>>WELCOME TO DAY 1 OF 3
SERVICES AND SUPPORTS FOR
DEMENTIA AND
CAREGIVERS AND SOME IS HOSTED BY
THE NATIONAL INSTITUTE ON AGING,
NATIONAL INSTITUTES OF HEALTH.
MY NAME IS JULIE AND I'LL BEEN
MY PRIVILEGE TO SERVE AS
CO-CHAIR WITH OVER THE NEXT THE
OVER ARCHING GOAL OF THE SUMMIT
IS TO PROVIDE COORDINATED
PLANNING EFFORTS IN RESPONSE TO
THE NATIONAL PLAN TO ADDRESS
ALZHEIMER'S DISEASE.
THE GOALS ARE ACCOMPLISHED BY
PROVIDING AN OPPORTUNITY FOR
RESEARCHERS, INDIVIDUALS WITH
LIVED EXPERIENCE AND THEIR CARE
PARTNERS AND OTHER STAKEHOLDERS
ACROSS DIVERSE SECTORS TO SHARE
PERSPECTIVES ABOUT THE SCIENCE.
AND IN THE COURSE OF THE
DIALOGUE AND INPUT THE GROUP
SUPPORTS THE GOALS BY
SUMMARIZING THE STATE OF THE
SCIENCE SINCE THE 2020 SUMMIT
AND IDENTIFYING HIGH PRIORITY
RESEARCH GAPS AND OPPORTUNITIES.
THAT CAN INFORM EFFORTS OF
FEDERAL AGENCIES, FOUNDATIONS
AND OTHER ENTITIES.
THE SUMMIT BENEFITS FROM INPUT,
EXPERTISE OF OUR STEERING
COMMITTEE AND PUBLIC INPUT AND
PANELISTS AND TWO IMPORTANT
PANELS THE LIVED EXPERIENCE
PANEL AND STAKEHOLDER ENGAGEMENT
PANEL.
FINALLY THROUGH AUDIENCE
QUESTION AND ANSWER THROUGH THE
SUMMIT EVENT.
THE SESSIONS ARE MADE POSSIBLE
BY OUR STEERING COMMITTEE WHO
SHARED THEIR TIME AND EXPERTISE.
WE'LL INTRODUCE YOU TO EACH OVER
THE COURSE OF THE SUMMIT.
AT THIS TAME WE WANT TO EXPRESS
OUR GRATITUDE TO HELEN WHO ED
IMPORTANT INPUT AND CONTINUITY
WITH OTHER EFFORTS.
SHE LEADS THE IMPLEMENTATION OF
THE NATIONAL ALZHEIMER'S
KINDNESS AND THE PLAN TO ADDRESS
ALZHEIMER'S DISEASE.
NOW I TURN IT OVER TO CO-CHAIR
ANDREA TO INTRODUCE THE PANELS
AND UPCOMING SESSIONS AND THEMES
AND FINALLY COVER LOGISTICS TO
SUPPORT YOUR INVOLVEMENT DURING
THE QUESTION AND ANSWER
SEGMENTS.
>>WELCOME, EVERYONE.
WE'RE SO THRILLED YOU'RE HERE
AND JOINING US FOR THE CARE AND
CARE GIVING SUMMIT.
WE'D LIKE TO THANK ALL THAT HAVE
CONTRIBUTED TO OUR PANELS
INCLUDING THE LIVED EXPERIENCE
PANEL WHICH HAS BEEN LED BY
MONICA MORENO AND GARY
EPSTEIN-LUBOW WITH SUPPORT FROM
CARRIE LANNIGAN.
THEY CONTRIBUTED TIME, EXPERTISE
AND SKILL IN CONVENING THE LIVED
EXPERIENCE PANEL FACILITATING
AND SUPPORTING THEIR
CONTRIBUTIONS AND ENGAGEMENT
THROUGHOUT THE SUMMIT PROCESS.
WE ALSO WANT TO RECOGNIZE
MEMBERS OF PANEL WHO GENEROUSLY
SHARED THEIR LIVED EXPERIENCES
THOSE LIVING WITH DEMENTIA OR
BEING CAREGIVERS OR PARTNERS TO
FAMILY MEMBERS OR FRIENDS LIVING
WITH DEMENTIA.
THEY PROVIDED IMPORTANT INSIGHT
INTO WHAT MATTERS MOST,
CHALLENGES AND APPROACH TO
LIVING WELL WITH DEMENTIA.
CHALLENGES RELATED TO SELECTING
HEALTH INSURANCE PLANS,
LOGISTICS AND FINANCIAL
CHALLENGES THAT RELATE TO
NAVIGATING HEALTH CARE DECISION
MAKING, EXPERIENCES WITH THE
HEALTH CARE CONTINUUM AND
SUPPORT SERVICES.
ADDITIONALLY OUR STAKEHOLDER
ENGAGEMENT PANEL HAS BEEN
INSTRUMENTAL IN THE SUMMIT
PROCESS.
THIS PANEL HAS BEEN LED BY HEIDI
GIL AND WITH THE CONTRIBUTIONS
OF PANEL MEMBERS THE STAKEHOLDER
ENGAGEMENT PANEL HAS BROUGHT
TOGETHER DIVERSE AND INSIGHTFUL
S FROM MULTIPLE SECTORS
INCLUDING HEALTH CARE ADVOCACY,
PUBLIC AND RESEARCH ENTITIES
AMONG OTHERS.
PANEL MEMBERS HAVE SHARED THEIR
UNIQUE EXPERIENCES ABOUT A
TOPICS INCLUDING STIGMA,
DIAGNOSIS, CAREGIVER SUPPORT AND
THE DEMENTIA CARE WORKFORCE.
THANK YOU TO MEMBERS OF THAT
PANEL.
I WANT TO TURN TO A PREVIEW OF
WHAT CAN YOU EXPECT.
EACH MORNING YOU'LL HEAR FROM
PANELS.
TODAY WE'LL ALSO HEAR REMARKS
FROM THE NATIONAL INSTITUTE ON
AGING WHICH WILL PROVIDE AN
OVERVIEW OF DEMENTIA CARE AND
CARE GIVING RESEARCH ACTIVITIES
AND EXAMPLES.
EACH DAY WE'LL ALSO HEAR
PRESENTATIONS FROM OUR EIGHT
SCIENTIFIC SESSIONS YOU SEE
LISTED HERE AND CAN FIND MORE
INFORMATION ABOUT THE SESSIONS,
THE PRESENTERS AND THE PANELISTS
OF THE SESSIONS AS WELL AS THE
CO-CHAIRS WHO LED THE
DEVELOPMENT OF EACH SESSION
ONLINE IN THE SUMMIT PROGRAM
BOOK.
WE WANT TO HIGHLIGHT THAT ACROSS
THE SUMMIT THERE ARE THREE OVER
ARCHING AND CROSS-CUTTING THEMES
WE MAY REFER TO.
THESE INCLUDE ATTENTION TO
PRACTICES OF INCLUSIVE SCIENCE
AND HEALTH EQUITY, CONSIDERING
WHAT MATTERS MOST TO THOSE
LIVING WITH DEMENTIA AND THEIR
CAREGIVERS AND/OR PARTNERS AND
FRAME WORKS THAT SUPPORT AND
ADVANCE THE UNDERSTANDING.
AND LASTLY CONSIDERATIONS FOR
STRENGTHENING RIGOR AND
REPRODUCIBILITY OF DEMENTIA CARE
AND CARE GIVING SCIENCE.
WE INVITE AND ENCOURAGE YOUR
PARTICIPATION.
I WANT TO HIGHLIGHT WAYS TO
PARTICIPATE OVER THE NEXT THREE
DAYS.
IF YOU JOINED THE SUMMIT VIA THE
NIH VIDEOCAST, WE WANT YOU TO
KNOW YOU CAN CLICK SEND LIVE
FEEDBACK IN ORDER TO SEND
QUESTIONS.
AND WE ENCOURAGE YOU TO SUBMIT
QUESTIONS THROUGHOUT THE SUMMIT.
IF YOU HAVE JOINED THE SUMMIT
VIA THE ZOOM WEBINAR, PLEASE
ENTER YOUR QUESTIONS INTO THE
ZOOM Q&A BOX.
AFTER EACH SCIENTIFIC SESSION WE
WILL HAVE AN OPPORTUNITY FOR
BOTH DISCUSSION AND FOR Q&A.
WHILE WE MIGHT NOT DUE TO TIME
CONSTRAINTS ANSWER EVERY
QUESTION SUBMITS OVER THE COURSE
OF THE SUMMIT, THE SUMMIT
STARING COMMITTEE, WHICH WAS
HIGHLIGHTED WILL REVIEW ALL
SUBMITTED QUESTIONS OVER THE
COURSE OF THE SUMMIT.
WE ALSO WANT TO ENCOURAGE YOU TO
FOLLOW ALONG ON SOCIAL MEDIA
USING THE HASH TAG DEMENTIA CARE
SUMMIT.
I WANT TO HIGHLIGHT AGAIN THE
MANY IMPORTANT CONTRIBUTORS WHO
MADE THE SUMMIT POSSIBLE AND
EXTEND OUR GRATITUDE FOR ALL THE
CONTRIBUTIONS INCLUDING YOU
JOINING US FOR THE NEXT THREE
DAYS FOR THE VERY IMPORTANT
EFFORT.
UP NEXT WE'LL HEAR FROM
FACILITATORS OF THE LIVED
EXPERIENCE PANEL, MONICA MORE
-- MORENO AND WE'LL HERE
REMARKS FROM THE NIA DIRECTOR,
AMY KELLEY AND A PRESENTATION
ABOUT DEMENTIA CARE AND RESEARCH
FROM DR. FAZIO.
THANK YOU.
>>GOOD MORNING, EVERYONE.
>>THANK YOU FOR THE INVITATION.
I'M I'M MAKING OPENING COMMENTS
WITH MY COLLEAGUE, DR. GARY
EPSTEIN-LUBOW AT PROFESSOR OF
PSYCHIATRY AT BROWN UNIVERSITY.
THE UNIVERSITY HAS HAD A LONG
HISTORY OF PEOPLE LIVING WITH
DEMENTIA AND CARE PARTNERS
INCLUDING PAST SUM MITS AND THE
COLLABORATIVE WHICH I
CO-FACILITATE A STAKEHOLDER
GROUP WITH GARY.
PAPERS HAVE BEEN WRITTEN AND THE
MODEL AND PRACTICES WERE
FOLLOWED TO CONVENE THE LIVED
EXPERIENCE PANEL.
NOW THE GOAL OF THE LIVED
EXPERIENCE PANEL WAS TO SOLICIT
INPUT AND FEEDBACK FROM
STAKEHOLDERS REGARDING THE
SUMMIT PLANS WITH THE PRIMARY
PURPOSE TO IDENTIFY UNMET
RESEARCH NEEDS AND IDEAS
INCLUDING THOSE FROM PEOPLE
LIVING WITH DEMENTIA AND CARE
PARTNERS.
THE LIVED EXPERIENCE PANEL
INCLUDED FOUR INDIVIDUALS WITH
EARLY STAGE COGNITIVE DISORDER
AND THREE CARE PARTNERS.
WE STRIVE TO CONVENE A GROUP
THAT REPRESENTED DIVERSE GROUPS
OF VARYING AGES AND DIAGNOSES TO
THOSE LIVING WITH DEMENTIA.
THIS IS AN OVERVIEW OF OUR TIME
LINE.
WE STARTED RECRUITMENT IN
OCTOBER OF LAST YEAR TO CONVENE
FOR TWO FEEDBACK SESSIONS ONE IN
DECEMBER LAST YEAR AND IN
JANUARY.
GARY AND I WERE THE
CO-FACILITATORS AND THERE WAS A
SUMMARY REPORT THAT WAS PREPARED
BY ROSE, MEAD AND ASSOCIATES ON
AVAILABLE ON THE WEBSITE.
I'LL HAND IT OVER TO GARY TO
GIVE A HIGH-LEVEL OVERVIEW OF
THE CONTENT OF THE REPORT.
>>THANK YOU, MONICA.
IT'S AN HONOR AND PLEASURE TO
HAVE COMPLETED THIS WORK WITH
YOU AND OUR TEAM AND IT'S ONE OF
THE HIGHEST JOYS OF MY JOB TO
SEE PEOPLE WITH LIVED EXPERIENCE
SPEAK FROM THEIR OWN VOICE SO
WONDERFUL TO SEE THIS IN THE
SUMMIT.
THE REPORT COVERS SEVEN AREAS
DISCUSSED BY PANEL MEMBERS.
THE SLIDE SHOWS THE FIRST FOUR.
THERE WERE MULTIPLE THEMES WHICH
RESULTED FROM EACH TOPIC BUT
ONLY A SELECT FEW WERE INCLUDED
ON THE SLIDES.
THERE WERE EXPRESSED DESIRES
FROM BOTH PEOPLE LIVING WITH
COGNITIVE SYMPTOMS AND
CAREGIVERS REGARDING MAINTAINING
INDEPENDENCE.
REGARDING THE CHALLENGE AND
BARRIERS TO LIVING WELL.
ONE KEY THEME WAS THE LOSS TO
SOCIAL RELATIONSHIPS AND
OVERCOMING BARRIERS ONE THEME
WAS THE IMPORTANCE OF INCREASING
ACCESS TO MULTIPLE FORMS OF
SUPPORT.
REGARDING THE NEED FOR RESEARCH
TO IMPROVE PROCEDURE SURROUNDING
SCREENING AND DIAGNOSIS THE
PANELIST DESCRIBED MULTIPLE
SITUATIONS IN WHICH THEY FELL
SHORT OF BASIC NEEDS FOR
GUIDANCE, SUPPORT AND CLINICAL
REFERRALS.
AFTER DIAGNOSIS PANELISTS
DESCRIBE DIFFICULTY WITH CARE
NAVIGATION AND ADAPTING CARE AS
ILLNESS PROGRESSED.
THE PANEL ADDRESSED ADVANCED
DISEASE AND END OF LIFE CARE.
THIS WAS A SENSITIVE AND RICH
DISCUSSION OVER SIMPLIFIED BY
THE NOTE THERE WAS STRONG
INTEREST IN THE GREATER HOME
BASE OF SUPPORTS INCLUDING
FINANCIAL SOLUTIONS TO ADDRESS
INCREASE IN CARE NEEDS.
PANELISTS LIVING WITH COGNITIVE
SYMPTOMS EXPRESSED WORRIES ABOUT
BECOMING BURDENSOME AND
CAREGIVERS IDENTIFIED
OPPORTUNITIES TO REDUCE BURDEN
THROUGH IMPROVED COMMUNICATION
REGARDING PLANS FOR END OF LIFE
CARE.
AND FINALLY THE TOPIC OF
PARTICIPATION IN RESEARCH WAS
DISCUSSED WITH MANY PANELISTS
DESCRIBING POSITIVE EXPERIENCES
AS A CLINICAL TRIAL PARTICIPANT
AND THERE WERE RECOMMENDATIONS
TO IMPROVE RECRUITMENT OUTREACH
THROUGH TRAVEL AND OTHER
LOGISTICS ENHANCEMENT.
PLEASE READ THROUGH THE FULL
LIVED PANEL REPORT.
IT'S MY PLEASURE TO INTRODUCE
DR. LES BURGER AND MEMBER OF THE
SUMMIT LIVED EXPERIENCE AND
FOLLOWING LES IS RITA HARRISON A
PERSON LIVING WITH COGNITIVE
SYMPTOMS.
IT'S BEEN A PLEASURE WORKING
WITH THEM AND THE MEMBERS OF THE
PANEL.
>>THANK YOU.
A VERY SPECIAL THANKS TO ALL OF
YOU IN THE AUDIENCE.
FOR YOU LADIES AND GENTLEMEN,
ARE THE TIP OF THE SPHERE IN
THIS FIGHT TO UNDERSTAND THIS
HORRENDOUS DISEASE.
I HOPE YOU'RE AS CAUGHT UP AS I
AM WITH THE SENSE OF URGENCY.
IT WAS ON NOVEMBER 3, 1906
DR. ALZHEIMER FIRST REPORTED HIS
FINDINGS OVER 116 YEARS AGO.
HERE WE ARE IN 2023 WITH
MILLIONS OF AMERICANS AFFLICTED
WITH SYMPTOMATIC ALZHEIMER'S AND
TENS OF MILLIONS CAUGHT UP IN
CARE GIVING AND ALL THE
STRUGGLES WE'RE ALL FAMILIAR
WITH.
AS FOR ME, I'M AN 82-YEAR-OLD
RETIRED PHYSICIAN WHO WALKED ARM
AND ARM WITH HIS BEAUTIFUL WIFE
OF 61 YEARS UNTIL SHE LOST HER
SEVEN-YEAR BATTLE WITH
ALZHEIMER'S IN 2021.
DURING THE EARLY STAGE OF HER
DISEASE I RETIRED TO BECOME A
FULL-TIME CAREGIVER.
AND BEING BLESSED WITH
RELATIVELY GOOD HEALTH AND BEING
FINANCIALLY SOUND WE DIDN'T FACE
MANY OF THE STRUGGLES SO MANY
OTHERS MUST DEAL WITH.
WHEN JULIE WAS IN THE EARLY
STAGE OF THE DISEASE, LIFE WAS
AS CLOSE TO NORMAL AS ONE COULD
HAVE HOPED FOR.
I COULD LEAVE HER ALONE FOR A
COUPLE HOURS.
SHE WAS STILL DRIVING.
SHE KNEW HOW TO USE HER PHONE.
SHE COULD MAKE A CUP OF COFFEE.
WITH AN ERASER BOARD AND POST-IT
NOTES EVERYWHERE WE MANAGED OUR
LIVES WITH LITTLE ASSISTANCE.
WE WERE ACTIVE WITH THE
ALZHEIMER'S ASSOCIATION IN
GETTING THE WORD OUT AND
EDUCATING AND FUND RAISING.
JULIE PARTICIPATED IN CLINICAL
TRIALS.
WE WERE DOING JUST FINE.
THEN THAT SLOWLY CHANGED.
YOU'LL HEAR ABOUT THE MANY
FRUSTRATIONS CAREGIVERS
EXPERIENCE.
FOR ME IT WAS SIMPLY THE
INABILITY TO FIX THE PROBLEM.
LIKE AN AGGRESSIVE METASTATIC
CANCER THAT NO LONGER RESPONDED
TO TREATMENT, THERE WAS LITTLE I
COULD DO.
COMFORT, YES.
FIX, NO.
WHETHER IT WAS EATING PROPERLY
OR PERSONAL HYGIENE OR JULIE'S
CHANGING PERSONALITY AND GROWING
PARANOIA, NO MATTER HOW MANY
BOOKS OR ARTICLES I READ, NO
MATTER HOW MANY SUPPORT GROUP I
ATTENDED OR PEOPLE I SPOKE WITH,
NOTHING SEEMED TO WORK VERY
WELL.
AS A DEAR FRIEND WHO TRIED TO
CONSOLE ME WOULD SAY, IT IS WHAT
IT IS.
SO MANY FRIENDS AND SURROUNDING
BY A SUPPORTIVE COMMUNITY, I
QUIETLY STRUGGLE TO CONTROL MY
FRUSTRATION AND AT TIMES MY
OVERFLOWING ANGER WITH JULIE AND
MYSELF, WITH GOD.
PERHAPS MY SECOND GREATEST
FRUSTRATION WAS EDUCATING THE
PUBLIC.
LOCAL, STATE AND FEDERAL LEADERS
AND THE HEALTH PROFESSIONAL.
YOU WOULD THINK THAT WITH ONE
AND 10 PEOPLE OVER 65 HAVING
ALZHEIMER'S DEMENTIA, EVERY
PRIMARY CARE PRACTITIONER WOULD
BE SURE TO ASSESS THEIR OLDER
PATIENT'S COGNITIVE FUNCTION IN
A QUALITATIVE WAY.
THAT WAS RECOMMENDED BY SOME
PROFESSIONAL SOCIETIES IT'S NOT
BEING ACCOMPLISHED AS WELL AS IT
SHOULD.
HOW DOES ONE LEARN ABOUT
COGNITIVE IMPAIRMENT, WHERE DOES
ONE GO TO SEEK HELP?
WHERE'S THE FINANCIAL SUPPORT TO
HELP LOCAL COMMUNITIES DEVELOP
THE PROGRAMS AND PEOPLE AND
RESOURCES NEEDED TO EASE THE
BURDEN.
AND SO LADIES AND GENTLEMEN, FOR
ME, YOU ALL ARE THE ANSWER.
UNTIL WE FIND THE CAUSE, AND
FIND AN EFFECTIVE TREATMENT AND
EVENTUALLY A CURE AND WAIT AND
WAY TO PREVENT IT YOU MUST MAKE
CARE BETTER.
HELP PUT ALZHEIMER'S DISEASE IN
THE REARVIEW MIRROR.
THANK YOU.
>>GOOD MORNING.
MY NAME IS RITA HARRISON.
I RESIDE IN KENTUCKY.
I'M 63 YEARS OLD AND I WAS
DIAGNOSED WITH MILD COGNITIVE
IMPAIRMENT AT THE AGE OF 58.
I AM NOW IN THE EARLY STAGES OF
ALZHEIMER'S DISEASE.
I'VE EXPERIENCED A GRADUAL
DECLINE IN THE LAST FIVE YEARS.
