SUMMIT ON CARE AND SVRSS AND SUPPORT FOR PERSONS LIVING WITH DEMENTIA AND CAREGIVERS BY THE NATIONAL INSTITUTE ON AGING. I'M JULIE ZISSIMOPOULOS AND I SERVE AS SUMMIT CO-CHAIR WITH ANDREA GILMORE-BYKOVSKYI. WE HAVE AN EXCELLENT DAY PLANNED WITH LIVED EXPERIENCE PANEL AND STAKEHOLDER ENGAGEMENT PANEL AND FOLLOWING WE HAVE THREE SESSIONS, DEMENTIA CARE MODELS AND COORDINATION OF CARE AND DISPARITY INS HEALTH CARE ACCESS, UTILIZATION AND QUALITY AND SUPPORT FOR CARE PARTNERS AND CAREGIVERS. AS A REMINDER FOR THOSE JUST JOINING THERE'S SEVERAL WAYS FOR PARTICIPANTS TO SUBMIT QUESTION DURING THE QUESTION AND ANSWER SESSION. IF YOU'RE JOINING BY ZOOM, ENTER YOUR QUESTION IN THE Q&A BOX. IF YOU'RE JOINING VIA THE NIH VIDEOCAST USE THE SEND LIVE FEEDBACK BUTTON AND YOUR QUESTION WILL BE ADDED TO THE ZOOM Q&A. THERE MAY BE A SLIGHT DELAY. IF YOUR QUESTIONS ARE NOT ANSWERED LIVE, PRESENTERS AND PANELISTS WILL TRY TO ANSWER. IF YOU HAVE QUESTIONS YOU WERE NOT ABLE TO ASK DURING THE SUMMIT OR WANTED TO SHARE WITH PLANNERS AND NIA, YOU HAVE AN OPPORTUNITY TO JOIN US TOMORROW AT 4:00 P.M. EASTERN STANDARD TIME FOR A POST-SUMMIT LISTENING SESSION. WE LOOK FORWARD TO HEARING QUESTIONS AND COMMENTS AND IDEAS AT THIS SESSION AND ENCOURAGE THOSE LIVING WITH COGNITIVE SYMPTOMS AND THEIR CARE PARTNERS TO JOIN. I'M PLEASED TO WELCOME HEIDI GIL AND IAN KREMMER AND ROBERTA CRUZ. I TURN IT OVER TO YOU, HEIDI TO GET US STARTED. >>CAN YOU HEAR ME? >>YES, WE CAN. >>HELLO. IT WAS AN HONOR TO HAVE FACILITATED THE STAKEHOLDER PANEL AND PLEASURE TO BE WITH YOU TODAY. WE HAD A PASSIONATE GROUP THAT MET OVER TWO 90 MINUTE SESSION TO SHARE PERSPECTIVES ON RESEARCH GAPS AND OPPORTUNITIES. WITH BACKGROUNDS IN RESEARCH, POLICY AND PRACTICE, THE VOICES OF 11 STAKEHOLDER REPRESENT THE RESEARCH POLICY AND PRACTICE AND WERE VOICES OF 11 STAKEHOLDERS THAT REPRESENT ALSO DIRECT CARE WORKERS, HEALTH SERVICE PROVIDERS AND PATIENT ADVOCATES AND RESEARCHERS. I REALLY ENJOYED THEIR ENERGY AS WE TACKLED THE THEMES AND SESSIONS. QUESTIONS WERE OPPOSED TO HIGHLIGHT PROMISING INNOVATIONS IN RESEARCH, UNDERSTAND WHAT'S GOING WELL ALONG WITH THE BARRIERS AND CHALLENGES THAT EXIST ON AN INDIVIDUAL AND SYSTEMS LEVEL AND FIRST THE INDIVIDUAL LEVEL. WHAT MATTERS WITH LIVING WELL WITH ALZHEIMER'S DISEASE AND RELATED DEMENTIAS. DISEASE-RELATED DEM EN HAS AND DETECTION AND DIAGNOSIS AND MANAGING OF WORSENING CONDITIONS AND COORDINATION OF CARE. THE SECOND SESSION LOOKED AT THE WORKFORCE, DISPARITIES AND HEALTH CARE ACCESS, UTILIZATION AND QUALITY, ECONOMIC IMPACTS AND APPROACHES TO PARTICIPATORY RESEARCH AND DIVERSE RECRUITMENT AND RETENTION. AND SO WE'RE SO THANKFUL TO THE TEAM AT ROSEA LEE ASSOCIATES WHO CAPTURED THE SUMMARY AND WHAT IS OUTLINED IS THE CONTENT OF THE REPORT MY COLLEAGUE AND PANEL PARTICIPANT IAN KREMMER HELPED PULL TOGETHER HIGHLIGHTS AND PLEASE TAKE THE OPPORTUNITY TO READ THE DEPTH OF PERSPECTIVES IN THIS REPORT. WITH LIMITED TIME FOR MY REMARKS I CAN ONLY HELP BUT EMPHASIZE THREE THEMES THAT WERE RELEVANT IN BOTH THE LIVED EXPERIENCE AND STAKEHOLDER PANELS. STARTING WITH STIGMA WITH THE CROSS-CUTTING THEMES. RESEARCH TO DATE HAS PRIMARILY FOCUSSED ON IDENTIFYING RESEARCH RATHER THAN INVENTIONS THAT REDUCE STIGMA AND THE IMPACT ON DEMENTIA CARE. PANELISTED NOTED HOW STIGMA HAS AN IMPACT ON DIAGNOSIS AND SCREENING AND WITH TO THE EXPERIENCE OF COGNITIVE CHANGE AND DECLINE. THERE'S A NEED TO ATTEND TO THE LANGUAGE AND NOMENCLATURE THAT CAUSES STIGMA AND FEAR. WE MUST HONOR THE WORK OF THE DEMENTIA NOMENCLATURE INITIATIVE AND CONTINUE TO ASK OURSELVES WHAT IS THE NOMENCLATURE THAT WILL SUPPORT PRODUCTIVITY AND ACTION RATHER THAN CAUSE FEAR AND WHAT WORKS WITH STIGMA AS ASSOCIATED WITH HIV AND CANCER. IN ADDRESSING CARE MODELS IN TRANSITIONS, BOTH PANELS SHARE PEOPLE WERE UNDER PREPARED FOR DISEASE PREVENTION, PROACTIVE CONVERSATIONS AND PLANNING ARE NEEDED ABOUT THE EVENTS THAT RESULT IN AVOIDABLE E.R. VISITS AND NECESSITATE A HIGHER LEVEL OF CARE. PANELISTS HIGHLIGHTED COLLABORATIVE CARE MODELS AND EMPHASIZED MORE RESEARCH ON THESE MODELS ARE NEEDED PARTICULARLY ON THE IMPACT OF RURAL AREAS AND POPULATION ARE DIVERSE. PANELISTS HIGHLIGHTED CARE NAVIGATION PROGRAMS FALL OUTSIDE THE DOMINANT CARE MEDICAL MODEL AND THE DIFFERENT PROGRAMS RELATED TO WELL BEING AND HEALTHY LIFE STYLES SUCH AS STRESS MANAGEMENT, SLEEP, NUTRITION, PHYSICAL FITNESS, SOCIAL CONNECTION AND FINDING, MEANING AND PURPOSE. AND FROM THE LIVED EXPERIENCE PANEL ECHOED STAKEHOLDERS WHEN VOICING HELPING PEOPLE NAVIGATE DEMENTIA IN THIS COMPREHENSIVE WAY ARE INSUFFICIENT AND NEED TO HAPPEN FROM THE BEGINNING OF DIAGNOSIS. THERE'S LIMIT TO ACCESS TO THIS TYPE OF SUPPORT. RESEARCH IS NEEDED TO EVALUATE THE POTENTIAL BENEFITS OF CARE NAVIGATORS TO BRIDGE THE GAP WITH PLANNING AND INTEGRATING HEALTH CARE NEEDS WITH GOALS THAT ALSO ATTEND TO WELL BEING AND RESILIENCE. SO IN SCALING HOME-BASED SERVICE AND SUPPORTS, RESEARCH IS NEEDED ON WHAT INFORMAL AND FORMAL CARE IS PROVIDED IN THE HOME AND ASSET THINGS LIKE TECHNOLOGY, LOOKING AT QUALITY AND SAFETY AND WHETHER TRAINING IS IMPROVING OUTCOMES. ACROSS BOTH PANELS IT WAS NOTED TENSIONS ARISE BETWEEN MANAGING HOME AND MAINTAINING SAFETY. WITH THE LIVED EXPERIENCE PANEL, VOICING INDEPENDENCE AS WHAT MATTERS HOW CAN WE EVALUATE THE TRADEOFFS OF SUPPORTING QUALITY OF LIFE DECISIONS, REMAINING INDEPENDENT. I LOOK BACK ON MY EXPERIENCE AS A PINNACLE MOMENT WITH THE VOICES OF PERSONS IMPACTED BY DEMENTIA WERE PALPABLE. THANKS TO THE CONTINUED INSPIRATION FROM THE SUMMIT VENUE I VALUE WORKING WITH PERSONS IMPACTED WITH DEMENTIA THAT HAVE A DESIRE TO FIND MEANING, PURPOSE, AND EVEN JOY WITH RESEARCH AND AS PARTNERS. I'LL LET MY PARTNER DIVE DEEPER IN THE NEED FOR DOING RESEARCH FROM A PARTNERSHIP PERSPECTIVE AS A STRONG ADVOCATE FOR ROBUST STAKEHOLDER ENGAGEMENT, THANK YOU FOR THE OPPORTUNITY AND LISTENING TO THESE REMARKS TODAY AND TAKE IT AWAY AND THANK YOU ALL. SORRY MY CAMERA WAS NOT WORKING TODAY. >>THANK YOU, HEIDI. I HAVE THE PRIVILEGE OF SERVING ON THE STEERING COMMITTEES FOR THE 2017 AND 2020 SUMMITS. AGAIN AT THIS SUMMIT WE HAVE THE RESPONSIBILITY TO REFINE RESEARCH AREAS PRIORITIZED BY WHAT MATTERS MOST TO THOSE WHOSE QUALITY OF LIFE WE STRIVE TO IMPROVE. LIKE MANY OF YOU I'VE KNOWN THOUSANDS OF PEOPLE WITH LIVED EXPERIENCE. LIKE YOU, MY FAMILY HAS BEEN REPEATEDLY HIT HARD BY DEMENTIA. THE RECENT LOST DECEMBER 24 WHEN MY BRILLIANT FATHER DIED AFTER A STRUGGLE WITH DEMENTIA. THE LESSONS HE TAUGHT ME BEFORE AND AFTER IN DEMENTIA IS GREAT AND INFORMED THE RESEARCH PRIORITIES I HIGHLIGHT TODAY WHICH HAVE THE BENEFIT OF ALIGNING WITH TALKS THROUGHOUT THE SUMMIT. FIRST, DETECTION AND DIAGNOSIS, SEPARATE BUT RELATED STEPS MUST BE EQUITABLE, TIMELY, ACCURATE, COMPASSIONATE AND ACTIONABLE. ETECA. WE KNOW GRIEVOUS INEQUITIES EXIST FOR PEOPLE FACING DEM EN IS THAT. MOST ARE DIAGNOSED LATER IN PROGRESSION THAN TOOLS ALLOW AND TOO MANY RECEIVE AN INACCURATE OR VAGUE DIAGNOSIS. DIAGNOSE AND ADIOS IS COMMON BUT WE KNOW HOW TO DELIVER BAD NEWS WELL SO THESE SKILLS CAN BE TAUGHT, LEARNED AND HOLISTICALLY IMPLEMENTED. WE KNOW DIAGNOSIS IS NOT AN END BUT BEGINNING. DIAGNOSIS MUST RESULT IN CLINICIANS CONNECTING PATIENTS AND FAMILIES WITH COMMUNITY-BASED RESOURCE AND STUDY OPPORTUNITIES. WE NEED RESEARCH HOW TO TEST, TRANSLATE AND SCALE THE DIAGNOSIS AND PRINCIPLES. SECOND, THANKFULLY WE NO LONGER LABEL STUDY PARTICIPANTS AS SUBJECTS BUT IT'S INADEQUATE NEARLY TO TREAT THEM WITH DIGNITY. WE MUST SUPPORT PEOPLE FACING DEMENTIA TO BE FULL STUDY PARTNERS. WE NEED PEOPLE FACING DEMENTIA TO HELP GENERATE PRIORITIES FOR STUDIES AND DESIGN STUDIES. RATHER THAN ASK ONLY WHETHER OUR RESEARCH IDEAS ARE IMPORTANT, WE MUST ASK WHICH IDEAS ARE MOST IMPORTANT AND WHY. WE MUST ASK WHAT IDEAS THEY WOULD OFFER WE HAVE NOT IDENTIFIED. WE NEED RESEARCH ABOUT HOW TO ENGAGE PEOPLE WITH LIVED EXPERIENCE AT THE IDEATION STAGE AND HOW TO CONTINUOUSLY IMPROVE POORER OUTCOME SETS WITH PARTICULAR FOCUS ON DRIVING EQUITY IN THE CONTEXT OF HETEROGENEITY. THIRD, WE MUST BETTER UNDERSTAND HOW INNOVATIONS WORK IN REAL WORLD SETTINGS USED BY REAL-LIFE PROVIDERS AND PEOPLE FACING DEMENTIA. ALLOW KNOW SHARE ONE ANECDOTE ABOUT THE POWER OF ELECTRONIC HEALTH RECORDS IN CARE TRANSITIONS. E.H.R.s SHOULD BE INDISPENSABLE PREVENTING MEDICAL AREAS ESPECIALLY DURING HOSPITALIZATIONS BUT WHAT IF THE E.H.R. IS WRONG? THE HOSPITAL TRUSTING THE E.H.R. WHILE IGNORING PROTESTS FROM THE PATIENT OR PARTNER? THE HOSPITAL MY FATHER FREQUENTED CONSISTENTLY OMITTED INFORMATION FROM HIS SPECIALIST INCLUDING DIAGNOSED COGNITIVE IMPAIRMENTS AND MEDICATIONS FOR OTHER SERIOUS CONDITIONS. THE E.H.R. ALSO HAD THE DOSING WRONG FOR HIS GLAUCOMA MEDICATIONS, INVENTED HIM HAVING RESPIRATORY DISEASE AND MOST EGREGIOUSLY LISTED HIM AS FULL CODE DESPITE THE HOSPITAL HAVE BOTH HEART AND ELECTRONIC COPIES OF HIS D.N.R. ORDERS. DURING AND AFTER EACH HOSPITALIZATION I SPENT HOURS GETTING THE E.H.R. CORRECTED ONLY TO DISCOVER THE SAME ERRORS WITH EACH SUBSEQUENT HOSPITALIZATION. IF SUCH SYSTEM BREAK HAPPEN TO MY PRIVILEGED FAMILY, HOW WOULD PEOPLE FAIR IF THEY HAVE NO PRIVILEGE OR NO FAMILY? IF E.H.R. DATA ABOUT THE HEALTH CARE RECEIVED BY PEOPLE WITH DEMENTIA IS COMPROMISED SO MANY OF OUR RESEARCH CONCLUSIONS MAY BE UNDERMINED. WE NEED RESEARCH ON HOW E.H.R.s WORK FOR PEOPLE LIVING WITH DEMENTIA, HOW PROVIDERS UTILIZE E.H.R.s AND THE EXTENT TO WHICH INTEROPERABILITY CORRECTS ERRORS OR CORRECTS AND SUSTAINS ERRORS. MY PARENTS RAISED TWO SONS TO RECOGNIZE OUR ETHICAL OBLIGATION TO REPAIR THE WORLD. THE OLDER SON IS A NOBEL LAUREATE WHO'S WORK IMPROVED THE LIVES OF CHILDREN IN MIDDLE AND LOWER INCOME COUNTRIES. THE OTHER SON ASKS YOU TO USE THIS SUMMIT TO CATALYZE RESEARCH THAT IS PERSON CENTERED EMBRACING PEOPLE WITH LIVED EXPERIENCE AND RESEARCH PARTNERS SO THIS RESEARCH STRENGTHENS SYSTEMS ON WHICH THEY DEPEND SO THIS RESEARCH IMPROVES THE LIVES OF TENS OF MILLIONS OF PEOPLE FACING DEMENTIA NO MATTER WHERE THEY LIVE AROUND THE WORLD. BACK TO YOU. >>THANK YOU. IT'S MY PLEASURE TO INTRODUCE OUR NEXT , ROBERTA CRUZ, A CAREGIVER FROM THE LIVED EXPERIENCE PANEL. ROBERTA. >>HI, EVERYONE. I'M HONORED TO SHARE SOME EXPERIENCES WITH YOU ALL. SO IN REFLECTING IN THE ALMOST EIGHT YEARS OF CAREGIVER FOR MY MOM I HAVE TO SAY THE MOST FRUSTRATING ASPECT IS THE UNCERTAINTY AND NOT KNOWING WHAT THE RIGHT DECISION MAY BE AT ANY GIVEN MOMENT. THIS IDEA OF GOOD CARE GIVING FOR ONE FAMILY MAY LOOK VERY DIFFERENT FROM THE NEXT. AND SO DEPENDENT ON MANY CONSIDERATIONS INVOLVING ONE'S OWN LIVED EXPERIENCE, THE EXISTING SOCIAL SUPPORT NETWORK, FINANCIAL SITUATION, HOUSING SITUATION AND SO ON. FROM MY FAMILY, THE EARLIEST DECISIONS INVOLVE CONSIDERATIONS FOR GUARDING MY IMMEDIATE FAMILY AS MY SON WAS ONE AND A HALF YEARS OLD AND MY HUSBAND WAS IN HIS INTERNSHIP YEAR ARGUABLY THE MOST DIFFICULT YEAR FOR A PHYSICIAN IN TRAINING AND WE CONSIDERED EXTENDED FAMILY OPINIONS AND VALUES DIFFERENT FROM OURS, FINANCIAL RISK TO TAKE, HEALTH DIAGNOSES, BEHAVIORAL, PSYCHOLOGICAL CONSIDERATIONS AND NOT KNOWING EXACTLY WHAT MY MOM WANTED BECAUSE SHE CONSISTENTLY PUT OFF THE CONVERSATIONS. SHE DIDN'T WANT TO TALK ABOUT IT WITH US. LASTLY MY GAMBLING ADDICT DAD WHO WAS LEGALLY SEPARATED FROM MY MOM THOUGH THEY'RE STILL LIVING TOGETHER IN THE SAME HOME AND HE WAS ACTIVELY TAKING ADVANTAGE OF HER MEMORY LOSS. SO I PAUSE I BRING THE IMAGE OF A HUGE TIDAL WAVE COMES TO MIND AND FROM THAT MOMENT YOU SUSPECT IS NOT RIGHT YOU WONDER WHAT POSITION YOU'RE IN WHAT CAPACITY COULD YOU POSSIBLY INTERVENE TO ASSIST YOUR LOVED ONE. AND THEN IT BECOMES CLEAR THAT IT IS THE TIME TO DO SOMETHING. USUALLY IT'S ONE OF THOSE EMERGENCY SITUATIONS. AND IN THAT MOMENT THE NUMBER OF DECISIONS SEEMS ENDLESS. AS WE STOOD IN THE FACE OF THE ONCOMING TIDAL WAVE IT SEEMS ALL THE FOLKS, THE FAMILY MEMBERS, WHO WE WOULD CALL ON SUPPORT WERE CONVENIENTLY NOT AROUND. THEY DISAPPEARED ALL AT ONCE. THIS IS ANOTHER CHALLENGE. THOSE CLOSEST TO MY MOM WERE JUST NOT AVAILABLE IN HER GREATEST TIME OF NEED. SO I HAD TO COME TO ACCEPT THIS VERY QUICKLY SO AS NOT TO DETRACT FROM ANY MORE EMOTIONAL ENERGY I DIDN'T HAVE A LOT OF. SO BARRIERS AND CHALLENGES TO HELPING MY MOTHER LIVE WELL. THE FIRST THOUGHT WAS TO DEFINE WHAT DOES WELL MEAN AND WELL ACCORDING TO WHOM BECAUSE IF IT WERE UP TO MY MOM HE WOULD HAVE LEFT HER ON HER OWN WITH OR WITHOUT MY DAD. SHE WOULDN'T HAVE WANTED US TO WORRY ABOUT HER BECAUSE WE HAVE OUR OWN LIFE TO LIVE, THOSE WERE HER WORDS. I KNOW THIS IS DIRECTLY CONNECTED TO HER OWN EXPERIENCE OF HAVING IMMIGRATED FROM THE PHILIPPINES AND THAT SHE PROBABLY HAD TO TELL HERSELF TO DEAL WITH HER FEELINGS IN HER OWN PROCESS WITH HER OWN PARENTS AND THEIR END OF LIFE SO MANY MILES AWAY. OUR CHALLENGE WAS TO REDEFINE WHAT LIVING WELL LOOKED LIKE AND NEEDED TO BE IN LINE OF PRIORITIES AND VALUES OF MY PARTNER AND I AND MY MOM'S NOTION OF INDEPENDENCE WE HAD TO PUT ASIDE FOR THE TIME BEING. THIS IS VERY HARD. IN OUR FAMILY SITUATION, FINANCIAL, EMOTIONAL AND TIME RESOURCES WERE SCARCE. AS A YOUNG FAMILY NOT YET ESTABLISHED IN ANY CAREER OR PROFESSION WITH A ONE AND A HALF-YEAR-OLD, IF WE WEREN'T STABLE MY MOM WOULDN'T BE STABLE. WHAT IS A GOOD LIFE IS STILL A QUESTION WE ASK DAILY. WHAT'S BEEN MOST HELPFUL IN MY JOURNEY ARE THE EXISTING AND THE NEW AND SUPPORTIVE RELATIONSHIPS. MY PARTNER FIRST AND FOREMOST AND ALSO SUPPORT GROUPS WITH OTHER CARE PARTNERS, VARIOUS FORMS OF ADULT DAY PROGRAMS, CARVING OUT SPACE AND TIME FOR MY OWN CONNECTION WITH MY PARTNER AND CHILDREN AND CONNECTION WITH PARENTS. AND TO END, OUR CURRENT SUPPORT IS A SWEET WOMAN WHO WE MET FROM CARE.COM AND BLOSSOMED FROM A DAYCARE SITUATION THROUGH THE PANDEMIC TO OUR CURRENT SITUATION AS MY MOM'S END OF LIFE IN HOSPICE CARE WHERE MY MOM LIVES FULL TIME WITH HER AND HER FAMILY. NO ONE SHOULD DO THIS ALONE AND I THINK THE MOST IMPORTANT THING IS THAT WE DO NOT BECOME ISOLATED IN THIS REALLY DIFFICULT BUT IMPORTANT WORK. THANK YOU FOR ALLOWING ME TO SHARE MY EXPERIENCES WITH YOU. >>THANK YOU, ROBERTA AND HEIDI AND YOUR EXPERIENCES AND THE WORK YOU DID WITH YOUR PANEL. I AM NOW PLEASED TO WELCOME DR. KATE POSSIN AND MARCEL SALIVE CO-CHAIRS OF THE DEMENTIA CARE MODELS AND COORDINATION OF CARE. I TURN IT OVER TO YOU. >>THANK YOU, YES. I'M PLEASED TO LAUNCH THIS SESSION WITH MY COLLEAGUE DR. SALIVE FROM NIA. AS WE HEARD THIS MORNING DEMENTIA CARE IS TOO OFTEN CRISIS ORIENTED AND FRAGMENTED. FREQUENCY EMERGENCY DEPARTMENT VISITS AND HOSPITALIZATIONS ARE EXPERIENCED WITH PERSONS LIVING WITH DEM EDGE SHA AS WELL AS MULTIPLE CARE TRANSITIONS, PHARMACY AND POTENTIALLY HARMFUL MEDICATION USE. PEOPLE WITH DEMENTIA OFTEN EXPERIENCE AGGRESSIVE END OF LIFE CARE THAT'S OFTEN INCONSISTENT WITH THE PATIENT'S VALUES, EVEN SOMETIMES IF THE FORMS HAVE BEEN SIGNED AND NOT UPDATED IN THE ELECTRONIC HEALTH RECORD AS WE HEARD THIS MORNING. SPECIALTY CARE IS OFTEN SILOED WHICH PRESENTS A MAJOR PROBLEM IN DEMENTIA BECAUSE PATIENTS OFTEN HAVE MULTIPLE CHRONIC CONDITIONS THAT COULD BE DIFFICULT TO COORDINATE. IN FORMAL CAREGIVERS SHOULDER SUBSTANTIAL BURDENS WITH MINIMAL SUPPORT FROM OUR PATIENT-CENTRIC HEALTH CARE MODELS AND WE KNOW WHEN CAREGIVERS ARE BURDENED AND DEPRESSED PEOPLE WITH DEMENTIA USE THE EMERGENCY ROOM AND HOSPITAL MORE. TO ADDRESS THESE GAPS, NAPA RESEARCH MILESTONE 13.L CALLS FOR IMPLEMENTATION RESEARCH ON DEMENTIA CARE. SPECIFICALLY TO IMPLEMENT AND EVALUATE OUTCOMES FOR EFFECTIVE DEMENTIA CARE PROGRAMS THAT SUPPORT PERSONS LIVING WITH DEMENTIA AND THEIR CAREGIVERS INCLUDING THOSE OF SOCIALLY ETHNICALLY AND RACIALLY DIVERSE POPULATIONS. THE FIRST SUCCESS CRITERIA IS TO WRITE A WHITE PAPER ON PROVEN PROGRAMS THAT EFFECTIVELY SUPPORT PERSONS WITH DEMENTIA AND THEIR CAREGIVERS AS WELL AS BARRIERS TO NATIONAL IMPLEMENTATION OF THESE PROGRAMS. THIS HAS BEEN ACCOMPLISHED. NIA COMMISSIONED A NATIONAL ACADEMIES SUPPORT TO LOOK AT DEMENTIA AND CAREGIVERS AND INFORM DECISION MAKING ON WHAT SHOULD BE DISSEMINATED AND IMPLEMENTED AND GUIDE FUTURE ACTIONS AND RESEARCH. THE MAJOR FINDINGS FROM THIS SEMINOLE REPORT INCLUDE THAT THERE ARE INTERVENTIONS READY FOR IMPLEMENTATION EVIDENCE IS SUFFICIENT TO JUSTIFY TWO TYPES OF INTERVENTIONS IN A BROAD SPECTRUM OF COMMUNITY SETTINGS WITH EVALUATION CONDUCTED TO CONTINUE EXPANDING THE EVIDENCE BASE AND THESE ARE COLLABORATIVE CARE MODELS WHICH ADDRESS MEDICAL AND PSYCHOSOCIAL ASPECTS OF CARE IN A LONGITUDINAL WAY WITH THE FAMILY. AND MULTI-COMPONENT CAREGIVER SUPPORT. FOR EXAMPLE, REACH 2. ALSO A MAJOR FINDINGS WAS THAT GENERATING HIGH STRENGTH EVIDENCE USING TRADITIONAL METHODS FOR DEMENTIA CARE INTERVENTIONS IS CHALLENGING DUE TO THE COMPLEXITY OF THE INTERVENTIONS, THE DIVERSITY OF POPULATIONS AFFECTED AND THE IMPORTANCE OF CONTEXTUAL AFFECTS. TO GET US STARTED WE HAVE THE PLEASURE OF HEARING FROM ERIC LARSON. DR. LARSON. >>YOU HAVE THE REPORT. I DID CHAIR CHAIR GROUP AND THIS IS THE COVER OF THE REPORT. I WANT TO HIGHLIGHT THE WORDS IN THE BOTTOM A WAY FORWARD. THAT'S WHAT WE WANTED TO SAY SAY IN THE REPORT. WE WORKED HARD TOGETHER AND WERE SUPPORTED BY THE NATIONAL ACADEMY STAFF. A GROUP OF ADVISORS TO OUR COMMITTEE AND THERE'S A MIXTURE OF MOSTLY PEOPLE LIVING WITH DEMENTIA OR CARE PARTNER AND ACTION ORIENTED GROUP THAT WORK CLOSELY WITH US. AND THE STUDY MODEL WAS AN INTERESTING ONE. I PARTICIPATED IN MANY STUDIES WITH THE ACADEMIES BUT THIS ONE INVOLVED TWO PHASES. THE FIRST WAS THE AHRQ SYSTEMATIC REVIEW AND FOUND 227 STUDIES. THE KEY POINT IS THAT THOUGH THERE WERE LOTS OF STUDIES AND WORK DONE ON THE TOPIC AND THE QUALITY OF EVIDENCE WAS TO BE INSUFFICIENT FOR MOST INTERVENTIONS. AND THE ABSENCE OF EVIDENCE AND THE PRESENCE OF INSUFFICIENT EVIDENCE IS NOT EVIDENCE THAT THAT BENEFIT IS ABSENT. AND THE OTHER POINT TO MENTION HERE IS THAT THE COMMITTEE HAS IN THE REPORT THE NOTION THAT ONE OF THE ADVANCES OF OUR RESEARCH COMMUNITY IN THIS CARE HAS BEEN AVOIDING HARM. UNFORTUNATELY WE DON'T DO AS GOOD A JOB AS WE WANT TO DO SO THAT CHALLENGE IS STILL THERE BUT THERE HAS BEEN PROGRESS THERE. THE SECOND PHASE OF OUR STUDY STARTED IN SEPTEMBER AFTER THE REVIEW AND WHAT YOU'LL NOTE HERE IS THE START OF OUR WORK BEGAN BEFORE THE LOCKDOWN. THE COMMITTEE BASICALLY WORKED MOSTLY VIRTUALLY. AND THE POINT OF THIS SLIDE IS THE COMMITTEE RECOGNIZED EARLY ON AND THIS IS WHY THE RESEARCH