORTHY 5794 04:02:03,440 --> 04:02:05,240 OF CARE PROVIDERS AND THOSE 5795 04:02:05,240 --> 04:02:06,480 LIVING WITH DEMENTIA. 5796 04:02:06,480 --> 04:02:11,600 HOW DO WE MEET THE NEEDS OF 5797 04:02:11,600 --> 04:02:13,840 PROVIDERS REALIZING EACH HAS 5798 04:02:13,840 --> 04:02:15,240 CONSTRAINTS WITH REGARDS TO 5799 04:02:15,240 --> 04:02:24,880 TIME, MONEY, ETCETERA. 5800 04:02:24,880 --> 04:02:26,240 >>IT'S POSSIBLE. 5801 04:02:26,240 --> 04:02:28,240 YOU CERTAINLY CAN CONDUCT AN 5802 04:02:28,240 --> 04:02:29,240 OPTIMIZATION TRIAL WHERE THE 5803 04:02:29,240 --> 04:02:32,040 UNIT OF RANDOM ASSIGNMENT IS AN 5804 04:02:32,040 --> 04:02:33,160 ORGANIZATION RATHER THAN AN 5805 04:02:33,160 --> 04:02:35,920 INDIVIDUAL AND IT IS POSSIBLE TO 5806 04:02:35,920 --> 04:02:41,120 USE EXPERIMENTAL DESIGNS THAT 5807 04:02:41,120 --> 04:02:43,840 INVOLVE NESTING AND THERE'S 5808 04:02:43,840 --> 04:02:47,520 EXPERTS IN THE EXPERIMENTAL 5809 04:02:47,520 --> 04:02:48,480 DESIGN FOR OPTIMIZATION TRIALS 5810 04:02:48,480 --> 04:02:54,040 AND SOMETHING ELSE IS YES, IT'S 5811 04:02:54,040 --> 04:02:57,280 DEFINITELY THE CASE DIFFERENT 5812 04:02:57,280 --> 04:03:04,960 SETTINGS HAVE DIFFERENT CON -- 5813 04:03:04,960 --> 04:03:06,440 CONSTRAINTS AND IF YOU CONDUCT A 5814 04:03:06,440 --> 04:03:09,760 TRIAL AND CAN ASSUME THE RESULTS 5815 04:03:09,760 --> 04:03:11,440 OF THE TRIAL CAN GENERALIZE 5816 04:03:11,440 --> 04:03:13,920 ACROSS THE SETTINGS, THEN YOU 5817 04:03:13,920 --> 04:03:17,280 ACTUALLY CAN USE THE ONE 5818 04:03:17,280 --> 04:03:18,560 OPTIMIZATION TRIAL TO OPTIMIZE 5819 04:03:18,560 --> 04:03:21,640 USING THE CONSTRAINTS IN THE 5820 04:03:21,640 --> 04:03:24,440 DIFFERENT SETTINGS. 5821 04:03:24,440 --> 04:03:27,000 SO IN OTHER WORDS, ONE SETTING 5822 04:03:27,000 --> 04:03:28,960 TO TAKE A SIMPLE EXAMPLE ONE MAY 5823 04:03:28,960 --> 04:03:31,920 BE ABLE TO AFFORD $500 A PERSON 5824 04:03:31,920 --> 04:03:33,600 AND ANOTHER MAY ONLY BE ABLE TO 5825 04:03:33,600 --> 04:03:39,360 AFFORD $200 A PERSON. 5826 04:03:39,360 --> 04:03:41,840 YOU CAN USE THE SAME RESULTS TO 5827 04:03:41,840 --> 04:03:43,160 OPTIMIZE WITH THE CONSTRAINT OF 5828 04:03:43,160 --> 04:03:48,200 $500 A PERSON OR $200 A PERSON. 