LAST FALL I WAS APPROVED TO
PARTICIPATE IN A CLINICAL TRIAL.
MY CAREGIVER IS MY HUSBAND JOE
AND TOGETHER WE'RE DEALING WITH
THE OUTCOMES OF THE ALZHEIMER'S
DISEASE IN OUR DAILY LIVES.
WHAT MATTERS MOST TO ME WHILE
DEALING WITH THIS DISEASE, FIRST
AND FOREMOST I WANT TO LIVE MY
LIFE TO THE FULLEST WHILE I
STILL HAVE MY COGNITIVE
ABILITIES, LIMITED THOUGH THEY
ARE.
TOO MANY PEOPLE LIVE IN DENIAL
WHEN THEY'RE FACED WITH WHAT I
AM FACING.
I HAVE A FRIEND WHO HAS
ALZHEIMER'S DISEASE AND SHE
CHOOSES TO KEEP IT A SECRET YET
HAS OBVIOUS SYMPTOMS.
ALL MY FRIENDS, FAMILY AND
ACQUAINTANCES AT ACHURCH ARE
FULLY AWARE OF MY PREDICAMENT
AND FROM THEM I DRAW THE SUPPORT
I NEED TO PRESS ON.
DEMENTIA IS NOT A DISEASE TO BE
ASHAMED OF, RATHER A DISEASE AS
A SOCIETY WE MUST LEARN TO
EMBRACE.
SECONDLY, I WANT TO HELP OTHERS
UNDERSTAND DEMENTIA AND
UNDERSTAND HOW TO HELP THOSE
LIVING WITH IT.
I WANT TO CHANGE THE STIGMA
ASSOCIATED WITH DEMENTIA.
THIS IS NOT A DISEASE FOR GRAY
HAIRED WOMEN AND MEN IN THEIR
80s.
IT'S NOT JUST ABOUT LOSS OF
MEMORY.
THE DECLINE IN THE COGNITIVE
PROCESS IMPACTS SO MUCH MORE
SUCH AS CONFUSION, ANXIETY,
COMPREHENSION AND TIME
MANAGEMENT WITH A SIMPLE EVERY
DAY TASK.
MANY PEOPLE IN THEIR 40s AND 50s
STILL WORKING AND RAISING KIDS
HAVE DEMENTIA.
IT'S IN OUR BACKDOORS NOT JUST
NURSING HOMES.
I HAVE ACTUALLY LOST SOME
FRIENDS DUE TO MY DIAGNOSIS
LIKELY BECAUSE THEY'RE
UNCOMFORTABLE BEING AROUND ME.
THEY DON'T KNOW WHAT TO SAY OR
TO THINK.
BUT I'M STILL ME.
ON THE OTHER HAND, I'VE GAINED A
NEW COMMUNITY OF FRIENDS WHO ARE
DEALING WITH THE SAME ISSUES
WHICH HAVE HAD A POSITIVE EFFECT
ON ME.
FINALLY BY SHARING MY
EXPERIENCES WITH QUALIFIED
HEALTH PROFESSIONALS, I HOPE I
CAN PLAY A SMALL PART IN FINDING
A CURE FOR THE FUTURE
GENERATIONS.
WHAT ARE MY PERSONAL GOALS FOR
DAILY LIVING?
I RETIRED FROM MY JOB BECAUSE I
OWNED UP TO THE FACT I WAS NOT
ABLE TO HANDLE THE STRESS OF
LEARNING NEW THINGS AND MEETING
DEADLINES BUT I DID NOT GIVE UP.
.
I HAVE CHOSEN A PATHWAY TO KEEP
ME FOCUSSED.
A PATHWAY TO MAKE ME FEEL LIKE
I'M STILL CONTRIBUTING AND A
PATHWAY TO MAKE ME FEEL GOOD
ABOUT MYSELF.
WHAT HAVE I DONE?
I WALK EVERY DAY.
I HAVE A SERVICE DOG.
SHE'S UNDERGOING TRAINING TO
ENSURE I DON'T GET LOST AS I
WALK THROUGH THE NEIGHBORHOOD.
SHE ALSO SUPPORTS ME
EMOTIONALLY.
HER NAME IS DOLLY PARTON.
I BEGAN TAKING PIANO LESSONS AT
THE AGE OF 63, NO LESS.
PIANO SOOTHES MY SOUL WHICH
HELPS ME WITH THE ANXIETY THAT I
CONSTANTLY EXPERIENCE WITH THIS
DISEASE.
I SPENT AS MUCH TIMES OUTDOORS
AS I CAN WORKING IN THE YARD,
GARDENING AND BASKING IN MOTHER
NATURE.
AT THE AGE OF 61 I STARTED
LEARNING THE SPANISH LANGUAGE
THROUGH AN APP ON MY PHONE.
I'VE RENEWED MY INTEREST IN
QUILTING AND BEADWORK.
ANOTHER WAY TO FOCUS MY
ENERGIES.
WHAT I HAVE ESTABLISHED, THESE
ARE AS MY PERSONAL GOALS I'M
LEARNING MANY NEW THINGS.
I REFUSE TO FEEL SORRY FOR
MYSELF.
I DO NOT WANT TO BE PITIED.
I HAVE BECOME RESILIENT.
ADHERING TO MY PERSONAL GOALS
HAS ALLOWED ME TO ADAPT AND
PERHAPS GROW DESPITE THE MANY
CHALLENGES.
I HAVE CHOSEN TO LIVE MY LIFE TO
THE FULLEST.
THANK YOU FOR LISTENING TO ME.
ENJOY THE REST OF THE SUMMIT.
>>THANK YOU TO THOSE MEMBERS OF
THE LIVED EXPERIENCE PANEL I'M
SURE I SPEAK FOR ALL OF US WHEN
WE'RE REMINDED OF THE SENSE OF
URGENCY AND INSPIRED BY THESE
REMARKS FROM RITA HARRISON AND
DR. LES BURGER.
I WANT TO TRANSITION NOW TO
WELCOMING REMARKS FROM NIA
DEPUTY DIRECTOR, DR. AMY KELLEY
AND FOLLOWING THAT REMARKS FROM
DR. ELENA FAZI O.
>>GOOD MORNING.
WELCOME, EVERYONE.
MY NAME IS AMY KELLEY.
I'M THE DEPUTY DIRECTOR AT THE
NATIONAL INSTITUTE ON AGING.
AND THERE'S AN INCREDIBLE
PROGRAM LINED UP AND THIS SUMMIT
RESONATES WITH ME PERSONALLY AND
PROFESSIONALLY.
AS A GERIATRICIAN AND PALLIATIVE
CARE PHYSICIAN AND RESEARCHER I
WORKED TO IMPROVE THE LIVES OF
PEOPLE WITH SERIOUS ILLNESS AND
SUPPORT FAMILIES AND CAREGIVERS.
AND WHY WE'RE ALL HERE TODAY.
OVER THE COURSE OF SUMMIT.
MILLIONS OF AMERICANS ARE LIVING
WITH DEMENTIA AND MILLIONS MORE
ARE PROVIDING CARE FOR THEIR
LOVED ONES.
ENSURING ALL OF THESE
INDIVIDUALS HAVE ACCESS TO THE
BEST POSSIBLE CARE AND THEIR
LOVED ONES HAVE WHAT THEY NEED
TO BE SUCCESSFUL IS A KEY
PRIORITY.
IN FACT, TWO GOALS OF THE
NATIONAL PLAN TO ADDRESS
ALZHEIMER'S DISEASE WHICH IS OUR
NATION'S BLUEPRINT FOR REDUCING
THE BURDEN OF ALZHEIMER'S AND
RELATED DEMENTIAS THE CENTER FOR
IMPROVING CARE FOR PEOPLE WITH
DEMENTIA AND WITH OTHER NIH
INSTITUTES AND CENTERS ARE
IMPROVING THE CARE AND CARE
GIVING.
IN PARTICULAR, FUNDING FOR NIA
HAS INCREASED SUBSTANTIALLY AND
THIS INCREASED FUNDING HAS
BENEFITTED DEMENTIA RESEARCH
ACROSS THE BOARD INCLUDING THE
WORK THAT'S FOCUSSED ON DEMENTIA
CARE AND CARE GIVING.
WHILE NIH HAS AND CONTINUES TO
MAKE SIGNIFICANT INVESTMENTS IN
THE CRITICAL AREAS, I'M
ESPECIALLY EXCITED THESE
INCREASES HAVE HELPED NIA TO
SUPPORT EARLY CAREER AND NEW
INVESTIGATORS.
AND THERE WERE NEW AND EARLY
YEAR RESEARCHERS AND EXCITED TO
WELCOME THE NEARLY 500 OF YOU
WHO IDENTIFIED AS NEW AND EARLY
CAREER FOLKS IN ATTENDANCE WITH
US TODAY.
SO NIA FUNDS HUNDREDS OF
CLINICAL TRIALS TO TEST NEW
INTERVENTIONS AIMED AT
PREVENTING AND TREATING
ALZHEIMER'S AS WELL AS IMPROVING
DEMENTIA CARE AND CARE GIVING.
NIA SUPPORTS MORE THAN 200
DEMENTIA CARE TRIALS WITH
PROMISING INTERVENTIONS ACROSS
THE SPECTRUM OF CARE SETTING AND
STAGES OF ILLNESS.
THAT BRINGS ME BACK TO WHY I'M
EXCITED TO BE HERE WITH YOU
TODAY.
MANY OF OUR INVESTMENTS HAVE
COME IN RESPONSE TO THE GAPS AND
OPPORTUNITIES THAT ARE
IDENTIFIED FROM INPUT PROVIDED
AT THE SUMMIT.
SO IN SHORT THIS SUMMIT IS
REALLY WHERE THE FUTURE
DIRECTIONS FOR DEMENTIA CARE AND
RESEARCH EMERGED.
AS WE CONSIDER THE FUTURE, IT'S
ALSO IMPORTANT WE DO SO THROUGH
THE LENS OF HEALTH EQUITY.
MANY OF MY TOP GOALS AS NIA
DEPUTY DIRECTOR REMOVAL AROUND
IMPROVING HEALTH EQUITY AND
UNDERSTANDING THE LIFE LONG
DIFFERENCES IN SOCIAL
EXPERIENCES AND ATTRACTING
TALENTED SCIENTISTS FROM THE
WIDEST RANGE OF DIVERSE
PERSPECTIVES TO THE FIELD OF
AGING AND DEMENTIA RESEARCH.
NIH IS DEEPLY COMMITTED TO THE
PRINCIPLES.
THROUGHOUT THE PLAN FOR THIS
SUMMIT WE STRIVE TO BE ENSURE A
WIDE RANGE OF INDIVIDUALS
IMPACTED BY INDIVIDUALS ARE
REPRESENTED HERE.
AND THE COMMUNITY OF STAKE
HOLDERS FOCUSSED ON ALL WE'LL
ONLY ACCOMPLISH MEANINGFUL AND
EFFECTIVE CHANGE BY INTEGRATING
THE BROADEST RANGE OF PROSPECTS
IN RESEARCH.
AND ENGAGING INDIVIDUALS FROM
UNDER SERVED AND UNDER
REPRESENTED BACKGROUNDS IN THE
ENTIRETY OF THE RESEARCH
PROCESS.
WE MUST KEEP THIS AT THE
FOREFRONT AS WE ENGAGE IN OUR
WORK DURING THE SUMMIT.
I KNOW FROM MY PROFESSIONAL
EXPERIENCES HOW IMPORTANT CARE
AND CARE GIVING ARE AND THE WORK
REQUIRE A TEAM CLINICIANS,
RESEARCHERS, ADVOCATES,
PROFESSIONAL CAREGIVERS AND
DEVOTED CARE PARTNERS AND AT THE
CENTER THOSE WHO ARE LIVING WITH
DEMENTIA.
YOUR INPUT WILL HELP INFORM THE
FUTURE OF DEMENTIA CARE AND
RESEARCH FOR YEARS TO COME.
AND I ACKNOWLEDGE THIS IS NOT A
TASK FOR THE FAINT OF HEART.
IT'S DIFFICULT, IT'S COMPLEX AND
IT'S NECESSARY.
SO I WANT TO EXPRESS MY
GRATITUDE TO ALL OF YOU TODAY,
TO THE ORGANIZERS WHO PUT IN
HOURS TO MAKE THE SUMMIT HAPPEN.
THANK YOU FOR COMING TOGETHER TO
DO THE WORK THAT'S NECESSARY TO
ENSURE THE DEMENTIA CARE OF THE
FUTURE MEETS THE NEEDS OF ALL.
>>THANK YOU, DR. KELLY.
-- KELLEY AND THANK YOU ALL FOR
BEING HERE.
I'M ELENA FAZIO IN THE DIVISION
OF BEHAVIORAL AND SOCIAL AT NIA.
I LOOK FORWARD TO SHARING WITH
YOU SOME OF THE IMPORTANT
DEMENTIA CARE AND CARE GIVING
RESEARCH THAT'S ADVANCED THE
FIELD IN RECENT YEARS AND TALK
ABOUT SIGNIFICANT NIA SCIENTIFIC
INVESTMENTS AND LOOK TO THE
FUTURE.
AFTER BRIEFLY TOUCHING ON
TRENDS, I'M GOING HIGHLIGHT A
FEW THEMES TODAY.
THAT IS NIA'S COMMITMENT TO
FACILITATING RIGOROUS
DEVELOPMENT AND SUPPORTING THE
DEVELOPMENT AND USE OF RICH DATA
INFRASTRUCTURE TO STUDY CARE AND
CARE GIVING AND OUR COMMITMENT
TO HEALTH COMMITTEE AND HEALTH
DISPARITIES INCLUDING EXAM
INNING THE LANDSCAPE FOR THOSE
LIVING WITH DEMENTIA AND CARE
PARTNERS.
WE KNOW THE WORDS WE USE MATTER
AND NOMENCLATURE.
YOU'LL HEAR ME REFER TO CARE
PARTNERS AND CAREGIVERS BY WHICH
I MEAN FAMILY AND OTHER UNPAID
CARE PARTNERS TO A PERSON LIVING
WITH DEMENTIA.
YOU'LL HEAR ME USE THE PHRASE,
PERSONS LIVING WITH DEMENTIA
INCLUDING THOSE LIVING WITH
COGNITIVE SYMPTOMS AND MILD
COGNITIVE IMPAIRMENT OR
DIAGNOSED ALZHEIMER'S DISEASE OR
DEMENTIA.
I'LL USE PATIENT WHEN THE
RESEARCHERS USE THAT LANGUAGE TO
REFER TO THOSE RECEIVE SERVICES
IN HEALTH CARE SETTINGS.
A GREAT DEAL OF NIA'S INVESTMENT
IS MANAGED BY THE DIVISION OF
BEHAVIORAL AND SOCIAL RESEARCH.
IT INCLUDES INTERVENTION STUDIES
AND OTHER RESEARCH SUCH AS
PROJECTS AIMED AT UNDERSTANDING
CAREGIVER WELL BEING, FAMILY AND
SOCIETAL COST OF CARE OR
DISPARITIES IN CARE ACCESS USE
OR QUALITY.
THIS PORTFOLIO OF DEMENTIA CARE
HAS BEEN PRODUCTIVE.
THESE AWARDS HAVE COLLECTIVELY
PUBLISHED MORE THAN 2,000
RESEARCH ARTICLES AND OTHER
PUBLICATIONS.
THE NIA MISSION INCLUDES
SUPPORTING AND FACILITATING
INTERVENTION RESEARCH TO
DETERMINE WHAT WORKS, WHY, FOR
WHOM AND UNDER WHAT
CIRCUMSTANCES.
IT IS ALSO IMPORTANT TO CONSIDER
IMPLEMENTATION AND REAL WORD
CONTEXT WITH THE IMPLEMENTATION
OF DEVELOPMENT.
SOME OF THE MOST COMMON TOPICS
OF INTERVENTION STUDIES INCLUDE
THESE YOU SEE HERE.
FOR EXAMPLE, INTERVENTIONS
FOCUSSED ON IMPROVING DEMENTIA
CARE WELL BEING AND
INTERVENTIONS ON ADDRESSING THE
SYMPTOMS OF PERSONS LIVING WITH
DEMENTIA.
MOST PROJECTS ARE INVESTIGATOR
INITIATED BUT A GOOD PORTION ARE
IN RESPONSE TO TARGETED FUNDING
OPPORTUNITIES, NOTICES MUCH
SPECIAL INTEREST OR CALLS FOR
PILOT STUDIES FROM CENTERS.
THE BASIC MAJORITY TAKE PLACE IN
THE COMMUNITY AND A NUMBER
HAPPEN IN ASSISTED LIVING
FACILITIES OR NURSING HOMES.
PRIMARY CARE SETTINGS HAVE
EMERGED AS AN INTERVENTION
DELIVERY AS WELL AND WE'LL HEAR
IN SOME PRESENTATIONS ABOUT THE
POTENTIAL FOR MORE WORK TO BE
DONE IN PRIMARY CARE AS WELL AS
OTHER MEDICAL SETTINGS.
THE MAJORITY OF INTERVENTIONS
ARE DIRECTED AT PAID FAMILY CARE
GIVES OR THE CARE WORKFORCE IN
YELLOW OR A CAREGIVER AND PERSON
LIVING WITH DEMENTIA AS A DIAD
IN ORANGE.
NIA SUPPORTS INTERVENTION
DEVELOPMENT IN LINE WITH THE NIA
STAGE MODEL.
PREVIOUS CARE SUMMITS AND
NATIONAL ACADEMIES CONSENSUS
PANEL POINT TO THE NEED FOR
RIGOROUS INTERVENTION
DEVELOPMENT.
WITHOUT UNDERSTANDING THE KEY
COMPONENTS OF AN INTERVENTION,
SCALING UP OR ADAPTING AN
INTERVENTION IN A VARIETY OF
REAL WORLD SETTINGS IS
DIFFICULT.
WE OFTEN DO NOT KNOW WHY A
MULTI-COMPONENT INTERVENTION
WORKS OR DOESN'T WORK.
NIA HAS BEEN STRENGTHENING AND
EXPANDING THE INFRASTRUCTURE TO
SUPPORT INTERVENTION DEVELOPMENT
IN ACCORDANCE WITH THE NIA STAGE
MODEL.
YOU'LL HEAR MORE ABOUT THE KEY
CROSS CUTTING THEME THROUGHOUT
THE SUMMIT.
WE CURRENTLY HAVE FOUR DEMENTIA
CARE AND CARE GIVING
TRANSLATIONAL RESEARCH CENTERS
WHICH FUND PILOT INTERVENTION
STUDIES IN ACCORDANCE WITH A
STAGE MODEL.
NIA PUBLISHED FUNDING
OPPORTUNITIES TO CONTINUE AND
EXPAND THE ALZHEIMER'S DISEASE
FOCUSSED ROYBAL CENTERS AND I'LL
ILLUSTRATE THE TYPE OF RESEARCH
BEING DONE AT DIFFERENT STAGES.
POOR SLEEP IS A DOCUMENTED
PROBLEM FOR MANY PEOPLE LIVING
WITH DEMENTIA AS WELL AS FOR THE
CAREGIVERS WHO LIVE WITH THEM.
IN THIS EXAMPLE, INVESTIGATOR,
DR. SUNG, STARTED WITH STAGE 1
WORK IN A CAREER DEVELOPMENT
AWARD TO AND PILOT THE NIGHTTIME
INSOMNIA TREATMENT AND EDUCATION
ALZHEIMER'S DISEASE AS A DIAD
AND RECEIVED A RESEARCH GRANT TO
DO STAGE 2 WORK INVOLVING
EFFICACY TESTING UNDER IDEAL
CONDITIONS.
EVEN IN THE EARLY STAGES THEY
SHOULD THINK OF IMPLEMENTABILITY
IN REAL WORLD SETTINGS.
UNDERSTANDING WHAT THE KEY
COMPONENTS ARE AND ENSURING TRE
TRAINING IS CLEAR SO
INTERVENTION CAN BE PROVIDED BY
LATE PROVIDERS.
THE STAGE 2 CLINICAL TRIAL IS
ONGOING.
THIS EXAMPLE INCLUDES ASPECTS OF
STAGE 1 AND STAGE 4 WORK.
NIH STAGE MODEL IS NOT LINEAR.
ADAPTATION AND TESTING FIDELITY
AND DETERMINING THE INGREDIENTS
CAN HAPPEN THROUGHOUT
DEVELOPMENT.
THEY CONDUCTED STUDIES THAT
BUILD ON EACH OTHER TO TEST THE
ALIVIADO PROGRAM FOR HOSPICE AND
PALLIATIVE CARE.
FINDINGS UNDER THE STAGE 4
PRAGMATIC TRIAL BEING CONDUCTED
IN 25 HOSPITAL CARE AGENCIES TO
TEST THE EFFECTIVENESS OF THE
INTERVENTION WHILE ALSO
ASSESSING ISSUES OF SCALING UP
AND SUSTAINABILITY.
THE WORK IS ONGOING AS WELL.
IN ANOTHER EXAMPLE OF
INTERVENTION RESEARCH ALIGNED
WITH THE STAGE MODEL, I'LL
HIGHLIGHT A STAGE 4 AND 5
SUCCESS STORY.
STAGE 5 EXAMINES IMPLEMENTATION
ACROSS SETTINGS.