IN THIS AREA IS SO CHALLENGE CH THERE'S A COMPLEXITY OF CARE INTERVENTIONS AND THEY CAN OCCUR AT THE FOUR LEVELS AND TEND TO FOCUS ON THE INDIVIDUAL AND FAMILY LEVELS AND SOCIETAL AND COMMUNITY LEVELS ARE IMPORTANT AND THE OTHER POINT IS THAT THE COMPLEXITY OF THE CONDITION FOR SO MANY LIVING WITH DEMENTIA IS HETEROGENOUS. IT GOES THROUGH PHASES AND DIFFERENT STAGES, IF YOU WILL. EQUALLY IMPORTANT IS THE COMPLEXITY OF WHERE THAT CARE IS DELIVERED IN THE COURSE OF THE DISEASE. THIS IS SOMETHING I HOPE YOU HEARD THROUGH THE SYMPOSIUM. THESE ARE THINGS WE THINK ARE MOST IMPORTANT. THEY'RE NOT IN ANY ORDER. THEY'RE ALL IMPORTANT AND THE GUIDING PRINCIPLES IDENTIFIED AS PERSON-CENTEREDNESS, PROMOTION OF WELL BEING, RESPECT AND DIGNITY, CULTURAL AND LINGUISTIC INCLUSIVITY AND AFFORDABILITY. COMPONENTS ARE LISTED HERE AND THESE ARE THINGS YOU HEARD BUT I'LL MAKE THE POINT THAT THIS IS NOT LAST BUT NOT LEAST OF THE LIST BUT IT'S ALL AREAS WHERE COMPONENTS OF CARE ARE IMPORTANT. DETECTION, DIAGNOSIS, INFORMATION, MEDICAL MANAGEMENT, SUPPORT IN ADLs, SUPPORT FOR CARE PARTNERS AND CAREGIVERS, COMMUNICATION AND COLLABORATION, COORDINATION OF LONG-TERM SERVICES AND SUPPORTIVE AND SAFE ENVIRONMENTS AND ADVANCED CARE PLANNING AND END OF LIFE CARE. THESE ARE STRAIGHTFORWARD AND WE IDENTIFIED NO INTERVENTIONS THAT HAD HIGH QUALITY STRENGTH OF EVIDENCE. THESE ARE WHERE WE AS A SOCIETY DECIDE EVERYBODY SHOULD BE SCREENED AND THE MODELS WERE COLLABORATIVE CARE AND THE ADAPTATIONS OF REACH II AND WE FEEL THOSE ARE READY TO GO FORWARD AND BE IMPLEMENTED. THERE'S A TAKE OFF ON THE CARE MODEL DEVELOPED FOR MANY CHRONIC DISEASES ESPECIALLY LATE LIFE CHRONIC DISEASES AND IT INVOLVES MULTIPLE COMPONENTS AND DEVELOPMENT OF CARE PLANS AND TRACKING AND PROVIDER COLLABORATIONS. THESE ARE OPERATIONALIZING MANY OF THE CARE COMPONENTS WE TALKED ABOUT EARLIER. AND THE EVIDENCE SHOWS THESE PROGRAMS DO IMPROVE QUALITY OF LIFE, QUALITY INDICATORS AND FREQUENCY OF EMERGENCY ROOM VISITS. THE NEXT SLIDE WE CALL THE REACH II AND ITS ADAPTATION. THIS IS A MULTI-COMPONENT INTERVENTION FOR CARE PARTNERS AND CAREGIVERS. AND THESE INTERVENTIONS GENERALLY HAVE SEVEN COMPONENTS, PROBLEM SOLVING, SKILLS TRAINING, STRESS MANAGEMENT, PROVISION OF INFORMATION, DIDACTIC INSTRUCTION AND ROLE PLAYING AND REDUCE CAREGIVER DEPRESSION. SHE'S ARE OUR RECOMMENDATIONS. I'LL GO THROUGH THEM QUICKLY BECAUSE YOU CAN EASILY READ THEM THE FIRST IS THE IMPLEMENT AND EVALUATE THE OUTCOMES FOR COLLABORATIVE CARE MODELS IN MULTIPLE REAL WORLD SETTINGS. THE POINT IS WE WANT TO BE A PRACTICAL WAY FORWARD. IN THE PROCESS OF IMPLEMENTING PEOPLE SHOULD BE EXAMINING THE FACTORS IMPORTANT FOR DETERMINING HOW TO IMPLEMENT AN INTERVENTION. THE SECOND RECOMMENDATION IS A MIRROR OF THE FIRST. PRACTICAL WAY FORWARD TO IMPLEMENT REACH II THE WORLD OF CAREGIVER SUPPORT AND CARE PARTNER SUPPORT AND IDENTIFY THE PRACTICAL ISSUES LIKE WORKFORCE AND SPACE NEEDS, PAYMENT MODELS, INTEGRATION AND SO FORTH. AGAIN, A WAY FORWARD BECAUSE THERE IS DEFINITELY A WAY FORWARD. OUR NEXT SLIDE IS OUR FINAL THOUGHTS. AND NEXT SLIDE IS THE OTHER THREE RECOMMENDATIONS AND USE INFORMATIVE METHODS AND THIS ALREADY HAS BEEN IMPLEMENTED TO SOME EXTENT BY NIA THROUGH THE IMPACT COLLABORATORY. PRIORITIZING INCLUSIVE RESEARCH AND AGAIN THIS TAKES EFFORT BECAUSE IT DOES NOT HAPPEN NATURALLY. ALL RESEARCH IN THIS FIELD IS INCLUSIVE AND TAKES OUTREACH TO GET RACIALLY ETHICAL, CULTURALLY LINGUISTIC DIVERSE PARTICIPANTS BY THE NATURE OF OUR SOCIETY. AND LASTLY THIS NOTION OF ASSESSING REAL-WORLD EFFECTIVENESS IS VERY IMPORTANT. AND AGAIN THE PRAGMATIC CLINICAL TRIALS EMPHASIZE THAT. AND THE NEXT SLIDE IS MY FINAL THOUGHTS. I CAN JUST READ THESE OFF BUT I THINK YOU'LL SEE THEY FLOW FROM THE EARLIER PARTS OF THE REPORT. WE WANT TO PROVIDE COLLABORATIVE CARE INTERVENTIONS AND REACH II NOW FOR THOSE WHO WOULD BENEFIT AND THAT WOULD REPRESENT REAL PROGRESS. BUT AT THE SAME TIME THERE'S AN EVEN MORE A MORE ROBUST EVIDENCE BASE IS NEEDED TO GUIDE THE FIELD AND LEARN MORE AND DISCOVER MORE ABOUT BETTER WAYS TO IMPROVE CARE AND WELL BEING. OTHER INTERVENTIONS THAT HAVE SHOWN SIGNALS TO HAVE BENEFIT SHOULD BE DEVELOPED AND EVALUATED AND SOME WOULD BE NEW AND SOME COULD BE DRAWN FROM THE RESEARCH BASE. AND THERE'S AN OPPORTUNITY TO IMPLEMENT NEW METHODS AND APPROACHES IN THE FIELD INCLUDING THROUGH ENGAGING EARLY CAREER RESEARCHERS AND BUILDING THE MORE ROBUST USEFUL AND INCLUSIVE EVIDENCE BASE TO SUPPORT THE WELL-BEING OF THOSE LIVING WITH DEMENTIA AND CARE PARTNERS. NIA AND OTHERS ARE IN THE FIELD AND WE THINK IT'S AN IMPORTANT PART OF THIS WORK. THE IMPACT COLLABORATIVE, FOR EXAMPLE, IS FINDING WAYS TO BRING MORE PEOPLE INTO THE FIELD BOTH AT ALL LEVELS, JUNIOR AND MID AND SENIOR CAREER. SO THANK YOU VERY MUCH. I WANT TO CLOSE BY THANKING COMMITTEE WHO PULLED ALL THIS TOGETHER IN THE FINAL SLIDE. IT'S A FINAL SLIDE FOR THAT MATTER. THANK YOU. >>I'M DAVE RUBEN AND WOULD LIKE TO START WITH BACKGROUND. IN 2017 UCLA HAD AN ACCOUNTABLE CARE ORGANIZATION. FOR SOME REASON OR ANOTHER THEY WERE INTERESTED IN LOOKING AT THEIR DEMENTIA PATIENTS IN THE ACO. THEY PRESENTED THIS MODEL TO ME WHERE THE 5,000 PATIENTS AT UCLA WHO HAD DEMENTIA WERE SEPARATED INTO FIVE TIERS. THE TOP TIER REPRESENTED THE TOP 1% AND CLASSIFIED THESE ON UTILIZATION AND THESE WERE VERY HIGH UTILIZERS. $186,000 A YEAR OR MORE. THE NEXT TIER WERE HIGH UTILIZED $65,000 A YEAR OR MORE. THE THIRD TIER ALSO HIGH UTILIZERS, $20,000 A YEAR OR MORE. AND INTERESTINGLY ENOUGH THE FOURTH AND FIFTH TIER THE BOTTOM 80% ACTUALLY USED HEALTH CARE LESS THAN THE AVERAGE MEDICARE BENEFICIARY. SO WE LOOKED BACK UP AT THE TOP TIER AND ACTUALLY REVIEWED THE CHARTS AND THEY ARE PEOPLE WHO HAD BEHAVIORAL PROBLEMS, SEVERE FUNCTIONAL IMPAIRMENT AND MINIMAL RESOURCES FOR THEM AND MANY CO-MORBIDITIES WHICH WERE THE REASON WHY MANY WERE HOSPITALIZED. AND AS YOU SEE IN THE BOTTOM TIERS THEY TYPICALLY HAD MILD DEMENTIA AND RECEIVING ROUTINE A AND FOCUSES ON PATIENT AND CAREGIVERS AND INCLUDES EIGHT ELEMENTS THAT WERE OUTLINED IN HEALTH AFFAIRS A COUPLE YEARS AGO AND CONTINUOUS MONITORING AND ASSESSMENT AND ONGOING CARE PLANS, PSYCHO, SOCIAL INTERVENTIONS AIMED AT THE PERSON LIVING WITH DEMENTIA AND THEIR CAREGIVERS, SELF-MANAGEMENT, MEDICATION MANAGEMENT THOUGH SOME COMMUNITY-BASED SYSTEMS DON'T. TREATMENT OF RELATED CONDITIONS IMPORTANT TO PREVENT HOSPITALIZATIONS AND COORDINATION OF CARE. TO DATE SIX MODELS HAVE EVIDENCE BASED BASE FOR THEM AND WE RECLASSIFIED THEM BUT SHOULD BE NOTED VIRTUALLY ALL ARE IMPLEMENTED NOW IN HEALTH CARE SYSTEMS. THE B.R.I. CONSULTATION MODEL IS BASED AT A COMMUNITY-BASED ORGANIZATION AND THE TELEPHONE DELIVERED GENERALLY BY SOCIAL WORKERS. THE MIND AT HOME PROGRAM IS DELIVERED AT HOME USUALLY BY NON-CLINICAL COMMUNITY WORKERS SUPPORTED BY NURSES AND A GERIATRIC PSYCHIATRIST. THE CARE ECO SYSTEM IS DELIVERED BY TELEPHONE. USUALLY BASED IN A HEALTH CARE SYSTEM AND THERE'S AN A NON-LICENSED CARE NAVIGATOR AND NURSE AND PHYSICIAN BACK UP. INDIANA UNIVERSITY HEALTHY AGE BRAIN CENTER ONE OF THE GRAND DAD WAS AND SOME WORK WITH PRIMARY CARE PHYSICIANS AND THESE TEND TO BE NURSE PRACTITIONERS OR PHYSICIAN ASSISTANT AND THE INTEGRATED MEMORY CARE PROGRAM A NURSE PRACTITIONER PRIMARY CARE PERSON OF PERSONS LIVING WITH DEMENTIA. SO THESE MODELS DIFFER. THEY DIFFER IN THE STAFFING, THE BASE OF OPERATION, THE SCOPE OF SERVICES, THE INTENSITY OF THE SERVICES, COST, EFFICACY AND EFFECTIVENESS, POTENTIAL RETURN ON INVESTMENT AND LEVEL OF EVIDENCE. ONLY A FEW OF THEM HAVE RANDOMIZED CLINICAL TRIAL DATA BUT ALL HAVE DATA SUPPORTING THEM AND ALL TERRIFIC MODELS. AND THIS COMPARES THE MODELS FROM THE LEFT SIDE PROBABLY CONSIDERED THE LEAST EXPENSIVE AND INTENSIVE TO THE RIGHT SIDE WHICH IS THE MOST EXPENSIVE. BACK TO OUR POPULATION DEMENTIA CARE MODEL. SO HERE ON THE RIGHT-HAND SIDE YOU MIGHT LOOK AT THE TYPES OF INTERVENTIONS FOR DIFFERENT TYPES OF PERSONS LIVING WITH DEMENTIA. FOR THOSE VERY HIGHEST UTILIZERS AND SICKEST FOLKS AND MORE INTENSIVE DEMENTIA CARE PROGRAM AND CARE PLANNING AND PALLIATIVE CARE FOR THE 2% TO 20% A MORE INTENSIVE CARE PROGRAM OR LESS INTENSIVE CARE PROGRAM WITH INCREASED SOCIAL SERVICES AND THEN THE BOTTOM 80% MIGHT BE MORE INFORMATION AND REFERRAL SYSTEMS SUCH AS DELIVERED THROUGH THE ACL PROGRAMS. AND/OR THEY MAY HAVE LESS INTENSIVE DEMENTIA CARE PROGRAMS. IN OCTOBER 22, JOHN A. HARTFORD FOUNDATION LOOKED AT MODELS AND FIVE RECOMMENDATIONS CAME OUT OF IT. THE PAYMENT MODEL SHOULD PROVIDE COMPREHENSIVE DEMENTIA CARE WITH QUALITY OUTCOME MEASURES. IT SHOULD ADDRESS BENEFICIARY AND CAREGIVER NEEDS AS A DIAD. TO BE ELIGIBLE, BENEFICIARIES MUST HAVE A DIAGNOSIS OF DEMENTIA. IF NOT A DIAGNOSIS OF MCI BUT PERSONS LIVING WITH DEM SEAN -- DEMENTIA AND THOSE AVAILABLE TO THOSE IN RURAL AREAS WHO HAVE DIFFICULTY ACCESSING CARE AND THE PAYMENT MODEL SHOULD BE CAPITATED BASED ON SEVERITY OF SYMPTOMS AND AVAILABLE RESOURCES. THIS IS HOW IT MIGHT WORK. THE DIAGNOSIS OF DEMENTIA WOULD BE CONFIRMED AND PEOPLE WOULD BE CLASSIFIED IN ONE OF THREE CATEGORIES. PATHWAY ONE, MILD DEMENTIA. IN THAT CASE THEY WOULD RECEIVE EDUCATION, SUPPORT, REFERRAL TO COMMUNITY-BASED SERVICES AND CARE NAVIGATORS. PATHWAY 2, MODERATE OR SEVERE DEMENTIA BUT HAVING SIGNIFICANT CAREGIVER RESOURCES AND ALL ELEMENTS MUCH COMPREHENSIVE DEMENTIA CARE. AND PATHWAY 3 INSUFFICIENT CAREGIVER RESOURCES THE WAY THE RESOURCES DIFFER IS WHAT THE CAPITATION RATE WOULD BE. THERE WOULD BE AN ANNUAL ASSESSMENT OR ASSESSMENT AFTER LIKE AN ICU OR PSYCHIATRIC HOSPITALIZATION AND RECLASSIFIED. THE ALZHEIMER'S ASSOCIATION AND COLLABORATION DID BUDGET SCORING AND OVER 10 YEARS BASED ON 1.8 MILLION BENEFICIARIES THE GROSS SAVING WOULD BE $1.2 BILLION AND THE UP FRONT COST TO PAY FOR SERVICES WOULD BE $12.9 BILLION AND THE NET SAVINGS WOULD BE 9. -- $9.2 BILLION AND NURSING HOME PLACEMENT REDUCED AND THE SAVINGS WOULD BE $20.9 BILLION AND ANOTHER $10 BILLION TO THE STATE FOR THEIR CONTRIBUTION FOR A TOTAL OF ALMOST $31 BILLION. DESPITE WHAT THE EXCELLENT FOUNDATION THERE'S MUCH MORE TO DO. CONDUCT TRIALS TO INCREASE THE EVIDENCE FOR INCREASING HOLD. MOST ARE BASED ON LOW-QUALITY EVIDENCE. DETERMINE WHICH PROGRAMS BEST SERVE THE NEEDS OF VARIOUS DIVERSE POPULATIONS IN THE SETTINGS WERE CARE ARE DELIVERED. THE MODELS ARE DIFFERENT AND FIT DIFFERENT HEALTH CARE SYSTEMS. CONDUCT RESEARCH TO FURTHER ADAPT SUCCESSFUL MODEL FOR DIFFERENT POPULATIONS AND HEALTH SYSTEMS. CONDUCT STAGE 5 AND THE NIH STAGES OF CHANGING RESEARCH ON THE BEST APPROACHES TO DISSEMINATE SUCCESSFUL MODELS. THEY ARE THERE BUT NOT OUT THERE. RESEARCH TO CREATE A COMMON SET OF OUTCOME MEASURES, ERIC ALSO REFERRED TO THIS. TO BE ABLE TO COMPARE THE MODELS YOU NEED TO HAVE THE SAME OUTCOMES. AND FINALLY EVALUATE PAYMENT MODELS FOR COMPREHENSIVE DEMENTIA CARE. WHAT'S THE BEST WAY TO PROVIDE THIS NEEDED CARE. SO I'M GOING TO STOP HERE AND THANK YOU FOR ALLOWING ME TO SPEAK AND ENJOY THE CONFERENCE. >>THANK YOU SO MUCH DR. REUBEN AND DR. LARSON. I'M ULA HWANG AN EMERGENCY ROOM PHYSICIAN AND PROFESSOR AT YALE AND I'M HERE TO TALK TO YOU ABOUT DEMENTIA IN THE ACUTE CARE SETTING AND HOPEFULLY LOOK AT THE SETTING TO IMPROVED CARE FOR PERSONS WITH DEMENTIA. THIS IS MY DISCLOSURE SLIDE. IT'S MORE TO HIGHLIGHT THE OPPORTUNITIES FOR EVERYONE TO SEE THERE ARE EARLY ONGOING EFFORTS TO REALLY DIVE INTO GERIATRIC AND DEMENTIA CARE OPPORTUNITIES FOR THE EMERGENCY ROOM DEPARTMENT AND WE HOPE THESE CONTINUE TO GROW. THE GOAL OF MY SESSION IS TO DISCUSS THIS AS A PARTNER FROM IMPROVING DEMENTIA CARE. DESPITE RESEARCH PARITIES AND DESCRIBE THE RESEARCH GAPS, OPPORTUNITIES AND FUTURE CONSIDERATIONS. AS WE KNOW, OLDER ADULTS CONTINUE TO INCREASINGLY UTILIZE THE HEALTH CARE SYSTEM AND NOWHERE MORE DO WE SEE THIS IN THE EMERGENCY ROOM DEPARTMENT. MOST RECENT DATA INDICATES 1 OF 2 OLDER ADULTS, $1.85 WILL MAKE AN E.D. VISIT ANNUALLY TO AN EMERGENCY ROOM DEPARTMENT. THAT'S 66 EMERGENCY ROOM VISITS FOR EVERY 100 PERSONS 75 AND OLDER. WHAT WE ALSO KNOW IS IN 2018 THERE WERE ZERO ACCREDITED GERIATRIC EMERGENCY ROOM DEPARTMENT BUT AS OF MARCH 2023 THERE ARE OVER 500 ACCREDITED. THIS REPRESENTS 10% JUST DURING THE PANDEMIC. THE EMERGENCY DEPARTMENT IS NOW RECOGNIZING THE IMPORTANCE OF ADDRESSING AND PROVIDING THE SPECIAL CARE THAT ARE REQUIRED BY OLDER ADULTS. WHAT WE ALSO KNOW IS OLDER ADULTS OR THOSE WITH DEMENTIA WHICH MAY INCLUDE YOUNGER PATIENTS INCREASINGLY USE THE EMERGENCY DEPARTMENTS AT A GREATER RATE THAN THOSE WITHOUT DEMENTIA OVER DOUBLE. WE ALSO KNOW THAT COGNITIVE IMPAIRMENT IS MISSED MORE THAN HALF THE TIME UP TO 83% OF THE TIME IN THE EMERGENCY ROOM DEPARTMENT BECAUSE IT'S NOT ROUTINE ASSESSED. IF THERE'S ONE WAY I WANT YOU TO WALK AWAY WITH IS THE GRAPHIC FROM MY TALK. WHAT WE KNOW FROM PRELIMINARY DATA AT THE ACADEMIC EMERGENCY ROOM DEPARTMENTS AND WITH NATIONAL EMERGENCY ROOM DEPARTMENTS, AND WE SHOWED THE GRAPH YOU'RE SEEING IN THE BOTTOM RIGHT AT THE V.A., THE V.A. NATIONAL HEALTH CARE DATA WE PRESENTED AT THE MEETING IN FEBRUARY. THERE'S A SPIKE IN E.D. VISITS PRIOR TO THE DIAGNOSIS. THIS EMPHASIZES IF HE OPPORTUNITY AND SHOT THE EMERGENCY DEPARTMENT HAS TO BECOME A PARTNER IN ADDRESSING AND RECOGNIZING DEMENTIA. EARLIER RECOGNITION MEANING BETTER CARE COORDINATION. THE GERIATRIC RESEARCH NETWORK, 2.0, ADVANCING DEMENTIA CARE IS AN NIA PHASED AWARD THAT TRIES TO ADVANCE THE SCIENCE TO IMPROVE EMERGENCY CARE FOR PERSONS WITH DEMENTIA. IN THE EARLIER PHASE DURING THE R61 WE HELD A CONSENSUS CONFERENCE THAT PULLED TOGETHER STAKEHOLDER TO LOOK AT CARE TRANSITIONS, COMMUNICATION AND SHARED DECISION MAKING, DETECTION AND E.D. PRACTICES. WHAT HAPPENS WHILE THEY'RE IN THE EMERGENCY ROOM DEPARTMENT. WE THEN TOOK THE PRIORITIES FROM THE STAKEHOLDERS AND EMPHASIZED SUPPORT FOR RESEARCH THAT TARGETED THESE AREAS. SUPPORTS WITH TRAINING AND ALSO PILOT FUNDING. WHAT I WANT TO SHOW YOU ON THE NEXT TWO SLIDES IS WHAT GEAR IS AND WHAT THE CONSENSUS CONFERENCE IS. YESTERDAY AND JUST NOW THIS MORNING WITH OUR SESSIONS WITH THE LIVED EXPERIENCE PANEL AND ALSO WHAT WE HEARD BY DR. LARSON AND REUBEN IS THE IMPORTANCE OF STAKEHOLDER ENGAGEMENT AND HEARING THEIR VOICES AND PERSPECTIVES IN THE WORK. THERE'S A DIVERSE GROUP OF PHYSICIANS, NURSES FROM THE EMERGENCY ROOM DEPARTMENT AND GERIATRICIANS, PSYCHOLOGISTS AND ALLIED HEALTH PROFESSIONS, PHARMACISTS, ANYONE WHO WOULD TOUCH THE PATIENT IN THE CARE CONTINUUM AND WE INCLUDED THE VOICE AND PERSPECTIVES OF PERSONS LIVING WITH DEMENTIA AND HAD FIVE PARTICIPATE IN A CONSENSUS CONFERENCE AND CARE PARTNERS AT BRINGING THEIR VOICE AND PERSPECTIVE TO WHAT MATTERS IN THE RESEARCH WE NEED TO CONDUCT. THIS IS A SCREEN SHOT I WANTED TO SHOW YOU. WE HAVE THIS CONSENSUS CONFERENCE IN OCTOBER OF 2021 DURING THE PANDEMIC. I HAD TO DO THIS VIRTUALLY. IT SHOWED THE DEDICATION AND COMMITMENT OF A DIVERSE GROUP OF STAKEHOLDER WHETHER THEY HEARD ABOUT THE TOPIC AREAS AND BROKE OUT INTO DISCUSSION ROOMS AND RANKED WHAT THEY THOUGHT WERE MOST IMPORTANT FROM THEIR PERSPECTIVES WITH REGARDS TO RESEARCH. SOME THEMES THAT CAME ACROSS BEFORE TOPIC AREAS YOU ALSO HEARD DURING THE LAST DAY AND A HALF OF THIS SUMMIT MEETING IS THE IMPORTANCE OF REAL WORLD CARE. ONE POINT I WANT TO EMPHASIZE IS DETECTION FOR DEMENTIA AND E.D. IS NOT DIAGNOSING. WE'RE HERE TO SCREEN BUT NOT NECESSARILY DIAGNOSE. THE IMPORTANCE IS THE IMPORTANCE OF BREVITY IN THE FAST-PACED EMERGENCY ROOM DEPARTMENT. EQUITY ARE PRIORITIES. THE EMERGENCY ROOM DEPARTMENT IS ONE OF THE FEW HEALTH CARE SETTINGS WHERE WE SEE EVERYONE 24/7 REGARDLESS OF BACKGROUND. PATIENTS WHO ARE VULNERABLE AND DISADVANTAGED COME TO THE EMERGENCY ROOM DEPARTMENT DOORS WHICH IS THE FRONT DOOR TO THE HEALTH CARE SYSTEM. THIS IS OUR OPPORTUNITY TO PROVIDE ACCESS AND MAY OFTEN BE THE ONLY TOUCH POINT OF ACCESS TO CARE FOR THOSE PATIENTS THAT MIGHT BE UNDER RESOURCED. THE ABILITY AND OPPORTUNITY TO ADDRESS COGNITIVE IMPAIRMENT AND SOCIAL DETERMINATES OF HEALTH ARE WHAT IT'S ABOUT. PATIENT CENTERED PRIORITIES WERE ALSO MENTIONED IN THE EMERGENCY ROOM DEPARTMENT. I MAY INTRODUCE THE CONCEPT OF THE QUARTETTE WE HEARD OF THOSE LIVING WITH DEM -- DEMENTIA AND UNDERSTANDING THE CONSEQUENCES OF CARE, HOW WE COMMUNICATE CARE AND THE RISK FOR SCREENS AND IT'S ALL CRITICAL AND IMPORTANT AS WE TRY TO DEVELOP TRUST WITH OUR PATIENTS AND THE POPULATION. THESE WERE PUBLISHED IN OPEN ACC ACCESS JOURNALS IN JAMA. READ MORE ON THE RESEARCH PRIORITIES THAT CAME FROM THE MEETING. I WANT TO POINT OUT THE EVIDENCE AND OPPORTUNITIES WITHIN THE SCHEDULE CARE OR EMERGENCY CARE. YESTERDAY WE HEARD THE IMPORTANCE BY DR. McCREEDY AND SHAH ABOUT REFRAMING OUR MIND SET FOR PRIMARY CARE AND WANT EVERYBODY TO THINK ABOUT THE OPPORTUNITIES FOR GERIATRIC EMERGENCY CARE. IT'S DEMONSTRATED TO IMPACT AND SHOW THE ABILITY TO REDUCE RISK OF HOSPITALIZATION SO REDUCING ADMISSIONS AND READMISSIONS BY 16% TO 17%. WHEN PATIENTS ARE SEEN IN GERIATRIC EMERGENCY ROOM DEPENDS BY PHYSICAL THERAPY IT'S BEEN SHOWN WE CAN REDUCE THEIR RISK FOR FALLS AND REDUCE THE RISK FOR E.D. REVISITS BY 40%. AND WHAT WE ALSO KNOW IS WHEN SEEN BY A GERIATRIC E.D. THEME THEY HAVE REDUCED MEDICARE COST IN SUBSEQUENT MONTHS AFTER THE EMERGENCY ROOM VISIT. WE'RE SEEING THERE'S EVIDENCE OF IMPACT FROM EMERGENCY ROOM DEPARTMENTS. HOW DO WE TRANSLATE IT NOW FOR PATIENTS WHO HAVE DEMENTIA? I THINK THERE'S A LOT OF OPPORTUNITIES WITH REGARDS TO REFRAMING HOW WE CAN DELIVER EMERGENCY CARE AND REFRAMING AND THINKING OF EMERGENCY CARE AS PART OF THE DEMENTIA CARE CONTINUUM AND GOING BACK TO THE GRAPH I SHOWED EARLIER BECAUSE SPIKE IN E.D. VISITS PRIOR TO THE DEMENTIA DIAGNOSIS WE HAVE A SHOT AT IMPACTING THE PATIENTS WITH EARLY DETECTION AND CHANGING THE TRAJECTORY OF THEIR CARE. A VISIT TO AN EMERGENCY ROOM DEPARTMENT CAN GET EARLIER RECOGNITION AND CONNECT PATIENT TO RESOURCES AND CARE TO IMPROVE THEIR OUTCOMES. WE CAN MAKE THAT DIFFERENCE WITH THE EMERGENCY CARE, TO, DURING AND FROM THE E.D. THE EMERGENCY ROOM CAN FACILITATE SHARED DECISION MAKING WITH WHAT MATTERS TO THE PATIENT AND THEIR FAMILIES. MY HOPE IS I'VE BEEN ABLE TO SHIFT YOUR MIND SETS IN REFRAMING THE EMERGENCY ROOM DEPARTMENT AS A PARTNER IN DEMENTIA CARE MODELS. THANK YOU. >>THANK YOU, ULA. THE TALK IS TO DEVELOP AND EVALUATE CARE MANAGEMENT MODELS THAT REALLY PARTNER WITH THE EMERGENCY DEPARTMENT. HAVING