5829 04:03:48,200 --> 04:03:50,040 THE POINT TO MAKE HERE IS THE 5830 04:03:50,040 --> 04:03:51,440 OPTIMIZED INTERVENTION FOR THE 5831 04:03:51,440 --> 04:03:54,040 $200 A PERSON SETTING IS NOT 5832 04:03:54,040 --> 04:03:55,360 NECESSARILY GOING TO BE MADE UP 5833 04:03:55,360 --> 04:03:59,960 OF THE SUBSET OF THE COMPONENTS 5834 04:03:59,960 --> 04:04:02,360 IN THE $500 PERSON INTERVENTION 5835 04:04:02,360 --> 04:04:04,440 GOING TO SHOW IT'S A BAD IDEA TO 5836 04:04:04,440 --> 04:04:07,280 TAKE A BUNCH OF COMPONENTS AND 5837 04:04:07,280 --> 04:04:08,120 START PULLING OUT COMPONENTS 5838 04:04:08,120 --> 04:04:09,800 JUST IN ORDER TO MAKE AN 5839 04:04:09,800 --> 04:04:14,000 INTERVENTION AFFORDABLE. 5840 04:04:14,000 --> 04:04:15,920 IT'S BETTER TO START WITH AN 5841 04:04:15,920 --> 04:04:16,880 IDEA AND OPTIMIZE TO MEET THE 5842 04:04:16,880 --> 04:04:23,840 CONSTRAINTS. 5843 04:04:23,840 --> 04:04:25,120 >>IS MOST ONLY FOR CATEGORICAL 5844 04:04:25,120 --> 04:04:29,480 DATA? 5845 04:04:29,480 --> 04:04:34,000 >>I THINK THAT MEANS IS IT ONLY 5846 04:04:34,000 --> 04:04:35,960 FOR SITUATION WHERE'S THE 5847 04:04:35,960 --> 04:04:37,120 INDEPENDENT VARIABLE IS 5848 04:04:37,120 --> 04:04:44,120 CATEGORICAL PERHAPS. 5849 04:04:44,120 --> 04:04:46,320 I USUALLY RECOMMEND PEOPLE STICK 5850 04:04:46,320 --> 04:04:47,880 TO TWO LEVELS OF THE INDEPENDENT 5851 04:04:47,880 --> 04:04:48,800 VARIABLE BECAUSE WHEN YOU HAVE 5852 04:04:48,800 --> 04:04:54,800 MORE THAN TWO LEVELS OF THE 5853 04:04:54,800 --> 04:04:56,320 INDEPENDENT VARIABLE THEN THE 5854 04:04:56,320 --> 04:04:58,840 RESOURCE REQUIREMENTS OF THE 5855 04:04:58,840 --> 04:05:00,600 OPTIMIZATION TRIAL REALLY 5856 04:05:00,600 --> 04:05:00,960 MUSHROOM. 5857 04:05:00,960 --> 04:05:03,200 IF YOU ADD EVEN ONE LEVEL TO ONE 5858 04:05:03,200 --> 04:05:05,720 FACTOR YOU'RE LOOKING AT LEAST 5859 04:05:05,720 --> 04:05:07,040 HALF AS MANY PARTICIPANTS TO 5860 04:05:07,040 --> 04:05:10,920 POWER THE STUDY. 5861 04:05:10,920 --> 04:05:13,640 I START WITH THE HIGHEST AND 5862 04:05:13,640 --> 04:05:16,520 LOWEST LEVEL YOU'D REASONABLY 5863 04:05:16,520 --> 04:05:19,120 USE AND IF THERE'S NO 5864 04:05:19,120 --> 04:05:21,400 DIFFERENCE -- YOU DON'T CARE 5865 04:05:21,400 --> 04:05:22,680 ABOUT THE MIDDLE ONE UNLESS YOU 5866 04:05:22,680 --> 04:05:27,440 THINK THERE'S A LINEAR 5867 04:05:27,440 --> 04:05:27,800 RELATIONSHIP. 5868 04:05:27,800 --> 04:05:29,120 YOU DON'T THINK YOU'LL BE DOING 5869 04:05:29,120 --> 04:05:29,920 JUST ONE EXPERIMENT. 5870 04:05:29,920 --> 04:05:36,840 IT'S MORE ITERATIVE. 5871 04:05:36,840 --> 04:05:37,640 >>THANK YOU SO MUCH. 5872 04:05:37,640 --> 04:05:39,120 WE HAVE LOTS OF OTHER QUESTION 5873 04:05:39,120 --> 04:05:40,560 AND INTERESTS BUT WE NEED TO END 5874 04:05:40,560 --> 04:05:41,280 THE SESSION. 