STUDIES OF THE UCLA ALZHEIMER'S
AND DEMENTIA CARE PROGRAM LED BY
DR. RUBEN DEMONSTRATED POSITIVE
OUTCOMES FOR PATIENTS AND
CAREGIVERS.
THE ALZHEIMER'S AND DEMENTIA
CARE PROGRAM IS A COMPREHENSIVE
MODEL RECOGNIZING CARE IS A LONG
JOURNEY AND MEMBERS OF THE DIAD
NEED SERVICES AND SUPPORTS.
THE PROGRAM IS BASED IN A HEALTH
SYSTEM BUT INCORPORATES
MEANINGFUL TIES TO
COMMUNITY-BASED ORGANIZATIONS.
AND SPECIALISTS WHO ARE
TYPICALLY NURSE PRACTITIONERS OR
PHYSICIAN ASSISTANTS ARE A KEY
FEATURE AND CO-MANAGE CARE WITH
OTHER PROVIDERS AND THE TEAM
AFTER ONE YEAR OF THE PROGRAM,
BEHAVIORAL AND DEPRESSIVE
SYMPTOMS DECREASED FOR PERSONS
LIVING WITH DEMENTIA AND
DISTRESS, STRAIN AND SYMPTOMS
DECREASED FOR CAREGIVERS.
IN ADDITION TO THE POSITIVE
OUTCOMES FOR CAREGIVERS AND
THOSE LIVING WITH DEMENTIA.
AN EXTERNAL EVALUATION FOUND
DECREASES AMONG THE TYPES OF
CARE WE HOPE TO PROVIDE.
I SHOULD SAY WE HOPE TO AVOID.
SUCH AS HOSPITALIZATIONS AND
E.R. VISITS WHICH LOWERED
MEDICARE COST AND FOUND AN
INCREASE IN HOSPICE USE IN THE
LAST SIX MONTHS OF LIFE.
WITH THE IMPROVED OUTCOMES AND
COST SAVINGS THE TEAM TURNED
TOWARDS DISSEMINATION EFFORTS.
NIA PROVIDED FUNDING FOR A
PRAGMATIC TRIAL TO STUDY
DISSEMINATION OF THE PROGRAM TO
FOUR HEALTH SYSTEM SITES.
THESE EARLY ADOPTER SITES HAD
LESSONS LEARNED AND THREE
ELEMENTS ROSE TO THE TOP AS
IMPORTANT FACILITATORS.
ENGAGEMENT FROM SITE LEADERS,
THE MULTI-FASETED ROLES OF
EXPERTS AND PAYMENT MODELS TO
COVER THE SERVICE AND PATH TO
SUSTAIN THE MODEL INTO THE
FUTURE.
YOU'LL HEAR A LITTLE BIT MORE
ABOUT THE CARE LATER IN THE
SUMMIT.
THE JOHN A. HARTFORD FOUNDATION
DISSEMINATES THE PROGRAM TO MORE
SITES ACROSS THE U.S.
THE TEAM CREATED TECHNICAL
ASSISTANCE RESOURCES TO DO THE
DISSEMINATION WORK.
THE PROGRAM HAS BEEN IMPLEMENTED
IN 18 SITES TO DATE AND PLAN TO
EXPAND BY END OF 2025 REACHING
TENS OF THOUSANDS LIVING WITH
DEMENTIA AND THEIR CARE
PARTNERS.
ONE OF THE FLAGSHIP INVESTMENTS
IS A COLLABORATIVE TO CONDUCT
EMBEDDED TRIALS WITHIN HEALTH
CARE SYSTEMS.
THE WORD MEANS THE INTERVENTIONS
ARE BUILT AND TESTED IN REAL
WORLD SETTINGS USING EXISTING
WORK FLOWS AND ELECTRONIC
RECORDS AND STAFFING IN PLACE
WHICH MEANS THE INTERVENTIONS
ARE MORE LIKELY TO BE SCALABLE
AND IMPLEMENTABLE AND OF COURSE
SUSTAINABLE.
THE IMPACT COLLABORATORY
PROVIDES TRAINING, FUNDING,
KNOWLEDGE REPOSITORY AND
PARTNERSHIPS WITH SYSTEMS ACROSS
THE U.S.
THE TRIAL FUNDING AND RESOURCES
ARE IN ALIGNMENT WITH THE NIH
STAGE MODEL.
THESE ARE EXAMPLE GUIDES FOR
INVESTIGATORS DOING PRAGMATIC
CLINICAL TRIALS.
BEST PRACTICES FOR INTEGRATING
HEALTH EQUITY CONSIDERATIONS.
IMPACT COLLABORATORY
INVESTIGATORS PROVIDE
CONSULTATIONS, TRAINING AND
CAREER DEVELOPMENT SUPPORT.
ALL OF WHICH SERVE TO GROW
EXPERTISE IN THE FIELD AND
PROVIDE TRANSPARENT PUBLICLY
AVAILABLE RESOURCES.
ONE IMPACT COLLABORATIVE
INITIATE IS THE LONG-TERM CARE
COOPERATIVE THE LARGEST DATABASE
OF ELECTRONIC HEALTH RECORD DATA
FROM NURSING HOMES IN THE U.S.
THE LTC HAS A MISSION TO IMPROVE
THE QUALITY OF CARE IN NURSED
FACILITIES BY COMPILING THE DATA
ON NURSING HOME RESIDENTS
NATIONWIDE.
HALF OF WHOM ARE LIVING WITH
DEMENTIA TRANSLATE THE DATA INTO
INFORMATION THAT IS ACCESSIBLE
AND ACTIONABLE.
THEY HAVE EXCEEDED THEIR
ORIGINAL GOAL TO INCLUDE 100
NURSING HOMES.
CURRENTLY THERE'S ABOUT 2,000
NURSING HOMES INCLUDED WHICH
REPRESENTS MORE THAN 180 NURSING
HOME CHAINS.
WE'RE EXCITED TO SEE THIS SERVE
AS AN INVALUABLE RESEARCH THAT
ENABLES RESEARCHERS TO GENERATE
EVIDENCE ON CARE PRACTICES ON
THOSE LIVING WITH DEMENTIA IN
NURSING HOMES.
THIS RESOURCE ENABLES TIMELY
INVESTIGATIONS OF THE IMPACT OF
THE COVID-19 ON THE NURSING HOME
POPULATION.
EARLIER ON IN VACCINATION
DEVELOPMENT, IMPACT
COLLABORATORY INVESTIGATORS WERE
ABLE IT SHOW DECREASED COVID-19
INCIDENTS FOR BOTH VACCINATED
AND UNVACCINATED NURSING HOME
RESIDENTS DEMONSTRATING REAL
WORLD EFFECTIVENESS OF THE mRNA
BASED VACCINES IN THIS IMPORTANT
POPULATION.
IN ANOTHER STUDY, INVESTIGATORS
SHOWED THE mRNA BASED VACCINES
WERE LIKELY LIFE SAVING FOR
THOSE RESIDENTS.
AND THIS UNDER SCORED THE VALUE
OF HAVING AN ANALYTIC
INFRASTRUCTURE TO SUPPORT NEAR
REAL TIME MONITORING OF ADVERSE
EVENTS, SAFETY AND EFFICACY
DURING RAPID EARLY VACCINE
DEPLOYMENT SUPPORTED IN PART BY
THE CENTERS FOR DISEASE CONTROL
AND PREVENTION TO INFORM THEIR
ADVERSE EVENT MONITORING.
ANOTHER CRITICAL AREA OF
INVESTMENT IS SUPPORTING THE
DEVELOPMENT AND USE OF DATA
RESOURCES THAT ENABLE DEEPER
INSIGHT INTO DEMENTIA CARE AND
CARE GIVING SUCH AS FINDINGS
THAT CAN HELP CHARACTERIZE THE
CARE LANDSCAPE AND POINT TO THE
TYPES OF PROGRAMS, SERVICES AND
INTERVENTIONS THAT ARE STILL
NEEDED.
ONE OF THE BEST NIA FUNDED
SOURCES OF PERSONS WITH DEMENTIA
IS THE STUDY AND PARTNER STUDY
OF THOSE PARTICIPANTS.
THAT'S CALLED THE NATIONAL STUDY
OF CARE GIVING.
WE CALL THIS NSOC AND THE
CONTENT MAKES IT SUITED TO STUDY
CARE GIVING IN THE OLDER ADULT
POPULATION AND AMONG THOSE
LIVING WITH DEMENTIA.
NIA FUNDED INFRASTRUCTURE SUCH
AS NHATS AND NSOC ARE A PUBLICLY
AVAILABLE RESOURCE FOR ANY
RESEARCHERS TO USE.
THESE ARE JUST A HANDFUL OF
RESEARCH ARTICLES PUBLISHED IN
2022 BY THIRD-PARTY
INVESTIGATORS.
MANY OF WHOM ARE ALSO FUND NIA.
A FEW OF WHICH ARE FROM AUTHORS
YOU'LL HEAR FROM LATER IN THE
SUMMIT.
THE WEBSITE FEATURES
PUBLICATIONS USING THE DATA.
SPEAKING OF WHICH, COLLEAGUES
USED THE DATA TO SHOW PERSONS
LIVING WITH DEMENTIA RECEIVED
DOUBLE THE TOTAL CARE HOURS PER
WEEK THAN THOSE WHO DID NOT
RECEIVE PAID CARE.
60% WERE FROM UNPAID FAMILY AND
OTHER CAREGIVERS WHICH INDICATE
THAT PAID CARE IS NOT REPLACING
FAMILY CARE GIVING FOR THE
POPULATION.
FINDINGS IN ONE STUDY FROM
HARRIS AND COLLEAGUES USING DATA
SUGGESTS CARE PARTNERS OF THOSE
LIVING WITH DEMENTIA ENROLLED IN
HOSPICE HAD LESS ANXIETY AND
BETTER VIEWS OF THEIR LOVED
ONE'S CARE OF END OF LIFE AND
FEWER CARE TRANSITIONS COMPARED
TO CARE PARTNERS OF INDIVIDUALS
WITH DEMENTIA NOT ENROLLED IN
HOSPICE.
THIS ENSURES ACCESS TO CARE FOR
THE GROWING POPULATION OF
PERSONS LIVING WITH DEMENTIA.
RATES OF HOSPICE USE AMONG THOSE
LIVING WITH DEMENTIA INCREASED
SUBSTANTIALLY BETWEEN 2004 AND
2016.
AND ALMOST HALF OF ALL HOSPICE
PATIENTS HAD A PRIMARY OR
SECONDARY DIAGNOSIS OF DEMENTIA.
HOSPICE PROVIDERS AND AGENCIES
HAVE HAD TO ADAPT TO UNIQUE
NEEDS OF THIS GROWING
POPULATION.
FINALLY, DATA FROM THE HEALTH
AND RETIREMENT STUDY TO
INVESTIGATE DISPARITIES IN
ACCESS TO CARE.
BLACK AND AFRICAN AMERICAN
LIVING WITH DEMENTIA HAS LOWER
RATES OF ADVANCED CARE
DIRECTIVES AND LATINEX AND
AFRICAN AMERICANS WERE MORE
LIKELY TO HAVE A
HOSPITALIZATION.
THE STUDIES ARE EXAMPLES OF
IMPORTANT NIA FUNDED WORK USING
RESOURCES THAT CHARACTERIZE
HOSPICE CARE OF THOSE LIVING
WITH DEMENTIA.
IT CAN POINT TO THE NEED FOR
INTERVENTION DEVELOPMENT SUCH AS
THE RESEARCH THAT BRODY AND
COLLEAGUES ARE DOING AND THE
PREVIOUSLY NOTED PROGRAMS FOR
HOSPICE AND PALLIATIVE CARE.
UNDERSTANDING THE SOCIAL
DETERMINATES OF HEALTH IS AN NIA
PRIORITY AND GROWING PRIORITY
FOR MANY RESEARCH FUNDERS.
OUR STRATEGY GOALS INCLUDE
UNDERSTANDING HOW SOCIAL AND
ECONOMIC FACTORS THROUGHOUT THE
LIFE SPAN AFFECT HEALTH AND WELL
BEING AND RESEARCH TO UNDERSTAND
THE ENVIRONMENTAL AND SOCIAL AND
CULTURAL BEHAVIORAL AND
BIOLOGICAL FACTORS THAT
CONTRIBUTE TO AND SUSTAIN HEALTH
DISPARITIES AMONG OLDER ADULTS
INCLUDING THOSE LIVING WITH
DEMENTIA AND THEIR CARE PARTNERS
IS OF CRITICAL IMPORTANCE.
ONE SOCIAL DETERMINANT OF HEALTH
IS THE ACCESS TO HIGH QUALITY
CARE.
WITHIN THE HEALTH SYSTEM, BOTH
PROVIDER-LEVEL BEHAVIORS AND
SYSTEM-LEVEL CHARACTERISTICS MAY
CONTRIBUTE TO HEALTH DISPARITIES
AND DISPARITIES IN CARE, ACCESS
AND USE.
RESEARCH SUGGESTS LIKE OF ACCESS
TO PRIMARY CARE IS ASSOCIATED
WITH GREATER RISK OF COGNITIVE
IMPAIRMENT AND SYSTEM LEVEL
FACTORS SUCH AS ACCOUNTABLE CARE
ORGANIZATIONS AND STAFF TURNOVER
RATES ARE ASSOCIATED WITH
QUALITY OF CARE FOR VULNERABLE
OLDER ADULTS.
ACCOUNTABLE CARE ORGANIZATIONS
OR ACOs USE CARE PAYMENT MODELS
THAT PAY FOR HIGH QUALITY CARE
PERFORMANCE RATHER THAN THE
QUANTITY OF SERVICES.
NIA HAD A WORKSHOP TO UNDERSTAND
THE NEED OF THOSE LIVING WITH
DEMENTIA AND PRIORITIES INFORMED
OUR SUBSEQUENT EFFORTS.
WE'VE LAUNCHED RESEARCH
INITIATIVES FOCUSSED ON HOW
VARIATIONS IN SOCIAL HEALTH CARE
AND LABOR MARKET POLICIES OR
BARRIERS TO TREATMENT IMPACT
DISPARITIES IN DEMENTIA CARE AND
CARE GIVING.
FOR EXAMPLE, IN A STUDY
SURVEYING THE PARTICIPANTS OF
THE UNDERSTANDING AMERICA STUDY
WHO WERE 65 OR OLDER, JACOBSON
AND COLLEAGUES FOUND THOSE IN
MEDICARE ADVANTAGE PLANS WERE
MORE LIKELY TO REPORT HAVING AN
ANNUAL WELLNESS VISIT THAT
INCLUDED COGNITIVE ASSESSMENT
THAN THOSE ENROLLED IN FEE FOR
SERVICE MEDICARE.
YOU'LL HEAR MORE ABOUT THIS
STUDY DURING SESSION SEVEN.
THIS ADDRESSES SESSIONS WITH
REAL LIFE IMPACT ON THOSE LIVING
WITH DEMENTIA.
HOW CAN WE INCREASE PRACTICES
SUCH AS ANNUAL WELLNESS VISITS.
IN ANOTHER EXAMPLE, WE SUGGEST
THE INCENTIVES FOR CARE
COORDINATION AND THE ACCOUNTABLE
CARE ORGANIZATIONAL FRAMEWORK
MAY BEING PROMISING SYSTEM LEVEL
MECHANISMS BY WHICH TO MITIGATE
DISPARITIES IN PREVENTIBLE
EMERGENCY DEPARTMENT VISITS FOR
THOSE LIVING WITH DEMENTIA.
FUTURE NIA DIRECTION AND
RESEARCH ON THE HEALTH CARE
LANDSCAPE AS A SOCIAL
DETERMINATE OF HEALTH INCLUDES
STIMULATING RESEARCH ON STATE
AND REGIONAL POLICIES AND
PRACTICES INCREASE DEMENTIA CARE
COORDINATION ACROSS SETTINGS AS
WELL AS A CONSORTIUM FOR
ECONOMIC RESEARCH ON DEMENTIA
CARE AND THE NATIONAL SURVEY TO
UNDERSTAND HOW CHARACTERISTICS
OF PROFESSIONAL CARE PROVIDERS
AND INSTITUTIONS LEAD TO
VARIATIONS IN CARE PROVIDED TO
THOSE LIVING WITH DEMENTIA AND
THEIR CARE PARTNERS.
BURY CLOSE, I WANT TO INVITE YOU
TO USE PUBLICLY AVAILABLE
RESOURCES THAT PROVIDE
INFORMATION ON FUNDED AWARDS AND
PROJECTS.
THE INTERNATIONAL ALZHEIMER'S
AND RELATED DEMENTIA RESEARCH
PORTFOLIO, THE NIA RESEARCH
IMPLEMENTATION MILESTONES AND
THE NIH PROJECT REPORTED
WEBSITES HAVE SEARCHABLE
INFORMATION ABOUT PROGRESS IN
THIS AREA.
AND JUST LAST WEEK NIA PUBLISHED
A BLOG POST WITH THE NIA STAGE
MODEL.
THERE ARE MANY OPPORTUNITIES
AVAILABLE TO SUPPORT DEMENTIA
CARE AND RESEARCH.
THESE LENGTHS INCLUDE
OPPORTUNITIES FOR DEMENTIA CARE
AND CARE GIVING INTERVENTION
DEVELOPMENT STUDIES.
THE LATEST FALL FOR THE
ALZHEIMER'S DISEASE AND
ALZHEIMER'S DISEASE RELATED
DEMENTIAS ROYBAL CENTERS AND THE
REAL WORLD DATA PLATFORM TO AIM
TO TRANSFORM THE ALZHEIMER'S
DISEASE RESEARCH ENTERPRISE BY
PROVIDING A DATA INFRASTRUCTURE
AS A SERVICE TO THE RESEARCH
COMMUNITY.
THE NIA FUNDING OPPORTUNITIES
INCLUDE SCIENTIFIC CONTACTS TO
ANSWER MORE QUESTIONS AND THE
ROYBAL CENTER AND COLLABORATORY
OFFER FUNDING IN ACCORDANCE WITH
A STAGE MODEL.
NIA IS COMMITTED TO ADDRESSING
THE PLANS TOWARDS ALZHEIMER'S
DISEASE.
I HIGHLIGHTED ASPECTS OF THE
WORK FACILITATING RIGOROUS
INTERVENTION DEVELOPMENT,
SUPPORTING THE DEVELOPMENT AND
USE OF ROBUST DATA RESOURCES
THAT ENABLE ANALYSES AND THE
LANDSCAPE AND THE NIA AND OTHER
ORGANIZATIONS AND RESEARCHERS,
MANY OF WHOM ARE IN THE AUDIENCE
AND ON THE AGENDA HAVE DONE A
TREMENDOUS AMOUNT OF WORK AND
HAVE MORE TO DO.
I'LL NOW TURN IT BACK TO DR
DR. GILMORE-BYKOVSKYI.
>>AS WE INVESTIGATION TO OUR
FIRST SCIENTIFIC SESSION TO
AGAIN HIGHLIGHT THE WAYS YOU CAN
PARTICIPATE THROUGHOUT THE
SUMMIT.
FIRST, WHILE THE SUMMIT IS BEING
BROADCAST LIVE IT'S ALSO GOING
TO BE RECORDED AND WILL BE
PUBLICLY AVAILABLE AFTER THE
EVENT.
IF YOU ARE ON THE NIH VIDEOCAST,
YOU CAN CLICK THE SUBMIT LIVE
FEEDBACK TO SUBMIT A QUESTION
AND IF YOU JOINED US ON THE ZOOM
WEBINAR USE THE Q&A BOX TO
SUBMIT YOUR QUESTIONS.
WITH NO FURTHER ADO, I'LL
THRILLED TO MOVE US TO OUR FIRST
SCIENTIFIC SESSION, WHAT MATTERS
AND LIVING WELL WITH DEMENTIA
CHAIRED BY DR. BENNETT AND BASAL
ELDADAH.
>>IT'S A PLEASURE TO BE HERE
AND FOCUS ON WHAT MATTERS TO
PEOPLE LIVING WITH ALZHEIMER'S
DISEASE AND RELATED DEMENTIAS.
I HAVE A FEW REMARKS DR. ELDADAH
HAVE FOR THE PRESENTATIONS.
PERS
PERSON-CENTERED CARE IS
RECOGNIZED AS THE KEY TO GOOD
DEMENTIA CARE.
CARE HAS BEEN BASED ON WHAT A
CLINICIAN THINKS IS IMPORTANT
WITH LITTLE INPUT THE
INDIVIDUALS RECEIVING CARE.
RESEARCH ON PERSON-CENTERED CARE
IS FOCUSSED ON IMPROVING THE
LIVES OF PEOPLE LIVING WITH
DEMENTIA.
WE SEEK TO IDENTIFY WHAT MATTERS
MOST TO THOSE LIVING WITH
DEMENTIA AND THEIR CARE
PARTNERS.
ONE IMPORTANT AREA IS LIVING
WELL WITH DEMENTIA.
SO SOME OF THE MOST IMPORTANT
THINGS IN LIFE ARE DIFFICULT TO
MEASURE OR JUST NOT SUITED TO
MEASUREMENT AT ALL.
WE NEED TO BE AS CREATIVE AS
POSSIBLE TO DEVISE FEASIBLE WAYS
TO MEASURE THE IMPORTANT
CONCEPTS.
WE NEED HIGH-QUALITY MEASUREMENT
TOOLS TO EVALUATE THE BENEFITS
AND HARMS OF NEW INTERVENTIONS.