CARE THAT STARTS AT THE E.D. AND THEN EXTENDS ACROSS THE CARE CONTINUUM. THINKING ABOUT THE COLLABORATIVE OR COMPREHENSIVE CARE MODELS PARTNERING WITH THE E.D. TO INTERVENE AT THIS CRITICAL MOMENT FOR OUR FAMILIES. THE SECOND GAP OR OPPORTUNITY IS TO TAKE THESE EFFECTIVE CARE MANAGEMENT MODELS, COMPREHENSIVE COLLABORATIVE CARE MODELS AND ADAPT THEM AND MAKE SURE THEY WORK FOR DIVERSE POPULATIONS AND DIVERSE SETTINGS INCLUDING RACE AND ETHNIC MINORITY GROUPS, RURAL LOCALES, LARGE HEALTH SYSTEMS AND SMALL PRACTICES SO NO ONE IS LEFT BEHIND. AND THIRD, TO CONDUCT STAGE 5 RESEARCH. IF YOU LISTENED TO ELENA FAZIO THE TALKED ABOUT IMPLEMENTATION AND DISSEMINATION RESEARCH SO WE CAN GET THE CARE MODELS OUT THERE. ALL OF THESE GAPS AND OPPORTUNITIES FROM OUR SESSION ARE FOCUSSED ON REFEIGNING THE EFFECTIVE CARE MODELS AND IMPLEMENTING THEM SO THEY CAN REACH THE PERSONS LIVING WITH DEMENTIA AND CARE PARTNERS WHO NEED THE CARE MODELS TODAY. WE NOW HAVE THE PLEASURE OF HEARING FROM THREE PANELISTS. FIRST, ROBERTA CRUZ WHO IS A CAREGIVER FOR HER MOM WITH DEMENTIA. WE HEARD A LITTLE FROM HER THIS MORNING. MS. CRUZ, WHEN THINKING ABOUT HAVING TO COORDINATE CARE FOR YOUR MOTHER ACROSS PROVIDERS, WHAT POSITIVE OR NEGATIVE EXPERIENCES HAVE YOU HAD? >>THANK YOU, KATHERINE. EXPERIENCES HAVE BEEN ACROSS THE BOARD THINKING BACK TO THE INITIAL MOMENTS. IT'S BEEN EXTREME FROM APATHY OR MISUNDERSTANDING TO KINDNESS, CONNECTION AND HUMANITY. I'LL START WITH THE NEGATIVE THAT COMES TO MIND AND THAT INITIAL MOMENT WHERE OUR FAMILY REALIZED WE NEEDED TO INTERVENE AND MOVING MY MOM ACROSS COUNTRY AND WE WERE IN COUTH CAROLINA AND MY MOM WAS IN THE HOME I GREW UP IN IN THE BAY AREA AND WE KNEW BEFORE MOVING HER ACROSS STATE LINES WE NEEDED TO HAVE A DIAGNOSIS FROM HER CURRENT PROVIDER AND UNFORTUNATELY THE EXPERIENCE WAS MORE OF A BATTLE. WE HAD TO FIGHT TO HAVE A DIAGNOSIS OR FOR HER TO START THE ASSESSMENT FIRST TIME MEETING THE PROVIDER WAS A NURSE PRACTITIONER WAS HESITANT TO ACKNOWLEDGE MY MOM NEEDED TO BE SCREENED. SHE SAID SHE'S JUST GETTING OLDER. SHE DIDN'T WANT TO SCREEN HER. AND RATHER THAN WORKING AND SHE WAS DISMISSIVE AND HESITANT AND THEY'RE NOT GOING TO LEAVE WITHOUT SOMETHING TAKING PLACE. ON THE FLIP SIDE, THE POSITIVE NEEDING AND BUILDING RELATIONSHIPS WITH PEOPLE WHO SINCERELY CARED FOR MY MOM HAS BEEN A POSITIVE EXPERIENCE ONCE WE WERE IN NORTH CAROLINA AND REFLECTING BACK TO THAT I FEEL LIKE EACH TIME I, AS A MAIN CARE PARTNER MET WITH A PROVIDER AND LEARNED IMPORTANT SKILLS ON HOW TO CONNECT AND ADVOCATE FOR MY MOM. IT'S TIRING AND EXHAUSTIVE BUT IT TAUGHT ME TO BE PERSISTENT AND OPEN TO ANY AND ALL INFORMATION FOR EXAMPLE, OUR FIRST APPOINTMENT WHEN WE WERE ABLE TO SEE A GERIATRIC SPECIALIST WE INITIALLY THOUGHT THIS WAS WHERE WE NEEDED TO BE AND WHERE WE NEEDED TO HAVE MY MOM'S CARE AND WANTED A DIFFERENCE EXPERIENCE AT THIS TIME. WE DECIDED TO SWITCH MY MOM'S CARE TO DUKE INTEGRATIVE MEDICINE AND THOUGH IT WAS MORE OF A FINANCIAL COST WE FELT IT WAS WHAT WE NEEDED AS A FAMILY AND RECOGNIZED SOMETHING WE WERE ABLE TO DO BECAUSE OF THE RESOURCES WE HAD AT THE TIME FOR BUT ALLOWED FOR CONNECTION AND ACTION FOR THE CARE WE NEEDED. THANK YOU. >>THANK YOU, ROBERTA. CAROLYN CAN YOU TALK ABOUT YOUR EXPERIENCE? >>I'D LIKE TO TALK ABOUT THE MEMORY CARE. AS YOU SAW ON THE MODEL TABLE THIS IS A LARGE PRACTICE. UNDER 20 STAFF PEOPLE COMPRISED OF NURSE PRACTITIONERS WHO SPECIALIZE IN GERIATRIC MEDICINE AND PSYCHIATRY AND OUR SUPPORTING PHYSICIANS, REGISTERED NURSES, SOCIAL WORKERS, OCCUPATION S, DEMENTIA COMPANIONS AND COORDINATORS AND THIS IS PREVENTIVE AND SCREENING KIND OF CARE, ACUTE ILLNESS FROM RASHES TO CHRONIC ILLENCE NESS AND -- ILLNESS AND PRESCRIBING AND CONCURRENT WITH SPECIALTY DEMENTIA CARE AND OFFER IN-HOUSE SUPPORT GROUPS DEPEND ON STAGE AND CLASSES WITH CAREGIVERS AND SINGLE-DAY WORKSHOPS AND DO INDIVIDUAL AND FAMILY PSYCHO THERAPY FOR OUR FAMILY CARE PARTNERS. WE ARE ABLE TO FOLLOW OUR PATIENTS IN THEIR SENIOR LIVING COMMUNITY AS WELL WITH WEEKLY AND INTENSIVE COGNITIVE ENGAGEMENT ACTIVITIES AND MOST IMPORTANT TO US IS TO MAINTAIN DIRECT ACCESS TO THIS PRACTICE. NO CALL CENTER, NO REFERRAL REQUIRED AND AFTER HOURS ACCESS TO OUR TEAM VIA DEDICATED PHONE LINES FOR OUR ESTABLISHED PATIENTS. WE BENEFIT FROM THE ADVISORY COUNCIL THAT'S COMPRISED OF PATIENTS AND FAMILY CAREGIVERS IN EVERYTHING WE DO. WE CERTAINLY SEE OURSELVES AS THE WHAT'S NEXT MODEL. THERE'S SO MUCH INVESTMENT TODAY AND TIMELY AND ACCURATE DIAGNOSIS WHICH IS CRITICAL. ROBERTA MENTION THE CHALLENGE FOR FAMILIES IS INCREDIBLE BUT THEN THE QUESTION IS WHAT HAPPENS AFTER THE DIAGNOSIS AND SO WE DESIGN THE MODEL WITH FAMILY CARE PARTNERS TO WRAP SERVICES AROUND THEM IN ONE LOCATION RATHER THAN SENDING THEM TO MULTIPLE SITES. WE'VE BEEN OPEN SINCE 2015 AND SERVED OVER 2500 FAMILIES AT THIS POINT. 40% OF WHOM WHO IDENTIFIED AS MINORITIZED POPULATION AND THEY'RE EXPERIENCES ARE WRITTEN ANYWHERE AT THIS POINT AND WE TRACK OUR FINANCES QUITE CLOSELY SO THIS MODEL ITSELF IS FINANCIALLY SUSTAINABLE THROUGH BILLING REVENUE AND WE'RE ABLE TO OFFER ADDITIONAL SERVICES FOR PRIVATE PAY AND BENEFIT FROM GRATEFUL PATIENTS OVER THE YEARS. AS DR. REUBEN MENTIONED IT'S IMPORTANT TO CONSIDER MODELS FOR WHICH PATIENT POPULATIONS AND COMPLEXITIES IS MORE BROADLY DEFINED THAN THE MEDICAL DEFINITIONS WE OFTEN USE INCLUDING GEOGRAPHIC DISTRIBUTION AND INCOME LEVELS. WE HOPE AS WE'RE CONTINUING TO TRACK THESE MODELS THEY'RE REQUIRED TO HAVE CO-DESIGN AND CO-PRODUCTION OF PATIENTS CAREGIVERS. NOTHING SHOULD BE DONE TO THEM WITHOUT THEIR INPUT AND WE INVEST FOR THE WHAT'S NEXT AFTER THE DIAGNOSIS AS WE'RE CONCURRENTLY ASSESSING AND DIAGNOSING FOLKS. THANK YOU VERY MUCH. >>WONDERFUL. IT'S GREAT TO HEAR ABOUT YOUR PROGRAM. THE LAST PANELIST IS SHARI LING FROM CMS. >>I'M HONORED TO JOIN YOU AND WHAT WE HEARD THROUGHOUT THE CONFERENCE THUS FAR HELPS MEET THE REQUEST THAT OUR ADMINISTRATOR AT CMS REALLY OPPOSED DURING A LESSENING SESSION HELD IN 2022 WHICH IS WHAT ARE SOME OF THE PROMISING PRACTICES AVAILABLE. WHAT ARE THE RESOURCES NEEDED AND FOR WHOM, BY WHOM UNDER WHAT CIRCUMSTANCES. I'LL CALL OUT OUR THINKING AND EFFORT TO MOVE THE HEALTH CARE SYSTEM TOWARDS A VALUE-BASED CARE SYSTEM RATHER THAN VOLUME-DRIVEN ACTUALLY IS TRULY AN OPPORTUNITY TO FOCUS ON WHAT MATTERS TO THE PEOPLE WE SERVE. THAT IS PEOPLE LIVING WITH DEMENTIA. THOSE WHO ARE AT RISK OF DEVELOPING DEMENTIA AND THEIR CARE PARTNERS WHO ARE A NECESSARY PART OF THE SOLUTION SCIENTIFICALLY AND ALSO VERY PRACTICALLY. I THINK TRUE OPPORTUNITIES EXIST THAT REALLY ALIGN WITH THOSE PRINCIPLES THAT DR. LARSON LAID OUT. I WILL SAY THAT OUR EFFORTS MUST ADDRESS CARE ACROSS THE HEALTH CARE CONTINUUM WITH INTENT IN TRANSLATING INFORMATION ACROSS CARE SETTINGS AND THEREFORE A TRUE OPPORTUNITY IS THROUGH THE TECHNOLOGY OF THE ELECTRONIC HEALTH RECORDS THAT FRANKLY HAVE YET TO BE TRULY REALIZED. WHAT HAPPENED TO IAN SHOULD NOT HAPPEN. THE INFORMATION NEEDED IS THE IMPLEMENTABLE IF WE COLLECTIVELY FOCUS ON WHAT ARE THE MEANINGFUL OUTCOMES THAT MATTER AND FOR THAT TO BE ABLE TO TRANSLATE ACROSS CARE SETTINGS WITH THE CARE THAT IS NEEDED FOR A PERSON FOR PEOPLE AS THEY TRAVERSE THE HEALTH CARE SYSTEM AND THAT ACTUALLY ALSO INCLUDES CARE THAT IS UNSCHEDULED AND DELIGHTED THAT ULA WAS ABLE TO HELP US CONNECT THE DOTS WITH THE OPPORTUNITY THAT REALLY CARE IN AN EMERGENCY SETTING, BETTER CARE IS WHAT SHE DESCRIBES AND FRAMES AS GERIATRIC EMERGENCY CARE BUT REALLY IT'S GOOD FOR ALL. SO I THINK WE'RE ON A JOURNEY AND DELIGHTED TO HEAR ABOUT SOME OF THE BRIGHT SPOTS EMERGING. I THINK OUR QUESTION FOR OURSELVES IS HOW DO WE TRAVERSE DIVIDE BETWEEN EVIDENCE GENERATION AND CLINICAL CARE AND WHAT BETTER WAY THAN TO FOCUS ON THE PEOPLE WHO THE CARE IS PROVIDED TO. REALLY DELIGHTED TO BE HERE AND THANK YOU. OVER. >>THANK YOU, SHARI LING AND I'M MARCEL SALIVE AND I'LL START THE DISCUSSION. I'LL START WITH OUTCOME MEASUREMENT. THE NATIONAL CAD MYS SHOWED IMPLEMENTED REAL WORLD IMPLEMENTATION OF TWO CARE MODELS AND THINKING ABOUT YESTERDAY'S SESSION ON OUTCOMES THAT MATTER MOST AND WHAT CAPTURES THE PRIORITIES OF PEOPLE LIVING WITH DEMENTIA? >>I CAN START WITH THAT. SO THE SIX MODELS THAT I DESCRIBED ALL HAVE OUTCOMES OF EITHER QUALITY OF CARE, CLINICAL OUTCOMES INCLUDING FOR BOTH THE CAREGIVER AND THE PERSON LIVING WITH DEMENTIA AND UTILIZATION OUTCOMES. THE OTHER OUTCOMES ARE MORE EMBRYONIC STAGES FOR EXAMPLE GOAL ATTAINMENT SCALING AND THEY'RE IN RANDOMIZED CLINICAL TRIALS NOW. BUT THINKING ABOUT THE QUADRUPLE AIM LOOKING AT PROVIDER SATISFACTION. I THINK THERE'S EVIDENCE FOR ALL THOSE AND HOPEFULLY THE EVIDENCE WILL BE BETTER BASED ON RESEARCH EM MATING FROM THE CONFERENCE. -- EMANATING FROM THE CONFERENCE. >>I CAN AGREE WITH WHAT DAVID SAID BUT I WOULD SAY ONE OF THE THINGS THAT STRUCK ME AND THE MEMBERS OF OUR COMMITTEE WAS THE NEED FOR OUTCOME MEASURES THAT MEASURE WELL-BEING AND THE IDEA OF PEOPLE -- NOT SO MUCH UTILIZATION BUT HOW ARE THEY FEELING AND WHAT IS THE QUALITY OF THEIR LIFE AND THAT INCLUDES BOTH THE PERSON LIVING WITH DEMENTIA AND THEIR CARE PARTNERS AND CAREGIVERS. THAT ENCOMPASSED THE QUADRUPLE AIM OF THE PROFESSIONAL PROVIDERS AS WELL. >>THANK YOU. WE HAVE A QUESTION FROM MICHAEL ELLENBOGEN IF WE CAN UNMUTE AND FOR EVERYONE ELSE EP, I ENCOURAGE YOU TO TYPE YOUR QUESTION IN THE CHAT OR Q&A TO SEE THEM. >>THANK YOU FOR THE OPPORTUNITY. CAN YOU HEAR ME? >>YES. THANK YOU. >>THE SUBJECT IS DEAR TO MY HEART. I'VE BEEN LIVING WITH DEMENTIA OVER 10 YEARS SADLY BUT THE GOOD NEWS IS IT'S BROUGHT A PASSION OUT OF ME TO WANT TO CHANGE THE HEALTH SYSTEM AND I BELIEVE THERE'S PEOPLE HERE TO HELP ME DO THAT. I'M WORKING ON A PROJECT THAT IS TRYING TO CHANGE THE U.S. HEALTH SYSTEM ENTIRELY TO THE POINT WE WILL HAVE SOME SORT OF COGNITIVE TEST AND HAVE TRAINING TO HOSPITAL STAFF TO UNDERSTAND WHAT IT'S LIKE TO LIVE WITH THIS DISEASE AND MORE IMPORTANTLY TO TRAIN THEM HOW TO WORK WITH THE PEOPLE WHO COME TO THE HOSPITAL. MANY ARE OF THIS AND THOSE ON THE COMMITTEE ALREADY ARE AWARE OF THIS. I ALREADY PUT MY E-MAIL ADDRESS OUT THERE TO REACH OUT TO ME. I CAN TELL YOU THIS IS GOING TO HAPPEN. AND THIS IS NOT BECAUSE I HAVE THE KNOWLEDGE AND HAVE EXPERTS WITH ME HERE TODAY NOT ON MY TEAM AND I'D LOVE FOR THEM TO JOIN ME. THANK YOU. >>DOES ANYONE WANT TO COMMENT? THANK YOU. I HAVE A QUESTION FOR DR. WONG. I SAW THE EMERGENCY MEDICINE DIDN'T FILL 500 SLOTS IN THE MATCH PROGRAM FROM NEXT YEAR AND GERIATRICS IS A LONG-STANDING SPECIALTY AREA SHORTAGE AND SO WHAT ARE THE IMPLICATIONS OF THE SHORTAGES IN LIGHT OF YOUR PLANS TO JOIN THE FORCES OF GERIATRICS AND EMERGENCY MEDICINE TO ADDRESS MEDICINE. >>IT'S A BIG TOPIC WITH OUR NATIONAL MEETINGS IN EMERGENCY MEDICINE AND GERIATRICS IN MAY, I THINK IT WILL BE A DOMINATING DISCUSSION POINT. WHEN YOU MENTIONED THE NUMBER OF SLOTS THAT INITIALLY WENT UNFILLED FOR EMERGENCY MEDICINE, THAT REPRESENTS ALMOST 20% OF OUR SLOTS. I THINK THIS IS A BIG IMPACT. IT'S A REFLECTION OF THE COVID PANDEMIC AND BURN OUT WELLNESS IS CRITICAL AND CROWDING OUR EMERGENCY ROOM DEPARTMENTS. THE CROWDING OF THE EMERGENCY ROOM DEPARTMENTS REPRESENTS THE SYSTEM BEING OVERLOADED. WE'RE FACING SHORTAGES NOT JUST IN EMERGENCY ROOM BUT NURSING AND LONG-TERM CARE SERVICES. THERE'S NO PLACE FOR PATIENTS TO GO. I THINK THE WHOLE REASON I WENT INTO GERIATRIC EMERGENCY CARE AND NOW FOCUSSED ON DEMENTIA CARE IS BECAUSE OF THE IMPACT OF CROWDING AND IT CAN IMPACT THE QUALITY AND WE HAVE TO PROTECT THE VULNERABLE POPULATION AND NO MORE SO THAN THE EMERGENCY ROOM AND WE'RE THE SAFETY NET. IF WE CAN'T DO A GOOD JOB WITH THE CARE THERE, WHAT WILL HAPPEN WITH PATIENTS IN GENERAL? TO YOUR QUESTION THERE'S A COUPLE SOLUTIONS. THEY'RE ALL JUST OPINIONS OF MINE BUT AGAIN FOCUSSING ON WHAT WE CAN DO RIGHT FOR PATIENTS. IF WE CAN REDUCE THE RISK OF AN AVOIDABLE HOSPITALIZATION AND EMERGENCY ROOM DEPARTMENT WE WON'T SEE THE RELIEF IN CROWDING BUT WHAT WE'RE DOING IS SOMETHING GOOD FOR THE PATIENT, FAMILY AND HEALTH CARE SYSTEM. I THINK THERE'S AN OPPORTUNITY WITH THE SHORTAGES OF UNDERSTANDING AND PRESENTING REAL-WORLD SOLUTIONS ABOUT HOW WE CAN IDENTIFY THE MISSED OPPORTUNITIES AND MISALIGNED CARE FOR THE PATIENTS AND SHOW THE CLINICIANS HOW WE CAN POTENTIALLY FACILITATE AND GET THEM TO THE PROPER SETTING AND GET THEM TO THE BETTER OUTCOMES. IT WILL ALSO SHOW THE HEALTH CARE CLINICIANS THE VALUE OF SOMETHING LIKE A GERIATRIC EMERGENCY CARE AND DEMENTIA CARE MODELS. A LOT OF EMERGENCY ROOM PHYSICIANS WILL SAY IT'S NOT AN EMERGENCY BUT IT IS IF WE MISS IT. AND MARRYING THE TWO SPECIALTIES FACING A CRISIS POINT AND THEY'RE ONLY POTENTIALLY BECOME GREATER IF WE DON'T PARTNER AND ALIGN. I'LL THROW ONE MORE UNSANCTIONED SOLUTION IS CAN WE EXPAND THE OPPORTUNITY FOR TRAINING WITH GERIATRIC AND IF EMERGENCY ROOM PHYSICIANS ARE LEAVING THE FIELD OR THOSE WHO MAY BE INTERESTED IN EMERGENCY CARE CAN THEY CONSIDER GERIATRICS. FELLOWSHIP SPOTS ARE ALSO NOT FILLING. COULD THERE BE AN OPPORTUNITY TO OPEN UP TO ADDITIONAL SPECIALTIES TO GET ADDITIONAL TRAINING. LONG-WINDED ANSWER BUT A COUPLE DIRECTIONS AND EMPHASIZING THE OPPORTUNITY FOR PARTNERSHIPS WITH THE EMERGENCY ROOM DEPARTMENT. >>THANK YOU. I HAVE A QUESTION FROM THE AUDIENCE. CAN YOU SPEAK TO THE EXTENT TO WHICH CURRENT OR EXISTING COMPREHENSIVE CARE MODELS ARE REACHING INDIVIDUALS FROM DIVERSE GROUPS? LIKE RURAL, RACE/ETHNIC MINORITIES, FOR EXAMPLE. THESE ARE INCOMPLETE DATA. EACH OF THE MODEL DEVELOPERS COULD PROBABLY SAY MORE ABOUT WHAT POPULATIONS THEY'RE SERVING. I CAN SAY A GOOD BIT ABOUT THE STUDY AND CONSULTATION MODEL AND UCLA ALZHEIMER'S AND DEMENTIA CARE MODEL. IN THE TRIAL AND THIS IS PRETTY AMAZING BECAUSE IT'S A CLINICAL TRIAL, 21% OF THE POPULATION IS UNDER REPRESENTED MINORITIES. AND THAT'S VERY GOOD. ALSO RURAL POPULATIONS PARTICULARLY IN NORTH CAROLINA AND GEISINGER IN PENNSYLVANIA. THERE ARE DATA OUT THERE. IT HASN'T BEEN REALLY AMALGAMATED INTO A DIGESTIBLE DOCUMENT BUT THAT IS A GOAL. THAT'S A GOAL TO REACH THESE POPULATIONS THAT HAVE BEEN UNDER SERVED. >>THANKS. I HAVE ANOTHER QUESTION FROM THE AUDIENCE. THIS IS FROM APRIL. SO WHAT DOES THE PANEL SEE AS A ROLE OF DIG THAT WILL HEALTH TECHNOLOGIES IN MEASURING QUALITY OF LIFE OUTCOMES FOR BOTH PERSONS LIVING WITH DEMENTIA AND THE CAREGIVERS? HOW CAN YOU SUPPORT INTERVENTIONS. >>MAY I START? >>PLEASE. >>WHEN WE THINK OF DIGITAL TECHNOLOGIES THEY'RE VEHICLES TO MEASURE SOMETHING. WHAT'S THE SOMETHING BEING MEASURED? IF THESE ARE QUALITY OF LIFE OUTCOMES OR DATA ELEMENTS I WOULD ALSO LOOK TO FINALIZE BY WAY OF THE IMPACT ACT. AND WHY I MENTION THAT IS BECAUSE THERE'S CAREFUL STANDARDIZATION OF KEY AREAS, KEY BDOMAINS THAT INCLUDE MOBILITY FUNCTION AND GOALS OF CARE, PAIN AND SO ON AND SO FORTH. . IT'S A SEARCHABLE LIBRARY. IT'S CALLED THE DATA ELEMENT LIBRARY. KEEP IN MIND THAT THOSE ARE THE BASIS FOR WHICH MANY OF THE POST ACUTE CARE FACILITY BASED MEASURES WERE -- IT WAS MEANT TO SUPPORT THAT CONSTRUCT. THAT CONSTRUCT THOUGH THE INFORMATION GATHERED IS ALSO USABLE FOR PURPOSES OF THE CARE AND KEEPING OF THE INDIVIDUAL WHO'S ARE SERVED BY A FACILITY. SO IF YOU LOOK AT THOSE TWO, THERE'S A CONVERGENCE POINT THAT CAN BE AN INDICATOR OF HOW ONE TO WHAT MIGHT BE INTEGRATABLE AND COVERABLE AND FLAGGING FOR YOU THAT THE USCDI, I DON'T KNOW WHAT THE ACRONYM IS FOR BUT IT'S ABOUT INTEROPERABILITY AND DATA AND UNDER ASSESSMENT. THIS INCLUDES ASSESSMENT OF WHAT YOU MAY BE INTERESTED IN. TREMENDOUS OPPORTUNITY TO FOCUS ON THIS AND COULD BE LOOKED UPON AS INFORMATION INTEGRATABLE IN CARE MODELS AND ALIKE. OVER. THANK YOU. >>THERE'S BEEN WORK ON THINKING OF MODIFICATIONS TO THE MOMENT ENVIRONMENT TO ENABLE AGING IN PLACE. HOW CRITICAL IS THE QUALITY OF THE HOME ENVIRONMENT TO PEOPLE WITH THEIR CARE PARTNERS? >>THIS IS ONE OF THE MOTIVATION OF OUR EXPANSION TO OUR SENIOR PERSON'S HOME THERE ASSISTED TO INDEPENDENT LIVING AND THE BUILT ENVIRONMENT AND THE PEOPLE SURROUNDING THEM. AND SO HOW CRITICAL IS IT? IT'S IMPORTANT TO THE OVER ALL WELL BEING OF SOMEONE GETTING THROUGH THEIR DAYS IN AN ENGAGED AND SAFE MANNER. IT ALSO HAS IMPLICATIONS ON AFFECTIVE OR EMOTIONAL NEEDS BEING MET. SO THIS IS WHY WE BOTH VALUE CLASSES AND SUPPORT FOR FAMILY CARE PARTNERS WHO ARE OUR MOST POWERFUL INTERVENTION. HAVING THEM TRAINED AND EMPOWERED AND EDUCATED AND CONNECTED TO A RESOURCE WHEN THEY NEED IT ON OUR TEAM HAS BEEN IMPORTANT. THIS IS WHY ALSO WE'VE ADDED THE OCCUPATIONAL THERAPIST TO THE TEAM SO THEY ARE ACTUALLY IN THE HOME AND SETTING UP THE SPACE SO THE PERSON CAN BE AS AUTONOMOUS AS INDEPENDENT AS POSSIBLE FOR AS LONG AS POSSIBLE WHICH ALSO HAS IMPLICATIONS FOR EMOTIONAL WELL BEING. >>KEEP IN MIND THAT IN THE MEDICARE POPULATION MORE THAN 50% OF INDIVIDUALS ARE GOING TO HAVE NOT ONLY COGNITIVE IMPAIRMENT OR DIAGNOSIS WITH DEMENTIA BUT OTHER COMORBIDITIES AND IT'S IMPORTANT TO THINK ABOUT THE PERSON AND THE PERSON'S NEEDS NOT JUST FOR SOLVING THE PROBLEM OF COGNITION. I'M GLAD TO HEAR ABOUT THAT SHIFT AND THAT DEVELOPMENT, CAROLYN. THANK YOU, OVER. THERE WE HAD A QUESTION IN THE CHAT ABOUT ADVICE OR SOLUTIONS DEALING WITH STAFF SHORTAGES AND HIGH TURNOVER THERE. THERE'S PEOPLE WHO PROVIDE DIRECT CARE FOR PERSONS LIVING WITH DEMENTIA AND HOW THAT FITS IN THE CARE MODELS. >>IT'S A STUMPER. >>WE NEED TO TALK ABOUT THE CARE PEOPLE RECEIVE AND THERE'S OFTEN EMPHASIS ON HOW HARD IT IS AND YEAH, IT'S HARD AND YEAH THERE ARE SAD ELEMENTS. I'VE BEEN AROUND LONG ENOUGH TO KNOW OVER THE YEARS CARING FOR PERSONS LIVING WITH DEMENTIA AND THEIR FAMILIES IS A PRIVILEGE. I DON'T THINK WE SPEAK TO THAT ENOUGH. >>THANK YOU. >>I HAVE A QUESTION FOR YOU, ROBERTA. IT WAS GOOD TO HEAR YOU HAVE A CARE PROGRAM THAT WORKED FOR YOUR FAMILY. THE QUESTION IS WHY DID YOU PREFER THE SERVICES THROUGH THE DUKE MEDICINE PROGRAM FOR YOUR MOTHER'S CARE? >>I DID RESPOND IN THE CHAT BUT HAPPY TO ANSWER LIVE. IT WAS DIFFICULT FOR ME BECAUSE MY MOM WAS VERY AS AN IMMIGRANT SHE HELD ON TO HER MONEY AND ALWAYS DID WHATEVER SHE NEEDED TO HOLD ON TO THAT AND FOR US DUKE INTEGRATIVE YOU PAY FOR A QUALITY OF CARE THAT YOU PAY. EASY ACCESS, QUICK RESPONSE, COMFORTABLE YOU WALK IN AND IT DOES NOT FEEL LIKE A HOSPITAL OR CLINIC. AS I MENTIONED, I HAD A ONE AND A HALF AND 2-YEAR-OLD AT THE TIME AND A WAS CARRYING A LOT AND IT MADE ALL THE DIFFERENCE FOR ME AS HER