5875 04:05:41,280 --> 04:05:45,760 I'D LIKE TO THANK ALL OF YOU FOR 5876 04:05:45,760 --> 04:05:46,160 AN EXCITING PANEL. 5877 04:05:46,160 --> 04:05:56,360 THANK YOU. 5878 04:05:59,600 --> 04:06:03,440 >>THANK YOU FOR THE EXCITING 5879 04:06:03,440 --> 04:06:05,240 DISCUSSION AND THANK YOU FOR 5880 04:06:05,240 --> 04:06:09,920 JOINING THE SUMMIT AND FOR THE 5881 04:06:09,920 --> 04:06:10,240 PRESENTERS. 5882 04:06:10,240 --> 04:06:12,720 I'LL CONCLUDE WITH A SUMMARY AND 5883 04:06:12,720 --> 04:06:14,520 PASS IT TO JULIE FOR A BRIEF 5884 04:06:14,520 --> 04:06:16,200 LOOK OF WHAT TO EXPECT TOMORROW 5885 04:06:16,200 --> 04:06:17,000 AND HOPE YOU ALL WILL CERTAINLY 5886 04:06:17,000 --> 04:06:20,840 JOIN US. 5887 04:06:20,840 --> 04:06:24,440 WE BEGAN FROM HEARING FROM 5888 04:06:24,440 --> 04:06:27,200 FACILITATORS AND MEMBERS WITH 5889 04:06:27,200 --> 04:06:29,200 THE PANEL AND LES BURGER 5890 04:06:29,200 --> 04:06:31,160 HIGHLIGHTING THE SENSE OF 5891 04:06:31,160 --> 04:06:32,160 URGENCY WITH WHICH WE MUCH UNDER 5892 04:06:32,160 --> 04:06:36,440 PIN OUR EFFORTS TO IMPROVE 5893 04:06:36,440 --> 04:06:37,240 DEMENTIA CARE AND TREATMENT OF 5894 04:06:37,240 --> 04:06:38,560 ALZHEIMER'S DISEASE AND OTHER 5895 04:06:38,560 --> 04:06:39,800 DEMENTIA. 5896 04:06:39,800 --> 04:06:43,200 WE HEARD FROM PANEL MEMBER RITA 5897 04:06:43,200 --> 04:06:45,440 HARRISON HIGHLIGHTING THE STIGMA 5898 04:06:45,440 --> 04:06:48,680 AND WHAT MATTERS MOST TO HER AS 5899 04:06:48,680 --> 04:06:52,600 A PERSON LIVING WITH COGNITIVE 5900 04:06:52,600 --> 04:06:53,000 SYMPTOMS. 5901 04:06:53,000 --> 04:06:55,320 WE HEARD ABOUT PROGRESS AND 5902 04:06:55,320 --> 04:06:57,520 PRIORITIES SURROUNDING DEMENTIA 5903 04:06:57,520 --> 04:07:00,360 CARE AND CARE GIVING RESEARCH AT 5904 04:07:00,360 --> 04:07:01,440 THE NATIONAL INSTITUTE ON AGING 5905 04:07:01,440 --> 04:07:03,280 INCLUDING ADVANCEMENT OF EFFORTS 5906 04:07:03,280 --> 04:07:03,880 CONSISTENT WITH THE NIH STAGE 5907 04:07:03,880 --> 04:07:09,000 MODEL. 5908 04:07:09,000 --> 04:07:11,320 OUR FIRST SESSION 1 FOCUSSED ON 5909 04:07:11,320 --> 04:07:15,640 WHAT MATTERS AND LIVING WELL 5910 04:07:15,640 --> 04:07:16,360 WITH DEMENTIA. 