SO WE'RE INTERESTED IN THE
VALIDITY OF THE MEASURE.
DOES THE TOOL MEASURE WHAT'S
IMPORTANT AND DOES IT MEASURE
WHAT WE DESIGN IT TO MEASURE?
WE'RE ALSO INTERESTED IN
RELIABILITY.
DOES THE TOOL MEASURE THINGS
CONSISTENTLY OVER TIME.
WE CAN IDENTIFY IMPORTANT TOPICS
OR CONCEPTS OF INTEREST IN MANY
WAYS.
THIS INCLUDES SEEKING INPUT FROM
INTERESTED PARTIES SUCH AS
PERSONS LIVING WITH DEMENTIA AND
THEIR CARE PARTNERS AND DECIDING
ON THE APPROACH TO THAT TOPIC.
FOR EXAMPLE, USING A
STRENGTH-BASED MODEL.
WE THEN HAVE THE CHALLENGE OF
CREATING VALID AND RELIABLE
MEASUREMENT TOOLS SO WE'RE ABLE
TO ASSESS THE IMPORTANT CONCEPTS
IN STUDIES.
SO YOU'LL SEE THIS DYNAMIC
BETWEEN IDENTIFYING IMPORTANT
CONCEPTS AND FIGURING OUT HOW TO
MEASURE THEM IN EACH OF THE
PRESENTATIONS TODAY.
SO WHEN WE'RE LOOKING FOR A
VALID AND RELIABLE MEASUREMENT
TOOL TO USE IN THE RESEARCH
STUDY, TWO CHARACTERISTICS ARE
OFTEN LACKING AND THIS ACTUALLY
OCCURS ACROSS MANY AREAS OF
HEALTH CARE RESEARCH WHETHER
IT'S CANCER RESEARCH, IN
PALLIATIVE CARE OR DEMENTIA
RESEARCH AS WELL.
THE FIRST IS WHETHER THE
MEASUREMENT TOOL IS DESIGN FOR
THE STUDY POPULATION.
FOR EXAMPLE, DOES IT REFLECT THE
LANGUAGE, CULTURE, PRIORITIES OR
VALUES OF THE PEOPLE IN THE
STUDY.
AND THE SECOND IS WHETHER THE
MEASUREMENT TOOL IS ACTUALLY
ABLE TO SHOW THE IMPROVEMENT
CAUSED BY THE INTERVENTION.
WE SAY IS THE MEASURE AND TOOL
RESPONSIVE OR SENSITIVE TO
CHANGE?
AND IS IT KNOWN HOW MUCH CHANGE
IS CONSIDERED A MEANINGFUL
IMPROVEMENT.
OFTEN, THIS IMPORTANT
INFORMATION ABOUT THE
MEASUREMENT TOOLS ISN'T
DEMONSTRATED OR DOCUMENTED.
IT'S SO IMPORTANT THAT
MEASUREMENT TOOLS ARE DEVELOPED
TO COMPLETION THAT ALL THESE
ISSUES ARE ADDRESSED SO WE CAN
CONFIDENTLY USE THE TOOLS IN OUR
RESEARCH STUDY.
THE THREE PRESENTATIONS IN THIS
SESSION PROVIDE EXCITING
EXAMPLES FROM UNITED STATES AND
THE UNITED KINGDOM OF NEW
APPROACH TO IDENTIFY WHAT'S
IMPORTANT TO PEOPLE LIVING WITH
DEMENTIA AND CREATIVE WAYS OF
DEVELOPING RELIABLE MEASUREMENT
TOOLS FOR THE NEW APPROACHES AND
CONCEPTS.
DR. RILEY IS A PROFESSOR AT THE
UNIVERSITY OF BRADFORD AND
DR. MOLONY IS A PROFESSOR OF
QUINN I PACK UNIVERSITY AND NOW
TO DR. RILEY FOR HER
PRESENTATION.
>>GOOD MORNING, EVERYONE.
THANK YOU VERY MUCH FOR INVITING
ME TO SPEAK.
IT'S A REAL HONOR.
I'LL INTRODUCE YOU TO A STUDY
THAT GREW FROM THE NEED TO
BETTER MAKE SENSE AND SYNTHESIZE
THE EVIDENCE FROM TRIAL AND HAS
RELEVANCE LOOKING AT WHAT
MATTERS TO THOSE LIVING WITH
DEMENTIA AT HOME.
BEFORE I TELL ABOUT THE WORK
MORE ON THE FUNDERS AND
RESEARCHERS AND ADVISORY GROUP.
SO MEASURING OUTCOMES HAS BEEN
CHALLENGING DUE TO THE HET
HETEROGENOUS LEVELS OF DEMENTIA
AND COMPARING EFFECTIVENESS
ACROSS STUDIES AROUND MAKES THE
EVIDENCE BASE HARDER TO
INTERPRET.
ONE APPROACH THAT HAS POTENTIAL
TO ADDRESS THE CHALLENGES AND
OUTCOME MEASUREMENT WAS THE CORE
OUTCOME SET.
THE IDEA IS SIMPLE.
YOU UNDERTAKE RESEARCH TO ATTAIN
A CONSENSUS FROM KEY
STAKEHOLDERS ON WHAT OUTCOMES
ARE MORE IMPORTANT AND REVIEW
EXISTING MEASURES AGAINST THE
CORE OUTCOMES.
SO THE OUTPUT IS A
RECOMMENDATION OF WHAT OUTCOMES
SHOULD BE MEASURED ACROSS ALL
TRIALS WITHIN THE SCOPE OF THE
CORE OUTCOME SET.
SO IN ONE OF THE PUBLISHED
PAPERS WE OUTLINED SIX PREVIOUS
CONSENSUS EXERCISES THAT SOUGHT
TO OBTAIN CONSENSUS IN DEMENTIA
CARE AND RESEARCH AND THERE WAS
A GREAT DEAL OF VARIATION AND
DIFFERENCES IN SOME OF THE
PREVIOUS ENDEAVORS.
SO LOOKING AT THE STUDIES WE
NOTED ANOTHER CHALLENGE AND IT
WAS UNCLEAR IF OUTCOMES BEING
RECOMMENDED ARE IMPORTANT TO
PEOPLE LIVING WITH DEMENTIA.
THEY WERE RARELY CONSULTED AND
THE CHOICE OF OUTCOMES MAY BE
DRIVEN MORE BY THE EXPECTATIONS
OF THE RESEARCH COMMUNITY.
SO WE HAD OUR UNDER PINNING
VALUE OF A CO-RESEARCH
PHILOSOPHY.
WE EMBEDDED THE PARTICIPATION OF
PEOPLE LIVING WITH DEMENTIA AND
THEIR CAR PARTNERS AS
CO-RESEARCHERS THROUGHOUT OUR
STUDY TO DESIGN CREATIVE AND
INCLUSIVE METHODS AND PROCESSES.
SO WE HAD TWO MAIN RESEARCH
QUESTIONS IN RELATION TO
NON-PHARMACOLOGIC
COMMUNITY-BASED INTERVENTIONS
FOR PEOPLE LIVING WITH DEMENTIA
AT HOME.
WHICH OUTCOMES SHOULD BE
MEASURED FROM THE PERSPECTIVE OF
PEOPLE LIVING WITH DEMENTIA AND
HEALTH AND SOCIAL PROFESSIONALS
AND POLICY MAKERS AND RESEARCH
LEADERS AND THEN HOW SHOULD
THESE OUTCOMES BE MEASURED.
SO, WE USED A RIGOROUS
THREE-PHASED MIXED METHOD DESIGN
WITH INTERVIEWS AND FOCUS GROUPS
WITH 55 PEOPLE.
AND WE IDENTIFIED 170 POSSIBLE
OUTCOMES IN PHASE 1 AND WORKED
THE OUTCOMES INTO A SUITABLE
FORMAT TO PEOPLE COULD ANSWER
THE QUESTION INS PHASE 2 WHICH
CONSISTS OF CONSENSUS MEETING.
THE MAJORITY OF OUR DATA FOR
PHASE 1 AND 2 WAS COLLECTED IN
ENGLAND.
54 OUTCOME ITEMS MADE THE SURVEY
AND PEOPLE HAD TO RATE THE
PERFORMANCE FROM THE PERSPECTIVE
OF THOSE LIVING WITH DEMENTIA.
IT WAS SENT TO OVER 300 PEOPLE
FROM THE KEY STAKEHOLDER GROUPS
MENTIONED EARLIER.
IT WAS A SENT A SECOND TIME A
MONTH OR TWO LATER TO REPEAT THE
SURVEY.
SO THE TWO PICTURES WERE TAKEN
AT THE CONSENSUS WORKSHOP FOR
AGREEMENT ON THE CORE OUTCOMES.
AND I'LL RUN THROUGH THIS
QUICKLY.
HERE'S THE PUBLICATION THAT
DESCRIBES ALL THE DETAILS.
OUR FINAL PHASE LOOKED AT WHAT
MATTERS MOST TO THOSE LIVING
WITH DEMENTIA AND HOPING YOU CAN
SEE THESE ON THE SCREENS.
WE ENLISTED THE SUPPORT OF THE
RENOWN CARTOONIST AND WANTED TO
MAKE OUR FINDINGS ACCESSIBLE TO
AS MANY PEOPLE AS POSSIBLE.
HIS FATHER HAD DEMENTIA AND HAD
WRITTEN A BOOK ABOUT THIS SO HE
HAD REAL UNDERSTANDING AND IS
PASSIONATE ABOUT IMPROVING THE
LIVES OF PEOPLE WITH DEMENTIA.
MANY OF THE 13 OUTCOME ITEMS
HAVE SUBSTANTIVE OVERLAP WITH
THE CONCEPT OF SOCIAL HEALTH
WHICH AS MANY WILL KNOW IS A
SHIFT IN FOCUS FROM THE SYMPTOMS
DEFICIT IN DISABILITY TOWARDS
THE CAPACITY AND POTENTIAL OF
THE PERSON WITH DEMENTIA.
SOME OUTCOMES WE DIDN'T FIND
REPRESENTED IN THE TRIALS WE
LOOKED AT IN THE SYSTEMATIC
REVIEW IN PHASE 1.
FOR EXAMPLE, FEELING SAFE AND
SECURE.
THE IMPORTANCE OF RELATIONSHIPS,
FEELING VALUED AND RESPECTED
FROM OTHERS AND HAVING A LAUGH.
WE CONDUCTED A LITERATURE REVIEW
TO IDENTIFY INSTRUMENTS THAT HAD
PREVIOUSLY BEEN USED IN DEMENTIA
RESEARCH TO DETERMINE HOW OR IF
THE 13 OUTCOME ITEMS COULD BE
MEASURED.
SO WE EXTRACTED OUTCOMES FROM
ROUGHLY 350 SOURCES AND
IDENTIFIED 347 MEASURES AND OF
THESE 76 MEASURES MET THE
INCLUSION CRITERIA, IA, WE
LOOKED AT ENGLISH LANGUAGE
QUESTIONNAIRES THAT PEOPLE
LIVING WITH DEMENTIA COMPLETED
AND THOSE WHO ASKED SUBJECTIVE
QUESTIONS AND THOSE THAT USED
SOCIAL RESEARCH IN THE
COMMUNITY.
SO FOR EACH OF THE 76 MEASURES
WE LOOKED CLOSELY AT EACH ITEM
AND EACH MEASURE TO STE HOW IT
REFLECTED EACH OF THE 13 CORE
OUTCOME ITEMS.
THIS INVOLVED NEARLY 18,000
ITEMS BY ITEMS ASSESSMENTS.
HERE'S ONE EXAMPLE.
SO THIS SHOWS THE ENGAGEMENT AND
INDEPENDENCE IN DEMENTIA
QUESTIONNAIRE.
THIS WAS THE HIGHEST SCORING
QUESTIONNAIRE.
THE ROWS ARE THE 13 CORE
OUTCOMES AND THE COLUMNS ARE THE
ITEMS IN THIS OUTCOME MEASURE.
SO WE SIMPLY COMPARED EACH OF
THE OUTCOME MEASURE ITEMS IN THE
COLUMNS WITH THE 13 CORE
OUTCOMES IN THE ROWS TRYING TO
IDENTIFY WHERE THERE WAS A GOOD
MATCH.
WE DID THIS ON A FOUR-POINT
SCALE.
THE GREEN REPRESENTS VERY GOOD,
ORANGE ADEQUATE, YELLOW,
DOUBTFUL AND THE RED INADEQUATE.
EACH MEASURE WAS ASSESSED BY TWO
RESEARCHERS AND THOSE AGREED
WITH THE ASSESSMENTS AND THE
REST WERE DISCUSSED AND A
DECISION WAS MADE.
SO WE FOUND AN INCREDIBLE LEVEL
OF DISSONANCE BETWEEN THE 13
CORE ITEMS AND THE TENTS OF THE
76 OUTCOME MEASUREMENT
INSTRUMENTS WE WERE ASSESSED.
SO THIS TABLE SHOWS THE TOP 10
OUTCOME MEASUREMENT INSTRUMENTS
THAT COVERED THE MOST ITEMS IN
OUR 13 CORE OUTCOMES.
SO AS SEEN IN THE PREVIOUS SLIDE
THE MOST RELEVANT INSTRUMENT TO
MEASURE THE CAUSE WAS THE
ENGAGEMENT AND INDEPENDENCE IN
DEMENTIA QUESTIONNAIRE.
THIS WAS ADEQUATE OR VERY GOOD
FOR ONLY 7 OF 13 OUTCOME ITEMS.
MANY OF THE MOST FREQUENTLY USED
HAVE ADDED A FEW TO THE SLIDE
AND HIGHLIGHTED THE POPULAR ONLY
THE SELF-REPORT MEASURE
HIGHLIGHT U.K. NATIONAL
INSTITUTE FOR HEALTH AND CARE
GUIDELINES.
BUT THIS MEASURE WAS ONLY RATED
ADEQUATE OR VERY GOOD FOR TWO OF
THE 13 CORE OUTCOME ITEMS.
AND OUR RESEARCH HIGHLIGHTS THE
EXCITING MEASUREMENTS DO NOT
REFLECT WHAT STAKEHOLDERS TELL
YOU.
SO WHAT'S THIS MEAN?
WE NEED TO KEEP OUR FOCUS ON
WHAT MATTERS MOST TO THOSE
LIVING WITH DEMENTIA AT HOME AND
NEIGHBORHOODS.
THERE'S MUCH WORK STILL TO DO
HERE.
WE BELIEVE FOCUSSING ON THE 13
CORE OUTCOME AREAS AND MEASURING
THEM CONSISTENTLY WILL INCREASE
THE QUALITY OF EVIDENCE AND WE
NEED TO DEVELOP AND TEST NEW
MEASUREMENTS TO DETERMINE WHAT
MATTERS MOST TO THOSE LIVING
WITH DEMENTIA AND LIFE CARE
PARTNERS AND LOOK AT
COLLABORATIVE RESEARCH FOR
INVESTIGATORS MAKING PROGRESS ON
PERSON-CENTERED MEASUREMENT,
EVALUATION AND WE'VE BEGUN TO DO
WORK AROUND THIS DEVELOPING AN
OUTCOME MEASURE AND WE'LL BE
SEEKING FUNDING TO FURTHER THE
WORK.
IT WOULD BE GREAT TO WORK WITH
OTHERS PLANNING TO RUN STUDIES
WHERE THIS NEW MEASURE COULD BE
ADMINISTERED ALONG SIDE OTHER
MEASURES TO TEST THE PSYCH
METRIC PROPERTIES AND
SENSITIVITY TO MEASURING CHANGE.
IF YOU'RE INTERESTED IN WORKING
WITH US, PLEASE DO LET US KNOW.
HERE ARE THE STUDY REFERENCES
AND SUMMIT.
>>I'LL CONTINUE OUR DISCUSSION
REGARDING MEANINGFUL OUTCOMES
WITH A FOCUS ON POSITIVE AND
NEGATIVE EMOTION AND AFFECT
BALANCE.
THANK YOU TO THE NATIONAL
INSTITUTE ON AGES AND NATIONAL
INSTITUTE OF HEALTH IN
SUPPORTING OUR WORK.
THE CDC AND THEIR DEFINITION OF
WELL BEING MENTIONED
FULFILLMENT, LIFE SATISFACTION,
POSITIVE FUNCTIONING AND THE
PRESENCE OF POSITIVE EMOTIONS
AND ABSENCE OF NEGATIVE
EMOTIONS.
STUDIES WITH PEOPLE LIVING WITH
DEMENTIA CONFIRMED HOLISTIC
HEALTH AND POSITIVE EMOTIONS AND
WELL BEING ARE MEANINGFUL
OUTCOMES.
DRAWING FROM THE LITERATURE ON
LIVED EXPERIENCES OF WELL-BEING
THERE WAS A MAP OF PROPOSED WELL
BEING DOMAINS IN DEMENTIA.
CONCEPTUAL MODELS OF WELL BEING
INCLUDE POSITIVE EMOTIONS AS A
KEY COMPONENT AND THAT IS THE
FOCUS OF THIS PRESENTATION.
IN THEIR REVIEW THEY IDENTIFIED
35 SELF-REPORT MEASURES THAT
CORRESPONDED TO THE DOMAINS OF
WELL BEING DEPICTED IN THE
MODEL.
SIX MEASURES WERE SPECIFICALLY
DEVELOPED FOR PEOPLE WITH
DEMENTIA.
THE MEASURES VARIED IN LENGTH
AND PROPERTIES AND HIGHLIGHTS
THE NEED FOR FURTHER DEVELOPMENT
OF SELF-REPORT MEASUREMENTS AND
PARTICIPANTS LIVING WITH
DEMENTIA TOLD US THE FORMAT OF
THE RESEARCH WAS IMPORTANT
INCLUDING THE WORDING OF
QUESTIONS AND THE NUMBER OF
RESPONSE CHOICES.
IN ADDITION TO EMPHASIZING THE
IMPORTANCE OF WELL DESIGN
COLLABORATIVELY DESIGN RESEARCH
MEASURES PARTICIPANTS TOLD US
THEY VALUED OPEN ENDED QUESTIONS
WHENEVER POSSIBLE TO ALLOW THEM
TO TELL THEIR STORY IN ADDITION
TO A NUMBER OR RATING
HIGHLIGHTING THE VALUE OF MIXED
METHODS.
INDIVIDUALS WITH LIVED
EXPERIENCE EMPHASIZE THE CONTEXT
OF THE DATA COLLECTION.
THE IMPORTANCE OF ESTABLISHING
TRUST WITH THE RESEARCHER AND
BEING ABLE TO COMPLETE A
SELF-REPORT MEASURE IN A
COMFORTABLE, DISTRACTION-FREE
ENVIRONMENT AT A TIME OF DAY
WHEN THEY WERE AT THEIR BEST.
LANGUAGE DIFFICULTIES OR
PROGRESSION IN DISEASE MAY POSE
A CHALLENGE TO THE USE OF
SELF-REPORT MEASURES.
IN ORDER TO USE SELF-REPORT
MEASURES ACROSS A BROADER RANGE
OF DISEASE STAGES AND DEMENTIA
TYPES AND TRAJECTORIES WE MAY
NEED TO MODIFY EXISTING MEASURES
OR CREATE NEW MEASURES AND
METHODS.
COLLABORATIONS HAVE SUCCESSFULLY
ADAPTED SELF-REPORT MEASURES AND
ENHANCE USABILITY ACROSS A
BROADER RANGE OF FUNCTION.
AND SEVERAL STUDIES HAVE
DEMONSTRATED INDIVIDUALS WITH
ADVANCED COGNITIVE IMPAIRMENT
ARE ABLE TO SELF-REPORT
EMOTIONAL WELL BEING USING
YES/NO OPTIONS OR PICTURES.
WHEN SELF-REPORT IS NOT
FEASIBLE, OBSERVER RATED
MEASURES HAVE BEEN USED RELIABLE
AND DEMONSTRATED RELIABILITY AND
FEASIBILITY AND INTERPRETABILITY
IN PERSONS LIVING WITH DEMENTIA.
METHODOLOGICAL CHALLENGES HAVE
BEEN REPORTED WITH VARIABILITY
WITH INDIVIDUALS AND FROM HOUR
TO HOUR THE RESULTS VARIED.
SOME POINT TO FREQUENT
MEASUREMENT OF MOMENTARY WELL
BEING.
MANY MEASURES HAVE BEEN
DEVELOPED FOR ACTIVITY
ENGAGEMENT SUCH AS CREATIVE ARTS
OR INDIVIDUALIZED MUSIC.
OBSERVATION-BASED MEASURES ARE
SENSITIVE TO DYNAMIC CHANGES IN
THE ENVIRONMENT AND THE
SITUATIONAL CONTEXT SO THE
ANTETHIAN
ANTETHIS IS -- ANTECEDANTS ARE
IMPORTANT AND SOME REQUIRE
TRAINING TO PRODUCE RELIABILITY.
IF NURSING STAFF RATINGS ARE
USED THERE MAY BE MORE NEGATIVE
RATHER THAN POSITIVE EXPRESSIONS
AND BEHAVIORS AND MORE WORK IS
NEEDED TO UNDERSTAND THE ABILITY
OF EACH MEASURE TO DETECT
CLINICALLY SIGNIFICANT
IMPROVEMENT AFTER INTERVENTION.