SOLE CAREGIVER WE HAD THAT EXPERIENCE. THERE WAS A LOT WE HAD TO FIGURE OUT. I RECOGNIZE THAT'S A PRIVILEGE. I RECOGNIZE IT'S NOT A RESOURCE AVAILABLE TO THE MAJORITY OF PLACES. WE HAPPEN TO LAND IN A PLACE THAT HAD A LOT OF ACADEMIC CLINICAL RESOURCES BUT THAT'S MAINLY THE REASON WE PREFERRED DUKE INTEGRATIVE CARE. >>THANK YOU. I WANT TO THANK ALL THE SPEAKERS AND PANELISTS AND ESPECIALLY WANT TO THANK CASE POSSIN FOR HELP AND GREAT LEADERSHIP IN THE SESSION. DO YOU WANT TO SAY SOME WORDS? >>I'M LEFT THINKING ABOUT ROBERTA'S CLOSING COMMENT. IT IS POSSIBLE TO PROVIDE THE CARE THAT FAMILIES NEED AND WE HAVE A CHARGE TO DO THE RESEARCH REQUIRED AND SO IT'S ACCESSIBLE TO ALL FAMILIES STRUGGLING WITH DEMENTIA TODAY. THANK YOU. >>THANK YOU. THANK YOU TO EVERYONE FOR THEIR EXCELLENT CONTRIBUTION TO THE MORNING SESSION. WE NOW HAVE A SCHEDULED 35-MINUTE BREAK. WE'LL BE RECONVENING AT 1:00 P.M. EASTERN STANDARD TIME. >>WELCOME BACK FROM THE BREAK. I'M ANDREA GILMORE-BYKOVSKYI IS MY NAME JOINED WITH JULIE GILMORE-BYKOVSKYI AND YOU MAY ENTER QUESTIONS INTO Q&A AS WE PROCEED TO OUR NEXT SCIENTIFIC SESSION AND ON THE NIH VIDEOCAST YOU CAN ENTER QUESTIONS THERE AND WE'LL ROUTE THEM TO SPEAKERS AND CO-CHAIRS OF THE SESSION. UP NEXT WE'RE GOING HEAR FROM OUR FOURTH SCIENTIFIC SESSION DISPARITIES IN HEALTH CARE ACCESS, UTILIZATION AND QUALITY. THIS SESSION IS CO-CHAIRED BY DOCTORS CHANEE FABIUS AND EMERALD NGUYEN. I'LL HAND IT OVER TO YOU, CHANEE. >>WONDERFUL. THANK YOU AND THANK YOU ALL FOR JOINING US THIS AFTERNOON TO DISCUSS DISPARITIES AND HEALTH CARE ACCESS, UTILIZATION AND QUALITY. IN THE SUMMIT IN 2020 IT WAS A CROSS-CUTTING THEME. THIS UNDER SCORES THE IMPORTANCE OF THE TOPIC AND THIS YEAR WE WILL SPECIFICALLY FOCUS ON DISPARITIES IN HEALTH CARE ACCESS, OUT LIECHGS AND QUALITY. THE NATIONAL ACADEMIES OF SCIENCE AND MEDICINE REPORT RELEASED A 2021 CALLS FOR RESEARCH TO ADDRESS DISPARITIES IN HEALTH CARE ACCESS AND HEALTH RELATED OUTCOMES. SIMILAR WORK LED IN 2021 SUMMARIZED THE INFORMATION PRESENTED AT THE 2020 SUMMIT. PART OF THEME ONE WAS THE IMPACT OF DEMENTIA AND HIGHLIGHTED CHALLENGES IN THE ACCESS TO SERVICES AND HOW THE DISPARITIES MAY BE PARTICULARLY HARMFUL FOR PEOPLE FROM UNDER REPRESENTED GROUPS. THAT PAPER ALSO HIGHLIGHTED DISPARITIES IN HEALTH CARE COSTS AND INSURANCE POLICIES RELATED TO DEMENTIA. TODAY'S PRESENTATION ARE GOING TO FOCUS ON THOSE PARTICULAR ISSUES AND HIGHLIGHT SOME OF THE ONGOING WORK THAT NEEDS TO BE DONE. SO I'M GOING TO GO AHEAD AND INVITE EMERALD TO COME ON AND TELL US A BIT ABOUT OUR PRESENTATION. >>THE PRESENTATION IN TODAY'S SESSION WILL HIGHLIGHT THREE IMPORTANT TOPICS. THE FIRST PRESENTATION SETS THE STAGE FOR US AND FOR THE SESSION BY PROVIDING AN OVERVIEW OF PLACE-BASED AND OTHER CONTEXTUAL FACTORS RESEARCHERS HAVE EXAMINED TO UNDERSTAND DISPARITIES IN HEALTH CARE CACK ACCESS AND QUALITY. THE SKNT PRESENTATION WILL COVER THE ROLE OF HEALTH INFORMATION TECHNOLOGY OR H.I.T. IN ADDRESSING ACCESS AND QUALITY AND THE STATE OF THE RESEARCH ON INSURANCE POLICIES AND HOW THOSE IMPACT DISPARITIES AND IMPACTING QUALITY. NOW I'M VERY PLEASED TO WELCOME OUR THREE PRESENTERS. OUR FIRST PRESENTER IS DR DR. SHEKINAH FASHAW-WALTERS AND THEN JIE CHEN AND THEN NORMIA COE. >>I'M LOOKING FORWARD TO SPEAKING WITH ALL ABOUT THE ROLFE PERSON AND PLACE AND THE QUALITY OF DEMENTIA CARE. YESTERDAY WE GOT TO HEAR QUITE A BIT FROM DR. DRABO ON DIFFERENCES THAT WE SEE ACROSS DEMOGRAPHIC GROUPS OR I REFER TO IN THE PRESENTATION AS PERSON. IN MY SHORT TIME I WILL BRIEFLY COVER DIFFERENCES IN DEMENTIA DIAGNOSES BY RACE AND ETHNICITY AND WE'LL START TALKING ABOUT SOCIAL DETERMINATES OF HEALTH AS A ROOT CAUSE OF THE DIFFERENCES WE SEE AND WE'LL START TO DIG INTO PLACE AS A SOCIAL DETERMINATE OF HEALTH. THEN I'LL SHARE DATA FROM MAYBE FOUR DIFFERENT HEALTH CARE SERVICES TO ILLUSTRATE THE ROLE OF PLACE AND WE'LL WRAP UP NEXT STEPS. AS MANY KNOW, BLACK AMERICANS AS WELL AS LATINO AMERICANS ARE TWO TO ONE AND A HALF TIMES MORE LIKELY THAN WHITE AMERICANS TO HAVE ALZHEIMER'S DISEASE AND OTHER DEMENTIAS BUT LESS LIKELY TO HAVE A DIAGNOSIS OF THE CONDITION AND OFTEN DIAGNOSED AT LATER STAGES OF THE DISEASE WHICH PUTS THEM IN GREATER NEED FOR MORE MEDICAL CARE. I WANT YOU TO KEEP THAT IN MIND AS WE TALK ABOUT THE SERVICES AND CARE THAT ARE AVAILABLE TO FOLKS. SOME STUDIES SHOW AFTER ADDRESSING FOR HEALTH RISK SUCH AS BLOOD PRESSURE AND EVEN DIABETES THE DISEASE NO LONGER EXISTS WITH DEMENTIA AND THESE ARE IMPORTANT WITH RISK. THERE'S A NUMBER OF SOCIAL DETERMINATES OF HEALTH THAT LEAD TO DISEASE. MANY ELEMENTS YOU SEE ON THE SLIDE FROM ECONOMIC STABILITY TO FOOD, HEALTH CARE, NEIGHBORHOOD AND ENVIRONMENT CAN ALL BE LINKED TO DIABETES IN DIFFERENT WAYS. IF WE ADDRESS THESE SOCIAL DETERMINATES OF HEALTH IN FRONT OF YOU, WE CAN ELIMINATE UNOF THE MANY DRIVERS WE SEE IN BLACK AND LATINO POPULATION. FOLLOW ME HERE. WHAT I WANT TO DO IS PUSH US BEYOND SEEING THESE DIFFERENCES IN DEMENTIA AS DISPARITIES TO A PLACE TO SEE THE DIFFERENCES AS INEQUITIES. WHY? DISPARITIES ARE DIFFERENCES WHERE HISTORICALLY DISADVANTAGED OR MARGINALIZED GROUP IS FURTHER DISADVANTAGED OR MARGINALIZED BUT INEQUITIES ARE DISPARITIES UNFAIR, UNJUST AND AVOIDABLE. SO IF THE DATA SHOWS US THAT IF WE CAN CONTROL FOR RISK LIKE DIABETES IN SOCIO ECONOMIC STATUS THAT THEN WE CAN ELIMINATE THE DIFFERENCES THAT WE SEE IN DEMENTIA AND WHAT THE DATA IS TELLING US IS THAT WE ARE LOOKING AT A DISPARITY THAT IS ACTUALLY AN INEQUITY WHICH MEANS IT CAN BE FIXED. SO LET'S TAKE A LOOK AT THE CARTOON HERE ON THE SLIDE OF THREE INDIVIDUALS WATCHING A BASEBALL GAME FROM BEYOND THE FENCE. THE REALITY IS DISPARITIES HIT AND EQUITIES EXIST. EQUALITY ASSUMES EVERYONE WILL BENEFIT FROM THE SAME SUPPORT BUT EQUALITY CAN EXACERBATE DISPARITIES. I'LL TALK MORE ABOUT THAT LATER. EQUITY SAYS EVERYBODY GIVES THE SUPPORT THEY NEED. YOU SEE ONE INDIVIDUAL STANDING ON TWO BOX AND ANOTHER INDIVIDUAL NOT STANDING ON ANY BOX BECAUSE THAT IS WHAT THEY NEEDED TO SEE OVER THE FENCE. BUT THEN JUSTICE PUSHES US EVEN FURTHER TO SAY THE CAUSES OF THE INEQUITY SHOULD BE ADDRESSED AND SYSTEMIC BARRIERS SHOULD BE REMOVED. SO SAY THE FENCE REPRESENTS THE DISPARATE IMPACT OF SOCIAL DETERMINATES OF HEALTH. WHAT IF WE REMOVED THAT FENCE AND REMOVED THE DISPARATES IMPACTS OF THE SOCIAL DETERMINATES OF HEALTH. WE'D PROBABLY BE LEFT WITH NO MORE DIFFERENCES IN THE DEMENTIA PREVALENCE SO WE'RE TALKING ABOUT AN INEQUITY THAT'S AVOIDABLE AND FIXABLE. ONE OF THE SOCIAL DETERMINATES OF HEALTH THAT ACT AS A FENCE CREATING INJUSTICE IS PLACE. RESEARCHERS SAY ZIP CODES ARE BETTER PREDICT OF HEALTH THAN THE HEALTH CARE RECEIVED BECAUSE THE ZIP CODE PREDICTS THE HEALTH CARE YOU CAN RECEIVE. WE KNOW FROM DIFFERENT PARTS OF THE LITERATURE HIGH-QUALITY PROVIDERS WHETHER THEY BE HIGH-QUALITY PHYSICIANS, HOSPITALS, HOME HEALTH AGENCIES, THEY'RE LESS LIKELY TO SERVE IN DISADVANTAGED OR MINORITIZED COMMUNITIES. YOU MAY BE ASKING WHY THIS IS AND WHERE THIS STARTED IT STARTED WITH RESIDENTIAL SEGREGATION. LET'S GO TO THE NEXT SLIDE FOR A QUICK HISTORY LESSON. IN 1935 IN AN ATTEMPT TO HELP LOWER INCOME FOLKS AFFORD HOMES SECURITY MAPS WERE CREATED ALONG WITH THE PRACTICE OF RED LINING. YOU SEE GREEN AREAS THE BEST AREAS AND BLUE AREAS WHICH WERE GOOD AREAS AND YELLOW AREAS WHICH HAD DECLINING VALUE AND RED AREAS WERE KNOWN AS HAZARDOUS BECAUSE THAT'S WHERE FOREIGN BORN PEOPLE LIVED AND IMMIGRANT LIVED AND BLACK PEOPLE LIVED. THIS IS STILL MIRRORED IN OUR HEALTH CARE SERVICES. IN STUDIES HAVE SHOWN PLACE MATTERS FOR ACCESS TO HIGH QUALITY HEALTH SERVICES. I WANT TO SHOW YOU THIS IN FOUR DIFFERENT SERVICES TODAY. LET'S GO TO THE NEXT SLIDE. THIS FIRST SERVICE WE'LL TALK ABOUT IS ACCESS TO DEMENTIA SPECIFIC CARE WITHIN ASSISTED LIVING. WITH OTHER COLLEAGUES BACK IN 2020 WE PUBLISHED A STUDY IN JAMDA THAT COMPARES DIFFERENCES IN COUNTY SOCIO ECONOMIC CHARACTERISTICS BETWEEN COUNTIES THAT HAVE AT LEAST ONE ASSISTED LIVING WITH CARE BEDS AND COUNTIES THAT DO NOT HAVE ANY DEMENTIA SPECIFIC CARE. WE FOUND COMPARED TO COUNTIES WITH ASSISTED LIVINGS BUT NO DEMENTIA SPECIFIC CARE, COUNTIES THAT HAD DEMENTIA SPECIFIC CARE HAD SUBSTANTIALLY HIGHER COLLEGE ATTAINMENT, WERE MORE LIKELY TO BE IN URBAN AREAS, HAD A HIGHER MEDIAN HOUSEHOLD INCOME VALUE AND MORE PRIVILEGED AREAS. FROM AN ANALYSIS OF 2016, HOME HEALTH ASSESSMENT DATA I DOCUMENT THE USE OF HIGH-QUALITY HOME HEALTH AGENCIES FOR THOSE LIVING WITH DEM EN -- DEMENTIA WERE LOSEST AMONG BLACK AND LATINOS AND PEOPLE LIVING IN DEMENTIA IN NEIGHBORHOODS WITH A GREATER SHARE OF WHITE RESIDENTS WERE MORE LIKELY TO USE HIGH QUALITY HOME HEALTH AGENCIES COMPARED TO THOSE LIVING IN NEIGHBORHOODS WITH FEWER WHITE PEOPLE. THE OTHER GRAPHS GO IN THE OPPOSITE DIRECTION. YOU SEE THIS DOWNWARD SLOPE. THIS GRAPHS REPRESENT NEIGHBORHOODS THAT HAVE A HIGHER SHARE OF LATINO RESIDENTS. WE SEE WITH THE INCREASING SHARE OF LOWER-INCOME RESIDENTS, PEOPLE LIVING WITH DEMENTIA ACCESS FEWER HIGH-QUALITY HOME HEALTH AGENCIES. THE NEXT TWO EXAMPLES SHOW AN INTERESTING INTERACTION BETWEEN PERSON AND PLACE. WE WILL LOOK AT WHITE AND BLACK PEOPLE LIVING WITH AND WITHOUT DEMENTIA WHO RESIDE IN NEIGHBORHOODS WITH A VARYING AMOUNT OF SOCIAL DEPRIVATION. THE HIGHER NUMBER ALONG THE BOTTOM OF THE CHART, THE MORE SOCIO ECONOMICALLY DEPRIVED THE NEIGHBORHOOD IS OR LOWER INCOME. WHAT WE FIND FOR END OF LIFE IN THE LAST 30 DAYS OF LIFE THE PROPORTION HOSPITALIZED INCREASED AS THE NEIGHBORHOOD SOCIAL DEPRIVATION INCREASED. WE DON'T SEE THE SAME SLOPING GRADIENT FOR FOLKS AT THE END OF THEIR LIFE LIVING WITHOUT DEMENTIA. LET'S MOVE TO THE NEXT SLIDE. HERE I SHOW THE PROPORTION OF PEOPLE IN THEIR LAST 30 DAYS OF LIFE WITH THE FEEDING TUBE INSERTION AND THE SIMILAR PATTERN EXISTS WHERE AMONG THOSE WITHOUT DEMENTIA THERE'S A MINIMAL OBSERVABLE DISPARITY BUT WITH DEMENTIA THERE'S A LARGE AND GROWING DISPARITY EXACERBATED BY AN INCREASING SOCIAL DEPRIVATION INDEX. THE LAST TWO EXAMPLES SHOW PEOPLE WITH DEMENTIA AND BLACK PATIENTS OFTEN FACE BURDENSOME INTERVENTIONS AT THE END OF LIFE THAT CAN BE EXACERBATED BY PLACE ESPECIALLY FOR THOSE LIVING WITH DEMENTIA. SO DEMENTIA, RACE, NEIGHBORHOOD, SOCIO ECONOMIC STATUS HAVE AN AFFECT ON THE OBSERVED OUTCOMES THAT WE'RE STUDYING HERE. IT MEANS THAT INTERVENTIONS SHOULD CONSIDER STRUCTURAL APPROACHES TO IMPROVING CARE NOT JUST FOR END OF LIFE CARE IN THIS EXAMPLE I SHOW HERE BUT FOR HOME HEALTH AGENCIES AND ASSISTED LIVING AND NURSING HOMES AS WELL. WE CAN MOVE ON TO THE LAST SLIDE. THE LAST PIECE I WANTED TO SUMMARIZE WERE NEXT STEPS. I KNOW WE'LL HAVE A BIT MORE TIME TO TALK THROUGH THESE IN DETAIL COMING UP BUT ONE OF THE BIG TAKEAWAYS THEY THINK WE NEED TO REALLY FOCUS ON IS THAT THERE'S A LOT MORE WORK THAT NEEDS TO BE DONE IN THIS AREA TO UNDERSTAND THE ROLE OF PLACE IN DEMENTIA CARE AND THE FOCUS ON THE INTERACTION BETWEEN PLACE, POLICIES AND PEOPLE. THAT'S IT FOR NOW. THANK YOU SO MUCH. >>GOOD AFTERNOON. I'M JIE CHEN. THE TITLE IS EVIDENCE OF HEALTH INFORMATION TECHNOLOGY AND REDUCED HEALTH DISPARITIES IN DEMENTIA CARE. I WOULD LIKE TO THANK THE SUPPORT FROM THE NIH. THE COVID-19 PANDEMIC HAS ANNOUNCED THE WAY THE INDUSTRY UTILIZES TECHNOLOGY. AND THERE'S MANY EXPERIENCING A SUBSTANTIAL INCREASE FROM .84 MILLION IN TO 52.7 MILLION IN 2020. IT'S PERCEIVED AS BENEFICIAL AND COST EFFECTIVE. PATIENTS WITH ADRD AND THEIR CAREGIVERS GENERALLY RESPONDED WELL TO THE USE. THEY SHOWED SATISFACTION LEVELS AMONG PATIENTS AND THE CAREGIVERS WERE COMPARABLE FOR VIRTUAL AND IN-PERSON CARE. EVIDENCE SUGGESTED THAT THEY UTILIZE REMOTE PROVIDERS TREME LINING TREATMENT AND EASING BURNOUT AMONG HEALTH CARE PROVIDERS AND IT'S BEEN SEEN AS A FEASIBLE ALTERNATIVE FOR DIAGNOSING ADRD ALLOWING FOR EARLIER INTERVENTION AND MANAGEMENT. MEANWHILE THE USE OF HIT WAS OF INTEREST AND PROVIDES A SET OF CHALLENGES THAT MUST BE CONSIDERED. AND THEY'RE GENERALLY LESS COMFORTABLE AND MAY LACK ACCESS TO INTERNET OR AFFECT THE ABILITY TO UTILIZE TECHNOLOGY. MORE RESEARCH IS NEEDED TO UNDERSTAND THE UNIQUE CHALLENGES FOR PATIENTS WITH ADRD AMONG MINORITIZED POPULATIONS. I WOULD LIKE TO EMPHASIZE THE ISSUE OF THE DIGITAL DIVIDE. LIMITED ACCESS TO BROADBAND INTERNET AND THE TECHNOLOGIES POSES CONSIDERABLE CHALLENGES FOR THE UTILIZATION OF HIT IN DEMENTIA CARE. AND WHILE IT CAN IMPROVE EFFICIENCY, STUDIES SHOW AFRICAN AMERICAN AND HISPANIC PATIENTS ADRD HAVE LESS ACCESS TO THE HEALTH CARE SYSTEM COMPARED TO NON-HISPANIC WHITE COUNTERPARTS. COMPARED TO URBAN AND SUBURBAN AREAS THEY HAVE A HIGHER PERCENT OF OLDER ADULTS, HIGHER INCIDENTS OF HEALTH DISPARITIES AND POOR HEALTH CARE INFRASTRUCTURE INCLUDING HIT ADOPTION AND TELEHEALTH CAPABILITIES. AND HENCE EVIDENCE OF THE HIT HEALTH CARE QUALITY AND EQUITY IS HIGHLY NEEDED. I'LL FIRST PRESENT PROMISING EVIDENCE OF HIT AT THE HOSPITAL SETTING AND EXPAND UPON THE EVIDENCE OF HIT IN THE CONTEXT OF PARTNERSHIPS BETWEEN HOSPITALS, COMMUNITIES AND PUBLIC HEALTH SYSTEMS. HOSPITALS DELIVER VIT AL HEALTH CARE SERVICES. HOSPITAL-BASED HIT IMPROVES COORDINATION AND ENCOURAGES PATIENT ENGAGEMENT AND ENABLES HEALTH INFORMATION EXCHANGE. WE FIRST PRESENTED EVIDENCE OF THE ETHNIC DISPARITIES. USING MEDICARE DATA OUR STUDY EXAMINED THE QUALITY OF THE POST DISCHARGE SUCH AS REMOTE PATIENT MONITORING AND THE TREATMENT AND EXPLORE THE ASSOCIATION WITH MEDICARE PATIENT AND IN-PATIENT PAYMENT AND MEDICARE FEE FOR SERVICE PAYMENT AND HOSPITAL HIT WAS HIGHER IN PAYMENT ON AVERAGE BUT HIT WAS ASSOCIATED WITH MORE SUBSTANTIAL COST SAVINGS FOR AFRICAN AMERICAN AND HISPANIC PATIENTS WITH ADRD. THE COST SAVED FROM $2100 TO $2,000 PER PERSON PER YEAR. THIS SUGGEST THE POTENTIAL TO DESIGN AND USE HIT TO MEET PREFERENCES AND NEEDS BY A PATIENT'S RACE AND ETHNICITY. CONSISTENTLY ANOTHER STUDY DEMONSTRATED A PROMISING ASPECT OF HOSPITAL HIT, PATIENT ENGAGEMENT AND FUNCTIONALITY. FOR INSTANCE, ACTIVE PATIENT INVOLVEMENT IN THEIR OWN HEALTH RECORDS TO SHARE IN DECISION MAKING AND PREVENTED E.D. VISITS. EVIDENCE OF HIT IN URBAN AND RURAL DISPARITIES FOR PATIENTS IS PROMISING. POST DISCHARGE COMBINED WITH SERVICES SIGNIFICANTLY DECREASED THE ODDS OF HAVING PREVENTIBLE HOSPITALIZATION AMONG PATIENTS WITH ADRD IN RURAL AND IN METROPOLITAN AREAS AND HOUSING IS ESSENTIAL FOR CARE MANAGEMENT AND COMMUNITY FOR PATIENTS WITH ADRD AND THE SYSTEM REQUIRE A ROBUST PARTNERSHIP AMONG HEALTH CARE AND SOCIAL SECTORS TO PROVIDE WHOLE PERSON CARE. AGENCIES INCLUDING THE CDC AND AMONG OTHERS HAVE ADVOCATED REINFORCING THE ROLE OF PUBLIC HEALTH SYSTEMS AND ACROSS-SECTOR COLLABORATIONS. AFRICAN AMERICAN AND HISPANIC BENEFICIARIES WERE MORE LIKELY TO BE TREATED WITHOUT SYSTEM SUPPORT OR INFRASTRUCTURE. AND ADJUSTING FOR THE DEMOGRAPHIC CHARACTERISTICS AND HEALTH NEEDS AND RESULTS SHOW IT'S TREATED IN HOSPITAL WITH SUPPORT OF HIT AND THE PUBLIC HEALTH SYSTEM ENCOUNTERED A LOWER MEDICARE PATIENT WITH ADMISSIONS ESPECIALLY FOR AFRICAN AMERICAN PATIENTS. FINALLY I WANT TO REVIEW HEALTH INFORMATION EXCHANGE QUICKLY AND THE FIGURE TABULATES ASSOCIATION BETWEEN THE PAYMENT MODEL AND THE PUBLIC HEALTH COLLABORATION USING THE 2020 AMERICAN HOSPITAL SURVEY. RESULTS SHOW THE HOSPITALS WITH THE PUBLIC COLLABORATION WERE MORE LIKELY TO RECEIVE INFORMATION NEEDED TO TREAT COVID-19 AND HOSPITAL COLLABORATING WITH PUBLIC HEALTH SYSTEMS WERE MORE LIKELY TO RECEIVE INFORMATION FROM OUTSIDE PROVIDERS. AND THE ASSOCIATION WAS ROBUST AFTER CONTROLLING FOR CHARACTERISTICS AND GEOGRAPHIC LOCATIONS AND THE SOCIAL DETERMINATES OF HEALTH AND ROBUST PARTNERSHIP BETWEEN HEALTH CARE SYSTEM AND PUBLIC HEALTH MAY REFLECT COMMUNITY RESOURCES AND WITH SOCIAL SERVICE AND THROUGH THE TRUST AND SOCIAL NETWORKS THAT HAVE BEEN EMBEDDED IN COMMUNITIES FOR DECADES. HIT SUPPORTED SYSTEM-LEVEL MULTI-DISCIPLINARY INTEGRASE FOR POPULATION HEALTH AND EQUITY CALLED SMILE HAS POSITIVE FRAMING. THE E SMILE MODEL IS HOW HIT CAN WORK WITH PATIENTS AND CAREGIVERS AND PROVIDERS AND SYSTEMS AND COMMUNITY AND PUBLIC ASSISTANCE AND THE POLICY MAKERS TO IMPROVE HEALTH EQUITY AND ACCESS AND QUALITY WHILE REDUCING HEALTH CARE COST. THE EXCITING NEWS IS FEDERAL POLICY SUCH AS 21 CENTURY CURES ACT ARE BEING IMPLEMENTED TO IMPROVE DATA COMPLETENESS AND THE DATA QUALITY OF E.H.R. DATA INTEROPERABILITY ACROSS SYSTEMS AND CROSS-SECTOR COLLABORATION AND PAYMENT TO UNITE THE SUPPORT AND IMPROVE THE TELEHEALTH SYSTEM FOR ALL. AS MORE INVESTMENT ARE DIRECTED TOWARDS DEVELOPING AND STRETCHING CAPACITY IT'S CRITICAL TO ASSESS HIT INFRASTRUCTURE AND COMMUNITY INTEGRATION TO ENGAGE AND SERVE PATIENTS WITH ADRD FROM DIFFERENT RACIAL AND ETHNIC GROUPS, PATIENTS WITH VARIOUS NEEDS AND PATIENTS LIVING IN COMMUNITIES WITH LACK OF HEALTH CARE RESOURCES AND OTHER STRUCTURAL BARRIERS. RESEARCH IS ALSO NEEDED TO UNDERSTAND EARLY DISEASE TRAJECTORY TO UNDERSTAND THE IMPACT OF HEALTH ON PREVENTION AND DELAYING THE OUTSET OF ADRD. NEXT. I WOULD LIKE TO CONCLUDE MY TALK WITH OUR SLOGAN, FEARLESS FORWARD. THANK YOU. >>HI, THANKS. IT'S AN HONOR TO TALK ABOUT FOUR POLICIES IN PLACE AFFECTING HEALTH CARE AND INSURANCE AND THE ONSET OF EFFECTIVE CHANGING QUALITY OF CARE AVAILABLE FOR PEOPLE LIVING WITH DEMENTIA. FIRST MY WORK IS FUNDED BY THE NIA BUT MY THOUGHTS TODAY ARE MY OWN. THE ELEPHANT IN THE ROOM HAS BEEN THE TRANSITION TO MEDICARE ADVANTAGE. IT'S THE PRIVATE HEALTH INSURANCE OPTION AVAILABLE FOR OLDER ADULTS IN THE UNITED STATES AS OPPOSED TO THE MORE TRADITIONAL OR FEE FOR SERVICE MEDICARE PROGRAM. WE ARE RANDOMLY APPROACHING 50% OF THE OLDER POPULATION NOW BEING INSURED BY MEDICARE ADVANTAGE. THE SWISH IS NOT UNIVERSAL. THE GROWTH IN MEDICARE ADVANTAGE ENROLLMENT HAS BEEN GREATEST AMONG BLACK AND HISPANIC ENROLLEES. THERE'S AN UPTICK AMONG THE INDIVIDUALS WHO ARE ENROLLED IN MEDICARE AND MEDICAID INSURANCE. UNTIL RECENTLY DATA FOR MEDICARE ADVANTAGE WAS HARD TO COME BY. IT WAS IN THE LAST 10 YEARS ADMINISTRATIVE AND COUNTER DATA HAS BEEN AVAILABLE AND THERE HAS BEEN A VAST IMPROVEMENT IN THE DATA NOT JUST AVAILABILITY AND IN QUALITY OVER THE LAST FIVE YEARS BUT CRITICAL GAPS REMAIN. A RECENT REPORT DOES STATE THEY CAN NO LONGER PROVIDE AN ACCURATE DESCRIPTION OF THE QUALITY OF CARE IN MEDICARE ADVANTAGE AND THAT IS AN IRISH GOING FORWARD FOR ALL DISEASES BUT ESPECIALLY AMONG THOSE WITH DEMENTIA. WHAT WE KNOW IS BLACK AMERICANS DO NOT ENROLL IN AS HIGH QUALITY