5911 04:07:16,360 --> 04:07:19,800 PRESENTERS AND REMARKS 5912 04:07:19,800 --> 04:07:21,120 HIGHLIGHTED WE STILL HAVE 5913 04:07:21,120 --> 04:07:22,600 CONSIDERING WORK TO DEVELOP 5914 04:07:22,600 --> 04:07:24,920 VALID AND RELIABLE MEASURES THAT 5915 04:07:24,920 --> 04:07:26,160 CAPTURE AND ARE SENSITIVE TO 5916 04:07:26,160 --> 04:07:27,960 CHANGES IN WHAT MATTERS POST TO 5917 04:07:27,960 --> 04:07:29,720 PEOPLE LIVING WITH DEMENTIA AND 5918 04:07:29,720 --> 04:07:30,440 THEIR CAREGIVERS AND/OR CARE 5919 04:07:30,440 --> 04:07:36,160 PARTNERS. 5920 04:07:36,160 --> 04:07:39,360 THERE'S CONGRUENCE WITH THE 5921 04:07:39,360 --> 04:07:41,600 ITEMS USED IN COMMON CORE 5922 04:07:41,600 --> 04:07:43,640 OUTCOME MEASURES TO EVALUATE 5923 04:07:43,640 --> 04:07:45,040 WELL BEING WITH WHAT PEOPLE 5924 04:07:45,040 --> 04:07:47,560 STATED IS MOST IMPORTANT TO 5925 04:07:47,560 --> 04:07:47,960 THEM. 5926 04:07:47,960 --> 04:07:50,480 IMPORTANT OPPORTUNITIES FOR 5927 04:07:50,480 --> 04:07:53,080 RESEARCH RESEARCH THERE WE HEARD 5928 04:07:53,080 --> 04:07:54,240 ABOUT THE UTILITY AND 5929 04:07:54,240 --> 04:07:59,160 CONSIDERATIONS FOR SPECIFIC 5930 04:07:59,160 --> 04:08:03,920 APPROACHES TO MEASUREMENT 5931 04:08:03,920 --> 04:08:05,120 INCLUDING MEASURES OF AT 5932 04:08:05,120 --> 04:08:08,000 HOMENESS AND GOAL ATTAINMENT 5933 04:08:08,000 --> 04:08:13,040 SCALING AS A SPECIFIC APPROACH 5934 04:08:13,040 --> 04:08:15,000 FOR CLINICAL USE ENVIRONMENT AND 5935 04:08:15,000 --> 04:08:17,200 IN RESEARCH TO MONITOR OUTCOMES. 5936 04:08:17,200 --> 04:08:20,520 PANELISTS HIGHLIGHTED FOR US THE 5937 04:08:20,520 --> 04:08:24,040 VALUE AND UTILITY OF MIXED 5938 04:08:24,040 --> 04:08:27,920 METHODS USING QUALITATIVE AND 5939 04:08:27,920 --> 04:08:28,760 QUANTITATIVE APPROACHES TO 5940 04:08:28,760 --> 04:08:30,280 FACILITATE MEASUREMENT OF ITEMS 5941 04:08:30,280 --> 04:08:32,520 THAT MAY BE SUBJECTIVE OR 5942 04:08:32,520 --> 04:08:33,720 HETEROGENOUS ACROSS INDIVIDUALS 5943 04:08:33,720 --> 04:08:36,720 AND OVER TIME. 5944 04:08:36,720 --> 04:08:42,920 SESSION 2 FOCUSSED ON DETECTION 5945 04:08:42,920 --> 04:08:45,360 HIGHLIGHTED FOR US FOR 5946 04:08:45,360 --> 04:08:48,000 DISPARITIES IN CARE ACCESS AND 5947 04:08:48,000 --> 04:08:52,320 USE PATTERNS ACROSS POPULATIONS 5948 04:08:52,320 --> 04:08:53,480 AS WELL AS UNDERLYING DISEASE 5949 04:08:53,480 --> 04:08:54,640 RISK WITH EFFORTS WE WANT TO 5950 04:08:54,640 --> 04:08:59,120 MOVE FORWARD TO FACILITATE 5951 04:08:59,120 --> 04:09:00,040 EQUITABLE DETECTION AND 5952 04:09:00,040 --> 04:09:02,480 DIAGNOSIS OF DEMENTIA ACROSS 5953 04:09:02,480 --> 04:09:05,720 VARIOUS DATA SOURCES THAT MAY BE 5954 04:09:05,720 --> 04:09:09,640 AVAILABLE TO US FOCUSSING ON THE 5955 04:09:09,640 --> 04:09:11,960 ELECTRONIC HEALTH RECORD WHICH 5956 04:09:11,960 --> 04:09:13,000 HAS INFORMATION ABOUT DIAGNOSIS 5957 04:09:13,000 --> 04:09:14,640 SOMEONE MAY HAVE AND INFORMATION 5958 04:09:14,640 --> 04:09:19,360 THAT IS WRITTEN IN NOTES AND IN 5959 04:09:19,360 --> 04:09:22,080 A STRUCTURED WAY A CLINICAL 5960 04:09:22,080 --> 04:09:23,280 PROVIDER MAY HAVE BEEN AN 5961 04:09:23,280 --> 04:09:24,520 INDIVIDUAL OR IN THE COURSE OF 5962 04:09:24,520 --> 04:09:26,800 CARE DELIVERY. 5963 04:09:26,800 --> 04:09:28,000 PANELISTS HIGHLIGHTED ATTENTION 5964 04:09:28,000 --> 04:09:31,160 TO IMPORTANT LIMITATIONS AND 5965 04:09:31,160 --> 04:09:32,000 TRADE-OFFS THAT EXIST THE 5966 04:09:32,000 --> 04:09:36,680 VARIOUS DATA SOURCES THAT WE MAY 5967 04:09:36,680 --> 04:09:39,120 WANT TO LEVERAGE IN RESEARCH TO 5968 04:09:39,120 --> 04:09:43,960 FACILITATE DETECTION AND 5969 04:09:43,960 --> 04:09:50,400 REAL-WORLD ENVIRONMENTS AND THE 5970 04:09:50,400 --> 04:09:56,520 LACK OF GOLD STANDARD RESOURCES 5971 04:09:56,520 --> 04:10:01,720 AND THOSE CHARACTERISTICS OF 5972 04:10:01,720 --> 04:10:03,360 INDIVIDUALS AND THOSE VULNERABLE 5973 04:10:03,360 --> 04:10:05,480 TO EXCLUSION OR UNDER 5974 04:10:05,480 --> 04:10:06,320 REPRESENTED IN CARE RESEARCH WE 5975 04:10:06,320 --> 04:10:16,400 SEE. 5976 04:10:18,560 --> 04:10:20,400 IT HIGHLIGHTED LISTENING IN 5977 04:10:20,400 --> 04:10:24,640 RESEARCH SURROUNDING DEMENTIA 5978 04:10:24,640 --> 04:10:25,880 CARE AND CAREGIVER AND FOR 5979 04:10:25,880 --> 04:10:30,640 LOOKING AHEAD TO DAY TWO AND 5980 04:10:30,640 --> 04:10:33,720 THREE WE'LL HEAR MORE IN SESSION 5981 04:10:33,720 --> 04:10:35,360 5 TOMORROW AND SESSION 8 ON THE 5982 04:10:35,360 --> 04:10:42,080 THIRD DAY OF THE SUMMIT. 5983 04:10:42,080 --> 04:10:47,200 WE HAD A FANTASTIC SESSION THAT 5984 04:10:47,200 --> 04:10:48,000 HIGHLIGHTED OPPORTUNITIES TO 5985 04:10:48,000 --> 04:10:50,560 CONSIDER IN THE DEMENTIA CARE 5986 04:10:50,560 --> 04:10:52,800 AND CARE GIVING RESEARCH FIELD 5987 04:10:52,800 --> 04:10:54,480 AND WAYS TO ACCELERATE THE 5988 04:10:54,480 --> 04:10:58,760 USABILITY AND THE READINESS AND 5989 04:10:58,760 --> 04:11:02,160 EASE OF IMPLEMENTATION BY USING 5990 04:11:02,160 --> 04:11:06,040 STRATEGY AS AN AN APPROACH TO 5991 04:11:06,040 --> 04:11:10,080 BALANCING EFFECTIVENESS AGAINST 