OTHER RESEARCHERS HAVE DONE A
GREAT DEAL OF WORK PARTICULARLY
IN THE NURSING HOME ENVIRONMENT
WITH OBSERVABLE DTHERS OF
POSITIVE AND NEGATIVE EMOTION
USING AFFECT BALANCE.
AFFECT IS AN EXPERIENCE OF
FEELING OR EMOTION IN THE
MOMENT.
AFFECT BALANCE IS THE RATIO OF
POSITIVE TO NEGATIVE EMOTION.
POSITIVE AND NEGATIVE AFFECT ARE
SOMEWHAT CORRELATED BUT
INDEPENDENTLY ASSOCIATED WITH
DIFFERENT INDIVIDUAL AND
ENVIRONMENTAL VARIABLES.
OTHER WORK WITH YOUNGER
POPULATIONS WITHOUT DEMENTIA
SHOWS HIGHER RATIOS OF POSITIVE
TO NEGATIVE EMOTIONS ARE
ASSOCIATED WITH RESILIENCE AND
GREATER OPENNESS TO CREATIVITY
AND POSITIVE ENGAGEMENT.
THE HIGHER RATIO OF POSITIVE TO
NEGATIVE MOTION MAY BE BOTH
OUTCOME AND MEDIATOR OF
ENGAGEMENT LEADING TO GREATER
WELL BEING.
IN FURTHER SUPPORT OF AFFECT
BALANCE AS A PROMISING OUTCOME
MEASURE, HIGHER RATIOS OF
POSITIVE TO NEGATIVE EMOTIONS
HAVE BEEN KNOWN TO DIFFERENTIATE
LOWER AND HIGHER LEVELS OF
SELF-REPORTED WELL-BEING.
POSITIVE AFFECT HAS BEEN
ASSOCIATED WITH ACTIVITY
ENGAGEMENT AND AFFECT BALANCE IS
SENSITIVE TO CHANGE IN THE
QUALITY OF COMMUNICATION AND
QUALITY OF STAFF INTERACTION IN
NURSING HOMES.
AFFECT BALANCE IS ALSO
ASSOCIATED WITH QUALITIES OF THE
PHYSICAL SETTING, HIGHER LEVELS
OF AFFECT BALANCE HAVE BEEN IN
HOMES IN THE NETHERLANDS VERSUS
TRADITIONAL CARE MODEL HOMES.
WE NEED TO LEARN ABOUT THE
CORRELATES OF AFFECT BALANCE FOR
PERSONS WITH DEMENTIA IN
COMMUNITY SETTINGS AND WHETHER A
HIGHER THRESHOLD OF POSITIVE TO
NEGATIVE EMOTIONS MAY RESULT IN
BENEFITS AND WELL-BEING AND NEED
TO CONTINUE THE WORK ON TARGETED
INTERVENTIONS SUCH AS
COMMUNICATION FOCUSSED
INTERVENTIONS,
ENVIRONMENT-FOCUSSED
INTERVENTIONS AND
PREFERENCE-BASED ENGAGEMENT.
TO BETTER CAPTURE MEANINGFUL
OUTCOMES RELATED TO WELL-BEING
SUCH AS POSITIVE EMOTION AND
AFFECT BALANCE ACROSS THE
TRAJECTORY OF EARLY AND LATER
STAGES OF DISEASE, WE MAY NEED
TO ADAPT SELF-REPORT MEASURES,
DEVELOP NEW OBSERVABLE MEASURES
OF MOMENTARY WELL BEING AND USE
TIME SERIES ANALYSIS TO BETTER
UNDERSTAND VARIATIONS, PATTERNS
AND CONTEXT.
INTEGRATING CARE PARTNERS'
KNOWLEDGE OF THE LONG STANDING
PATTERNS OF EMOTIONAL EXPRESSION
MAY IMPROVE THE ACCURACY OF OUR
IMPROVED RATINGS AND
TECHNOLOGIES ARE CURRENTLY BEING
DEVELOPED TO ENABLE
SIMULTANEOUSLY MEASUREMENT MUCH
OF AFFECT BALANCE AND IN WHICH
THE EMOTIONS ARE EXPERIENCES.
MY OWN WORK ON AT HOMENESS HAS
FOCUSSED ON MEANINGFUL PERSON
ENVIRONMENT RELATIONSHIP.
AT HOMENESS HAS BEEN ASSOCIATED
WITH REDUCED DEPRESSION AND
QUALITY OF LIFE AND STUDIES
SUGGEST HIGHER RATIOS OF
EXPERIENCE OF HOMENESS IMPACT
WELL BEING AND AFFECT BALANCE
MAY ENABLE RELATIONSHIP ACROSS A
BROADER RANGE OF COGNITIVE AND
LANGUAGE ABILITIES AND ENABLE
RESEARCH ON ENHANCING THE RATIO
OF POSITIVE EXPERIENCES OF HOME
MAY RESULT IN HIGHER LEVELS OF
AFFECT BALANCE.
WHAT RESOURCES MIGHT ENABLE THIS
WORK?
TECHNOLOGIES TO CAPTURE A
BROADER RANGE OF
MICROEXPRESSIONS OF EMOTION
INCLUDING FACIAL, POSTURAL,
BEHAVIORAL AND VOCATIONAL AND
METHODOLOGIES FOR MOMENTARY AND
WITHIN INDIVIDUAL TIME SERIES
ANALYSIS TO EN HAS THE QUALITY
OF DATA AVAILABLE IN SMALLER
SAMPLE STUDIES.
WE NEED LONGER TERM MIXED
METHODS STUDIES THAT USE
SELF-REPORT AND CAREGIVER
INFORMED AND OBSERVATIONAL
METHODS TO BETTER UNDERSTAND
TRAJECTORIES OF AFFECT BALANCE
AS COGNITIVE FUNCTION DECLINES
AND TEST INTERVENTION AND
COLLABORATIVE RESEARCH WITH
PERSONS LIVING WITH DEMENTIA AND
CAREGIVERS TO DESIGN, IMPLEMENT
AND LOOK AT SELF-RATED MEASURES
IN DIVERSE CULTURAL CONTEXTS.
THANK YOU.
>>OUR NEXT SPEAKER IS DR
>>LEE JENNINGS.
YOU CAN SUBMIT QUESTIONS DURING
THE SEND LIVE FEEDBACK FEATURE
FOR EVERYONE WHO REGISTERED
THROUGH THE ZOOM.
I WILL SPEAK ABOUT PERSONALIZED
HOME MEASUREMENT UP DEMENTIA
CARE AND RESEARCH.
AND WHY PERSON-CENTERED OUTCOMES
AND IT'S HELPFUL TO ADDRESS TWO
MEASUREMENT QUESTIONS.
THE FIRST BEING DOES THE CARE WE
DELIVER HELP PEOPLE LIVING WITH
DEMENTIA AND PARTNER ACHIEVE THE
OUTCOMES MOST IMPORTANT TO THEM.
ONCE WE UNDERSTAND WHAT HEALTH
GOALS OR LIFE GOALS ARE MOST
IMPORTANT ARE THE TREATMENTS
WE'RE RECOMMENDING AND
TREATMENTS PEOPLE ARE RECEIVING
IN LINE?
THAT'S THE IMPETUS FOR THE AREA
OF RESEARCH.
AND IT'S AN EXCITING TIME TO BE
IN THE FIELD THERE'S BEEN A LOT
OF WORK AND THERE'S A PARADIGM
SHIFT MOVING FROM
DISEASE-ORIENTED CARE TO CARE
GOAL CONCORDANT AND IN
CONCORDANCE WITH WHAT MATTERS
MOST TO INDIVIDUALS WAS
IMPORTANT IN DEMENTIA SERVICES
RESEARCH.
THERE'S DIFFERENT WAYS TO THINK
ABOUT PERSON-CENTERED OUTCOME
MEASUREMENT AND WANT TO COMPARE
AND CONTRAST INDIVIDUALIZED
OUTCOMES VERSUS POPULATION OR
COHORT OUTCOMES.
AN EXAMPLE I'LL USE IS GOAL
ATTAINMENT SCALING.
WE'LL FOCUS ON THAT FOR THE REST
OF THE TALK AND I WANT TO
COMPARE IT TO POPULATION OR
COHORT OUTCOMES USING A SCORE.
IT'S HELPFUL WHEN THE FOCUS IS
UNDERSTANDING PERSON-SPECIFIC
GOALS.
SCALING IS A WAY TO TAKE A
PERSONALIZED GOAL AND OPERATION
IZE IT FROM CATEGORIES FROM MUCH
LESS THAN EXPECTED TO MUCH MORE
THAN EXPECTED GOAL ATTAINMENT.
THE OUTCOME IS INDIVIDUALIZED
BUT IT'S STANDARDIZED ACROSS THE
GROUP AND IT ACCOMMODATES
INDIVIDUALIZED GOALS AND A MEAN
SCORE IS LOOKING AT THE FOCUS ON
THE GROUP AND IT'S GOOD FOR
COMPARISON ACROSS INTERVENTIONS.
A PROM MAY NOT BE A FINE ENOUGH
MEASURE TO FIT WELL TO AN
INDIVIDUAL'S GOAL.
THERE'S NO PROM FOR ATTENDING A
GRANDSON'S WEDDING.
AND PROM SETTING HAS BEEN USED
IN LITERATURE FOR FUNCTIONAL
GOALS BUT MAY BE HARDER FOR MOOD
OR PAIN.
WHERE WE HAVE PROMS FOR MANY
CONSTRUCTS BUT WE STILL HAVE
LOTS OF AREAS WHERE WE NEED PROM
DEVELOPMENT.
ONE OF THE MEASUREMENT IS IT'S
RESPONSIVE TO SMALL CHANGE.
WHEREAS A PROM MAY OR MAY NOT BE
ABLE TO CAPTURE A SMALL CHANGE
DEPENDING ON HOW IT'S
CONSTRUCTED.
AND THERE'S A NEW CONCEPT FOR
RESEARCHERS AND INDIVIDUAL S WHO
MAY BE ASKED TO SET GOALS IN THE
CONTEXT OF CARE AND A DIFFERENT
WAY OF THINKING ABOUT CARE AND
REQUIRES MORE INTENSIVE TRAINING
WHERE MANY ARE SHELF READY AND
CAN BE EMBEDDED IN THE EMR.
GOAL ATTAINMENT SCALING ALLOWS
FOR VISION OF GOALS OVER TIME.
WE NOW AS THE DISEASE
PROGRESSES, THINGS CHANGE.
WHERE AS A PROM GOAL MAY ALLOW
YOU TO FOLLOW HOW SOMEONE'S CORE
MAY CHANGE OVER THE COURSE OF AN
INTERVENTION.
I THINK IN SUMMARY THERE'S VALUE
IN BOTH AND WHAT'S EXCITING IS
WE'RE BEGINNING TO SEE GOAL
ATTAINMENT IN ADDITION TO PROMS
BEING A MEASUREMENT IN A STUDY.
I WANT TO HIGHLIGHT THREE
EXAMPLE STUDIES.
THESE ARE ALL ONGOING PRAGMATIC
TRIAL USING SCALINGS A PRIMARY
OR SECONDARY OUTCOME IN ADDITION
TO OTHER PERSON-REPORTED OUTCOME
MEASURES.
THREES A CLUSTER PRAGMATIC TRIAL
OF 438 PERSONS WITH DEMENTIA AND
CAREGIVER DIADS WITH THE
INDIVIDUAL LIVING WITH DEMENTIA
AND THEIR CAREGIVERS AND THE
INTERVENTION IS MULTI-COMPONENT.
IT INCLUDES A NURSED STAFF
TRAINING, ENVIRONMENTAL AND
QUALITY ASSESSMENTS AND A FAMILY
CAREGIVER INTERVENTION PIECE AND
THAT INTERVENTION PIECE INVOLVES
SETTING GOALS FOR FUNCTIONAL
RECOVERY AS PART OF THE
INTERVENTION WITH AN
INTERDISCIPLINARY TEAM AND THEIR
INDIVIDUAL AND THEIR CAREGIVER.
THEY'RE REVIEWED DAILY AS PART
OF THE TREATMENT PLAN AND
INFORMED IN PLANNING.
THE GROUP HAS PUBLISHED AN
INITIAL STUDY FROM 134 DIADS WHO
SET GOALS RELATED TO MOBILITY,
CARE AND GOAL ATTAINMENT AND IT
WAS ASSOCIATED WITH A RETURN TO
BASELINE FUNCTION AND LOWER
DEMENTIA SEVERITY HIGHLIGHTING
IT'S USED AS AN OUTCOME AND ALSO
GOAL SETTING IS PART OF THE
INTERVENTION.
THE NEXT STUDY I WANT TO
HIGHLIGHT IS THE D-CARE STUDY.
IT'S A FOUR-SITE PRAGMATIC
RANDOMIZED TRIAL COMPARING CARE
MANAGEMENT TO COMMUNITY-BASED
MANAGEMENT TO USUAL CARE.
TARGET ENROLL MANY OF 5150 AND
150 IN CARE.
OUTCOMES ARE RELATED TO
CAREGIVER STRAIN AND IT INCLUDES
GOAL ATTAINMENT AND COLLECTED ON
THE FIRST HALF OF PARTICIPANTS.
I'M A CO-INVESTIGATOR SO I CAN
GIVE BACKGROUND WE HAVE
COLLECTED BASELINE GOALS FOR 85%
OF THE INITIAL HALF OF THE
SAMPLE.
AND THREE-QUARTERS HAVE GOAL
ATTAINMENT AT SIX MONTHS.
IT'S ONGOING AND THE DATA
COLLECTION WILL BE SET IN
SEPTEMBER AND IT WILL BE THE
LARGEST STUDY TO MY KNOWLEDGE OF
USING GOAL ATTAINMENT AS AN
OUTCOME AND IT WILL BE EXCITING
TO SEE WHAT COMES OF THIS.
THE LAST STUDY I WANT TO
HIGHLIGHT IS THE NEW
INTERVENTIONS FOR INDEPENDENCE
IN DEMENTIA STUDY.
IT'S A RANDOMIZED SINGLE MAS
TRIAL OF NEARLY 300 DIADS.
INTERVENTION IS DESIGN TO
SUPPORT INDIVIDUALS WITH
DEMENTIA TO STAY AT HOME TO
ADDRESS BARRIERS AND MAY
PRECIPITATE MOVES OUT OF THE
MOMENT AND THE STUDY HAS GOAL
ATTAINMENT AS A PRIMARY OUTCOME
MEASURE.
AND THEY HAVE A CONCEPTUAL MODEL
AS PART OF THE INTERVENTION.
THE IDEA BEING IF INDIVIDUALS
WITH DEMENTIA HAVE FEWER UNMET
NEEDS THEY'RE ABLE TO LIVE
LONGER AT HOME.
THE GOAL ATTAINMENT SCALING AS
AN ACTIVITY WILL HELP IDENTIFY
THE HIGHEST PRIORITY UNMET NEEDS
AND SETTING GOALS WILL HELP
FOCUS ACTION PLANNING AROUND HOW
IT MEET THE NEEDS.
THE GROUP PUBLISHED AN INITIAL
QUALITATIVE EVALUATION OF DIADS
AND FELT LIKE IT HELPED UNMET
NEEDS.
AND I WANT TO TALK ABOUT
INDIVIDUALIZED OUTCOMES IN
CLINICAL QUALITY MEASUREMENT.
WE'VE KNOWN FOR A LONG TIME WHEN
WE DO CLINICAL QUALITY
MEASUREMENT ONE SIZE DOES NOT
FIT ALL IT'S QUITE TRUE IN
DEMENTIA.
SO IN THE NATIONAL COMMITTEE FOR
QUALITY ASSURANCE HAS DONE WORK
IN DEVELOPING PERSON-DRIVEN
OUTCOME MEASURES FOR CARE
QUALITY MEASUREMENT.
THIS LOOKED AT GOAL ATTAINMENT
SCALING VERSUS PRIORITIZED PROM.
WE'RE TRYING TO PICK A PROM AS
CLOSE AS POSSIBLE TO THE
INDIVIDUAL'S GOAL DONE IN SEVEN
SITES, 33 CLINICIANS, 229 OLDER
ADULTS AND A FIFTH HAD DEMENTIA.
82% WERE ABLE TO SET A GOAL,
THREE-QUARTERS MET THEIR GOAL
AND NO DIFFERENCE BETWEEN GOAL
ATTAINMENT AND SCALING AND PROM
AND CLINICIANS INTERESTINGLY
OFTEN CHOSE TO USE GOAL
ATTAINMENT SCALING AS THE
METHODOLOGY.
PART MAY BE THE CLINICIANS IN
THE STUDY WERE SOCIAL WORKERS
AND CARE MANAGERS AND INDICATED
THAT TOOL WAS VERY ADVANTAGEOUS
FOR THE CARE PLANNING PROCESS TO
BE USED.
AND SO IT'S NOW USING THE
OUTCOMES FROM THIS STUDY TO
DEVELOP PROVIDER TRAINING TOOL
KITS AND USING IT TO INFORM
STUDIES YOU'RE GOING AROUND
QUALITY METRIC DEVELOPMENT.
SO IN CLOSING I THINK THERE'S
OPPORTUNITY TO THINK HOW WE
ADVANCE THE USE OF
INDIVIDUALIZED OUTCOME MEASURES
AND GOAL ATTAINMENT IN DEMENTIA
CARE RESEARCH.
FIRST AS YOU SAW IN THE EXAMPLES
IN THIS PRESENTATION THE FIRST
IS INCLUDING GOAL ATTAINMENT IN
STUDIES AND TRIALS AND THINKING
OF GOAL SETTING AS AN
INTERVENTION AS PART OF AN
INTERVENTION TO INFLUENCE THE
OUTCOME MEASURES.
TO DO THIS WELL I THINK IT TAKES
TRAINING.
IT'S WHAT WE'VE SEEN IN THE
RESEARCH AND TRAINING TOOL KITS
THAT COME FROM THE PRAGMATIC
RESEARCH THAT COULD BE
TRANSLATED TO CLINICAL PRACTICE
IS AN IMPORTANT COMPONENT AND
NOT AROUND THE USE OF SCALING
BUT SOLICITATION AND VALUES AND
CARE PREFERENCES OF INDIVIDUALS
AND WHEN WE TALK ABOUT DEMENTIA
WE'RE OFTEN TALKING ABOUT TRIAD
OF COMMUNICATION.
INCREASED RESEARCHERS ON HOW TO
DO IT WELL WITH INDIVIDUALS
LIVING WITH DEMENTIA AT
DIFFERENT STAGES OF DISEASE AND
THEIR CAREGIVER PARTNERS AND
DIFFERENT CLINICIANS.
AND LASTLY, GOAL ATTAINMENT
SCALING IS USED IN OTHER TYPES
OF RESEARCH BUT STILL NEW IN
DEMENTIA AND SO INCREASED WORK
AROUND STANDARDIZATION OF THE
METHODOLOGIES FOR SCHOOLING.
I THINK I'D LIKE TO ACKNOWLEDGE
MY COLLABORATORS AND FUNDERS.
THANK YOU.
>>THANK YOU, DR. JENNINGS AND
GLAD YOU WERE ABLE TO PRESENT
GIVEN THE CIRCUMSTANCES.
WE'LL INTRODUCE THE DRAFT
RESEARCH GAPS AND OPPORTUNITIES
IDENTIFIED THROUGH THE WORK AND
FOCUS OF THIS PARTICULAR
SESSION.
AND THESE ARE WHAT WE SEE AS
IMPORTANT AREAS FOR FUTURE
DEVELOPMENT IN MEASUREMENT.
THE FIRST IS TO DEVELOP AND TEST
INSTRUMENTS FOR USE IN RESEARCH
THAT MEASURE CORE OUTCOMES.
THESE WOULD BE STANDARD AND
HARMONIZABLE ACROSS STUDIES AND
OF CENTRAL IMPORTANCE TO DIVERSE
PERSONS LIVING WITH DEMENTIA AND
THEIR CARE PARTNERS AND SUITABLE
ACROSS THE PROGRESSION OF
DISEASE AND PRAGMATIC TRIALS.
IT WOULD BE VALUABLE TO HAVE
COLLABORATION AMONG
INVESTIGATORS MAKING PROGRESS ON
PERSON-CENTERED MEASUREMENT AND
EVALUATION AS WELL.
OUR SECOND IDENTIFIED GAP AND
OPPORTUNITY IS TO DEVELOP AND
REFINE APPROACH TO MEANINGFUL
OUTCOMES IN PARTICULAR WELL
BEING, AFFECT, AND POSITIVE OR
NEGATIVE EMOTIONS EXPERIENCED OR
EXHIBITED BY PERSONS LIVING WITH
DEMENTIA AND WE HAVE A NUMBER OF
SPECIFIC MEASUREMENT CHALLENGES
THAT WE'VE IDENTIFIED AND
THEY'RE LISTED BELOW.
OUR THIRD GAP AND OPPORTUNITY IS
TO DEVELOP AND REFINE APPROACHES
FOR INDIVIDUAL GOAL SETTING AND
ASSESSMENT OF GOAL ATTAINMENT
SUITABLE FOR USING IN DEMENTIA
CARE AND CARE GIVING RESEARCH.
INCLUDING PRAGMATIC TRIALS AND
THE DEVELOPMENT OF INSTRUMENTS,
TOOL KITS AND PROCESSES FOR
IMPLEMENTING GOAL ATTAINMENT
SCALING IN CLINICAL PRACTICE
SPECIFIC TO PERSONS LIVING WITH
DEMENTIA.