MEDICARE ADVANTAGE PLANS AS THEIR WHITE COUNTERPARTS IF YOU TAKE THE STAR RATING AS A MEASURE THE HIGH QUALITY PLAN. AND RECENT WORK HIGHLIGHTS THAT THIS IS PART TO WHERE BLACK AMERICANS LIVE COMPARED TO WHERE HIGH QUALITY MEDICARE ADVANTAGE PLANS ARE OFFERED AS HIGHLIGHTED IN THE PRESENTATION EARLIER. WE ALSO KNOW THAT HISPANIC AND AFRICAN AMERICAN PATIENTS WITH DEMENTIA ARE MORE LIKELY TO ENROLL IN M.A. PLANS LEADING TO DOWN STREAM AFFECTS IN WHERE THEY RECEIVE CARE AND MORE LIKELY TO BE ADMITTED TO SEGREGATED NURSING HOMES WITH LOWER QUALITY OF CARE OVER ALL. IF YOU BELIEVE THAT PEOPLE SHOW THE QUALITY OF CARE THEY'RE RECEIVING WITH THEIR FEET, WE DO SEE CONCERNING TRENDS ABOUT ENROLLMENT AND DISENROLLMENT IN MEDICARE ADVANTAGE. DISENROLLMENT MEANING LEAVING THE MEDICARE ADVANTAGE PROGRAM ALTOGETHER AND MOVING TO TRADITIONAL MEDICARE. WE WE SEE DISENROLLMENT RATES ARE HIGHER FOR THOSE LIVING WITH DEMENTIA COMPARED TO THOSE WHO DO NOT HAVE A DIAGNOSED DEMENTIA CASE. ALL THIS WILL CONTINUE TO PLAY OUT AS WE CHANGE THE BENEFIT STRUCTURES IN THE TWO DIFFERENT INSURANCE POLICIES. ONE EXAMPLE IS THE SWITCH FROM HOSPICE TO BEING ALWAYS COVERED BY TRADITIONAL MEDICARE TO BEING A CARVE-IN POLICY WHERE MEDICARE ADVANTAGE MAY NOW BE COVERING PLANS A HOSPICE CARE ITSELF. WE KNOW PEOPLE ON HOSPICE HAVE DIFFERENT PATHWAYS OR PEOPLE ON MEDICARE ADVANTAGE HAVE DIFFERENT PATHWAYS TO HOSPICE AND WHERE THEY COME FROM AND WHETHER THEY COME FROM THE COMMUNITY OR NOT OR FROM HOSPITAL. WE KNOW HOSPITALS CAN REDUCE RATES OF PEOPLE WITH DEMENTIA AND NEED TO BE CAREFUL AS WE CHANGE THE REIMBURSEMENT POLICY AMONG THE DIFFERENT INSURANCE PLANS AND HOW THIS IS GOING TO CHANGE FOR PEOPLE LIVING WITH DEMENTIA. THE NEXT TYPE OF CHANGE THAT'S HAPPENING IS INCREASED EMPHASIS ON CARE COORDINATION. THIS IS DONE AT THE INSURANCE LEVEL THROUGH WHAT THEY CALL ISNPs OR DSNPs AND THERE'S THE CAREGIVER ACT AND RECORD AND ENABLE ACT A STATE-LEVEL POLICY THAT REQUIRES HEALTH CARE PROVIDERS TO IDENTIFY A CAREGIVER IN AN ACUTE CARE SETTING. WHILE THEY'VE BEEN AROUND A WHILE WE HAVE FAIRLY LIMITED EVIDENCE ABOUT THEIR EFFECTIVENESS NAMELY BECAUSE IT'S HARD TO IDENTIFY AND ONE WHO USED A NURSE CARE MANAGER MODEL IMPROVED THE QUALITY OF CARE WITH PERSONS LIVING WITH DEMENTIA. THERE'S PROMISE WE SHOULD LOOK FURTHER IN THE INCREASE TO COMMUNICATION AND INCREASED CARE MANAGEMENT. WE ALSO KNOW ENROLLMENT IN ISNPs IS ASSOCIATED WITH RESIDENTS IN A NURSING HOME AND THAT DEPENDS ON THE LEVEL OF CARE AND ACCESS TO CARE THEY WERE GETTING WHEN LIVING IN THE COMMUNITY. THE CARE ACT PAPER JUST RECENTLY ACCEPTED THIS WEEK. IT'S NOT EVEN HOT OFF THE PRESSES YET LOOKING AT THE CARE ACT ON COMMUNICATION. WE DO SEE THAT AS STATES ACCEPT OR PASS THE POLICY FOR THE CARE ACT TO INCREASE COMMUNICATION TO CAREGIVERS IN ACUTE CARE SETTINGS LEADS TO IMPROVED PHYSICIAN COMMUNICATION AND WHILE THE PAPER DOESN'T LOOK SPECIFICALLY AT PATIENTS WITH DEMENTIA YOU CAN IMAGINE THEY MAY BENEFIT FROM SUCH COMMUNICATION AND IDENTIFICATION OF CAREGIVERS DISPROPORTIONATELY MORE THAN OTHERS. A THIRD AREA WHERE THERE'S BEEN A LOT OF GROWTH AND CHANGES HAPPENING HAS BEEN IN THE MEDICARE/MEDICAID HOME AND COMMUNITY BASED SERVICES. WE HAVE BEEN SEEING THIS AND KNOW IT SAVES MONEY OVER ALL BY INCREASING INSTITUTIONALIZATION AND BENEFITS CAREGIVERS. IT'S NOT A PANACEA. WE KNOW IT LEADS TO MORE HOSPITAL COMPARED TO THOSE IN NURSING HOMES AND LOWER LEVELS OF SOCIAL ENGAGEMENT AMONG THE PERSON LIVING WITH DEMENTIA. WE NEED TO THINK ABOUT BOTH EXPANDING PERHAPS HOME AND COMMUNITY SERVICES AND LOOK AT THE DOWN SIDE AS WELL. IT'S IMPORTANT TO NOTE TOO THERE'S VARIATION IN HOME COMMUNITY-BASED SERVICES ACROSS STATES. SO ONE MEDICAID PROGRAM MEANS SOMETHING ABOUT ONE MEDICAID PROGRAM BUT THERE'S ROOM FOR GROWTH HERE IN THINKING WHAT IS IT ABOUT ONE PARTICULAR COMMUNITY-BASED SERVICES PROGRAM AND HOW'S THAT WORK COMPARED TO ANOTHER. WE ALSO NEED TO BE MINDFUL OF RACIAL DIFFERENCES WITHIN THE HOME AND COMMUNITY-BASED SERVICES PROGRAMS BETWEEN STATES. WE KNOW THEY SERVE DIFFERENT PATIENTS AND DIFFERENT POPULATION CHARACTERISTICS AND HAVE DIFFERENT UTILIZATION PATTERNS AND DIFFERENT TIMING OF SERVICES AND WE NEED TO HONE IN ON WHY ALL THE DIFFERENCES HAPPEN. IS IT PREFERENCES OR ACCESS OR DIFFERENCES IN THE FAMILIAL SUPPORT. HOW DO WE SEE THE DIFFERENCES TO ADDRESS THE GOAL OF PROVIDING THE BEST SUPPORT TO EVERYONE LIVING WITH DEMENTIA. LASTLY I WANT TO TALK A LITTLE BIT ABOUT PHARMACOLOGIC DEVELOPMENT AND COVERAGE. WE HEAR ABOUT IT IN THE NEWS AND LOTS OF DEBATES ON PHARMACOLOGIC INTERVENTIONS. WE'RE NOT QUITE THERE YET WHERE WE HAVE A PILL THAT WILL SOLVE ANY MAJOR PROBLEMS BUT WE DO WANT TO BE AWARE OF WHAT OUR COVERAGE DECISIONS AND THE DIFFERENT PHARMACOLOGIC DEVELOPMENTS MEAN FOR DISPARITIES WITHIN DEMENTIA AND CARE. WE DO ALREADY KNOW THAT THERE ARE DISPARITIES IN ANTIDEMENTIA DRUGS ALREADY BETWEEN WHITE VERSUS NON-WHITE PATIENTS, FEMALE VERSUS MALE PATIENTS AND RURAL VERSUS URBAN PATIENTS. WE KNOW THERE'S DISPARITIES AND WE NEED TO KEEP THEM IN MIND WHEN WE MAKE COVERAGE DECISIONS AS THE MEDICINES IMPROVE GOING FORWARD. THE PANDEMIC ACCELERATED A LOT OF FUNDING IN HOME AND COMMUNITY-BASED SERVICES AND WIDESPREAD GROWTH OF TELEMEDICINE AS IN THE PREVIOUS TALK. WE NEED TO THINK ABOUT WHERE DID THIS BENEFIT AND WHAT CAN WE LEARN FROM IT AND WHO DID IT BENEFIT AND WHAT LESSONS CAN WE TAKE FROM THESE TYPES OF PANDEMIC CHANGES IN POLICY. I WOULD LIKE TO ADVOCATE WE CONTINUE FOCUSSING ON DOCUMENTING DISPARITIES AND DIFFERENCES BUT WE NEED TO UNDERSTAND WHY THE DIFFERENCES HAPPEN IN ORDER TO DEVELOP POLICIES THAT BEST SERVE ALL COMMUNITIES AND IN ALL SITUATIONS THEY FACE. AND I THINK WE NEED TO THINK CREATIVELY HOW TO EXAMINE THE PANDEMIC PERIOD. YES, THERE WAS A GLOBAL PANDEMIC THAT CHANGED EVERYTHING AND CHANGED A LOT OF POLICIES AND WE WANT TO THINK ABOUT WHAT CAN WE LEARN FROM THAT TIME PERIOD THAT WE CAN TAKE FORWARD AND MOVE FORWARD SO WE CAN ADDRESS CARE AND POLICIES GOING FORWARD. THANK YOU. >>THANK YOU. THANK YOU ALL FOR THOSE TREMENDOUS AND EXCITING PRESENTATIONS. I AM JUST GOING TO TAKE A MINUTE TO REVIEW THE GAP RESEARCH OPPORTUNITIES SESSION 4 PARTICIPANTS HAVE SORT OF BEEN BRAIN STORMING OVER THE PAST FEW WEEKS AS WE PREPARE FOR TODAY. THE FIRST INCLUDES IDENTIFYING AND IMPLEMENTING STRATEGIES TO EXPAND -- EXCUSE ME, DATA AVAILABILITY AND LINKAGES BETWEEN DATA SOURCES AT LOCAL, STATE AND FEDERAL LEVELS AS WELL AS ACROSS HEALTH CARE SETTINGS IN AND OUT OF TRADITIONAL HEALTH SYSTEMS THAT FACILITATE THE EXAMINATION OF SOCIAL DETERMINATES OF HEALTH, INCREASE REPRESENTATION OF POPULATION VULNERABLE TO EXCLUSION AND EXAMINE EXAMINATION OF DEMENTIA CARE AND QUALITY AND HIGHLIGHT DEVELOPING STRATEGIES THAT CONSIDER HEALTH INFORMATION EXCHANGES ACROSS SILOS OF HEALTH CARE SETTINGS SUCH AS ADULT DAYCARE CENTERS. EXAMINE HOW HEALTH INFORMATION TECHNOLOGY AFFECTS CARE ACCESS AND QUALITY OF COST FOR THOSE LIVING WITH DEMENTIA FOR POPULATIONS UNDER INCLUDE IN RESEARCH AND THE SUBBULLETS FOLLOWING NUMBER 2 INCLUDE DESCRIBING AND IDENTIFYING DRIVING FACTORS FOR DISPARITIES OF HEALTH INFORMATION TECHNOLOGY AND ACCESSIBILITY, AVAILABILITY AND UTILIZATION INCLUDING USER FRIENDLY DESIGNS AND PATIENT PORTALS TO ENGAGE PATIENTS AND CAREGIVERS AND TELEMEDICINE TO LOOK AT COORDINATION AS IT RELATE TO DISEASE AND PREVENTION AND TO EXAMINE THE SECOND SUB BULLET LOOK AT TECHNOLOGY ACCESS AND DEVELOPING STRATEGIES TO ADDRESS DISPARITIES AND ACCESSIBILITY IN USERS FOR ALL SETTINGS AND THE FINAL BULLET THE THIRD GAP IN OPPORTUNITY CONDUCT RESEARCH TO DETERMINE HOW HEALTH CARE POLICY AND PAYMENT MODELS AFFECT ACCESS AND QUALITY OF CARE RECEIVED BY PEOPLE LIVING WITH DEMENTIA IN COMMUNITY AND RESIDENTIAL SETTINGS TO GUIDE INTERVENTION. CONDUCT ANALYSES EXAMINING HOW TO USE MEDICAL CARE AND ASSESS AND HOW CARE IS IMPACTED BY MEDICARE, MEDICAID AND OTHER HEALTH INSURANCE MODELS SUCH AS PRIVATE LONG INSURANCE MODEL AND PROVIDE CARE AND CONCORDANCE. SO FOLLOWING OUR PRESENTATIONS AND THE REVUKE OF OUR GAPS AND OPPORTUNITIES I'M EXCITED TO HEAR FROM OUR THREE PRESENTERS TODAY. FIRST WE'LL HAVE MARICRUZ RIVERA-HERNANDEZ AND HEAR FROM TINA SADARANGANI FROM NEW YORK UNIVERSITY AND WE'LL HEAR FROM EMMANUEL DRABO AN ASSISTANT PROFESSOR AT JOHNS HOPKINS UNIVERSITY. FIRST WE'LL GIVE THE FLOOR TO DR. RIVERA-HERNANDEZ. >>THANK YOU FOR INVITING ME TO BE PART OF THE SESSION INCORPORATING THE PRESENTATIONS. THE PRESENTATIONS DESCRIBE DISPARITIES AMONG MEDICARE ENROLLEES AND ONE TALKED ABOUT THE GAP IN THE DISPARITIES IN DEMENTIA CARE AND OUTCOMES WHICH IS EXTREMELY IMPORTANT GIVEN THE RACIAL AND ETHNIC DISPARITIES IN THE INCIDENTS OF DEMENTIA AND ENROLLMENT OF ETHNIC AND RACIAL MINORITY POPULATIONS IN THE MEDICARE ADVANTAGE PROGRAM. ONE OF THE KEY MESSAGES OF THE WORK IS THAT INSURANCE IMPACTS ACCESS TO CARE. THE VAST MAJORITY OF PEOPLE LIVING WITH DEMENTIA ARE ENROLLED IN MEDICARE. MORE EVIDENCE ARE NEEDED FOR DISPARITIES AND THE USE OF TELEHEALTH AS DEMONSTRATED. MEDICARE ENROLLEES CAN DECIDE BETWEEN TRADITIONAL MEDICARE OR MEDICARE ADVANTAGE. ENROLLEES WITH DEMENTIA MAY FACE CHALLENGING IN SELECTING THE RIGHT PLAN FOR THEM WITH THE APPROPRIATE BENEFITS WHICH MAY LEAD TO LOWER RATE OF CARE EXPERIENCES. EVEN OTHER WORK SHOWS GEOGRAPHIC HAS THE IMPACT OF THE TYPE OF CARE OFFERED TO ADULTS LIVING WITH DEMENTIA AND TELEHEALTH PROVIDERS MUST ADDRESS DIGITAL GAPS AND ENROLLING IN MEDICARE ADVANTAGE. AND CURRENTS TRENDS SHOW THAT MEDICARE ADVANTAGE ENROLLMENT IS EXPECTED TO GROW OUTPACING TRADITIONAL MEDICARE. GIVEN THIS AMONG MEDICARE ADVANTAGE THEY SPECIALIZE IN CARING FOR PEOPLE WITH MORE COMPLEX HEALTH NEEDS WITH OUTCOMES AND THERE'S RESEARCH ON THIS. IN TERMS OF GEOGRAPHYING DISPARITIES IN THE USE OF TELEHEALTH PATIENT-REPORTED MEASURES COULD PROVED ADDITIONAL INFORMATION ON THE ISSUES. HOWEVER, ONE THING WE HAVE LEARNED FROM RESEARCH AT OUR CENTER FOR GERONTOLOGY IS MEDICARE BENEFICIARIES WITH DEMENTIA WERE LESS LIKELY TO BE INCLUDED IN PERFORMANCE MEASURES THAN ENROLLEES WITHOUT AND THOSE INCLUDED IN THE PATIENT-REPORTED MEASURES ENROLLEES WITH DEMENTIA REPORTED SIGNIFICANTLY WORSE CARE EXPERIENCE ACROSS DIFFERENT MEASURES COMPARED TO THOSE WITHOUT DEMENTIA. MORE EVIDENCE ARE NEEDED TO ADDRESS THE POPULATION. WE NEED TO CONTINUE TO USE THE TOOLS PRESENTED HERE SUCH AS ZIP CODE LEVEL INFORMATION TO ADDRESS SOCIAL DETERMINATES OF HEALTH AND TO IMPROVE RESOURCES IN SPECIFIC AREAS AS WELL AS EXAMINING WHETHER MEDICARE PLANS ACROSS GEOGRAPHIC MARKETS IMPACT THE NEEDS OF THOSE ENROLLED. AND THIS HIGHLIGHTS SOME AREAS WE MUST FOCUS. THANK YOU VERY MUCH AND I LOOK FORWARD TO THE CONVERSATION. >>NEW. DR. SADARANGANI. >>THE QUALITY OF CARE THAT PERSONS WITH DEMENTIA RECEIVE SHOULD NOT BE AFFECTED BY WHERE THEY LIVE OR THE COLOR OF THEIR SKIN BUT THE RESEARCH TODAY PRESENTED SUGGESTS IT DOES. DR. WALTERS NOTE THE PREVALENCE AMONG BLACK AND ACCESS TO CARE CORRELATES TO WHERE YOU LIVE. DR. COE NOTED AFRICAN AMERICAN AND HISPANIC PATIENTS WERE MORE LIKELY TO BE ADMITTED TO SEGREGATED NURSING HOMES WITH FEWER RESOURCES AND LOWER QUALITY OF CARE AND DR. CHEN NOTED GAPS IN HEALTH INFORMATION TECHNOLOGIES AMONG THE POPULATIONS THAT NEED THEM MOST INCLUDING MINORITIZED PERSONS AND THOSE WHO LIVE IN RURAL COMMUNITIES. HOWEVER, OUR PRESENTERS HAVE ALSO DEMONSTRATED WHEN PARTNERSHIPS ARE FORMED WITHIN COMMUNITIES AND POLICIES AND PROGRAMS EXIST THAT EQUITABLY RESOURCE HOSPITALS WE CAN DELIVER A HIGHER STANDARD OF DEMENTIA CARE THAT IMPROVES OUTCOMES IN DIVERSE POPULATIONS. NOTABLY, DR. CHEN FOUND AFRICAN AMERICAN PATIENTS WITHIN HER PUBLIC HEALTH SYSTEM PARTNERSHIP EXPERIENCED SIGNIFICANTLY LOWER COST, IN-PATIENT VISITS AND RE-ADMISSION RATES WHEN TREATED AT HOSPITALS WITH A PUBLIC HEALTH SYSTEM PARTNERSHIP. IN MY OWN WORK FOCUSSED ON HOME AND COMMUNITY BASED SERVICES ADULT DAY CENTERS WHERE HALF OF PERSONS WITH DEMENTIA THE OBSERVATIONS AND FINDINGS FROM STAFF ARE RARELY LEVERAGED OR SHARED WITH PROVIDERS. DAY PROGRAMS ARE FREQUENTLY UNDER RESOURCED LIKE MANY LONG-TERM CARE SETTINGS THAT DISPROPORTIONATELY SERVE MINORITY POPULATIONS. AND THESE LACK THE TECHNOLOGY TO FACILITATE COLLABORATIVE CARE. THIS CONTRIBUTES TO FRAGMENTED CARE OF PEOPLE WITH COMPLEX AND SOCIAL NEEDS AND COSTLY AND TRAUMATIC OUTCOMES. TWO KEY FINDS ARE WE MUST AIM TO DELIVER HIGHER STANDARDS OF DEMENTIA CARE ACROSS TRADITIONAL AND NON-TRADITIONAL HEALTH CARE SETTINGS FOR MINORITIZED POPULATIONS AND WHEN WE INTEGRATE CARE ACROSS NEIGHBORHOODS WHETHER AT HOME OR IN THE HOSPITAL OR IN MY CASE THE DAY CENTER WE CAN PROVIDE A MORE COHESIVE AND HOLISTIC CARE WHILE MEETING PEOPLE WHERE THEY ARE. TO ACHIEVE HIGH QUALITY DEMENTIA CARE FOR ALL WE MUST LEVERAGE TECHNOLOGY AND TAKE GREAT CARE IN DESIGNING OUR INTERVENTIONS TO ENSURE THE PEOPLE WHO WOULD BENEFIT THE MOST CAN ACCESS THE TECHNOLOGIES THAT MAKE THAT CARE POSSIBLE. AGENCIES PROVIDING HOME AND COMMUNITY-BASED SERVICES CAN FACILITATE ACCESS TO CULTURALLY APPROPRIATE INTEGRATED HEALTH AND SOCIAL CARE THAT LEVERAGES TECHNOLOGY BUT NEED THE RESOURCES TO DO SO. GOING FORWARD WE NEED TO EXAMINE CLOSELY HOW WE WORK WITH MINORITIZED PERSONS AND COMMUNITY PARTNERS TO CO-CREATE DEMENTIA FRIENDLY POLICIES AND PROGRAMS AND INTERVENTIONS THAT SUPPORT INTEGRATIVE CARE IN THE COMMUNITY AND NOT SIMPLY ASSUME IF WE BUILD IT THEY WILL COME. THANK YOU SO MUCH. >>THANK YOU. DR. DRABO. >>THANK YOU FOR HAVING ME HERE. I WANTED TO START BY SAYING THE SPEAKERS AND PANELISTS HAVE HIGHLIGHT THE PROFOUND DISPARITIES IN DEMENTIA CARE AND THERE'S GREATER OPPORTUNITY FOR LEVERAGING PROGRAMS IN CARE DELIVERY MODELS TO HELP IN THE HEALTH EQUITY OF PERSONS LIVING WITH DEMENTIA AND THEIR CARE PARTNERS AND FOR EFFECTIVE IMPLEMENTATION WILL NEED TO UNDERSTAND HOW THE PROGRAMS AND POLICIES ARE WORKING FOR DIFFERENT POPULATIONS IN ORDER TO TARGET THEM FOR THE SUB POPULATION. AND OFFERING TARGETED PROGRAMS IT WILL BENEFIT AND ALLOW US TO MAKE BETTER USE OF THE HEALTH CARE RESOURCES WE HAVE. AND FURTHERMORE BY DOING SO USING THE DATA HEALTH ORGANIZATIONS ARE REQUIRED AND DEMONSTRATE THE VIABILITY OF PROGRAMS AND JUSTIFY THEIR EXPANSION. AND MUCH INTERVENTION TO THE MOST APPROPRIATE AT RISK POPULATION WILL ALSO INVOLVE SCREENING AND DEVELOP RIGOROUS EFFECT AND THE EVIDENCE OUR PRESENTERS SHARED WITH US ANSWER IMPORTANT QUESTIONS AND RAISE NEW ONES. NOTABLY WHILE OFFERS TO INTEGRATE DEMENTIA CARE THE HIGH RATE OF THE ENROLLMENT AMONG PEOPLE WITH DEMENTIA AS HIGHLIGHTED BY DR. COE IS CAUSE OF CONCERN. AND WE'LL NEED TO UNDERSTAND HOW PLANS ARE ALIGN WITH CARE AND SUPPORT NEEDS WITH PERSONS LIVING WITH DEMENTIA AND CAREGIVERS AND LOOK AT TO WHICH ANY PLANS ARE OFFERED TO BLACK PERSONS ARE WORSE THAN OTHERS OFFERED TO OTHER POPULATIONS. THERE'S BEEN A HISTORY OF DISPARITY BY OFFERING INCENTIVE WHICH CERTAIN POPULATIONS. ARE SIMILAR MECHANISMS AT PLAY OR IS THERE RESTRICTIVE NETWORK? MORE RESEARCH IS NEEDED TO FULLY UNDERSTAND THE IMPLICATIONS OF MANAGE CARE AND EVOLVING POLICY CHANGES IN THE PROGRAM FOR PERSONS LIVING WITH DEMENTIA AND THEIR CAREGIVERS. IN LIGHT THE EVIDENCE DR. CHEN PROVIDED THERE'S OPPORTUNITY TO INTEGRATE TELEHEALTH TO IMPROVE ACCESS TO CARE BUT THE DIGITAL DIVIDE REMAINS A BARRIER. WITH THE INFRASTRUCTURE BILL SIGNED INTO LAW WE SHOULD INCLUDE $65 BILLION, THERE'S A UNIQUE OPPORTUNITY TO EXPAND ACCESS TO AMERICANS AND HELP CLOSE THE DIGITAL DIVIDE. CLOSING IT WILL NOT BE ENOUGH. WE NEED TO ADDRESS INTEROPERABILITY FOR SYSTEMS FOR HEALTH INFORMATION EXCHANGE BUT WE HAVE THE INCENTIVES IN PLACE. DO WE NEED MORE ASSERTIVE NATIONAL APPROACH TO ENSURE PROVIDERS AND PAYERS WILL MAKE THE NECESSARY INVESTMENTS. THANK YOU? >>THE FOR THE WONDERFUL PRESENTERS AND PANELISTS. WE'LL TRANSITION BACK TO OUR QUESTION AND ANSWER PORTION OF THE SESSION. NOW A QUESTION FOR DR. FA DR. FASHAW-WALTERS. WHAT ARE THE NEXT STEPS FOR INTERACTION BETWEEN PLACE AND POLICY? >>THAT'S A GREAT QUESTION. I HAVE DONE SOME OF THIS WORK IN THE GENERAL MEDICARE POPULATION. A PAPER THAT SHOULD BE OUT SOONER RATHER THAN LATER REALLY LOOKING AT THE ROLE OF PUBLIC REPORTING AND HOME HEALTH AND HOW THAT VARIES BY NEIGHBORHOOD TYPE. THAT'S AN EXAMPLE HOW IT COULD BE DONE. SOME OF THE FIRST STEPS AND WHAT DR. COE PRESENTED IS UNDERSTANDING WHAT POLICIES ARE AT PLAY AND TAKING THEM AND INTERACTING THEM BY PLACE. IT'S IMPORTANT TO TAKE NOTE OF HOW FEDERALISM WORKS AND THAT POLICIES WILL HAVE DIFFERENT IMPACTS AT DIFFERENT LEVELS NATIONALLY, STATEWIDE, LOCALLY AND REALLY JUST LOOKING AT THE INTERACTIONS I THINK IS IMPORTANT. >>THANK YOU. WE HAVE A QUESTION THAT'S COME IN FROM OUR AUDIENCE. IT STARTS OUT BY SAYING THAT SHEKINAH YOUR WORK HAS BEEN A POSITIVE INFLUENCE FOR THE INDIVIDUAL AND THIS IS A QUESTION FOR THE PRESENTERS AND PANELISTS AS WELL, WHAT ARE FOLKS THINKING IN TERMS OF AUGMENTING THE FOCUS ON ASSETS IN THE GAPS AND OPPORTUNITIES FROM THE SESSION THEME? >>I CAN START BY A QUICK OVERVIEW BY THE PREFERENCE. SOME OF MY WORK HAS THOUGHT ABOUT HOW WE MIGHT CHARACTERIZE HOME HEALTH AGENCIES OR NURSING HOMES OR OTHER PROVIDERS AS LOWER-QUALITY PROVIDERS WHEN WE SEE A HIGHER PROPORTION OF MARGINALIZED PATIENTS USING THAT PARTICULAR SERVICE. A NUMBER OF MY PROJECTS HAVE STARTED TO FOCUS IN ON THE SERVICES IN NURSING HOMES AND HOME HEALTH WHERE WE SEE THE OPPOSITE HAPPENING. SO THEY MIGHT HAVE A HIGH PROPORTION OF BLACK PATIENTS BUT THEY ARE ALSO HIGH QUALITY AND SO JUST THINKING ABOUT FOCUSSING ON DARE I SAY THE POSITIVE SIDE OF THIS NARRATIVE AS WELL. >>THANK YOU, DO OTHERS HAVE THOUGHTS? IF NOT WE CAN MOVE ON TO THE NEXT QUESTION. >>I WANT TO ADD THAT IT REQUIRES A WHOLE VILLAGE TO WORK TOGETHER ESPECIALLY FOR A PATIENT WITH DEMENTIA AND PEOPLE WITH DIFFERENT BACKGROUND AND LANGUAGE. THE POLICY MAKERS NEED TO MOTIVATE ALL THE STAKEHOLDERS TO WORK TOGETHER TOWARDS THAT DIRECTION AS WELL AS THE COMMUNITIES AND HEALTH CARE PROVIDERS AND CAREGIVERS, EVERYONE TOGETHER UNITED. THAT'S WHAT I WANT TO ADD. >>WE HAVE ANOTHER QUESTION FROM AN ATTENDEE. WITH THE PUBLIC AND THIS IS PROBABLY DIRECTED TO A FEW OF OUR PRESENTERS. WITH THE PUBLIC HEALTH CARE PANDEMIC ENDING THE MIDNIGHT RULE FOR CONTROVERSY TO POST ACUTE CARE IS COMING BACK. DO WE KNOW WHAT AFFECT THIS POLICY CHANGE WILL HAVE ON PATIENTS ONE ADRD OR PESHZ LIVING WITH DEMENTIA AND CESSATION OF PAYMENT FOR TELEHEALTH AND