5992 04:11:10,080 --> 04:11:12,520 AFFORDABILITY AND THE DEGREE OF 5993 04:11:12,520 --> 04:11:15,880 EASE OF IMPLEMENTATION AND IN 5994 04:11:15,880 --> 04:11:18,720 CLOSING I'D BE REMISS IF I DID 5995 04:11:18,720 --> 04:11:20,120 NOT HIGHLIGHT PERHAPS ONE OF THE 5996 04:11:20,120 --> 04:11:21,680 MOST IMPORTANT MESSAGES ACROSS 5997 04:11:21,680 --> 04:11:27,480 OUR SESSIONS TODAY REGARD THIG 5998 04:11:27,480 --> 04:11:28,160 PRIORITIES AND NEEDS OF PEOPLE 5999 04:11:28,160 --> 04:11:29,800 LIVING WITH DEMENTIA WITH 6000 04:11:29,800 --> 04:11:33,000 RESPECT AND PERSON-CENTERED 6001 04:11:33,000 --> 04:11:34,800 APPROACHES AND CARE MEAN TO 6002 04:11:34,800 --> 04:11:42,320 INDIVIDUALS AND WHAT THEY T 6003 04:11:42,320 --> 04:11:43,360 TANGIBLY LOOK LIKE AND 6004 04:11:43,360 --> 04:11:47,880 HIGHLIGHTED THE IMPERATIVES FOR 6005 04:11:47,880 --> 04:11:49,520 RECOGNIZING VALUING AND 6006 04:11:49,520 --> 04:11:50,680 UNDERSTANDING HOW TO MAINTAIN 6007 04:11:50,680 --> 04:11:56,280 AND STRENGTHEN THE ASPECT OF 6008 04:11:56,280 --> 04:12:02,560 CARE AND DEMENTIA AND YOU'RE 6009 04:12:02,560 --> 04:12:05,840 STILL A PERSON AND TALKING ABOUT 6010 04:12:05,840 --> 04:12:08,440 THE JOURNEY OF DEMENTIA AND 6011 04:12:08,440 --> 04:12:09,800 WANTING TO BE RECOGNIZED AS A 6012 04:12:09,800 --> 04:12:12,040 PERSON NOT A USED TO BE BUT IS. 6013 04:12:12,040 --> 04:12:14,640 I HOPE THIS WILL ECHO WITH US 6014 04:12:14,640 --> 04:12:16,640 AND I WANT TO THANK EVERYONE FOR 6015 04:12:16,640 --> 04:12:17,720 YOUR PARTICIPATION TODAY. 6016 04:12:17,720 --> 04:12:23,240 OVER TO JULIE. 6017 04:12:23,240 --> 04:12:26,720 >>I GET TO WRAP UP BY THANKING 6018 04:12:26,720 --> 04:12:31,680 EVERYONE AGAIN, PARTICIPANTS AND 6019 04:12:31,680 --> 04:12:33,200 DISCUSSANTS AND WE'LL BEGIN 6020 04:12:33,200 --> 04:12:35,440 TOMORROW WITH ADDITIONAL INSIGHT 6021 04:12:35,440 --> 04:12:40,640 FROM OUR LIVED EXPERIENCE PANELS 6022 04:12:40,640 --> 04:12:46,720 AND WE HAVE ONE ON DEMENTIA CARE 6023 04:12:46,720 --> 04:12:49,560 MODELS AND CARE AND DISPARITIES 6024 04:12:49,560 --> 04:12:52,720 IN HEALTH CARE ACCESS AND 6025 04:12:52,720 --> 04:12:53,720 UTILIZATION AND QUALITY AND 6026 04:12:53,720 --> 04:12:55,040 SUPPORT THE CARE PARTNERS. 6027 04:12:55,040 --> 04:12:57,560 ENJOY YOUR EVENING OR AFTERNOON 6028 04:12:57,560 --> 04:12:58,680 DEPENDING ON WHERE YOU'RE 6029 04:12:58,680 --> 04:12:58,920 LOCATED. 6030 04:12:58,920 --> 00:00:00,000 THANK YOU, EVERYONE.