I'M DELIGHTED TO INTRODUCE OUR
PANELISTS TO PROVIDE REFLECTIONS
ON THE PRESENTATIONS WE HAVE
JUST SEEN.
DR. MANGI IS A MEMBER OF THE
LIVED EXPERIENCE PANEL AND A
CAREGIVER FOR HIS WIFE.
DR. FAZIO IS THE SENIOR DIRECTOR
OF QUALITY CARE AND PSYCHOSOCIAL
AT THE ALZHEIMER'S ASSOCIATION
AND DR. BELANGER IS A PROFESSOR
OF POLICY AND PRACTICE AT BROWN
UNIVERSITY.
DR. MANGI, WHAT DO YOU
UNDERSTAND MATTERS MOST TO YOUR
WIFE IN HER DAILY LIVING AND HOW
HAS THAT CHANGED AS HE DISEASE
HAS PROGRESSED?
>>TO QUOTE ONE OF MY WIFE'S
FAVORITE SONGS BY ARETHA
FRANKLIN, IT'S R-E-S-P-E-C-T.
IN THE 16 YEARS OF MY WIFE
KATHLEEN'S DEMENTIA JOURNEY, SHE
HAS NEVER WANTED SYMPATHY JUST
RESPECT.
EVEN NOW WHEN SHE HAS LOST MANY
ABILI
ABILITIES.
TO HOLD A FORK, TO WALK, TO
TALK, SHE STILL WANTS TO BE
RECOGNIZED AS A PERSON FOT A
GENERIC PATIENT, NOT A VICTIM OR
A GEM STONE BUT A PERSON.
NOT A USED TO BE A -- BUT IS AS
IN IS A SWEET, BEAUTIFUL PERSON
WHO KNOWS WHEN FOLKS ARE TALKING
ABOUT HER NOT WITH HER.
RECENTLY I TOLD THE MEMORY
CENTER STAFF ABOUT MY LOVELY
WALK OUTSIDE WITH MY SMILING
SWEETHEART.
I WAS LITERALLY TALKING OVER HER
HEAD FROM BEHIND HER WHEELCHAIR
WHEN SHE THUMPED THE ARMS OF HER
CHAIR TO TELL ME SHE WAS RIGHT
THERE.
I CAME AROUND AND LOOKED HER IN
THE EYES AND APOLOGIZED AND SAID
SOFTRY, OKAY.
-- SOFTLY, OKAY.
RESPECT IS IMPORTANT TO HER.
EARLY IN THE JOURNEY SHE WAS
CONCERNED ABOUT HER PARENTS AND
SIBLINGS AND THEIR PAST AND
FUTURE PROBLEMS.
WHEN I WOULD TELL HER THEY WERE
LONG DECEASED SHE'D BE OFFENDED
BECAUSE I FAILED TO RESPECT HER
CONCERNS IN HER REALITY.
THESE DAYS SHE'S JUST IN THE
PRESENT.
THOUGH IT SEEMS LIKE VERBAL
NONSENSE, SHE HAPPILY DISCUSSES
THINGS WITH HER PARENTS.
I CAN'T SEE THEM BUT I RESPECT
THAT THEY'RE PRESENT FOR HER.
AND SHE'S FINE WITH MY JUST
BEING PRESENT WITH HER.
I DON'T DISCUSS THE PAST OR IF
HE FUTURE OR ANYTHING ELSE.
I JUST SAY THINGS LIKE THANK YOU
FOR BEING MY BEST FRIEND.
YOU'RE SAFE.
WE WILL ALWAYS TAKE CARE OF YOU
AND I'LL LOVE YOU FOREVER.
THAT'S ABOUT ALL I CAN DO THESE
DAYS BUT HER SMILE TELLS ME IT
IS ENOUGH FOR HER.
THANK YOU.
>>THANK YOU FOR THESE TOUCHING
AND THOUGHTFUL REMARKS.
DR. FAZIO WOULD YOU LIKE TO
SHARE YOUR COMMENTS NEXT?
>>THANK YOU VERY MUCH.
THANKS TO THE NIH AND NIA AND
THE SESSION CHAIRS FOR INCLUDING
ME AND JIM, IT'S ALWAYS AN HONOR
TO HEAR YOUR GREAT WORDS FROM
THE HEART ILLUSTRATING WHAT
PERSON-CENTERED CARE REALLY
LOOKS LIKE.
EACH OF TODAY'S TALKS INVOLVES
THE IMPORTANCE OF LIVING WITH
INDIVIDUALS INVOLVED IN CARE AND
RESEARCH.
UNTIL RECENTLY INVOLVING PERSON
LIVING WITH RESEARCH MEANT
INVOLVING THEM AS SUBJECT AND
PARTICIPANTS NOT NOT REALLY
PARTNERS.
DR. REILLY REMIND US TO LISTEN
TO THEIR NEEDS AND OUTCOMES IN
PSYCHOSOCIAL DEMENTIA WORKSHOPS.
AND THERE'S EXPRESSIONS OF
POSITIVE AND NEGATIVE EMOTION
AND FUTURE DIRECTIONAL NEEDS AND
THE CONCEPT OF GOAL ATTAINING
SCALING AND HOW ESSENTIAL IT IS
TO UTILIZE OUTCOMES IMPORTANT TO
THE INDIVIDUAL.
IF WE DON'T PAY ATTENTION TO
THESE IMPORTANT CONCEPTS WE RISK
TREATING PEOPLE WITH DEMENTIA AS
A GROUP RATHER THAN EMBRACING
INDIVIDUAL DIFFERENCES AMONG
PERSONS AND GROUPS.
THE ALZHEIMER'S ASSOCIATION HAS
BEEN CONVENING WITH INDIVIDUALS
LIVING WITH DEMENTIA TO FIND OUT
WHAT'S IMPORTANT TO THEM AND
MONICA MORENO TOLD YOU ABOUT
THAT ABOUT THE OUR STAKEHOLDERS
HAVE MADE AN IMPACT ON CARE,
POLICY AND RESEARCH INCLUDING
OUR COLLABORATION WITH THE NIA
IMPACT COLLABORATORY YOU HEARD
ABOUT EARLIER.
SOME OF THE WORK OF OUR EARLY
STAGE ADVISER GROUP CAN BE SEEN
ON THE LIVE WELL SECTION OF THE
ALZHEIMER'S ASSOCIATION'S
WEBSITE AND HIGHLIGHTED IN OUR
JOURNAL, ALZHEIMER'S AND
DEMENTIA.
INVOLVING STAKEHOLDERS IN
RESEARCH AND SPECIFICALLY
MEASUREMENT HAS BEEN KEY TO THE
WORK OF AN NIH-FUNDED CONSORTIUM
FOR PERSON-CENTERED MEASUREMENT.
ONE CONTRIBUTION OF THE WORK IS
THE DEVELOPMENT OF THE PC NET.
A TOOL USED TO ASSESS THE
PERSON-CENTEREDNESS OF A MEASURE
AND RESULT ON THE MEASURES OF
THE ASSOCIATION'S WEBSITE.
THOUGH THEY'RE BEGINNING TO
ASSESS THOSE LIVING WITH
DEMENTIA FEW HAVE BEEN DEVELOPED
FROM PEOPLE LIVING WITH
DEMENTIA.
IF WE ARE TRUE TO INVOLVE THEM
IN RESEARCH IT'S CRITICAL
THEY'RE INVOLVED IN THE
DEVELOPMENT OF THE MEASURES.
THIS IS A KEY PART OF THE NIH
FUNDED HERD STUDY.
THANK YOU TO THE PRESENTERS FOR
THE WORK AND THANK YOU FOR YOU
TO ALLOWING ME TO SHARE OUR WORK
AT THE ALZHEIMER'S ASSOCIATION
WITH YOU.
THANK YOU.
>>THANK YOU, DR. FAZIO.
NOW TO YOU, DR. BELANGER.
>>THANK YOU SO MUCH.
I'M DELIGHTED TO CONTRIBUTE TO A
SESSION ON SUCH AN IMPORTANT
TOPIC AS PROVIDING CARE THAT
IMPROVES THE LIVES OF PERSONS
LIVING WITH DEMENTIA.
IT'S STRIKING THERE'S SO MUCH
COMMON GROUND ACROSS THE
PRESENTATIONS TODAY.
THERE'S BROAD CONSENSUS WE NEED
TO FOCUS ON WHAT MATTERS MOST TO
THOSE LIVING WITH DEMENTIA AND
CARE PARTNERS AND LOOK AT TRIALS
AND NEED TO BE BRIEF, SIMPLE,
AND USEFUL ACROSS THESE STAGES
AND TRAJECTORIES.
WE CANNOT OVERSTATE THE
CHALLENGES WE FACE OBTAINING
VALID WHEN SELF-REPORT BECOMES
IMPOSSIBLE AND THE NEED TO TRY
TO COMBINE THESE WITH METHODS TO
CAPTURE PEOPLE'S EXPERIENCES.
I WANTED TO POINT OUT WE MADE
MOTABLE PROGRESS INCORPORATING
MORE RIGOROUS AND STANDARDIZED
PERSON-CENTERED OUTCOMES AND
ROUTINE ASSESSMENTS GENERATED BY
OUR HEALTH SYSTEMS.
SOME NOTABLE EXAMPLES INCLUDE
RESIDENT MEASURES AVAILABLE IN
NURSING HOMES FOR OVER A DECADE.
AND I'M EXCITED TO SHARE A LOT
OF THE WORK WE DO AT BROWN
UNIVERSITY CENTER FOR
GERONTOLOGY WE HEARD ABOUT THIS
MORNING INCLUDING THE IMPACT
COLLABORATORY AND IT'S
CONTRIBUTING TO TRIALS AND
ESTABLISH AN INFRASTRUCTURE TO
SUPPORT REAL-WORLD EVIDENCE AND
IMPROVE THE CARE TO THOSE
PERSONS WITH DEMENTIA AND AS A
RESEARCHER I'M ACUTELY AWARE OUR
EFFORTS TO ASSESS THE
PERFORMANCE OF HEALTH SYSTEMS
ARE ONLY AS USEFUL AND RELEVANT
AS THE MEASURES WE ARE USING-.
FOR THIS REASONING I FOCUSSED ON
IMPROVING THE MEASURES OF
PATIENT-REPORTED OUTCOMES AND
THERE REMAINS SO MUCH TO BE DONE
TO MAKE SURE INDIVIDUALIZED AND
POPULATION OUTCOMES ARE MORE
WIDELY USED AND AVAILABLE.
WE STILL DON'T HAVE GOOD
MEASURES AT THE POPULATION
LEVEL.
WE USE THE BEST INDICATORS
AVAILABLE AND WE HAVE DONE AGING
IN CARE THAT HAVE PROVEN TO BE
BURDENSOME SUCH AS TRYING TO
REDUCE TRANSFERS IN THE LAST
DAYS OF LIFE.
I HOPE THE GAPS AND
OPPORTUNITIES THAT WERE SO
THOUGHTFULLY PRESENTED BY OUR
COLLEAGUES WILL CONTINUE TO
MAINTAIN OUR AWARENESS OF THE
GOAL OF FOCUSSING ON WHAT
MATTERS MOST TO THOSE LIVING
WITH DEMENTIA AND CARE PARTNERS
AND ENCOURAGE US AND
RESEARCHERS, HEALTH CARE
PROFESSIONALS AND POLICY MAKERS
TO MAKE THE GOAL A REALITY.
>>THANK YOU FOR THESE REMARKS.
WE'LL OPEN IT THE DISCUSSION TO
QUESTIONS ANYONE MAY HAVE ABOUT
THE PRESENTATIONS AND PANELIST
REMARKS.
THERE'S A VARIETY OF QUESTIONS
SUBMITTED.
FOR OUR DISCUSSION WE'LL BE
FOCUSSING ON QUESTIONS THAT ARE
RELATED TO MEASURING WHAT
MATTERS TO PEOPLE LIVING WITH
DEMENTIA.
TO START I HAVE A QUESTION FOR
DR. MOLONY.
YOU PRESENT THE IMPORTANCE OF
WELL BEING FOR THOSE LIVING WITH
DEMENTIA AS WELL AS RESEARCH
THAT FOCUSES ON A VERY SPECIFIC
MEASURE OF WELL BEING AFFECT
BALANCE.
COULD YOU TALK ABOUT THE PROCESS
AND ANY CHALLENGES RELATED TO
IDENTIFYING SPECIFIC CONCEPTS TO
MEASURE WITHIN A BROAD DOMAIN
THAT'S CLEARLY IMPORTANT?
>>THANK YOU FOR THAT QUESTION.
>>THERE ARE A VARIETY OF
DIFFERENT TYPES OF MEASURES FOR
POSITIVE EMOTION AND AFFECT
BALANCE.
POSITIVE AND NEGATIVE EMOTION.
AND DEPENDING UPON THE SPECIFIC
MEASURE THAT'S USED THEY
HIGHLIGHT DIFFERENT TYPE OF
EMOTION, WHAT COUNTS AS A
POSITIVE EMOTION OR WHAT COUNTS
AS A NEGATIVE EMOTION.
ALSO THEY REQUIRE DIFFERENT
AMOUNTS OF INTERPRETATION.
IT DEPENDS ON HOW MUCH OF THE
CO
CONTEXT IS BROUGHT IN AND THOSE
ARE IMPORTANT IN LOOKING AT THE
WORK GOING FORWARD AND MAY
AFFECT THE AMOUNT OF TRAINING TO
GET GOOD INTERRATED RELIABILITY
FOR THE MEASURES.
>>THANK YOU.
I'LL JUMP IN WITH QUESTIONS FROM
THE AUDIENCE.
WE'LL TRY TO GET TO AS MANY AS
WE CAN AND KNOW ALL THE
QUESTIONS WILL BE READ BY THE
STEERING COMMITTEE.
THIS IS A QUESTION PROBABLY BEST
ADDRESSED TO DR. REILLY.
I'D LOVE TO KNOW IF THE OUTCOME
OF PEOPLE LIVING WITH DEMENTIA
WERE FOCUSSED ON OTHERS RATHER
THAN THEMSELVES.
RATHER, THINKING ABOUT THEIR
CARE PARTNER'S WELL BEING OR
AFTER A PERSON LIVING WITH
DEMENTIA PASSES AWAY.
>>WHEN WE CONDUCTED THE
INTERVIEWS WE INTERVIEWED A
RANGE AND THAT WAS BROUGHT UP
WHEN WE NARROWED DOWN ON THE
ITEMS WE WANTED TO FOCUS ON
THOSE LIVING WITH DEMENTIA.
IT WASN'T A CORE OUTCOME FOR
CARE PARTNERS.
HAD IT BEEN WE'D GO INTO MORE
DETAIL.
I HOPE IT ANSWERED YOUR
QUESTION.
ALSO I THOUGHT WHAT JIM SAID WAS
POIGNANT ABOUT THE IMPORTANT OF
RESPECT THERE WAS A THOUGHT AND
FEELING OF BEING RESPECTED BY
NOERJZ AND WHEN WE --
WHEN WE LOOKED AT OUTCOMES
SHOULD BE REPRESENTED IT WASN'T
REPRESENTED.
THIS IS AN IMPORTANT GAP WHICH
ALIGNS WITH EVERYTHING THAT'S
BEEN SAID IN THE SESSION.
>>DO OUTCOME MEASURES APPLY
EQUALLY ACROSS DIFFERENT TYPES
OF DEMENTIA?
>>I THINK YOU NEED DIFFERENT
OUTCOMES FOR DIFFERENT STAGES
AND THE WORK WE DID FOCUSSED ON
PEOPLE AT THE EARLIEST AND
MODERATE STAGE.
I THINK YOU NEED SEPARATE PIECES
OF WORK THOUGH WE'RE WORKING
WITH A NUMBER OF TRUSTS AND
LOOKING AT THE 13 OUTCOME ITEMS
AND HOW THESE RELATE TO PEOPLE
WITH ADVANCED DEMENTIA.
I THINK THERE'S OVERLAP AND WE
NEED TO GET THE MEASUREMENTS
RIGHT.
I THINK THERE'S A LOT OF WORK TO
BE DONE AROUND THE MEASUREMENT
AND SCIENCE OF MEASUREMENT AND
FOR THIS TIME RATHER THAN NOT
20, 30 YEARS AGO WHEN PEOPLE
WEREN'T -- PEOPLE LIVING WITH
DEMENTIA WEREN'T INCLUDED AND
THEIR VOICES WEREN'T HEARD
NECESSARILY.
>>DR. MOLONY AND JENNINGS I
WONDER IF YOU CAN TALK ABOUT THE
TOOLS YOU'VE BEEN FOCUSSING ON
THAT CAN BE USED THROUGHOUT THE
SPAN.
>>AND BALANCE IS ONE REGARDLESS
OF THE TIME OF DEMENTIA IS A
WORTHWHILE CONCEPT IN TERMS OF
AN OUTCOME MEASURE.
I THINK THE CHALLENGE BECOMES
WHEN IS SELF-REPORT -- WHEN DOES
THAT BECOME SO CHALLENGING THAT
THEN WE NEED TO SURROUND THAT
WITH OTHER TYPES AND CAN WE
SUPPORT SELF-REPORT IN OTHER
WAYS THAT MAKE IT VALUABLE
LONGER INTO THE DISEASE PROCESS.
>>I THINK ONE OF THE NICE
THINGS OF GOAL ATTAINMENT
SCALING IT CAN ACCOMMODATE
DIFFERENT STAGES OF THE DISEASE
BUT STILL HAS ISSUE WITH
SELF-REPORT OR IDENTIFICATION OF
THE GOAL.
AS THE DISEASE PROGRESSES THAT
MAY BECOME MORE CHALLENGING AND
HOW TO INVOLVE THE CARE PARTNER
AND THIS CONCEPT OF TRIATIC
COMMUNICATION IS CRITICAL TOFIDE
GOALS AND MAKE SURE THEY'RE
CONCORDANT.
IT'S AN EXCITING FIELD TO WORK
IN BECAUSE THERE'S SO MUCH TO BE
DONE TOWARDS IMPROVING THE WAY
WE MEASURE OUTCOMES SO OUR
INTERS ARE GETTING AT WHAT IS
MOST IMPORTANT TO PEOPLE.
>>IN YOUR EXPERIENCE AS A CARE
PARTNER AND I BELIEVE YOU
MENTIONED THAT YOUR WIFE HAD
PARTICIPATED IN SOME TRIALS.
I WONDER IF YOU HAVE THOUGHTS
ABOUT REPORTING INTER RESEARCH
CONTEXT ON THESE TYPES OF
MEASURES IF YOU WERE A
PARTICIPANT IN A RESEARCH STUDY.
>>SHE WAS NOT ABLE TO PROVIDE
VERY MUCH FEEDBACK.
SOME OF THE STUDIES WERE MORE
MEDICAL AS IN PHARMACOLOGY SO
I'M AFRAID I REALLY DON'T HAVE
ANY GREAT INSIGHT ON THAT.
IT IS OBVIOUSLY VERY DIFFICULT
AND I RESPECT THE CHALLENGES
THEY FACE IN TERMS OF TRYING TO
COME UP WITH SOME SORT OF
OBJECTIVE MEASURES FOR SOMETHING
THAT IS INHERENTLY SUBJECTIVE
AND OF COURSE THE IRONY WE'RE
ALL TALKING ABOUT THE IMPORTANCE
OF PERSON-CENTERED CARE
RECOGNIZING THAT EACH PERSON IS
UNIQUE, THAT WONDERFUL SLIDE
ABOUT THE GREAT AMERICAN LINE
AND ONE SIZE FITS ALL.
THEY'RE ALL UNIQUE.
TRYING TO COME UP WITH SOME
STANDARD WAY TO MEASURE OR TO
REPORT IS AN ALMOST BUT NOT
INSUPERABLE CHALLENGE AND I
RESPECT ALL THE RESEARCHERS
GRAPPLING WITH THAT IRONY OF
TRYING TO COME UP WITH AN
OBJECTIVE WAY TO DEAL WITH
SOMETHING VERY SUBJECTIVE.
>>I WONDER IF WE'LL ARRIVE AT
WHAT IS COMMON TO THE HUMAN
EXPERIENCE AND WHAT PEOPLE DO
DESIRE FOR THEIR OWN LIVES.
THEN I BELIEVE THERE'S ALSO
SPACE FOR INDIVIDUALIZED GOALS.
DR. JENNINGS HIGHLIGHTED WITH
THE GOAL ATTAINMENT SCALING.
>>ONE THING ONE SHOULD CONSIDER
I THOUGHT THE QUESTION EARLIER
WAS ABOUT THE DIFFERENT TYPES OF
DEMEN
DEMENTIA, NOT STAGES, LIKE
FRONTAL, TEMPORAL AND LEWY BODY.
THEY CAN BE VERY DIFFERENT FROM
THE SYMPTOMS OF THE MOST COMMON
ALZHEIMER'S.
SO QUALITY OF LIFE MEASURES FOR
SOMEONE ESPECIALLY A YOUNGER
PERSON WHO IS DEALING WITH
FRONTAL TEMPORAL DEMENTIA MAY BE
VERY DIFFERENT FROM AN OLDER
PERSON EXPERIENCING THE EARLIER
STAGES OF ALZHEIMER'S.