AUDIO POLICIES MAY CONTRIBUTE TO THE DISPARITIES SINCE RURAL AND MINORITIZED COMMUNITIES FACE VIDEO-BASED MODALITIES. >>THERE WAS A WORKING PAPER PRESENTED LAST WEEK ABOUT THE AFFECT OF ESSENTIALLY NOT USING NURSING HOMES FOR POST ACUTE CARE DURING THE PANDEMIC. IT WASN'T SPECIFICALLY AMONG ADRD PATIENTS BUT ABOUT THE SWITCH. AND THEY DID FIND WHITE INDIVIDUALS HAD A HIGHER PROBABILITY OF GOING HOME FROM THE SWITCH FROM POST ACUTE CARE. AS WE THINK OF WHAT'S GOING ON NOW WITH THE END OF THE OFFICIAL PANDEMIC PERIOD IS WHO IS GOING TO INSTITUTIONALIZE CARE AND WHO WILL BE GOING HOME BECAUSE THERE'S RACIAL DIFFERENCES IN WHERE PEOPLE ARE GOING AND HOW PEOPLE RESPONDED TO THE PANDEMIC ITSELF IN THAT DECISION. SO I DON'T THINK WE HAVE A PERFECT ANSWER AS TO HOW IT'S GOING TO IMPACT PEOPLE WITH DEMENTIA SPECIFICALLY BUT THERE DEFINITELY ARE DISPARITIES IN WHO IS ABLE TO GO HOME AND WHO WILL STILL BE USING TRADITIONAL NURSING HOME SETTINGS FOR POST-ACUTE CARE. >>THANK YOU. AND THEN I WONDER GIA OR TINA YOU IF HAVE ANY FEEDBACK ON THE COMMENT ABOUT TELEHEALTH AND RURAL COMMUNITIES AND THE GROUPS LACKING VIDEO-BASED TELEMODALITIES. -- I SHOWED IN MY SLIDES IT CAN BE THE RESULT OF ADRD PATIENTS INCLUDING THE CAREGIVERS OF THE PATIENTS WHO ARE AFRICAN AMERICAN OR HISPANICS IN GENERAL. ALL REPORTED SATISFACTION OF USING IT IN PIPPEN -- OPINION IT'S THE PATIENTS NOT IN THE STUDY WE NEED TO LOOK AT MORE AND MORE EMPIRICAL EVIDENCE IS NEED TO LOOK AT THE IMPACT OF HEALTH DISPARITIES WHICH EVIDENCE HAS BEEN INCONCLUSIVE. AND CAN EVEN EXACERBATE THE DISPARITIES. AND THERE'S POLICY THAT'S SUPPORTIVE IF WE CAN DO MORE AND ADVOCATE MORE. IT'S THE RIGHT MOMENT TO ADDRESS AND REDUCE THE DISPARITIES. >>I WOULD ADD IF I MAY I THINK CONCEPTUALLY THE TECHNOLOGY POLICIES HELP MEET PEOPLE WHERE THEY ARE WHICH IS CRITICAL HOWEVER, TO DR. CHEN'S POINT INTO THE PERSON WHO OPPOSED THE QUESTION WHICH IS AN EXCELLENT ONE IF YOU DON'T HAVE HIGH SPEED BROADBAND AND CAN'T TAKE A VIDEO CALL WE'RE JUST EXACERBATING DISPARITIES AND THE COMPONENT OF VOICE ONLY IS CRITICAL AND IT'S IMPORTANT IN THE CAUTIONARY TALE TO THOSE OF US BEING CHALLENGED TO COME UP WITH INNOVATIONS AND DO THIS IN A WAY THAT MAKES IT ACCESSIBLE TO THE POPULATIONS WHO NEED IT MOST AND PERHAPS INVOLVING LEVERAGING THE COMMUNITY-BASED ORGANIZATIONS TO HELP THE INDIVIDUALS AND HELP ACCESS AND REACH THEM AND MAKE SURE THEY HAVE THE TOOLS NECESSARY TO BENEFIT FROM THEM. >>THANK YOU FOR YOUR RESPONSES. WE HAVE A QUESTION FROM THE AUDIENCE FROM MICHAEL ELLENBOGGEN. CAN YOU TAKE THEM OFF MUTE TO ASK THEIR QUESTION. GO AHEAD. >>WERE YOU ABLE TO HEAR ME UNTIL NOW? >>WE DID NOT IF YOU WOULDN'T MIND STARTING OVER. >>MY NAME IS MICHAEL EL ENBOGGEN AND I'M LIVING WITH DEMENTIA. I HAVE TO TELL YOU YOU'RE ALL TALKING ABOUT IS GREAT AND IT'S VERY IMPORTANT BUT ONE OF THE PROBLEMS WE HAVE IS AS YOU KNOW THE MEDICAL SYSTEM IS VERY COMPLICATED. NOT ONLY IS IT COMPLICATED IT'S A REAL MESS SADLY TO SAY. MY WIFE, WHO HAPPENS TO BE A MEDICAL PERSON FOR 35 YEARS HAS TRIED TO MANAGE MY PART OF THE DIAGNOSIS AND TO GET HELP STRUGGLES TO GET THAT AND SHE UNDERSTANDS HOW IT ALL WORKS. SO WHAT I THINK IS CRITICAL TO ALL THE PEOPLE ESPECIALLY TO STOP DISCRIMINATION AND DISPARITIES IS WE NEED HEALTH NAVIGATORS THAT ARE PAID BY THE GOVERNMENT THAT CAN WALK PEOPLE THROUGH THE WHOLE PROCESS FROM THE BEGINNING TO THE END OF WHAT'S NEEDED. YOU HAVE MANY PEOPLE OUT THERE WHO ARE LIVING ALONE WITH THIS DISEASE AND SURE YOU CAN CALL THEM UP AND TELL THEM DO THIS AND DO THAT, DO YOU THINK THEY'LL BE ABLE TO REMEMBER WHEN THEY HAVE DEMENTIA? ABSOLUTELY NOT. WE HAVE TO FIGURE OUT GETTING A PERSON FROM POINT A TO POINT B AND THEN THE NEXT LEVEL. WE NEED TO BE ABLE TO WALK THE PEOPLE THROUGH THE SYSTEM BECAUSE THE SYSTEM IS TOO COMPLICATED AND PEOPLE DON'T KNOW WHERE TO TURN FOR WHAT TYPE OF DOCTOR AND EVERYTHING. I TALKED TO PEOPLE WITH DEMENTIA EVERY DAY AND PEOPLE ARE AT A LOSS. THE CAREGIVERS ARE AT A LOSS AND WE NEED YOUR HELP. >>THANK YOU, MICHAEL FOR YOUR COMMENTS. I'LL NOTE THERE WERE SEVERAL REACTIONS THUMBS-UPS AND HEARTS AND CLAPS FROM THE AUDIENCE. I THINK YOUR COMMENT VERY MUCH RESONATES WITH EVERYONE ATTENDING. >>PERHAPS WE CAN TAKE ANOTHER QUESTION REGARDING VIRTUAL SUPPORT AUDIENCE CAN YOU TALK ABOUT WHETHER THERE'S RELUCTANCE FOR BIPOC POPULATIONS AND OTHERS TO GO BACK TO THOSE SETTINGS VERSUS WHITE POPULATIONS. PERHAPS SHEKINAH CAN START US OFF OR GIA AS WELL. >>IT'S AN EXCELLENT QUESTION. FIRST THE EVIDENCE FOR DIFFERENT ETHNIC GROUPS AND ASIANS AND OTHERS WERE LITTLE VERY FEW EVIDENCE. SECOND, AMONG THE EVIDENCE WE OBSERVED WE FIND THE CAREGIVERS OF THE ADRD PATIENT FOR HISPANIC REPORTED THE LANGUAGE BARRIERS AND CAREGIVERS REPORTED THE SOCIAL ISOLATION AND IN THE SUPPORT. I DON'T HAVE EMPIRICAL EVIDENCE TO SUPPORT THE NEEDS FROM OTHERS AND GENERALLY SPEAKING THERE'S EVIDENCE AND AMONG THOSE WHO ACTUALLY USE THE TELEHEALTH AND PEOPLE REPORT GOOD FEEDBACK INCLUDING CAREGIVER SUPPORT FROM DIFFERENT RACE AND ETHNICITIES BUT BARRIERS WERE INDICATED FOR DEMENTIA CARE WE NEED TO LOOK AT THE ABILITY TO ATTEND TO KNOWLEDGE AND THE EDUCATION AND RESOURCES SHOULD BE GIVEN TO CAREGIVERS. MORE EVIDENCE IS NEEDED FOR PEOPLE WITH DIFFERENT CULTURAL BACKGROUND AND YES >>THERE'S GREATER RELUCTANCE BECAUSE OF COVID AND TELEHEALTH MAY BE THE PREFERRED OPTION AND SHOULD STILL BE AVAILABLE. DO YOU HAVE A SENSE WHETHER THERE'S HESITANCY TO GO BACK IN PERSON. >>I DON'T HAVE KNOWLEDGE TO ANSWER THAT QUESTION. I THINK MOST BUT TELEHEALTH IS HELPFUL. THAT'S MY SENSE. TINA YOU HAVE SOMETHING TO SAY. >>I SPEAK FROM THE PERSPECTIVE OF ADULT DAY SERVICES WHICH SERVES A DIVERSE POPULATION AND IN IN THE EARLY QUALITATIVE RESEARCH THERE'S OVERWHELMING ENTHUSIASM TO RETURN TO IN-PERSON AS FAR ASS NOT ONLY WITH THE PERSONS WITH DEMENTIA AND OTHER CHRONIC CONDITIONS BUT BY CAREGIVERS BECAUSE THESE COMMUNITY RESOURCES AND IN-PERSON SERVICES COULD NOT BE REPLACED BUT THERE WAS EVIDENCE TO SUPPORT THEY APPRECIATED THE ADDED VIRTUAL COMMUNICATIONS AND CONNECTIONS AND COLLABORATION REMOTE SERVICES ENABLE. I FEEL IT'S A STRONG COMBINATION OF BOTH BUT THERE'S SIGNIFICANT VALUE TO IN-PERSON ENGAGEMENT IN DIVERSE POPULATIONS. >>THANK YOU BOTH. I WANT TO POSE THE QUESTION FROM AN ATTENDEE AND LIFT UP MICHAEL'S COMMENTS ABOUT CARE PARTNERS AND CARE COORDINATION. THIS QUESTION SAYS THE PANEL DIDN'T SPEAK DIRECTLY TO THE CARE PARTNER ROLE IN HOW THEY ARE OR ARE NOT SUPPORTED IN DIVERSE SETTINGS AND HAS THAT BEEN STUDIED AND COULD IT BE UNRECOGNIZED IN WHO GOES HOME AND WHO DOESN'T. IF YOU HAVE INSIGHT I INVITE YOU TO COME ON. >>DOES YOUR WORK COVER CAREGIVERS? >>AND THE NEED FOR CAREGIVERS TO NAVIGATE THE SYSTEMS. WE EXPECT SO MUCH AND THERE'S BEEN A PLETHORA OF RESEARCH TO SHOW WE EXPECT SO MUCH FROM CAREGIVERS. THEY'RE DOING COMPLEX TASKS AND NAVIGATING A HIGHLY BUREAUCRATIC SYSTEM AND WITH LIMITED LANGUAGE AND HEALTH CARE DELIVERY KNOWLEDGE AND TO THE FOLLOW-UP ABOUT THE PERSON WHO ASKED ABOUT POST PANDEMIC, I DO THINK THE NEED TO SUPPORT CAREGIVERS HAS NEVER BEEN CLEARER. THE BURDEN ON THEM HAS NEVER BEEN GREATER AND I THINK THERE'S POTENTIAL FOR ALL OF US TO REFRAME DEMENTIA CARE GIVING AND SELFLESS AND WONDERFUL WE CAN'T DO THAT WITHOUT THE RESOURCES AND AND IT CAN AFFECT OUR CAREGIVERS. >>I'LL HIGHLIGHT TINA'S COMMENTS TO RECOGNIZE THE IMPORTANCE OF CAREGIVERS AND UNDERSTAND CULTURE AND EVERYTHING THAT MAKES US WHO WE ARE CONTRIBUTES TO HOW WE VIEW CARE GIVING AND THE WAY WE GIVE CARE TO OLDER FAMILY MEMBERS AND THERE NEEDS TO BE BETTER SUPPORTS FOCUSSED ON CAREGIVERS. WE'RE AT TIME. I DO WANT TO JUST THANK EVERYONE FOR ATTENDING AND THEIR PARTICIPATION. VERY THOUGHTFUL PRESENTATIONS AS WELL AS QUESTIONS AND I TURN THE SESSION BACK OVER TO OUR SUMMIT CHAIR. >>WONDERFUL. THANK YOU SO MUCH. THANK YOU EVERYONE FOR THESE EXCELLENT REMARKS. QUESTIONS FROM THE AUDIENCE AND TREMENDOUS DISCUSSION ALL AROUND. WE'RE NOW GOING TO HAVE A BRIEF 10-MINUTE BREAK. WE CAN ALL STRETCH IF WE NEED TO. WE'LL RECONVENE AT 2:15 EASTERN STANDARD TIME FOR OUR LAST SCIENTIFIC SESSION OF DAY TWO. SEE YOU ALL SHORTLY. >>SESSION IS CO-CHAIRED BY KEN HEPBURN AND LIZ NECKA. >>LET ME MAKE SOME FRAMING COMMENTS. THE SESSION IS FOCUSSED ON FAMILY CAREGIVERS AND OF PERSONS LIVING WITH DEMENTIA ILLNESSES. WE KNOW THERE ARE OVER 11 MILLION CAREGIVERS OF PERSONS LIVING WITH DEMENTIA AND PROVIDE ENORMOUS VALUE IN THE HELP THEY GIVE IN GUIDING PEOPLE THROUGH DAYS THAT ARE SAFE AND AS CALM AS POSSIBLE. WE GIVE MONETARY VALUE TO THAT WORK ALMOST $300 BILLION. THE REAL VALUE IS INCALCULABLE. NOT ONLY DO THEY PROVIDE DAY TO DAYCARE THEY ORGANIZE CARE. THEY'RE THE CENTRAL SOURCE OF CARE FOR PEOPLE LIVING WITH DEMENTIA AND PROVIDE THAT SOURCE OF CARE OVER EXTENDED PERIOD OF TIME. THEY CREATE SYSTEMS WHERE THERE ARE NO SYSTEMS. WE HEARD ABOUT THE MODEL CARE SYSTEMS GIVES GREAT HOPE FOR THE POSSIBILITY OF COORDINATED CARE WHO RIGHT NOW WE HAVE FAMILY CAREGIVERS WHO COORDINATE CARE AND DO IT IDIOS SS SS SSIN -- IDIOSYNCRATICALLY AND VERY FEW REPORT GETTING ANY KIND OF TRAINING TO DO WHAT THEY NEED. THIS COULD VARY FROM GETTING A PAMPHLET WHICH IS WHAT WE'RE TOLD YESTERDAY IS ONE KIND OF EDUCATION PROVIDED TO GOING THROUGH PSYCHO EDUCATIONAL PROGRAMS OR BEING INVOLVED IN A SUITE OF PROGRAMS. ONLY 30% GET SUPPORTIVE SERVICES. THEY'RE OUT ON AN ISLAND DOING ALL THE WORK AND ORGANIZING ALL THE CARE. WHAT WE KNOW ABOUT AND ACKNOWLEDGE ABOUT CAREGIVERS ARE GOING TO GROW BECAUSE THE NUMBERS OF PERSONS IN NEED GROW OVER THE NEXT 30, 40 YEARS. THIS IS THE CENTRAL POINT OF THE SESSION AND CONFERENCE AS A WHOLE. CAREGIVERS ARE INCREASINGLY HETEROGENOUSLY ADVANTAGED OR DISADVANTAGED. I WANT TO DWELL FOR A SECOND ON THIS. WE HAD WONDERFUL EXAMPLES OF CAREGIVERS AND CARE PARTNERS PROVIDING LOVING AND THOUGHTFUL CARE AND FEELING REWARDED IN THAT CARE. I THINK WE HAVE REASON TO THINK ABOUT THEM IN THESE TERMS AND REWARDED FOR THEIR WORK. WE'VE BEEN TOLD AND IMPORTANTLY HOW MUCH DISPARITY THERE SIN TERMS OF CAREGIVER SUPPORT. THERE'S OTHER INTERSECTIONS WE SHOULD THINK ABOUT. I'M AWARE OF A COUPLE DISSERTATIONS GOING ON. ONE IN WHICH CHILDREN WHO ARE TAKING CARE OF PARENTS WHO ARE ABUSIVE DURING THEIR CHILDHOOD AND THE OTHER LOOKING AT ADOLESCENT CHILDREN OF EARLY ON SET PERSONS LIVING WITH DEMENTIA AND WHAT'S HAPPENING TO THEM. AND DEAL WITH ADULTS WHO HAD REJECTION. SO NOT ALL CARE GIVING IS REWARDED AND COMFORTABLE. THERE'S LOOK AT WHAT A NIMBLE SENSE OF WHAT CARE GIVING IS. CAREGIVERS ARE NOT NECESSARILY WELL AND CAREGIVERS INTERACT AND WE HEARD -- ARE THEY ACCORDED A ROLE OR GIVEN RESPONSIBILITIES. DO THEY EXIST IN TERMS OF THOSE AND IN THE ORGANIZATIONS EVEN IDENTIFY THEM. WE'LL HAVE LIZ SHED LIGHT ON THIS. >>I'LL TURN IT OVER TO OUR PRESENTERS AND DR. ROBERTO AND DR. GAUGLER AND DR. VAN HOUTVEN AND LOOKING TOWARDS INTERVENTIONS AND BROADER IMPLEMENTATION CONSIDERATIONS AND FINISHING THINKING ABOUT POLICY AND SYSTEMS. WE'LL HAVE RITA CHOULA AND JASON RESENDEZ AND CASSANDRA THOMAS TO SHOWED MORE LIGHT ON THIS. >>I'M KAREN ROBERTO FROM VIRGINIA TECH AND HERE TO SPEAK TO YOU ABOUT THE IMPORTANCE OF CONTEXT FOR UNDERSTANDING THIS AND THERE'S FACTORS THAT LEAD TO OUTCOMES ACROSS THE LIFE SPAN. SPECIFICALLY THEY REFER TO EDUCATION ACCESS AND QUALITY, HEALTH CARE EQUALITY, NEIGHBORHOOD AND BUILT ENVIRONMENTS, SOCIAL AND COMMUNITY CONTEXT AND ECONOMIC STABILITY. STRUCTURAL AND SOCIAL VARIABLES SUCH AS RACE, ETHNICITY, GENDER AND CULTURE BOTH TRANSCEND AND INFLUENCE THE SOCIAL DETERMINATES OF HEALTH. I'LL TALK ABOUT LOCATION, FAMILY STRUCTURE AND COMMUNITY CULTURES INFLUENCING UNPAID DEMENTIA CARRIL STRAIGHTING THE IMPORTANCE OF CONTEXT PLUS CULTURE. THE REALITIES MAKE IT EXTREMELY DIFFICULT TO SETTLE ON A SINGLE SET OF CHARACTERISTICS THAT ENCAPSULATE COMMUNITIES AND THE FEDERAL DEFINITIONS OF RURAL THE METROPOLITAN DEFINITION OFFER DIFFERENT CONCLUSIONS ABOUT THE DEMOGRAPHICS OF THE POPULATION. THE SOCIAL LANDSCAPES AND THE ECONOMIC STATE OF RURAL AMERICA. THE CENSUS MEASURES ACROSS CITIES AND SUBURBS. SO WHY DO DEFINITIONS MATTER? WE KNOW CARE GIVING IN RURAL AREAS OCCURS ACROSS ALL GROUPS AND INCOME AND EDUCATION LEVELS, FAMILY TYPES AND GENDER TYPE AND SEXUAL ORIENTATION YET RURAL COMMUNITIES ARE CHARACTERIZED DIFFERENTLY DEPENDING ON THE DEFINITION USED. FOR EXAMPLE, USUALLY WE SEE LITTLE RACE DIVERSITY AMONG OLDER FAMILIES IN RURAL AREAS WHEREAS WHEN USING THE NON-METRO DEFINITION WE FIND WITHIN PLACE VARIATIONS WITH DIVERSITY FOR THE SMALLER TOWN AREAS BEING 50% HIGHER THAN THOSE OF METRO AND OPEN-LAND AREAS. COMPARED TO THE URBAN COUNTERPARTS, RURAL INFORMAL CAREGIVERS REPORT HAVING NO CHOICE BUT TAKING ON CARE RESPONSIBILITIES. HAVING GREATER DIFFICULTIES FINDING AFFORDABLE SERVICES AND HAVING FEW IF ANY CONVERSATIONS WITH PROFESSIONAL CARE PROVIDERS ABOUT THEIR OWN HEALTH NEEDS. IT'S UNCLEAR FROM THE RESEARCH WHETHER RURAL FAMILY CAREGIVERS ASSUME CARE RESPONSE ACTS BECAUSE OF CHOICE, ENGRAINED OR FAMILY NORMS AND VALUES, STRONG INFORMAL NETWORKS THAT SUPPORT THEM AND THEIR CARE GIVING ROLES. INADEQUATE SERVICES AND FAITH-BASED CULTURAL RELUCTANCE AND HELP FROM ORGANIZATIONS OR LIKELY A COMBINATION OF THESE AND OTHER INFLUENCES. UNDERSTANDING DIFFERENCES IS IMPORTANT FOR POLICY MAKERS AND SERVICE PROVIDERS WHO ARE SEEKING TO RECRUIT HOW THEY SERVE RURAL FAMILIES PROVIDING DEMENTIA CARE. GREATER RECOGNITION HAS BEEN TO STRUCTURES THAT DIVERGE FROM WHO CONSTITUTES CAREGIVERS AND PATTERNS OF CARE. A HOST OF COMPLEX TRENDS AND SERIAL MARRIAGES, UBIQUITY WOMEN IN THE LABOR FORCE AND THE GROWING ETHNIC POPULATION AND SEXUAL MINORITY POPULATIONS HAVE ADDED COMPLEXITY TO AMERICAN LIFE. THE PRESENT CHALLENGE AND LOOKING AT THOSE WHO DO A YAOMAN'S JOB AND LOOK AT THE NEEDS OF EXTENDED CAREGIVERS, GRANDCHILDREN, NIECES AND NEPHEWS AND STEP KIN WHO ASSUME THE ROLE OF DEMENTIA CAREGIVER. WITH FEW EXCEPTIONS MOST STUDIES REGARDLESS OF SAMPLE SIZE OR DESIGN INCLUDE A RELATIVELY SMALL NUMBER OF EXTENDED FAMILY CAREGIVERS. THEY REPORT PARTICIPATING IN FEWER EVENTS AND SOME REPORT DEPRESSIVE SYMPTOMS OTHER EXTENDED FAMILY CAREGIVERS AND A SMALL PERCENTAGE OF FAMILY MEMBERS USE SUPPORTIVE SERVICES. IN COMPARISON OUR QUALITATIVE RESEARCH ON RURAL DEMENTIA CAREGIVERS IN VIRGINIA FOUND THAT EXTENDED FAMILY MEMBERS REPORTED SMALL CARE GIVING NETWORKS, UNSPOKEN EXPECTATIONS WITHIN THEIR FAMILY THEY WOULD BE THE CAREGIVER. HEALTH PROBLEMS AND EXHAUSTION AND LACK OF PERSONAL TIME ASSOCIATED WITH CAREGIVER AND NOT ATTENDING SPORT GROUPS OR INFORMATION. THESE ILLUMINATE THE EXPERIENCE AND UNDER SCORE THE NEED FOR STUDY OF THEIR SITUATIONS AND CHALLENGE TO INFORM POLICIES AND GUIDE SERVICES AND INTERVENTIONS. THE RESEARCH LITERATURE CONFIRMS BELIEFS ABOUT SERVICE USE ABOUT IN FORMAL AFAMILY CAREGIVERS AND IN RURAL AREAS IN PARTICULAR. SUPPORT SERVICE IS LOW AND GAPS IN SERVICE PROVISION AND AVAILABLE SERVICES DO NOT ALWAYS MEET FAMILY NEEDS. NEXT IDIOCRASS IS -- IDIOSYNCRASIES SHOW THEY DON'T WANT OUTSIDERS TO GIVE CARE OR RELATIVES REFUSE CARE FROM OUTSIDE PROVIDERS. THEY OFTEN DON'T KNOW HOW TO NAVIGATE SERVICES. FORMAL SERVICES IN GEOGRAPHICALLY ISOLATED COMMUNITIES OFTEN ARE TOO FAR FROM CAREGIVERS' HOMES OR NOT AVAILABLE AT THE RIGHT TIME OF DAY AND VARYING ELIGIBILITY REQUIREMENTS AND LOWER RATIOS OF PROFESSIONALS IN OTHER AREAS CAN INFLUENCE THE QUANTITY AND QUALITY OF SUPPORT AND THEY FACE THE TRIPLE JEOPARDY OF BEING PART OF VULNERABLE FAMILIES IN UNDER SERVED PLACES AND HOLDING CULTURAL BELIEFS TO NEG GAIT THE USING OF FORMAL SERVICES. MANY RURAL CAREGIVERS HAVE LIMITED ACCESS TO HEALTH CARE AND FACE NUMEROUS CARE RELATED CHALLENGES INCLUDING A DEARTH OF WORKERS AND IN FORMAL SERVICES. HOWEVER, WE NEED TO SITUATION CAREGIVERS WITHIN BROADER FAMILY AND COMMUNITY CONTEXT. STUDIES OFTEN CAPTURE INFLUENCES ON INFORMAL AND ON INDIVIDUALS AND FAMILIES BUT OVERLOOK THE ACTUAL CAPACITY OF COMMUNITIES TO SUPPORT THE EFFORTS OF UNPAID CAREGIVERS. THOUGH THE ALLOCATIONS OF CAREGIVER RESOURCES MOSTLY DETERMINE FEDERAL AND STATE LEAVES, COUNTY BUDGETS ARE MORE LIKELY TO INFLUENCE ALLOCATION OF LOCAL SERVICES SUCH AS TRANSPORTATION AND MEAL PROGRAMS AND THEREFORE HAVE A MORE IMMEDIATE AND DIRECT INFLUENCE ON SOURCES OF SUPPORT AVAILABLE TO CAREGIVERS. NEXT, IN CONCLUSION, INFORMAL DEMENTIA CARE REFLECTS CONTEMPORARY, SOCIAL AND POLITICAL REALITIES. WHEN A STUDY IN PLACE-BASED DIFFERENCES IN DEMENTIA CARE BE THEY RURAL, URBAN OR SOMEWHERE IN BETWEEN IS CRITICAL TO UNDERSTAND PLACES ARE DYNAMIC RESULTING IN A SHIFT IN THE URBAN RURAL TAXONOMIES. INCLUDING DIVERSE FAMILY STRUCTURES IN OUR RESEARCH PROVIDES INSIGHT IN THE COMPLEX MEANING OF FAMILY DEMENTIA CARE AND POINTS TO THE LIMITS OF VIEWING CAREGIVERS AS A MONOLITHIC GROUP. GREATER INTENTIONALITY AND SPECIFICITY IS NEEDED IN CULTURE AND HOW FAMILIES RELY ON INFORMAL SERVICES AND USE FORMAL SERVICES TO SUPPORT THEIR CARE GIVING EFFORTS AND THERE'S INTERVENTIONS AND SERVICE DELIVERY MODELS THAT CAN BE REPLICATED, SUCH PROGRAMS MAY NEED TO BE TAILORED TO THE DISTINCTIVE FEATURES OF PLACES AND COMMUNITIES FOR DEMENTIA CAREGIVERS AND RELATIVES RESIDE. THANK YOU VERY MUCH. >>HELLO, EVERYBODY. THANK YOU SO MUCH FOR HAVING ME I'M JOE GAUGLER FROM THE UNIVERSITY OF MINNESOTA. IT'S AN HONOR TO PRESENT WITH DR. ROBERTO AND NECKA AND PEOPLE WHOSE WORK I'VE ADMIRED MANY YEAR. TODAY I'LL TALK ABOUT SOONER THAN BETTER. HOW DO WE IDENTIFY CAREGIVERS AT THE EARLY STAGE TO FACILITATE IMPLEMENTATION? MANY CONTRIBUTED TO TO THE HEALTH CARE SYSTEM SUCH AS THE ELECTRONIC HEALTH RECORDS AND WHILE THAT'S CLEARLY IMPORTANT TO TARGET CAN HELP US HOW WE CAN SUSTAIN INNOVATIONS. WITH THAT IN MIND, WHAT DOES IMPLEMENTATION SCIENCE GIVE US THAT CAN HELP US BETTER DESIGN INTERVENTIONS AT THE EARLIEST STAGES OF THE NIH STAGE MODEL, FOR EXAMPLE STAGES 1 AND 2? IL ELEVATES THE NEED TO DEFINE MECHANISMS OF AN INTERVENTION. I THINK MANY OF US WOULD AR GREW IF WE DON'T UNDERSTAND WHY AND HOW AN INTERVENTION WORKS IT IMPEDES OUR ABILITY TO IMPLEMENT INTERVENTIONS IN LATER STAGES. NEXT, IT GIVES US A SERIES OF MEASURES TO CONSIDER EVEN IN THE EARLIER STAGES OF INTERVENTION DEVELOPMENT. IT GIVES A FRAME WORK TO LOOK AT SUCCESSFUL IMPLEMENTATION EVEN AT THE EARLIEST STAGES TO INFORM HOW WE SCALE AN INTERVENTION AND HOW WE ADAPT AND WHAT IMPLEMENTATION SCIENCES GIVES US ARE