I DON'T THINK THAT HAS BEEN
GRAPPLED WITH AND IT'S BEYOND ME
BUT THAT IS WORTH CONSIDERING
BECAUSE MANY TIMES THE SITUATION
FOR A YOUNGER WORKING PERSON
WITH FRONTAL TEMPORAL DEMENTIA
IS DIFFERENT FROM A RETIRED
PERSON BEGINNING TO DEAL WITH
ALZHEIMER'S.
>>THAT'S WHERE WE COME BACK TO
FOCUSSING ON THE VALIDITY OF THE
INSTRUMENTS FOR THE PEOPLE IN A
STUDY POPULATION MAKING SURE WE
HAVE -- WE'RE MEASURE THINGS
APPROPRIATE TO PEOPLE'S LIVES
AND THEIR EXPERIENCE WITH THE
DISEASE.
ABSOLUTELY.
I AGREE BECAUSE THERE'S MANY
TYPES OF DEMENTIA AND ALSO
DIFFERENT STAGES THAT WILL POSE
CHALLENGES.
LOOKING FOR COMMONALITY IS
VALUABLE TO NOT DEVELOP 25
DIFFERENT INSTRUMENTS BUT
LOOKING FOR AREAS OF OVERLAP AND
BEING ABLE TO BE A BIT MORE
FOCUSSED WOULD BE HELPFUL I
THINK.
>>I WANTED TO ADD TO THAT.
I THINK THAT IS ONE -- BECAUSE
THE DEMENTIA POPULATION IS SO
HETEROGENOUS AND DIFFERENT
STAGES AND DISEASE TYPES AND
CARE PARTNER AND FAMILY MEMBER
RELATIONSHIPS THEY ALL IMPACT
WHAT'S IMPORTANT TO SOMEONE AND
WHAT THEY WANT TO ACHIEVE OUT OF
THE INTERVENTION.
THAT'S ONE OF THE BENEFITS OF
INDIVIDUALIZED GOAL ATTAINMENT
IS IT DOES PRODUCE THE
OPPORTUNITY TO NOT ONLY MEASURE
WHAT'S IMPORTANT TO THE
INDIVIDUAL BUT YOU CAN ALSO
INCLUDE OTHER PERSON-REPORTED
OUTCOMES IN THAT STUDY.
SO MULTIPLE WAYS TO LOOK AT THE
OUTCOMES INDIVIDUALS ARE HOPING
TO ACHIEVE FROM AN INTERVENTION.
>>I THINK WE HAVE MUCH TO LEARN
FROM PROCESS MEASURES TO LEARN
FROM INDIVIDUALS WITH LIVED
EXPERIENCE WHAT'S WORKING WELL
FOR THEM.
FROM INDIVIDUALS WHO MAY BE
DEALING WITH LEWY BODY OR
FRONTAL TEMPORAL DEMENTIA WHO
ARE YOUNGER OUR OLDER CAN TELL
US STRATEGIES THAT WORK WELL FOR
THEM OR MORE DETRIMENTAL TO
THEIR WELL BEING.
SOME OF THE PROCESS MEASURES
THAT CAPTURE WHAT IS OR IS NOT
WORKING WELL IS ALSO A USEFUL
STRATEGY.
>>WE HAVE ANOTHER QUESTION FROM
THE AUDIENCE THAT WAS PROBABLY
PROMPTED BY DR. MOLONY'S
PRESENTATION ON AT-HOMENESS AND
A LARGER ISSUE OF BEING AT HOME.
IS THERE ANY RESEARCH ON HOW AN
IMPACT ON THE WELL BEING OF THE
CAREGIVER AND PERSON WITH
DEMENTIA DIAD WHO ARE AGING IN
PLACE SO SAFETY AND
ACCESSIBILITY FOR FALL
PREVENTION, MAINTENANCE AROUND
THE HOUSE -- IF ANY OF THE
PANELISTS WOULD LIKE TO COMMENT.
>>THERE'S CERTAINLY LITERATURE
IRRESPECTIVE IF SOMEONE HAS
IMPORTANCE OF THE PHYSICAL
ENVIRONMENT OF WELL-BEING AND IF
YOU AT THE VARIABLE OF LIVING
WITH DEMENTIA THERE'S RESEARCH
ON THE QUALITIES OF THE
ENVIRONMENT THAT MAY IMPACT BOTH
SAFETY AND OTHER ELEMENTS OF
HOLISTIC HEALTH AND QUALITY OF
LIFE.
I KNOW WHAT IN THE PHYSICAL
ENVIRONMENT MAY CONTRIBUTE TO
WELL-BEING AND IN TERMS OF BEING
ABLE TO FIND ONE'S WAY AROUND
THE ENVIRONMENT IN TERMS OF THE
USEFULNESS OF THE PHYSICAL
ENVIRONMENT AND AS THE PERSON
MENTIONED THE SAFETY OF THE
ENVIRONMENT.
>>HERE'S A QUESTION ABOUT GOAL
ATTAINMENT IDENTIFICATION.
THERE MAY BE DIFFERENCES BETWEEN
WHAT THE PERSON LIVING WITH
DEMENTIA WANTS AND WHAT THE CARE
PARTNER NEEDS OR WANTS.
WE'VE HAD OTHER QUESTIONS IN THE
CHAT ABOUT CARE GIVING AS WELL.
I WONDERED IF YOU COULD COMMENT
ON THAT.
HOW THAT'S ARISEN IN THE WORK
YOU'VE BEEN DOING.
>>DEFINITELY.
IT REFLECTS AND THINKING OF A
CLINICIAN REFLECTS THE REAL
WORLD CLINICAL SETTINGS IN THAT
YOU HAVE AN INDIVIDUAL WHOSE
VOICE YOU WANT TO HEAR AND HAVE
A CARE PARTNER WHOSE VOICE YOU
NEED TO HEAR.
THEY MAY BE CONCORDANT OR NOT.
NAVIGATING THAT COULD BE
CHALLENGING CLINICALLY.
WHEN YOU ARE USING THE GOAL
ATTAINMENT SCALING AS A TOOL
IT'S IMPORTANT TO THINK THROUGH
IN YOUR STUDY WHAT STAGE THE
PARTICIPANTS WILL BE AND HOW YOU
WILL NAVIGATE SETTING THE GOALS
WILL IT BE THE INDIVIDUAL OR THE
COMMUNICATION PROCESS WHERE
THERE'S AGREED UPON GOAL OR CARE
GOAL AND THEY ALL HAVE STRENGTHS
OR CHALLENGES OR WEAKNESSES BUT
IT'S SIMILAR IN A
PERSON-REPORTED OUTCOME
MEASUREMENT AND YOU'LL HAVE TO
DECIDE WHO YOU'LL HAVE TO HAVE
REPORT.
YOUR GOAL ATTAINMENT SCALING
DOESN'T SOLVE THAT ISSUE.
IT HAS THE SAME CONSIDERATION
THAT ANY KIND OF PERSON-REPORTED
OUTCOME MEASUREMENT WOULD.
>>THERE'S A QUESTION ON
ADOPTION OF RECOMMENDED
MEASURES.
SO IN THE PAST IT HASN'T BEEN
CLEAR RECOMMENDATIONS FOR
OUTCOME MEASURES HAVE BEEN TAKEN
UP BY RESEARCHERS OR HEALTH
SERVICES.
>>I KNOW THE NATIONAL INSTITUTE
FOR HEALTH RESEARCH IN ENGLAND
REQUIRES THAT PEOPLE WHO --
RESEARCHERS GOING FOR FUNDING
LOOK AT THE COMET INITIATIVE.
LOOK BASICALLY TO SEE IF THERE'S
BEEN A CORE OUTCOME SET DONE ON
THIS PARTICULAR TOPIC, WHATEVER
THE TOPICS ARE.
AND TO STATE THAT IN THEIR
FUNDING.
IT'S RELIANT ON THE RESEARCHERS
TO INVESTIGATE PREVIOUS CORE
OUTCOME SETS, STUDIES AND
SHOULDN'T JUST BE ONE OR TWO BUT
LIKE A CLINICAL TRIAL THERE
SHOULD BE MANY.
IT'S INCUMBENT ON THE
RESEARCHERS TO INCLUDE THAT IN
THEIR CASE FOR SUPPORT.
AND LOTS OF RESEARCHERS DON'T
KNOW THIS SO I'M NOT SURE WHAT
THE SITUATION IS IN THE U.S. AND
WHETHER THAT'S A REQUIREMENT OR
NOT.
>>WE MADE PROGRESS ON THIS WITH
THINGS SUCH AS THE PREFERENCES
FOR EVERYDAY LIVING IN TERMS OF
BEING PART OF THE NURSING HOME
ASSESSMENT PROCESS AND OTHER
MEASURES LIKE THAT.
I'LL ADD THERE'S AN ALZHEIMER'S
ASSOCIATION AND IMPACT
COLLABORATORY ARE WORKING ON
COMPILING PERSON-REPORTED
OUTCOME MEASURES TO BE USED BY
RESEARCHERS.
THOSE ARE TWO NIA SUPPORTED
INITIATIVES AND WE CERTAINLY AS
RESEARCHERS SHOULD BE AWARE OF
THOSE AND SHOULD BE USING THEM.
>>THIS IS SAM.
I WAS GOING TO MENTION OUR WORK
WITH LINK I.D.
I THINK PART OF THE PROBLEM IS
THAT WE DON'T USE CONSISTENT
MEASURES OR WE'RE NOT LOOKING AT
CONSISTENT OUTCOMES.
WE SPOKE ABOUT THE IMPORTANCE OF
CORE OUTCOME AREAS.
I THINK THAT'S ONE OF OUR
EFFORTS OF LINK A.D. IS TO BE
ABLE TO SHARE THE OUTCOMES AS A
GROUP OR MEASURES AS A GROUP
THROUGH THE REPOSITORY.
AND OUR FIRST PASS IS LOOKING AT
HOW THE MEASURES ARE
PERSON-CENTERED BASED ON THE
CRITERIA I MENTIONED EARLIER TO
SHOW IF THEY'VE BEEN DEVELOPED
IN A PERSON-CENTERED WAY OR IF
THEY'RE APPLIED IN A
PERSON-CENTERED WAY.
IT WILL BE HOPEFULLY A NEW
ADDITION TO REPOSITORIES THAT
ARE OUT THERE.
>>THERE ARE LOCAL AND
INDIVIDUALIZED EFFORTS AROUND
IMPLEMENTING MEASURES IN THE
HEALTH CARE SYSTEM AS WELL.
I THINK DR. BELANGER YOU
MENTIONED THAT AND SO THINKING
WHAT SHOULD BE ASSESSED AT EACH
CLINICAL VISIT AND MAKING THAT
INFORMATION AVAILABLE TO
RESEARCHERS AS WELL.
>>I'LL ADD ONE OF THE WAYS
AROUND THIS IN SOME OF OUR WORK
IS TO DO MIXED METHODS RESEARCH
AND BY THAT I MEAN THE TIME TO
DO QUALITATIVE INTERVIEWS AND TO
GIVE A VOICE TO THE USER AND
THERE'S TENSION BETWEEN
GENERALIZABLE DATA TO GUIDE
POLICY DECISIONS AND WHERE WE
DON'T HAVE A REAL SENSE OF WHAT
THAT MEANT IN PEOPLE'S LIVES.
>>THANK YOU.
I WANTED TO THANK EVERYONE.
OUR PRESENTERS, OUR PANELISTS
AND EVERYONE WHO ASKED SUCH
THOUGHTFUL QUESTIONS FOR YOUR
PARTICIPATION IN OUR FIRST
SESSION TODAY.
THANK YOU VERY MUCH.
>>WONDERFUL TO SEE ALL THE
CLAPS ON THE SCREEN.
THANK YOU SO MUCH, SESSION 1,
CO-CHAIRS, PANELISTS AND
PRESENTERS.
WE'RE NOW GOING TO TRANSITION TO
AN APPROXIMATELY 45-MINUTE BREAK
AND RECONVENE THE SUMMIT WITH
OUR NEXT SCIENTIFIC SESSION AT
1:45 P.M. EASTERN STANDARD TIME.
THANK YOU ALL AND SEE YOU THEN.
>>WELCOME BACK TO THE DEMENTIA
CARE SUMMIT AND THANK YOU TO THE
MORNING PARTICIPANTS.
WE WELCOME YOUR COMMENTS DURING
THE Q&A PORTION.
I AM NOW PLEASED TO WELCOME
DR. LEWIS MEDINA AND DR. LUKE
STOECKEL CO-CHAIRS OF THE IMPACT
OF DETENTION AND DIAGNOSIS ON
INDIVIDUALS AND CARE PARTNERS.
>>I'M VERY EXCITED TO START
THIS SESSION ESPECIALLY AFTER
HEARING THAT WONDERFUL FIRST
SESSION WHICH I THINK SET THE
STAGE NICELY FOR TODAY.
I'M CO-CHAIR WITH LUKE STOECKEL.
WE'LL BE ADDRESSING APPROACHES
TO EARLY AND EQUITABLE DETECTION
OF DEMENTIA AS AN ENTRY TO
DEMENTIA CARE BUILDING OFF THE
INSTRUMENTS AND PROCEDURES THAT
WERE DESCRIBED IN SESSION 1.
WE'LL ALSO CONSIDER CONTEXT.
AND I MEAN LARGELY SOCIAL,
ECONOMIC AND INSTITUTIONAL
BARRIERS TO AND FACILITATORS OF
DIAGNOSIS WITHIN CARE SETTINGS
INCLUDING PRIMARY CARE AND WILL
PROBABLY BE REFERENCING PRIMARY
CARE MORE BROADLY AND IN THE
CONTEXT OF MEDICARE ANNUAL
WELLNESS VISITS.
RESEARCH PRESENTATIONS WILL
CONSIDER THE IMPACT OF DETECTION
AND DIAGNOSIS ON INDIVIDUALS AND
FAMILIES ACROSS DIVERSE CONTEXT
AND BACKGROUNDS AND WE'LL HEAR A
BIT OF THAT THROUGHOUT ALL OF
OUR PRESENTATIONS.
IN ORDER TO HELP FRAME WHO OUR
SPEAKERS WILL BE TALKING ABOUT,
WE'LL HIGHLIGHT BENEFIT TO EARLY
DEMENTIA DIAGNOSES AND MOST
DEMENTIA CASES REMAIN
UNDIAGNOSED EARLY AS WILL BE
DESCRIBED AND THIS UNDER
DIAGNOSIS IS MORE COMMON IN
CERTAIN GROUPS.
THE RESULTS OF THESE UNDER
DIAGNOSES LEAD TO DISPARITIES IN
CARE, SERVICES RECEIVED AND USED
AND SURVIVAL.
DR. SHAH WILL HIGHLIGHT HOW
THERE'S A NEED FOR IMPROVED
TOOLS AND RISK MODELS ESPECIALLY
IN PRIMARY CARE.
DR. McCREEDY WILL TALK ABOUT
ACCESSING CARE AND HOW THE
DEVELOPMENT AND VALIDATION OF
TOOLS AND ALGORITHMS IS KEY TO
ADDRESSING WHAT ACCOUNTS FOR
DISPARITIES IN DIAGNOSIS IN
CARE.
ARE THREE SPEAKER DR. SHAH FROM
RUSH UNIVERSITY AND DR. McCREEDY
FROM BROWN UNIVERSITY AND
DR. DRABO FROM JOHNS HOPKINS
UNIVERSITY.
>>DR. SHAH?
>>I APPRECIATE THE OPPORTUNITY
TO BE HERE TO TALK ABOUT RISK
PREDICTION OF ALZHEIMER'S
DISEASE AND RELATED DEMENTIAS IN
PRIMARY CARE SETTINGS.
THESE ARE MY DISCLOSURES.
IF WE CAN GO TO THE NEXT SLIDE.
AS A PROFESSOR OF FAMILY AND
PREVENTIVE MEDICINE AND THE RUSH
ALZHEIMER'S DISEASE CENTER IN
CHICAGO ILLINOIS I THOUGHT I'D
TALK ABOUT WHAT WE KNOW ABOUT
ADRD RISK PREVENTION AND PRIMARY
CARE.
WHAT WE DON'T KNOW THAT WE
SHOULD AND PROMISING AND
INNOVATIVE OPPORTUNITIES FOR
FUTURE RESEARCH AND THE
RESOURCES, INFRASTRUCTURE AND
DATA THAT THE FIELD NEEDS TO BE
SUCCESSFUL IN ADVANCING FUTURE
RESEARCH ON RISK PREDICTION AND
PRIMARY CARE.
WHY SHOULD WE TALK ABOUT RISK
PREDICTION IN PRIMARY CARE
SETTINGS FOR ADRD.
SOME OF IT HAS TO DO WITH OUR
DEMOGRAPHICS.
WHILE YOUNGER INDIVIDUALS CAN
DEVELOP AND ARE AT RISK FOR
ALZHEIMER'S DISEASE AND RELATED
DEMENTIAS.
THE MAJORITY OF PEOPLE WHO
EXPERIENCE DIAGNOSIS AND
SYMPTOMS OF ALZHEIMER'S DISEASE
ARE OVER 65 AND WE HAD 56.1
MILLION OVER AGE 65 AND WE
ANTICIPATE THAT TO GROW TO 94.7
MILLION IN THE NEXT 40 YEARS.
WHAT WE THINK ABOUT BASED ON A
USEFUL TOOL DEVELOPED BY THE
U.S. PREVENTIVE SERVICES TASK
FORCE IS THE ANALYTICAL
FRAMEWORK WHEN THEY MAKE
RECOMMENDATIONS ABOUT WHAT TO DO
AS FAR AS SCREENING INDIVIDUALS
THAT ARE ASYMPTOMATIC FOR A
CONDITION OF PUBLIC HEALTH
IMPORTANCE AND THINKING THROUGH
THE DIAGNOSTIC WORKUP AND
MANAGEMENT PROGRAM AND THE CARE
PARTNER AND OTHER SOCIETAL
OUTCOMES.
WHAT I'LL FOCUS ON IS WHAT
HAPPENS BEFORE WE HIT THIS
PIPELINE THIS WAS PART OF A
REVIEW TO DECIDE WHETHER WE
SHOULD BE SCREENING ALL ADULTS
COMMUNITY DWELLING OVER 65 WHO
DON'T HAVE A DIAGNOSIS OF
DEMENTIA AND IDENTIFY WHO HAS
DEMENTIA IN CASE FINDING.
I THINK OF THIS AS IN COLORECTAL
CANCER SCREENING.
WE COULD SCREEN THE OVER 50
MILLION PEOPLE OVER 65 SAY ON AN
YEARLY BASIS ON AN ANNUAL
WELLNESS VISIT BUT THAT WOULD BE
QUITE A LOT OF WORK WITH THE
UNIVERSAL SCREENING APPROACH AND
A CONDITION THAT CAN SOMETIMES
TAKE A WHILE TO MANIFEST,
IDENTIFYING WHO ARE IN THE
POPULATION THAT AREN'T SHOWING
SIGNS AND SYMPTOMS SHOULD WE
SCREEN BASED ON A RISK-BASED
APPROACH.
DO THAT THE A DIFFERENT
INTERVALS AND FROM THE GROUP AT
AT HIGHER RISK HAVE THEM GO
THROUGH THE PIPELINE WHERE THEY
GET INVOLVED IN A MORE CARE AND
SUPPORT SERVICES FOR DEMENTIA
AND TREATMENT AND DIAGNOSIS.
WHAT DO WE KNOW ABOUT RISK
PREDICTION IN PRIMARY CARE
SETTINGS?
>>THERE WAS A NICE SYSTEMATIC
REVIEW OF RISK PREDICTION MODELS
IN TOLD FOR ALL DEMENTIAS DONE
IN 2019 AND OUT OF THE OVER30
STUDIES THAT WERE FOUND ONLY
THREE HAD SOME WORK THAT WAS
DONE IN A PRIMARY CARE SETTING.
ONLY ONE CALLED THE TOOL
DEVELOPED BY BARNES IN 2014 HAD
DEVELOPMENT AND VALIDATION AS A
SCREENING INDICATOR IN PRIMARY
CARE SETTINGS.
TO SHOW YOU THE DEMENTIA
SCREENING INDICATOR IN THE 2014
PAPER, THE CONCEPT WAS TO BE
ABLE TO IDENTIFY SEVEN QUESTIONS
OF THINGS SUCH AS YEARS,
EDUCATION, DIABETES RISK,
STROKE, DIFFICULTY MANAGING
MONEY AND POTENTIAL OTHER
MEDICATIONS PEOPLE TAKE
ASSIGNING THE SCORE TO THEM
BASED ON A RISK PREDICTION MODEL
AND IF THE SCORE WAS ABOVE 22,
THAT PERSON WAS AT HIGHER RISK
IN A PRIMARY CARE SETTING OF
DEVELOPING A DEMENTIA.
ON THE RIGHT THEY END UP SHOWING
THAT IN FOUR DIFFERENT
COMMUNITY-BASED AND THE
POPULATION-BASED COHORTS, THE
LOWEST LINE AS FAR AS RISK FOR
DEVELOPING A DEMENTIA WITHIN SIX
YEARS WAS THE GROUP THAT SCORED
BELOW 22 ON THE SCALE.
THEY WERE BETWEEN 65 AND 79 AND
THE LINE WITH THE DASHES SHOWS
THOSE SCREENED WITH THE TOOL
HIRE THAN AND HAD AN ELEVATED
RISK TO SOMEBODY WITH NORMAL
RISK FACTORS AND ABOVE AGE 80.