STRONG FRAME WORKS AND IMPLEMENTATION SCIENCE HAS BEEN AT THE FOREFRONT OF ADVANCE IIN METHODOLOGIES TO LOOK AT EFFECTIVENESS CONSIDERATION. FOR EXAMPLE THE NEED TO INCORPORATE MULTI-LEVEL STAKEHOLDER ENGAGEMENT AT ALL STEPS AND UTILIZING MIXED METHODS. I'M AN ADVOCATE BUT HOW TO EFFECTIVELY INTEGRATE QUALITATIVE AND QUANTITATIVE DATA COLLECTION STRANDS TO GIVE A STRONGER INFERENCE TO THE LATER STAGES AND HYBRID TESTING TO GIVE METHODOLOGIES TO COLLECT IMPLEMENTATION DATA AND EFFECTIVE EFFECTIVENESS AND THE OPTIMIZATION STRATEGY AND I'M INCLUDING THE REFERENCE OF A WONDERFUL TEXTBOOK. THERE'S TOOLS WE CAN APPLY AT THE EARLIEST STAGES OF IMPLEMENTATION TESTING. I WANTED TO SHOW THIS STUDY HOME ALONE AGE NIH STAGE 1 INTERVENTION FOR THOSE WHO LIVE ALONE AND HAVE COGNITIVE IMPAIRMENT. IT'S ESSENTIAL LY DESIGN TO PREPARE FOR PILOT TESTING. WE WERE DELIBERATE IN COLLECTION OF IMPLEMENTATION DATA ALONGSIDE MORE STANDARD FEASIBILITY TESTING PROCESSES FOR EXAMPLE. WE'RE GOING TO IDENTIFY TREATMENT COMPONENTS AND EXAMINE THE USEFULNESS AND DETERMINE WHETHER THE INTERVENTION ELEMENTS OF HOME ALONE AS ORIGINALLY CONCEIVED REQUIRE ADAPTATION AND USE THE FRAMEWORK TAKEN FROM IMPLEMENTATION SCIENCE TO GUIDE THAT ADAPTATION WORK PRIOR TO OUR PHASE 2 PILOT TEST. AND AS I ALLUDED TO EARLIER WE'RE UTILIZING WHAT'S CALLED A CONVERGENCE PARALLEL MIXED METHODS DESIGN FOR QUALITATIVE DESCRIPTIVE INFORMATION. THE FORMER USED TO UNDERSTAND IMPLEMENTATION CONSIDERATIONS AND ASPECTS OF THIS PARTICULAR INTERVENTION. THEN YOU SEE HERE THE PHASE 2 ASPECT OF THE STAGE 1 INTERVENTION. WE'LL PILOT TEST HOME ALONE. ONE OF OUR MAIN AIMS IS TO DETERMINE THE IMPLEMENTATION POTENTIAL OF HOME ALONE. DETERMINE WHETHER HOME ALONE IS CARRIED OUT AS INTENDED. STANDARD FIDELITY EVALUATION AND IS IT DEEMED FEASIBLE AND ACCEPTABLE AND APPROPRIATE BY THE PEOPLE DELIVERING THE INTERVENTION TO AS WELL AS THE INTERVENTIONS. AND THE REASON WHY THIS IS IMPORTANT IS IT WILL GIVE US KEY INFORMATION FOR WHEN WE THINK DOWN THE LINE NOT JUST DOING THE BIG RANDOMIZED CONTROL TRIAL IN HOPEFULLY A SUBMITTED RO1 PROPOSAL AND ALSO ARE WE GETTING GOOD INFORMATION TO SUGGEST THIS IS AN INTERVENTION THAT NOT ONLY IS GOING TO BE EFFICACIOUS BUT LIKELY WILL BE PICKED UP AND ADOPTED AND USED IN THE COMMUNITY WHICH IN THE END I THINK IS ALL OF OUR GOALS. I'VE ALWAYS HEARD IMPLEMENTATION SCIENCE AS AN ETHICAL ENDEAVOR. AND WE HEARD DURING THE SUMMIT AND I'M SURE YOU'RE AWARE THE IMPLEMENT IMPLEMENTATION -- RESEARCH TO IMPLEMENTATION IS LEAKY AND LOOK AT POSSIBLE WAYS. WE'LL BE USING A MIXED METHODS DESIGN AND EXPLANATORY MIXED METHODS DESIGN WHERE THE QUALITATIVE DATA WILL HELP UNDERSTAND THE INTERVENTIONS AND MECHANISM OF BENEFIT MORE SO THAN IN WE RELIED ON QUANTITATIVE DATA. YOU SAW THIS AS A KEY POINT I BROUGHT UP EARLIER AND OTHERS HAVE AS WELL AND IN SOME OF OUR INTERVENTION STUDIES AND A MORE STANDARD AIM IS DETERMINED WHETHER KEY EMPIRICAL OUTCOMES CHANGE OVER THE SIX MONTH PERIOD TO INFORM SUBSEQUENT TESTING. I WANTED TO LEAVE YOU WITH THE CONCEPTUAL MODEL AT THIS POINT. THIS IS IMPORTANT NOT JUST BECAUSE IT HELPS INFORM OUR ANALYSES OF EFFICACY AND EFFECTIVENESS BUT WILL HELP US LEARN AND UNDERSTAND ARE THESE THE ACTUAL MECHANISMS LEADING TO THE OUTCOMES WE ANTICIPATE AND IF NOT WHAT DOES LEAD TO POSITIVE OUTCOMES IN THIS PARTICULAR INTERVENTION AND MORE IMPORTANTLY HOLDING ON TO THE CORE MECHANISMS AS CENTRAL TO FUTURE TESTING NOT JUST EFFICACY BUT HOPEFULLY DOWN THE LINE AND EFFECTIVENESS EVALUATION IF NOT DISSEMINATION AND IMPLEMENTATION. AND AGAIN WHY THIS IS SO IMPORTANT? MANY IMPLEMENTATION SCIENTISTS BELIEVE ADAPTATION IS UNAVOIDABLE. IN ORDER TO FIT IT TO CONTEXT AND PLACE AND PEOPLE ADAPTATION IS NEEDED. IF YOU'RE GOING TO BE DOING ADAPTATION THE RIGHT WAY YOU WANT TO MAKE SURE YOU'RE CHANGING THE MODE, DELIVERY INTERVENTION AND THE BENEFITS ARE MAINTAINED AND CONCEPTUALIZATION IS IMPORTANT TO LEAD TO APPROPRIATE IMPLEMENTATION. I ENCOURAGE YOU ALL TO CONNECT WITH US ON TWITTER, OUR CENTER FOR HEALTHY AGING AND INNOVATION. FEEL FREE TO CALL AND E-MAIL ME AT ANY TIME. I LOVE TO TALK ABOUT THIS AND MAYBE WE'LL HAVE TIME TO DO SO IN THE PANEL AND IF YOU GO THE TO THE NEXT SLIDE AND ACCESS THE SLIDES I TRIED TO COMPILE WHAT I FELT WERE THE KEY RESOURCE TO HELP GUIDE NOT MY THINKING BUT I HOPE YOURS AS WELL. THANKS FOR YOUR TIME AND I APPRECIATE IT AGAIN. >>THANKS SO MUCH. MY NAME IS COURTNEY VAN HOUTEN A UNIVERSITY IN DUKE UNIVERSITY IN POPULATION HEALTH SCIENCES AND AN INVESTIGATOR IN THE V.A. SYSTEM OF CARE IN DURHAM IN OUR CENTER CALLED ADAPT. I'M AN NIH-FUNDED RESEARCHER AND DISTANCE CAREGIVER AT THE MOMENT AND HAVE SOME EXPERIENCE OF MY BELOVED DAD LIVING WITH DEMENTIA. HE JUST ENTERED HOSPICE TWO WEEKS AGO AND DEALING WITH UNPRECEDENTED TIMES FROM MY EXPERIENCE. I'LL TALK ABOUT EXPANDING POLICY SUPPORT TO PROMOTE CAREGIVER RESILIENCE AND WELL-BEING AND FOCUS ON ECONOMIC COSTS. THE REASON I'M FOCUSSING ON THIS IS BECAUSE I DO STUDY ECONOMICS BUT AND LOOKING AT HOW INTERTWINED OUR ECONOMIC SECURITY AND MENTAL AND PHYSICAL HEALTH ARE. THESE ARE CRITICAL. WITHOUT ECONOMIC SECURITY IT'S HARD TO THRIVE AND HAVE RESILIENCE AS A CAREGIVER OR HUMAN BEING. WE HAVE A LOT OF EVIDENCE AND OTHERS HAVE SPOKEN ABOUT THE REWARDS TO CARE GIVING. HOWEVER, THERE'S STRONG EVIDENCE AS WELL THAT IN THE CAUSAL INFERENCE LITERATURE THAT SHOWS THERE'S NEGATIVE AFFECT TO ECONOMIC COSTS IF YOU'RE A CAREGIVER. THIS COMES THROUGH LEAVING THE LABOR FORCE TOO EARLY, HAVING DECREASED WAGES AND REDUCED PROMOTIONS AND EARLY RETIREMENT AND EARLY RETIREMENT FOR WOMEN ESPECIALLY IS A NEGATIVE IMPACT FOR THEIR ECONOMIC SECURITY IN OLD AGE. AND WOMEN ARE CARE GIVING SO IT'S A HUGE GENDER ISSUE FOR SURE. KEN MENTIONED THIS IN THE INTRODUCTION BUT WE HAVE SO MUCH HETEROGENEITY IN THE TYPES OF CAREGIVERS AND IT'S A FANCY WORD FOR THE HIGHEST RISK GROUPS AND THERE'S ECONOMIC COSTS AND WHO THE PEOPLE WHO FARE THE WORSE BECAUSE THEN WE CAN TARGET INTERVENTIONS AND POLICY REMEDIES TO SUPPORT THEM. WE HAVE LESS EVIDENCE ON WHAT ARE THE HIGHEST RISK GROUPS FROM THE CAUSAL INFERENCE LITERATURE BUT WHAT WE DO KNOW IS THAT PEOPLE WHO ARE FEMALE CAREGIVERS HAVE REDUCED WAGES AND THOSE ARE NOT SEEN IN MALE CAREGIVERS WE HAVE KNOWLEDGE FROM ERIC LARSON AND MEGAN IF YOU'RE A CAREGIVER TAKING CARE OF SOMEONE WITH MEMORY IMPAIRMENT YOU FACE HIGHER COSTS AND IF THERE'S FUNCTIONAL LIMITATIONS ALONE OR ON TOP OF A MEMORY IMPAIRMENT YOU'LL FACE HIGHER COSTS. IF YOU'RE AN INTENSIVE CAREGIVER YOU'RE MORE LIKELY TO QUIT WORK THAN PEOPLE WHO ARE NON-INTENSIVE CAREGIVERS AND IN TERMS OF THE LITERATURE ON WORK OUTCOMES AND HETEROGENEITY PEOPLE DEPRESSED AS CAREGIVERS ARE MORE LIKELY TO MISS WORK COMPARED TO PEOPLE NOT DEPRESSED. THESE ARE COMMON SENSE AND PROBABLY NOT A HUGE SURPRISE TO PEOPLE BUT THESE ARE SOME OF KEY GROUPS AND IT'S IMPORTANT TO KNOW THESE HIGH RISK GROUPS TO TARGET POLICY REMEDIES. WE NEED TO HAVE GAPS FILLED HOWEVER, IN TERMS OF STRUCTURAL RISK FACTORS AND THAT'S BEGIN TO HAPPEN SHOWING IF YOU EXPERIENCE BIAS AS A CAREGIVER YOU HAVE WORSE MENTAL HEALTH AND THERE'S A PAPER LOOKING AT THAT. AND JUST A REAL PLUG IS THAT WE NEED TO THINK ABOUT CAUSAL INFERENCE SO WE CAN MAKE SURE THE CARE GIVING IS CAUSING THE NEGATIVE OUTCOMES AND NOT ANOTHER FACTOR TO GUIDE FLS. -- POLICY. POLICY EVIDENCE ON WHAT WORKS ON RESISTANCE BECAUSE THE MAJORITY OF SUPPORT POLICIES ARE AT THE LOCAL OR STATE LEVEL AND UNDER FUNDED OR INACCESSIBLE. WE DO HAVE AN EXAMPLE HOWEVER, FROM ONE LARGE NATIONAL POLICY THAT COMES FROM THE VETERANS AFFAIRS. I'VE HAD THE HONOR TO EVALUATE THE PROGRAM IN THE LAST 11 YEARS. THE V.A. SPREAD A PROGRAM THAT WAS PASSED BY LAW THEY HAD TO OFFER COMPREHENSIVE CAREGIVER SUPPORTS TO CAREGIVERS OF VETERANS IN THE SYSTEM. THIS SUPPORT IS QUITE MANY FEATURES BUT THE KEY FEATURES ARE LISTED AND INCLUDES A MONTHLY STIPEND AND TRAINING TO CAREGIVERS, HEALTH INSURANCE IF YOU DON'T ALREADY HAVE IT AS A CAREGIVER OF A VETERAN AND PEER SUPPORT. THE MAIN POINTS OF CONTACT FOR GETTING SERVICES THROUGH THE HEALTH SYSTEM IS THROUGH A SOCIAL WORKER OR PSYCHOLOGIST WHO WILL MEET WITH THE CAREGIVERS AND TELL THEM ABOUT AND DEVICE A TREATMENT PLAN THAT MEETS THE NEEDS OF THE CAREGIVERS. AND TO HIGHLIGHT THE IMPACT ON ECONOMIC COSTS AGAIN WE FOUND IN A CAUSAL ANALYSIS THAT THIS NATIONAL COMPREHENSIVE PROGRAM ABOUT 40,000 CAREGIVERS HAVE PARTICIPATED IN DOES REDUCE PERCEIVED FINANCIAL STRAIN AMONG THE CAREGIVERS WHO PARTICIPATE. THIS IS IMPORTANT BECAUSE THE WAY YOU FEEL ABOUT THE FINANCES IS ALSO REALLY TIED TO YOUR MENTAL HEALTH AND NOT JUST THE AMOUNT OF MONEY YOU HAVE WHICH IS ALSO IMPORTANT OF COURSE. THAT'S ONE NATIONAL POLICY WE CAN DRAW FROM. WE HAVE TO MOVE TO INDIRECT POLICIES AT THE STATE LEVEL. OF COURSE THERE'S CAREGIVER TAX CREDITS PEOPLE HAVE EVALUATED BUT IN A RECENT WORKING PAPER WE HAVE ESTIMATED HOW NEW STATE FAMILY LEAVE POLICIES HAVE AFFECTED CAREGIVERS. WE FIND EVIDENCE OF INCREASE WILL RESILIENCE IN THE PEOPLE LIVING IN STATES WITH PAID FAMILY LEAVE POLICIES HAVE AN INCREASE OF PROVIDING CARE GIVING AND HAVE INCREASED LABOR ATTACHMENT AMONG THOSE CAREGIVERS THOSE LIKELY TO BECOME CAREGIVERS. THESE ARE AVERAGE AFFECTS BUT WE LOOKED AT TRYING TO IMPACT THE HETEROGENEITY AND THERE'S A NO DIFFERENCES BY RACE OR MARITAL STATUS FOR FEMALES IN WHO BENEFITS BUT DID FIND FEMALES AND LOW-EDUCATION FEMALES IN PARTICULAR BENEFIT IN TERMS OF LABOR FORCE ATTACHMENT. SELF-NOMINATING TO SERVICES IS NOT AN EQUITABLE APPROACH AND THIS CAME UP IN AN EARLIER TALK AND TALKING ABOUT BUILDING THE RESEARCH AND POLICY REMEDIES IN THE AREA. THIS IS A BUSY SLIDE BUT I WANT TO HIGHLIGHT USING THE MISSION OF PUBLIC HEALTH AND MULTI-SECTORIAL APPROACH WILL BE AN EQUITABLE POLICY TO SUPPORT CAREGIVERS. WHY DO WE NEED A PUBLIC HEALTH FRAME? WE KNOW CAREGIVERS FACE HEIGHTENED RISK OF BAD OUTCOMES COMPARED TO NON CAREGIVERS. THERE'S THE DEFINITION OF PUBLIC HEALTH PROBLEM WE NEED TO REMEDY. EQUITY IS THE CENTER OF THE PUBLIC HEALTH FRAME. THIS IS WHAT SHOULD GUIDE THE MULTI-SECTORIAL APPROACH LOOKING AT ASSESSMENT AND POLICY DEVELOPMENT. IT'S NOT JUST MULTI-SECTORS THERE'S SYSTEMS AND EMPLOYERS AND RESEARCHERS THAT NEED TO WORK IN SILOS AND NEED CROSS-COLLABORATION AS SOME COLLEAGUES MENTIONED EARLIER WHICH I AGREE WITH. WITH DR. CHEN'S TALK OF HEALTH INFORMATION TECHNOLOGY AND PUBLIC HEALTH SYSTEMS WORKING TOGETHER WOULD BE AN AMAZING COLLABORATION FOR SUPPORTING CAREGIVERS MORE BROADLY. I'M GOING TO TALK ABOUT A COUPLE DIFFERENT SECTORIAL SOLUTIONS AND ONE THING WE NEED TO HAVE IS INCREASED FUNDING FOR THE NATIONAL CAREGIVER STRATEGY IMPLEMENTATION. PUBLIC HEALTH IS A KEY SECTOR THAT COULD HELP WITH SCREENING, CREATING REGISTRIES, MONITORING RISK THROUGH LOCAL AGENCIES PEOPLE TRUST AND USING LIKE AREA AGENCIES ON AGING. PUBLIC HEALTH CAN USE THE LIMITED RESOURCE TO TARGET PRESENT AND FUTURE CAREGIVERS MOST AT RISK AND LOOKING AT WEALTH GAP AMONG BLACK FAMILIES IN TERMS OF HISTORICAL WEALTH AND FOR EVERY ONE DOLLAR OF WHITE WEALTH BLACK FAMILIES HAVE 12 CENTS AND PUBLIC HEALTH CAN LINK TO SERVICES AND TAX CREDITS AND EXISTING SERVICES AND PROGRAMS THEY ALREADY QUALIFY FOR LIKE THE EARNED INCOME TAX CREDIT. HEALTH SYSTEM SOLUTION MULTI-FOLD. WE HEARD ABOUT SOME TODAY BUT WE NEED TO IDENTIFY CAREGIVERS FOR OUTREACH. IT'S A NO-BRAINER BUT THERE'S NO WAY TO DO IT IN BOTH HEALTH SYSTEMS. BECAUSE OF THAT WE CAN'T LOOK AT THE ABILITY TO PROVIDE CARE OR MONITOR HOW THEY'RE DOING. WE NEED TO SCREEN PATIENTS. PATIENTS ARE CAREGIVERS AND WE KNOW THEY FACE HEIGHTENED RISK AND USE THE PATIENT VISIT TO IDENTIFY CAREGIVERS STATUS AND NEED TO INCENTIVIZE CAREGIVERS TO IMPROVE QUALITY OF CARE AND BEYOND SPREADING EVIDENCE-BASED SCREENING WE NEED TO EXPAND JOYFUL SUPPORTS BECAUSE NOT EVERYONE WANTS TRAINING. EMPLOYER SOLUTIONS INCLUDE BASIC BENEFITS TO HELP THOSE REMAINING WORKING LIKE FLEXIBLE WORK AND GERIATRIC AND LONG-TERM CARE INSURANCE BENEFITS FOR EMPLOYEES. RESEARCH SOLUTIONS HAVE BEEN TALKED ABOUT ELSEWHERE. I'LL FINISH ONE ONE MORE SLIDE. THINKING ABOUT THE NATIONAL POLICY SOLUTIONS WE NEED TO INCREASE FUNDING. FROM PAID LEVEL WOULD BE VERY BENEFICIAL TO CAREGIVERS AND THAT NEEDS TO BE ENACTED. CONSIDERING CARE GIVING AS WORK WOULD HELP INCREASE CAREGIVER RESILIENCE IN THE ECONOMIC FRAME AND THINGS LIKE SOCIAL SECURITY CREDIT AND ADOPTING SUPPORT AND SUPPORTING UNIVERSAL COVERAGE TO ENABLE CHOICE WHEN YOU DON'T HAVE CHOICE IS WHERE WE HAVE WORSE OUTCOMES AND DIDN'T MEET THE DEFERENCES OF OLDER ADULTS AND THOSE LIVING WITH DEMENTIA IN SOME CASES. USING THIS FRAME WE WOULD HAVE A WORLD WHERE CAREGIVERS HAVE EQUITABLE POLICY SUPPORT AND THESE ARE SOME OF THE BENEFITS WE'D SEE. I'LL STOP THERE. THIS COULD BE A GUIDELINE BECAUSE THEY'VE BEEN IMPLEMENTING A NATIONAL PROGRAM IN THE LAST 11 YEARS. >>THANK YOU TO ALL THE SPEAKERS AND I WANT TO JUST SAY TO EVERYONE PARTICIPATING AS I GO OVER THE RESEARCH GAPS AND OPPORTUNITIES WE REALLY ARE DEPENDING ON YOUR COMMENTS AND THOUGHTS ABOUT THEM. ONE OF THE BIG OUTCOMES OF THE SUMMIT IS GOING TO BE A SET OF GAPS AND OPPORTUNITIES AND THEY BENEFIT FROM FEEDBACK AND SUGGESTIONS. THE GAPS AND OPPORTUNITIES WE'VE IDENTIFIED WE WANT TO RECOMMEND CONDUCTING RESEARCH TO EVALUATE NEW AND EXISTING METHODS TO ENABLE HEALTH SYSTEMS TO IMPROVE EQUITABLE IDENTIFICATION OF CAREGIVERS. WE JUST HEARD IT'S HARD TO FIND CAREGIVERS WE NEED EQUITABLE IDENTIFICATION TO PROVIDE SUPPORT AND SERVICES AND INVOLVE THEM IN THE DEVELOPMENT AS WELL AS TESTING OF CAREGIVER FOCUSSED INTERVENTIONS. AND HERE WE'RE ECHOING ONE OF THE MAJOR THEMES LOOKING AT CULTURALLY INFORMED RESEARCH ON CAREGIVER AND THE SUPPORT FOR CARE AND CAREGIVING THAT INCORPORATES CAREGIVING AS A CONDITION AND BUILD ROBUST RESEARCH EVIDENCE ABOUT SYSTEMS-LEVELS POLICIES AND POLICIES ACROSS THE SECTORS JUST DISCUSSED REGARDING THE POSITIVE, NEGATIVE OR NEUTRAL AFFECTS ON CAREGIVER RESILIENCE AND INEQUITIES AND ACCESS TO SUPPORTS AND SERVICE. THEY INCLUDE BUT ARE NOT LIMITED TO PUBLIC HEALTH, HEALTH SYSTEMS, COMMERCIAL AND CORPORATE ENTITIES. AND LOOK AT CAREGIVER RACE, SOCIO ECONOMIC STATUS, PLACE AND HEALTH LITERACY. THOSE ARE GAPS IN OUR OPPORTUNITIES. I WANT TO TURN IT OVER TO OUR DISCUSSANTS. >>I'LL TURN IT OVER TO RITA CHOULA AND CASSANDRA THOMAS AND JASON RESENDEZ TALK ABOUT THEIR EXPERIENCE IN THE ADVOCACY AND PUBLIC POLICY SPACE. RITA. >>GOOD AFTERNOON. I'M RITA CHOULA SENIOR DIRECTOR AARP PUBLIC POLICY INSTITUTE. I'D LIKE TO START BY SAYING THANK YOU TO THE FAMILY CAREGIVERS WHO HAVE SPOKEN TODAY AND YESTERDAY. AS A FORMER FAMILY CAREGIVER TO MY MOTHER WHO LIVED WITH FRONTAL TEMPORO DEMENTIA AND THEY OPEN A WEN -- WINDOW TO THE REALITIES FACED ON A DAILY BASIS FROM CARE PARTNERS AND KNOWS THEY CARE FOR WITH DEMENTIA. THIS SHOULD INFORM RESEARCH POLICY AND PRACTICE AND WHILE OFTEN SILOED IT'S A CRITICAL TRIAD THAT SHOULD WORK IN CONCERT TO DEVELOP SOLUTION SHOULD IMPACT FAMILY CAREGIVERS AND THOSE LIVING WITH DEMENTIA. I OFTEN HEAR THE TERM INFORMAL CAREGIVERS WHETHER YOU USE THE TERMS CAREGIVER OR CARE PARTNER OR SOMETHING ELSE, I RESPECTFULLY WOULD LIKE TO ADDRESS THE USE OF THE TERM INFORMAL. AS THE STORY SHARED IN THE LAST TWO DAYS AND MILLIONS OF OTHERS LIVE THERE'S NOTHING INFORMAL ABOUT THE MILLIONS OF HOURS OF UNPAID CARE FAMILY AND FRIENDS PROVIDE. I APPRECIATED DR. ROBERTO'S FOCUS ON THE RECOGNITION FAMILY IS A BROAD TERM. IT'S CRITICAL RESEARCH DEFINITIONS ARE INCLUSIVE AND RECOGNIZE HOW FAMILY IS DEFINED ACROSS CULTURES, GEOGRAPHY, RACE AND GENDER AND SEXUAL IDENTITIES AND RECOGNIZING FAMILY IS OFTEN ONE PERSON, A SOLE CAREGIVER. DR. GAUGLER AND VAN HOUTVEN SPEAK TO THIS WHETHER WE TALK RESEARCH OR POLICY SO OFTEN WE HEAR FROM CAREGIVERS THEY FEEL INVISIBLE WHETHER AT THE BEDSIDE NAVIGATING COMPLEX SYSTEMS OR IN THEIR EVERYDAY RESPONSIBILITY. THERE'S RESEARCH AND RELATED INTERVENTIONS DEVELOPED THAT SPEAKS TO THE MANY OF THE NEEDS THESE CAREGIVERS FACE. HOWEVER, IT OFTEN STOPS AT THE PROVERBIAL DOOR. THE INTERVENTIONS IS WHAT IMPACTS THOSE WE'RE TRYING TO SUPPORT. DR. VAN HOUTVEN SPEAKS TO THE NEAT FOR POLICY SOLUTIONS FEDERALLY AND IN STATES. THERE IS HEIGHTENED FOCUS RIGHTFULLY SO ON THE NED FOR -- NEED FOR THE SOLUTIONS TO SUPPORT CAREGIVERS. WE HAVE A UNIQUE AND OVERDUE OPPORTUNITY TO MAKE A DIFFERENCE IN THE LIVES OF CAREGIVERS BY PUTTING INTO ACTION THE SUPPORT TO CAREGIVERS DELIVERED TO CONSIDERATION LAST SEPTEMBER. I WANT TO QUOTE DR. VAN HOUTVEN AND ENCOURAGE US TO LOOK BEYOND THE AVERAGE. IN ORDER TO LOOK AT INEQUITIES AND BIAS AND LACK OF ACCESS TO QUALITY SERVICE AND SUPPORT AND THE OVER ALL COST OF CAREGIVING PARTICULARLY IN MINORITIZED COMMUNITIES WE MUST MAKE CHANGES IN HOW WE DEVELOP AND IMPLEMENT RESEARCH AND POLICY FOR FAMILY CAREGIVERS. THIS WORK IS INTENTIONAL AND NEEDS TO BE DONE TO BRING ABOUT INTEGRATED SYSTEMS AND SUPPORTS THAT ADDRESS THE COST OF THOSE LIVING WITH DEMENTIAS AND THEIR FAMILIES. IT MAY NOT BE EASY BUT IT IS CRITICAL. THANK YOU FOR THE OPPORTUNITY TO SPEAK TODAY. I LOOK FORWARD TO FURTHER DISCUSSION. >>THANK YOU, RITA AND FOR INCLUDING ME. I'M JASON RESENDEZ AND CEO OF AN ORGANIZATION FOCUSSED ON BUILDING HEALTH AND WEALTH EQUITY THROUGH RESEARCH POLICY AND INNOVATION. A RIGOROUS FOCUS ON UNDERSTANDING AND ADDRESSING THE IMPACT OF DEMENTIA CARE AND FAMILY CAREGIVERS IS CRITICAL GIVEN THE VITAL ROLE PLAYED IN HELPING CARE PARTNERS NAVIGATE COMPLEX HEALTH CARE AND ECONOMIC REALITIES ASSOCIATED WITH DEMENTIA. AS DR. HEPBURN HIGHLIGHTED THEY CREATE SYSTEMS WHERE DON'T EXIST AND TAKE IT A STEP FURTHER. FAMILY CAREGIVERS ARE THE HUMAN INFRASTRUCTURE THAT MAKE DEMENTIA CARE POSSIBLE IN THIS COUNTRY AND ANY COUNTRY. ACCORDING TO THE NATIONAL ALLIANCE FOR CARE GIVING AND PARTNERS AT AARP, THEY ARE 53 MILLION AMERICANS PROVIDING CARE. IT COMES WITH SOME REWARDING AND SOME HARMFUL CONSEQUENCES. CAREGIVERS OF COLOR EXPERIENCE NEGATIVE HEALTH AND ECONOMIC CONSEQUENCES DUE TO FAMILY CAREGIVER. WHEN RESUMING DEMENTIA SPECIFICALLY NEARLY HALF CAREGIVERS SAY PROVIDING CARE IS EMOTIONALLY STRESSFUL AND OFTEN INVOLVES PHYSICAL STRAIN. AND THEY'RE TWICE AS LIKELY TO SAY THEY'RE HEALTH HAS GOTTEN WORSE AS A RESULT OF THEIR CAREGIVING RESPONSIBILITIES COMPARED TO OTHER CAREGIVERS AND 6 IN 10 PROVIDER CARE WHILE WORKING LEADING TO CONSEQUENCES AS THAT CARE BECOMES MORE DIFFICULT TO BALANCE WITH WORK. THESE ISSUES BECOME MORE CHALLENGING WHEN WE CONSIDER OTHER BARRIERS AND ACCESS TO HEALTH CARE AND AMPLIFIED WITH THOSE WHO REQUIRE SPECIALIZED HEALTH CARE SERVICES HARDER AND HARDER TO COME BY IN LOW-RESOURCED COMMUNITIES. THE REALITY UNDER SCORES THE IMPORTANCE OF THE DEVELOPMENT OF INTERVENTIONS ESPECIALLY HOME-BASED INTERVENTIONS ROOTED IN THE LIVED EXPERIENCE OF PEOPLE LIVING WITH DEMENTIA AND THEIR CAREGIVERS. AND THE CONSEQUENCES OF DEMENTIA CAREGIVING UNDER SCORE POLICY AND POLICIES THAT CATALYZE CAREGIVER EDUCATION AND ADVANCED SECURITIES AND MANAGING RISK. THE NATIONAL STRATEGY FOR FAMILY CAREGIVING IS UNDER RESOURCED AND NECESSITATES SUPPORT AND FURTHER INVESTMENT AND FOCUS. THANK YOU ALL FOR THIS OPPORTUNITY TO SPEAK AND I LOOK FORWARD TO CONTINUED DISCUSSION. >>HELLO. THANK YOU FOR INVITING ME. MY NAME IS CAS AN DRA AND -- CAS -- CASSANDRA AND I CARED FOR MY GRANDMOTHER WITH DEMENTIA AND BEFORE THAT I WAS FIRST AND FOREMOST A GRANDDAUGHTER. THERE IS A LOT OF LOVE AND SUPPORT BUT ALSO THERE'S A NEED FOR MORE SOCIAL SUPPORT AND DIAGNOSIS OF THESE SYMPTOMS. I ACCEPTED TO LIVE WITH MY GRANDMOTHER IN HER APARTMENT AFTER THE PASSING OF MY GRANDFATHER AND THE DIAGNOSIS OF HER SYMPTOMS AND NEED WAS FILLED WITH ANXIETY AND SHAME DUE TO POOR CULTURAL SENSITIVITY AND LACK OF AFFIRMATION OF THE FRUSTRATIONS MY GRANDMOTHER ENCOUNTERED ON A DAILY BASIS. THAT'S A SPECIFIC CONCERN IS IT'S A DAILY BASE FOR THE DISEASE AND THE CONCERNS AND SYMPTOMS ARE AFFECTING MOBILITY, VERBAL CUES, COMMUNICATION. I WOULD OFTEN INSIGHT OTHER FAMILIES TO TREAT HER TO LUNCH SO I WOULD HAVE A MENTAL HEALTH BREAK AND PEER SUPPORT BUT ALSO SHE WOULD GET WEEKLY SOCIAL INTERACTIONS. A LOT OF THE TIMES IT DID FEEL LIKE MY GRANDMOTHER AND I WERE ALONE IN DEALING WITH DAILY CHALLENGES. I LEARNED TO ASSERT MY NEEDS WITH RESPITE CARE AND CHECKLIST OF NEEDS AND LIMITED PART-TIME JOBS AND EDUCATION FROM HANDBOOKS FROM THE COUNTY AND AGING DISABILITY RESOURCE CENTERS. WE HAVE THE ASSET OF A COMMUNITY NURSE TO FILLED HER MEDICATIONS HOWEVER, THE MORE DISEASE-SPECIFIC QUESTIONS WERE UNANSWERED IN THOSE INTERACTIONS. AS THE DISEASE PROGRESSED ASSERTING WHAT MY GRANDMOTHER HAD TO SHARE WAS IMPORTANT AND I HAD AN OPPORTUNITY TO BE MORE PATIENT AND ENCOURAGE HER TO FIND THE WORDS WITHOUT HELPING AND RESOURCES ON THE RESERVATION IMPACTED OUR QUALITY OF CARE. THE LACK OF MEDICAL SUPPLIES AND LOAN CLOSETS AND SEEKING MORE TRAINING AND TIME MANAGEMENT WAS CHALLENGING. HOWEVER, THE HEALTH EDUCATION AND CULTURAL SENSITIVE OF IDENTIFYING SOCIAL SUPPORT AND RESPONSIBILITIES WITH THE ISOLATION AND LOCKDOWN AND HOLDING THE SPACES FOR COMMUNICATION TO ADAPT AND MEET THE FRUSTRATION IS A STEP IN EMPOWERING OUR CAREGIVERS AND FAMILY. THANK YOU FOR THE OPPORTUNITY TO SPEAK AND I LOOK FORWARD TO FUTURE DISCUSSION. >>HOW TO ALL OF OUR PANELISTS AND DISCUSSANTS. WE'LL HAVE ABOUT A 15-QUESTION QUESTION AND ANSWER PERIOD AND I HAVE A QUESTION TO START THINGS OFF. I WOULD LIKE ADVICE AS A RESEARCHER ABOUT WHAT IT IS -- WHAT TERM IS THIS USED TO ENGAGE FAMILY CAREGIVERS IN RESEARCH. IS IT FAMILY CAREGIVER, CARE ASSISTANT WHICH CASSANDRA JUST USED? THAT'S ONE PART OF THE QUESTION. THE SECOND IS MAYBE MORE TO THE CARE PARTNERS AND CAREGIVERS. I'M STRUCK BY ROBERTA'S EXPERIENCE BASICALLY HAVING TO GRAB THE PROVIDER BY THE THROAT IN ORDER TO GET A DIAGNOSIS. WHAT SHOULD A CAREGIVER CALL HERSELF OR HIMSELF? HOW SHOULD THAT PERSON IDENTIFY SO AS TO GAIN AGENCY IN AN ENVIRONMENT WHERE CARE IS BEING PROVIDED AND NOT BE DISREGARDED? SO TWO QUESTIONS. >>I'LL START WITH THE FIRST ABOUT WHAT DO WE CALL OR HOW WE IDENTIFY THE CAREGIVERS. WE FIND THAT CHALLENGING PARTICULARLY IN RURAL AREAS THAT THE FAMILY MEMBERS DO NOT SEE THEMSELVES AS CAREGIVERS. THEY'RE DOING WHAT THEY'RE SUPPOSED TO BE DOING. WE HAVE TRIED HELPERS, AFTERING PERSONS WITH MEMORY PROBLEMS AND THOSE TERMS. ONCE WE START TALKING TO THEM THEY SAY, OH, YEAH, I AM A CAREGIVER AND THEN IT'S MORE COMMON BUT PEOPLE DON'T PERCEIVE THEMSELVES AS CAREGIVERS. >>I THINK AT LEAST IN OUR RESEARCH WE DON'T LABEL PEOPLE BUT WE TRY TO IDENTIFY PEOPLE BY WHAT ACTIVITIES THEY PERFORM WHEN WE TRY TO ASK THEM DO YOU REGULARLY HELP A FAMILY MEMBER OR FRIEND DUE TO THEIR ONGOING HEALTH PROBLEMS? IT'S PROBABLY NOT EXACTLY THE QUESTION AND LET THEM COME TO THEIR OWN ROLE. I THINK LIKE IN HEALTH ECONOMICS WE USE THE TERM INFORMAL CARE TO INDICATE THERE'S NO PRICE FOR IT BUT WE MOVED AWAY FROM THAT TERM AND LOTS WE WOULD NEVER SAY YOU'RE AN INFORMAL CAREGIVER. IT DOESN'T RECOGNIZE THE RICHNESS AND COMPLEXITY OF THE ROLE. >>I'D ADD TO THAT AND BE CURIOUS TO RITA'S THOUGHTS. IT COMES DOWN TO RECOGNIZING THAT COMPLEXITY AND THE ROLE AND PROVIDING A DESCRIPTION OF WHAT CARE GIVING MEANS AND THE OF HOW TO APPROACH IT. AND GIVING FOLKS THAT VOCABULARY AND FRAMEWORK TO SELF-IDENTIFY CAREGIVERS. WE AS ASOCIETY UNDER VALUED THIS AND NOT DESCRIBED THE ACTS AND LABOR OF CARE AS SOMETHING MEANINGFUL THAT WE LOOK PAST. WE DON'T SEE IT IN OUR DAILY LIVES IN A WAY THAT MAKES SENSE TO BE INTEGRATED INTO A HEALTH SYSTEM OR TO BE VALUED WITH AN EMPLOYER SETTING. IT'S UP TO US AS GATE KEEPERS IN WAYS TO DESCRIBE AND CREATE THAT VALUE VOCABULARY TO ENABLE THAT IDENTIFICATION. >>I THINK IT'S CRITICAL. AS WE DO WORK TO EDUCATE HEALTH CARE PROVIDERS AROUND WHO THE INDIVIDUALS, PARTNERS, DAUGHTERS, ETCETERA, WE'RE CALLING THEM CAREGIVERS. THERE'S HOPEFULLY SOME IMPACT IN GREATER COMMUNICATION THERE BECAUSE OFTEN TIMES WHEN YOU GO IN AND SAY I'M THE DAUGHTER, I'M THE WIFE, I'M THE PARTNER, THERE'S AN ASSUMPTION THIS IS YOUR DUTY AND RESPONSIBILITY AND IT'S NOT TAKEN AS SERIOUSLY. MANY OF THE ISSUES AND CONCERNS YOU HAVE. >>LIZ HAS BEEN MONITORING THE QUESTIONS FLOATING FROM PARTICIPANTS AND I WONDER IF YOU HAVE SOMETHING TO THROW OUT TO US? >>DO I. ALONG THE SAME NOTES THERE'S A QUESTION IN THE CHAT ABOUT THE CHOICE AN INDIVIDUAL MAKES TO BECOME A CAREGIVER OR CARE PARTNER RATHER THAN AS YOU WERE TALKING ABOUT FEELING LIKE THIS MIGHT BE A DUTY OR FEELING LIKE THIS IS THE ONLY POSSIBLE OPTION IN OUR HEALTH CARE SYSTEM. AND WONDERING IF THERE'S DIFFERENCES BETWEEN YOU MAY CHOOSE AND WHAT ENCOURAGES ACTIVE CHOICE VERSUS SOMEONE FEELING LIKE THEY CAN PLUG A HOLE. >>A CHALLENGING QUESTION. SO OFTEN WE HAVE THIS IDEA -- I THINK EVEN KEN SPOKE TO THAT WHEN HE FIRST OPENED UP THIS DIFFICULTY OF WHAT CAREGIVING LOOK LIKES AND WHO THAT IS AND HOW THEY ARRIVE AT THE ROLE IN CAREGIVING. AS WE'RE TALKING ABOUT THE TERM, IF ANYTHING IT HEIGHTENS THE NEED TO HAVE SOME SORT OF TERM TO REALLY DEFINE WHAT THAT ROLE IS BECAUSE IT IS VERY DIFFICULT AGAIN WHEN YOU'RE TALKING ABOUT IT WHETHER YOU'VE HAD CHOICE OR WHETHER YOU'VE ASSUMED IT. TO REALLY LOOK AT WHAT THE ROLE IS TO YOU AND DESCRIBE THAT. AND LOOKING AT SOME FORMAL TERM AND COUPLING THAT WITH WHAT YOU'RE NEEDS ARE, WITH WHAT YOU'RE DOING FOR THAT PERSON AND WITH THE CHALLENGES YOU'RE FACING ARE VERY CRITICAL IN HELPING REALLY SPEAK TO WHAT YOU'RE NEEDS ARE AND ALLOW A PROVIDER OR OTHER PROFESSIONAL TO REALLY SUPPORT YOU AND DEMAND THAT SUPPORT. >>AND THE HISTORY OF THAT RELATIONSHIP. HOW THEY BECAME THE CAREGIVER AND ALLUDING TO THE CHALLENGING SITUATIONS WE SEE CAREGIVERS IN. I THINK CARE AS PERSONS PROVIDING CARE WHETHER HEALTH CARE OR OTHER SERVICE PROVIDERS NEED TO STEP BACK AND RECOGNIZE PEOPLE COME INTO THE CARE GIVING ROLE FROM MULTIPLE POINTS IN THEIR LIVES AND FOR MULTIPLE REASONS. >>CAN I INVERT A LITTLE. I'M VERY CAREFUL NOT TO REFER TO THE PERSON WITH DEMENTIA AS A LOVED ONE FOR EXACTLY THAT REASON. >>SO THAT POINT THERE'S EIGHT OF COMMENTS IN THE CHAT HOW THERE'S GROWING AMOUNTS OF KINLESSNESS. AND THEY DON'T HAVE FAMILY TO PROVIDE THAT CARE AND THERE'S A SECONDARY OR TERTIARY CARE PARTNER WHO MAY HAVE MORE OF AN EPISODIC ROLE RATHER THAN CONTINUED ROLE. WHAT DOES THE PANEL THINK ABOUT HOW TO INCLUDE AND IDENTIFY THE INDIVIDUALS AND MAKE SURE THEY'RE GETTING THE SERVICES THEY NEED? >>I THINK I CAN SPEAK TO THAT BRIEFLY. QUICKLY IN TERMS OF THE PRIOR QUESTION ABOUT THE CHOICE, WHETHER PEOPLE FEEL LIKE THEY HAVE A CLOSING TO BE A CAREGIVER, WE DO KNOW AND THIS IS IN THE FACTS AND FIGURES REPORT FOR THE ALZHEIMER'S ASSOCIATION WHICH IS MOST PEOPLE DON'T FEEL LIKE THEY HAVE A CHOICE TO BE CAREGIVER FOR A VARIETY OF REASONS PROBABLY COMPLEX ONES AS SOME OF US ALLUDED TO. NUMBER ONE THAT'S IMPORTANT. NUMBER TWO, THE ISSUE OF KINLESSNESS YOU HEARD ME TALK ABOUT THE STUDY WE'RE LAUNCHING CALLED HOME ALONE WHICH IS PRECISELY DESIGN TO ADDRESS AND IDENTIFY SOME OF THE NEEDS OF THE INDIVIDUALS WHO DON'T HAVE AN AVAILABLE CAREGIVER. THE TARGET IN OUR PROGRAM ARE THOSE WHO LIVE ALONE AND MAY HAVE A CAREGIVER AND WE'LL START RECRUITING BUT LIKE MANY ARE SAYING IN THE CHAT IT WILL PROBABLY BE PEOPLE WHO DON'T HAVE AVAILABLE SUPPORT FROM FAMILY, FRIENDS OR OTHERS. ONE OF THE THINGS WE'LL LOOK AT IS WHAT CAN BE DONE ENVIRONMENTALLY AS WELL AS IN TERMS OF HOW THEY IDENTIFY ENGAGING IN ACTIVITIES AND WITH THE ENVIRONMENT TO HELP THEM BETTER LIVE WITH THEIR COGNITIVE IMPAIRMENT. IT'S A KEY GAP AND THERE'S NO DOUBT ABOUT IT. FOR THOSE OF US IN CARE GIVING WE CAN'T CONTINUE TO IGNORE PEOPLE WHO DON'T HAVE CAREGIVERS BECAUSE IT'S CRITICAL. WE KNOW LIVING ALONE -- NOT SAYING IT'S A COROLLARY BUT WE DON'T KNOW RISKS OF LIVING ALONE FOR MANY HEALTH CONDITIONS INCLUDING DEMENTIA. THAT'S A KEY GROUP OF PEOPLE WE NEED TO TARGET AND IDENTIFY MORE EFFECTIVELY. >>I WILL ADD THAT NEEDS TO BE FOLLOWED BY POLICY. FOR EXAMPLE, ONE OF THE POINTS I COMPLETELY AGREE WITH WAS ABOUT THE IMPORTANCE AND OPPORTUNITY OF POLICY LIKE PAID FAMILY AND MEDICAL LEAVE TO SUPPORT FAMILY CAREGIVERS AND NARROW INEQUITIES OVER TIME BUT WHEN YOU LOOK AT HOW WE DEFINE QUALIFICATION FOR PAID FAMILY LEAVE BENEFITS AT THE FEDERAL LEVEL IT'S VERY NARROW IN HOW WE DEFINE A FAMILY CAREGIVER IN THAT RELATIONSHIP. THERE'S EFFORTS UNDERWAY TO HOW WE DEFINE FAMILY FOR POLICY AND HAVE TO ENSURE WE'RE LOOKING AT WHERE WE'RE FINDING CONSENSUS AROUND THE NEEDS OF THE DEFINITION AND HOW WE TRANSLATE THAT INTO POLICY SO THAT THOSE FOLKS WHO ARE PROVIDING THAT CARE EPISODICCALLY OR MAYBE IT'S PROVIDING CARE FOR CHOSEN FAMILY I'M COVERED BY POLICY IN THE SAME WAY I WOULD IF I WAS PROVIDING CARE FOR A GRAND MOTHER OR FATHER. >>THERE WAS ALSO A SECOND QUESTION AND TOTALLY BUILDING OFF WHAT JASON WAS SAYING AROUND THE BROADER SENSE OF FAMILY AND THERE MAY BE MORE THAN ONE CAREGIVER, I THINK IT SPEAKS TO THE NEED ESPECIALLY IN A HEALTH SYSTEM SETTING WHERE YOU HAVE TO THROW AWAY THE ASSUMPTIONS. BECAUSE SOMEBODY'S SITTING AT SOMEBODY'S SIDE IT MAY INTO THE BE THE INDIVIDUAL PROVIDING THAT FULL CARE. HOW DO HEALTH SYSTEMS OR HEALTH PROVIDERS DO A BETTER JOB OF COMMUNICATING AND ENGAGING WITH THE PERSON, THE PATIENT NEEDING THE CARE AND THOSE CAREGIVERS AND NAMELY FAMILY MEMBERS AND FRIENDS AROUND AND IT'S NOT EASY YOU HAVE TO ENGAGE WITH PEOPLE TO UNDERSTAND WHAT'S GOING ON AS THEY TRANSITION HOME. >>HOW DO WE ENCOURAGE SUPPORT AND AGENCY BEFORE THE CRISIS ACTUALLY SETS IN? >>WE HOSTED A LOT OF TALKING CIRCLES WITHIN THE FAMILY TO IDENTIFY WHO WAS THE BEST QUALIFIED AND I THINK THAT GOES INTO THE POLICIES THAT COULD BE PUT IN PLACE AS TO WHAT QUALIFIES YOU AS A CAREGIVER. I FORTUNATELY HAD SOME CAREGIVING EXPERIENCE IN THE EDUCATIONAL SECTOR CARING FOR PERSONS WITH CEREBRAL PALSY WHILE IN HIGH SCHOOL AND NOT EVERYBODY HAS THE OPPORTUNITIES TO LEARN FROM THAT ASPECT AND BE ABLE TO PROVIDE THE MOBILITY CARE OR THE VERBAL CUES AND THE COMMUNICATION NEEDS. WHEN IT CAME TO THE FAMILY DYNAMIC IT WAS -- I WAS THE BEST SUITED FOR IN TERMS OF TIME MANAGEMENT. I HAD JUST GRADUATED COLLEGE. I DIDN'T HAVE ANY OTHER JOB OPPORTUNITIES AVAILABLE AND IT JUST KIND OF FELT LIKE IT WAS THE PERFECT COMBINATION OF JUST KIND OF GOING FORWARD WITH BEING THE CAREGIVER. LIZ, REMIND ME WHAT THE LAST PART OF THE QUESTION WAS? >>ENCOURAGING PEOPLE TO BE OPEN TO PREEMPTIVE SUPPORT MAYBE BEFORE THE CRISIS SETS IN. >>TRUE. THANK YOU. WE DID A LOT OF TALKING INDIVIDUALLY WITH THE FAMILY OF WHAT NEXT STEPS WOULD BE AND WHAT THOSE NEXT STEPS WOULD LOOK LIKE I REALLY CAN'T SAY MUCH. IT JUST SORT OF HAPPENED AND SOMETIMES THERE'S NO SOCIAL SUPPORT OR STRATEGIC PLANNING. IT'S JUST WHAT NEEDS TO BE DONE AND WHO IS GOING TO VOLUNTEER. I THINK THE QUESTION NEEDS TO BE ADDRESSED. I'M NOT THE PERSON TO DO IT THOUGH. >>THIS HAS BEEN A FABULOUS PANEL AND EVERYBODY WAS SO DISCIPLINED AND ON TIME AND TIMELY IN THEIR REMARKS. I'M VERY GRATEFUL AND THANKFUL TO ALL OF YOU AND TO THE AUDIENCE. PLEASE SEND IN COMMENTS ON OUR GAPS AND OPPORTUNITIES AND I'LL TURN IT BACK OVER TO ANDREA AND JULIE AND THEY'LL CLOSE OUT THE DAY. THANK YOU TO THE PANELISTS AND DISCUSSANTS. >> >>THANK YOU TO THE PRESENTERS AND PANELISTS AND PARTICIPANTS. WE'RE GRATEFUL FOR ALL OF YOUR SESSIONS AND YOUR INSIGHTS. IT'S MY PRIVILEGE TO CLOSE OUT THE DAY WITH A FEW SUMMARY COMMENTS ON TODAY'S SUMMIT. WE BEGAN THE DAY WITH THE LIVED EXPERIENCE ENGAGEMENT PANEL. HEIDI GIL DESCRIBED THE CROSS-CUTTING THEME AND SCREENING OR COGNITIVE IMPAIRMENT AND DECISION MAKING AND SUGGESTED APPROACHES FROM OTHER HEALTH APPROACHES SUCH AS HIV AS A WAY FORWARD. AND WE HEARD WITH THE CHALLENGES OF HELPING THOSE WITH DEMENTIA LIVE WELL AND WHAT IT MEANS FOR FAMILIES. AND THERE WAS A CALL FOR DETECTION AND DIAGNOSIS AND CONNECTIONS TO THE RESOURCES AND STUDY OPPORTUNITIES. AND WE LOOKED AT HOW E.H.R. COULD BE A TOOL BUT COULD ALSO BE COMPROMISED AND CALLED FOR RESEARCH. DR. POSSIN AND SALIVE LOOKED AT CARE MODELS AND COORDINATED CARE. DR. LARSON AND DR. REUBEN LOOKED AT ABSENCE FOR CARE MODELS DUE TO THE INTERVENTIONS AND THE VARIATION IN CARE IN MODELS TO CREATE CHALLENGES IN GENERATING THEM AND IMPORTANT WAY FORWARD IS GENERATING EVIDENCE ON COLLABORATIVE CARE MODELS AND PAYMENT MODELS IN THE REAL WORLD SETTING. AND AMONG SEVERAL AREAS ONE CALLED FOR NEW RESEARCH THAT CARE MODELS THAT INTEGRATE ACUTE AND POST-ACUTE CARE SETTINGS IN THE CARE CONTINUUM. THIS IS IMPORTANT FOR ADDRESSING EQUITY AND INCLUSION ISSUES. OUR PANELISTS, CRUZ AND OTHERS LOOKED AT THE INSIGHT OF CARE FROM EXPERIENCING HESITATION AND APATHY TO KINDNESS AND CONNECTION AND EMPHASIZED WRAP SERVICES IN ONE LOCATION AND OPPORTUNITIES BY HISTORY TO VALUE-BASED SYSTEMS AND DESIRED OUTCOMES OF THOSE LIVING WITH DEMENTIA ACROSS THE DIFFERENT CARE SETTINGS. DR. NGUYEN LOOKED AT ACCESS UTILIZATION AND QUALITY AND DR. WALTERS AND COE LOOKED AT SOCIAL DETERMINATES OF HEALTH AND PARTICULARLY PLACE AND BARRIERS TO ACCESSING HEALTH INFORMATION, TECHNOLOGY AND POLICY AND DESIGN AS DRIVING MECHAN MECHANISMS OF DISPARITIES IN ACCESS OF QUALITY. WHERE ONE LIVES AFFECTS ACCESS AND USE OF HEALTH INFORMATION TECHNOLOGY AND WHAT INSURANCE PLANS ARE AVAILABLE AND SERVICES THEY HAVE ACCESS TO. THEY CALLED OUT THE GAP AND DATA LINKAGES ACROSS LOCAL STATE AND FEDERAL LEVELS AS WELL AS ACROSS HEALTH CARE SETTINGS THAT IF ADDRESSED WILL SUPPORT NEW RESEARCH ON SOCIAL DETERMINATES OF HEALTH ON HEALTH INFORMATION TECHNOLOGY AND THE ROLE OF POLICY INCLUSIVE OF POPULATIONS OFTEN EXCLUDED. OUR PANELISTS ADDED INSIGHT BY SUGGESTING RIGOROUS RESEARCH ON PLACE CAN HELP TARGET SCARCE HEALTH RESOURCES TO PERSONS LIVING WITH DEMENTIA AND PARTNERS AND HEALTH CARE AND SERVICE SETTINGS INCLUDING ADULT CARE CENTERS MORE LIKELY TO BENEFIT FROM THEM. DR. HEPBURN AND NECKA CO-CHAIRED SESSION FIVE AND FRAMED THE SESSION NOTING THE CURRENT STATE IS THERE IS NO COORDINATED CARE MODEL ACCESSIBLE TO MOST. FAMILY CARE COORDINATE WITHOUT SUFFICIENT SUPPORT. CARE GIVING NETWORKS ARE COMPLEX AND REFLECT THE COMPLEXITY IN FAMILY STRUCTURES AND RELATIONSHIP. THEY'RE HETEROGENOUS IN MANY CHARACTERISTICS AND IN THEIR ADVANTAGE AND DISADVANTAGE. DR. ROBERTO AND GAUGLER AND VAN HOUTVEN POINTED TO FAMILY INFLUENCING FAMILY CARE AND CALLED OUT A GAP IN RESEARCH ON RURAL CAREGIVERS. THEY POINTED TO A KEY ISSUE FOR RESEARCH STUDIES, HOW TO IDENTIFY EARLY STAGE OF INTERVENTION DESIGN TO FACILITATE LATER IMPLEMENTATION. THEY POINTED OUT THE COST OF CARE ANYTHING GIVING -- CAREGIVING AND LOOKING AT WHO IS MOST IMPACTED AND WHY USING METHODS TO IDENTIFY THE PATHWAYS WE NEED TO INFORM POSITION CHANGE OF CHANGE. SEVERAL HIGH PRIORITY RESEARCH AREAS WERE CALLED FOR INCLUDING NEW RESEARCH ON THE POLICIES AND PRACTICE IN THE PUBLIC HEALTH AND HEALTH CARE SYSTEMS AS WELL AS IN THE COMMERCIAL AND CORPORATE SECTORS EMPHASIZING THE RESEARCH SHOULD IDENTIFY THE POLICIES AND PRACTICES THAT SUPPORT CAREGIVER RESILIENCE AND SHOULD IDENTIFY THOSE THAT SUSTAIN INEQUITIES IN ACCESS TO SERVICES AND SUPPORT FOR OPPORTUNITIES FOR CHANGE. OUR PANELISTS RITA CHOULA AND CASSANDRA THOMAS AND JASON R RESENDEZ SPOKE ABOUT HOW FAMILIES ARE HIGHLY IMPACTED. THE CHALLENGES ARE DAILY AND HELP IDENTIFY RESOURCES AND EMPOWER CAREGIVERS. THE DISCUSSION CALLED ON MORE PERSONS WITHOUT CAREGIVERS AND PARTNERS AND WHO PROVIDES CARE FOR NEEDS AND SUPPORT. THANK YOU FOR YOUR ATTENTION TO MY CLOSING COMMENTS AND OVER TO ANDREA TO PREVIEW OUR FINAL DAY TOMORROW. >>WONDERFUL, THANK YOU, JULIE. THANK YOU EVERYONE FOR JOINING US TODAY AGAIN AND FOR YOUR PARTICIPATION. WE WILL RESUME TOMORROW AT 11:00 A.M. EASTERN STANDARD TIME AND BEGIN OUR DAY AGAIN FIRST WITH REMARKS FROM THE LIVED EXPERIENCE AND STAKEHOLDER ENGAGEMENT PANEL. WE'LL THEN HEAR FROM THE THREE SCIENTIFIC SESSIONS YOU SEE LISTED HERE, SESSION SIX FOCUSSED ON THE DEMENTIA CARE WORKFORCE, SESSION SEVEN WILL DISCUSS ECONOMIC IMPACTS AND IMPLICATIONS AND SECTION EIGHT LOOKING AT PARTICIPATORY RESEARCH AND DIVERSE RECRUITMENT AND RETENTION IN DEMENTIA CARE RESEARCH. LASTLY, I WANT TO HIGHLIGHT IF YOU HAVE QUESTIONS YOU WERE NOT ABLE TO ASK THROUGHOUT THE COURSE OF THE SUMMIT AND/OR HAVE INPUT YOU WOULD LIKE TO SHARE WITH SUMMIT PLANNERS AND THE NATIONAL INSTITUTE ON AGING, PLEASE JOIN US TOMORROW AT 4:00 P.M. EASTERN TIME. THIS WILL BE A POST-SUMMIT LISTENING SESSION AND WE WOULD VERY MUCH LOOK FORWARD TO HEARING YOUR QUESTIONS, COMMENTS AND IDEAS AND WE IN PARTICULAR WOULD LIKE TO ENCOURAGE THOSE WHO ARE LIVING WITH COGNITIVE SYMPTOMS AND OR FIND THEMSELVES AS CARE PARTNERS, CAREGIVERS, CARE ASSISTANTS TO THOSE WITH INDIVIDUALS WITH COGNITIVE SYMPTOMS. THAT IS POSTED IN THE CHAT WITH THE ZOOM INFORMATION SO YOU'LL BE ABLE TO JOIN US. THANK YOU AGAIN SO MUCH AND WE LOOK FORWARD TO SEEING EVERYBODY TOMORROW FOR DAY THREE.