THEY WERE ABLE TO SEE THE
CALIBRATION OF RISK BASED ON THE
SCALE IN FOUR DIFFERENT COHORTS.
SO WHAT DON'T WE KNOW THAT WE
SHOULD?
LET ME GO THROUGH A COUPLE KEY
POINTS HERE?
THE FIRST AS WE SHOWED WITH THE
SYSTEMATIC REVIEW, THERE'S
FAIRLY FEW VALIDATED LATE LIFE
RISK ASSESSMENT TOOLS IN PRIMARY
CARE ESPECIALLY ONES IN THE
PUBLIC DOMAIN AND COULD BE USED
IN CLINICAL SETTINGS.
WHILE WE ACCEPT IN THE FIELD OF
MEDICINE STATISTICS AROUND HOW
WELL A RISK MODEL DOES WITH AN
AREA UNDER THE CURVE OF .75 OR
ABOVE, WE NEED TO GET THEM TO A
HIGHER LEVEL OF BEING ABLE TO
DIFFERENTIATE BETWEEN GROUPS SO
WE DON'T RUN INTO FALSE
POSITIVES AND NEGATIVES.
WE HAVE A HARD TIME COMPARING
THE STUDIES IN THE SYSTEMATIC
REVIEW BECAUSE THEY ALL REPORT
THEIR INFORMATION HOW THEY GO
ABOUT VALIDATION IN DIFFERENT
WAYS AND DON'T HAVE A GOLD
STANDARD DATA SET TO COMPARE
MODELS AND IDENTIFY MODEL ARE
BETTER AND LEAD TO THE DESIGN OF
CLINICAL TRIALS TO TEST
DIFFERENT MODELS IN DIVERSE
PRIMARY CARE SETTINGS.
AND FINALLY WE DO THINGS ONE AT
A TIME WITH A SURVEY OR
DATA-BASED METHODS BUT HAVE TO
CONSIDER COMBINATION MECHANISMS
INCLUDING BLOOD AND BIO MARKERS.
SO WHAT ARE OPPORTUNITIES FOR
FUTURE RESEARCH?
I THINK WHAT WE'RE STARTING TO
SEE IN 2022 AND 2023 IS
PUBLICATIONS OF LOOKING AT DATA
THAT'S ELECTRONICALLY COLLECTED
IN THE ELECTRONIC HEALTH RECORD
TO BE ABLE TO VALIDATE ACROSS
MULTIPLE DIVERSE CLINICAL
SETTINGS OF TOOLS SIMILAR TO THE
BARNES TOOL CALLED E RADAR AND
HAVING GOOD PROPERTIES AND
FINDING OUT WHO MAYBE AT RISK
AND SAW ANOTHER PAPER BASED ON A
LARGE DATA SET IN FLORIDA FROM
THE P CORE MODEL THAT ENDED UP
FINDING GOOD PROPERTIES AS FAR
AS A RISK PREDICTION MODEL FROM
DATA ALREADY IN THE ELECTRONIC
HEALTH RECORD.
SO WHAT RESOURCES AND
INFRASTRUCTURE AND DATA WILL WE
NEED TO ADVANCE RISK PREDICTION
MODELS IN PRIMARY CARE SETTINGS?
THE FIRST THING I THINK WE HAVE
TO DO IS REFRAME HOW WE VIEW
PRIMARY CARE.
IN MANY WAYS PEOPLE THINK OF
PRIMARY CARE AS A PLACE.
THE IMAGE OF A PICTURE OF A
BUILDING OR A CLINIC AS WHERE
PRIMARY CARE IS DELIVERED.
BUT WHAT I'D LIKE TO MENTION IS
WE PROBABLY HAVE TO THINK OF IT
AS A MIND SET.
IT'S ABOUT HIGH QUALITY PRIMARY
CARE THAT TAKES THE WHOLE PERSON
INTO ACCOUNT ALONG WITH THEIR
CAREGIVERS TO SUSTAIN HEALTH AND
BECOMES PART OF THE LARGE ECO
SYSTEM WE'VE BEEN IDENTIFYING
AND WORKING ON CALLED DEMENTIA
FRIENDLY COMMUNITIES THROUGH
DEMENTIA CARE AND IT GETS US
BACK TO THE IDEA OF THE PRIOR
SUMMIT ABOUT THE IDEA OF USING
DATA FOR FITNESS AND BEING CLEAR
WE HAVE TO WORK IN A PARTICULAR
POPULATION SETTING AUDIENCE
RESOURCE.
THANK YOU FOR YOUR ATTENTION AND
TIME.
I APPRECIATE IT.
>>NEXT UP WE HAVE DR. EL EN
McCREEDY.
TAKE IT AWAY.
>>THANK YOU.
FUL I'LL TALK ABOUT CHALLENGE TO
EQUITABLE IDENTIFICATION OF
PEOPLE LIVING WITH DEMENTIA FOR
PRAGMATIC CLINICAL TRIALS.
PEOPLE WITH ADRD OR DEMENTIA
ENROLLED IN RESEARCH STUDIES ARE
OF THE DIFFERENT THAN THE
POPULATION OF ALL PEOPLE LIVING
WITH DEMENTIA.
THE GOAL OF PRAGMATIC OR
REAL-WORLD TRIES IS TO ENROLL
PEOPLE WHO BETTER REPRESENT ALL
PEOPLE LIVING WITH DEMENTIA AND
THEIR CAREGIVERS WHEN
APPROPRIATE.
IN THIS PRESENTATION WE'LL TALK
ABOUT BARRIERS AND FACILITATORS
TO IDENTIFYING A REPRESENTATIVE
POPULATION FOR REAL-WORLD TRIALS
OF INTERVENTIONS FOR PERSONS
LIVING WITH DEMENTIA AND THEIR
CAREGIVERS.
SO WHAT DO WE KNOW?
WE KNOW PRAGMATIC TRIALS SHOULD
REPRESENT A POPULATION.
EARLIER YOU HEARD FROM DR. FAZIO
WHO TALKS ABOUT THE STAGES OF
BEHAVIORAL INTERVENTION
DEVELOPMENT AND TESTING.
ONE OF THE LATER STAGES IS
EFFECTIVENESS TRIALS.
THESE ARE CONDUCTED IN THE REAL
WORLD SETTING AND INCLUDE FORMAL
TESTING OF THE EFFECTIVE
INTERVENTION ON PATIENT-CENTERED
OUTCOMES AND USUAL CARE
PRACTITIONERS OR PEOPLE LIVING
WITH DEMENTIA OR CAREGIVERS
DELIVER THE INTERVENTION.
IN ORDER TO FIND PEOPLE LIVING
WITH DEMENTIA TO ENROLL IN THE
TRIALS WE RELY ON A FORMAL
DIAGNOSIS WITHIN THE ELECTRONIC
HEALTH RECORD.
WE ALSO MAY LOOK FOR ADRD OR
DEMENTIA DIAGNOSIS IN CLAIMS AND
IF WE'RE LUCKY WE MAY HAVE A
SYMPTOM SCREENER EMBEDDED IN THE
ELECTRONIC HEALTH RECORD.
YOU MAY HAVE HEARD OF THOSE
CALLS FOR THE MOCA OR USE A
COMBINATION OF CLOSED ITEMS LIKE
THE E RADAR AND OTHER TOOLS
DR. SHAH TALKED ABOUT AND
CURRENTLY THERE'S NEW EMPHASIS
ON LOOKING AT OPEN-TEXT
CLINICIAN NOTES WITHIN THE
RECORD.
AFTER A PHYSICIAN OR CLINICIAN
IS DONE SEEING A PATIENT THEY
MAY MAKE A GENERAL NOTE ABOUT
THEIR DISPOSITION.
THEY'RE HAVING TROUBLE
UNDERSTANDING THEIR MEDICATION
INSTRUCTIONS OR MAY MAKE A
COMMENT ABOUT ANOTHER DEMENTIA
RELATED SYMPTOM LIKE LOST
INTEREST IN DOING THINGS THEY
USED TO ENJOY.
BY MINING THE DATA WE CAN LOOK
AT PATTERNS THAT MIGHT INDICATE
SOMEONE HAS COGNITIVE IMPAIRMENT
OR DEMENTIA.
THERE'S TRADE-OFF BETWEEN USING
THE ADRD DIAGNOSIS OR SOME OF
THE NEWER METHODS THAT MINE THE
OPEN TEXT FIELD AND CLINICIAN
NOTES.
IF WE START WITH AN ADRD
DIAGNOSIS THIS MAY BE OUR LEAST
EQUITABLE OPTION.
WE KNOW MINORITIZED POPULATION
AND OTHER UNDER REPRESENTED
POPULATION LEAST LIKELY TO GET
AN ADRD DIAGNOSIS.
IF YOU'VE GONE THROUGH THE
PROCESS TO GET A DIAGNOSIS AND
INVOLVING SPECIALTY CARE.
THE PEOPLE WITHOUT ACCESS TO THE
CARE DON'T GET THE DIAGNOSIS.
BUT ON THE FLIP SIDE FOR
IDENTIFYING PEOPLE TO ENROLL IN
THE TRIAL YOU'RE PROBABLY LEAST
LIKELY TO IDENTIFY PEOPLE WHO
DON'T HAVE THE DISEASE OR WHO
ALSO DON'T KNOW THEY HAVE THE
DISEASE.
OFTEN IF WE USE ON THE FLIP SIDE
IF WE USE CLINICIAN NOTES TO
INDICATE POSSIBLE IMPAIRMENT, IT
MIGHT BE A MORE EQUITABLE
OPTION.
WE MIGHT IDENTIFY MORE PEOPLE
WHO HAVE LESS ACCESS TO
SPECIALTY CARE.
THAT TRADE IS THERE AND WE MIGHT
IDENTIFY PEOPLE WHO SYSTEMS ARE
CONSISTENT WITH COGNITIVE
IMPAIRMENT OR DEMENTIA BUT DON'T
KNOW THEY HAVE THE DISEASE.
WE NEED TO THINK OF OFFERING THE
INTERVENTION WITH THE POTENTIAL
BENEFIT TO THE POTENTIAL HARM OR
OF LEARNING THEY HAVE COGNITIVE
IMPAIRMENT OR DEMENTIA.
THERE'S TRADE-OFFS TO THINKING
HOW TO ENROLL PEOPLE USING
NATURALISTIC NON-TRADITIONAL
DIAGNOSTIC CODES.
I PUT EXTRA CIRCLES BECAUSE IT
INVOLVES HAVING ACCESS TO OUT
PATIENT CARE TO BE IDENTIFIED
AND THERE ARE INDEPENDENT
PROVIDERS WITHOUT COMPREHENSIVE
E.H.R.s AND WANT TO BE INCLUDED
AND FINALLY CAREGIVERS ARE
MISSING AND IF YOU WANTED TO
TARGET THEM IT'S HARD TO LOCATE
THEM AND TALKED ABOUT MAYBE
COMMUNITY BASED ORGANIZATIONS
FOR THAT PURPOSE.
MINORITIZED OPTION LESS LIKELY
TO BE INCLUDED IF BASED ON
DIAGNOSIS AND POSSIBLE CASES
INCREASES THE RISK OF
MISIDENTIFICATION OR IDENTIFYING
PEOPLE WHO DON'T KNOW THEY HAVE
THE DISEASE.
ALL ALGORITHMS DON'T HAVE ACCESS
TO OUT-PATIENT CARE.
WHAT SHOULD WE KNOW THAT WE
DON'T?
WE DON'T HAVE ENOUGH DATA TO
REPLICATE ALGORITHMS.
EXISTING ALGORITHMS ARE OFTEN IN
SPECIALIZED MEDICAL SETTINGS
UNDER REPRESENTING MINORITIZED
POPULATION AND NOT ENOUGH IS
NOBODY ABOUT THE VALIDITY IN
ALGORITHMS IN SETTINGS THAT
REPRESENT USUAL CARE.
WHAT ARE THE OPPORTUNITIES?
CREATING AND REPORTING
PHENOTYPIC ALGORITHMS HAVE BEEN
IDENTIFIED AND NOT WIDELY
ADOPTED YET.
SEVERAL REPOSITORIES EXIST AND
THE KNOWLEDGE BASE TO PROVIDE
DETAIL TO RESEARCHERS WHO WANT
TO REPLICATE VALIDATED
ALGORITHMS IN THEIR DATA AND
RAPID TECHNIQUES ARE BECOMING
MORE AVAILABLE ALLOWING
RESEARCHERS TO USE THE VALIDATED
ALGORITHMS AVAILABLE IN THE
KNOWLEDGE BASE TO TEST IN THEIR
OWN POPULATION PRIOR TO USING IT
FOR A STUDY.
THEY KNOW HOW WELL IT'S WORKING
IN THEIR DATA.
WHAT RESOURCES DO WE NEED?
ONE, WE NEED TO DEMOCRATIZE THE
USE OF EXISTING ALGORITHM AND
SUPPORT CRITERIA AND INVEST IN
DEVELOPMENT AND DISSEMINATION OF
RAPID VALIDATION TOOLS SO
TESTING WITHIN YOUR OWN DATA.
TWO, NEED TO INCORPORATE
UNSTRUCTURED DATA INTO
ALGORITHMS AND MONITOR THE
RELATIONSHIP BETWEEN MORE
UNSTRUCTURED DATA AND CRIN
COLLUSION OF MINORITIZED
POPULATIONS AND IS THERE BIAS
WITHIN THE TEXT.
IT'S IMPORTANT TO MONITOR WHAT'S
HAPPENING AS WE OPEN UP OUR
ALGORITHMS TO USING THIS TYPE OF
DATA.
WE NEED TO MONITOR THE ETHICAL
IMPLICATIONS AND IDENTIFYING
PEOPLE WHO DON'T KNOW THEY'RE
LIVING WITH DEMENTIA OR
COGNITIVE IMPAIRMENT.
THREE, REACH PEOPLE WITHOUT
ACCESS TO SPECIALTY CARE.
PEOPLE NOT IN THE E.H.R.
THAT'S THE HARDEST PART.
DR. GILMORE-BYKOVSKYI HAS NICE
WORK BUT WE HAVE TO THINK
OUTSIDE OF THAT.
DR. THOMAS HAS BEEN WORKING WITH
MEALS ON WHEELS TO IDENTIFY
PEOPLE IN THE COMMUNITY WHO MAY
BE LIVING WITH DEMENTIA.
THESE ARE EXCITING AVENUES FOR
FURTHER RESEARCH AND KEEP BETTER
TABS ON THE CAREGIVERS AND WE
NEED TO LEVERAGE MORE
COMMUNITY-BASED ORGANIZATIONS TO
IDENTIFY THE DIAD AND THE PERSON
LIVING WITH DEMENTIA AND THEIR
CAREGIVERS BECAUSE THE
CAREGIVERS IS ALMOST COMPLETELY
MISSING THE E.H.R.
THAT'S THE END OF MY
PRESENTATION, THANK YOU.
>>OUR NEXT SPEAKER IS
DR. EMANNUAL DRABO.
>>HOW TO FOR ALLOWING ME TO
TALK ABOUT THIS IMPORTANT TOPIC.
I'LL BEGIN BY FOLLOWING THE
FOOTSTEPS OF DR. SHAH AND
McCREEDY AND TRYING TO FRAME MY
PRESENTATION AROUND WHAT WE KNOW
ABOUT DEMENTIA DIAGNOSIS AND
POST-DIAGNOSIS CARE AND WHAT WE
DON'T KNOW THAT WE SHOULD AND
SOME PROMISING AND INNOVATIVE
OPPORTUNITIES FOR FUTURE
RESEARCH.
SO WHAT IS THE ISSUE HERE?
>>THERE'S MANY BENEFITS TO
DIAGNOSIS AS THE TALKS HAVE
ALLUDED TO.
FOR EXAMPLE, PROMOTING EARLY AND
OPTIMAL DISEASE MANAGEMENT OR
GAINING EARLY ACCESS TO
INFORMATION, APPROPRIATE
SERVICES AND RESOURCES.
AND THIS BENEFITS NOT ONLY THE
PATIENT BUT ALSO THE PERSON
LIVING WITH DEMENTIA AND THE
CAREGIVER.
ALSO IT ALLOWS ONE TO HAVE EARLY
DISCUSSIONS AROUND ADVANCED CARE
PLANNING AND FINALLY SOME
OPPORTUNITIES TO ENROLL IN
CLINICAL TRIALS AND BENEFIT FROM
EMERGING TREATMENTS.
UNFORTUNATELY, MOST DEMENTIA
CASES REMAIN UNDIAGNOSED EARLY.
AND WHY IS THAT HELP --
HAPPENING?
WE THINK BECAUSE OF THE
SCREENING AND DIAGNOSES AND THE
PHARMACEUTICALS HAVE LIMITS AND
DRUGS ARE PRIMARILY LABELLED FOR
ALZHEIMER'S DISEASE AND THE MOST
PREVALENT DEMENTIA SUBTYPE BUT
NOT OTHER DEMENTIAS.
WE KNOW THE U.S. PREVENTIVE TASK
FORCES STATEMENT STEMS FROM
FINDING OF LIMITED EVIDENCE TO
RECOMMEND FOR SCREENING IN OLDER
ADULTS.
WHAT DO WE KNOW?
THERE'S MANY COMMUNITY-BASED AND
CORE STUDIES AND RESEARCH THAT
CONSISTENTLY SHOW EVIDENCE OF
RACIAL AND ETHNIC DISPARITIES IN
DEMENTIA RISK.
FOR EXAMPLE, USING DATA FROM
PARTICIPANTS IN THE HEALTH AND
RETIREMENT SURVEY LINKED TO
MEDICARE CLAIMS, MEDICARE AND
MEDICAID CLAIMS, COLLEAGUES HAVE
SHOWN BLACK ADULTS HAVE UP TO
TWOFOLD LIKELIHOOD OF DEVELOPING
DEMENTIA AS WHITES RESPECTIVE OF
THE OUTCOME AND DATA THEY USE.
THERE'S RECENT EVIDENCE IN A
STUDY THAT FIND BLACK AND
HISPANICS ARE TWICE AND FOUR
TIMES MORE LIKELY THAN WHITES TO
HAVE MILD COGNITIVE IMPAIRMENT
AND DEMENTIA DUE TO HIGHER
PREVALENCE OF VASCULAR RISK
FACTORS AND IN BLACKS AND WHITE
HYPERINTENSITY BURDEN WAS
ASSOCIATED WITH GREATER ODDS OF
DEMENTIA.
NOW, AGAIN, ANOTHER WAVE OF
STUDY FINDS THAT BLACKS AND
HISPANICS ARE 1.1 TO 1.6 TIMES
MORE LIKELY THAN WHITES TO HAVE
MISSED OR DELAYED CLINICAL
DEMENTIA DIAGNOSIS AND BLACKS
AND HISPANICS ARE LIKELY TO HAVE
MORE FUNCTIONAL LIMITATIONS BY
THE TIME OF DIAGNOSIS.
IN THE SAME LITERATURE WE SEE
SOME FINDINGS USING CMS DATA
REPORTING THAT ASIANS, HISPANICS
AND BLACKS ARE 0.5, 0.4 AND 0.3
TIMES LESS LIKELY THAN WHITES TO
RECEIVE TIMELY DIAGNOSIS.
NOT SHOWN IS DATA FROM THE
NATIONAL ALZHEIMER'S
COORDINATING CENTER FIND
DEMENTIA PREVALENCE WAS GREATER
IN WHITES THAN BLACKS SUGGESTING
UNDER DIAGNOSIS AMONG BLACKS.
WHEN WE LOOK AT THE
U.S. VETERANS POPULATION WE SEE
A DIFFERENT PATTERN.
THEY FIND DIAGNOSE RATES FOR
BLACKS AND HISPANICS COMPARED TO
AMERICAN INDIAN OR ALASKAN
NATIVES, ASIANS AND WHITES AND
BECAUSE MOST SEE THE AGE OF
ADJUSTED INCIDENT RATES ARE
HIGHEST FOR BLACKS AND HISPANIC
PARTICIPANTS WITH THE RATES
SIMILAR AMONG AMERICAN INDIAN OR
ALASKAN NATIVE PATIENTS AND
WHITE PARTICIPANTS.
THIS IS SOME OF MY OWN WORK
AROUND DIFFERENCES IN MEDICAL
CARE AND SERVICES THAT PEOPLE
LIVING WITH DEMENTIA ALSO
RECEIVE.
THERE'S A RACIAL AND ETHNIC
MINORITY POPULATIONS ARE LESS
LIKELY TO RECEIVE A
COMPREHENSIVE DIAGNOSIS
EVALUATION AND TREATMENT THAT
OPTIMIZE OUTCOMES.
SO ONE OF THE STUDIES WE
CONDUCTED WE FIND ONLY 36% OF
OLDER ADULTS ARE SEEN BY A
SPECIALIST WITHIN FIVE YEARS OF
A DIAGNOSIS AND THE USE OF
SPECIALIST CARE IS LOWER FOR
ASIANS AND HISPANICS COMPARED TO
WHITES AND BLACKS.
WE FIND INTERESTINGLY
UNSPECIFIED DIAGNOSIS IS COMMON
IN HIGHER DIAGNOSIS FOR
NON-DEMENTIA SPECIALISTS THAN
DEMENTIA SPECIALISTS SHOWING
THERE IS VALUE IN RECEIVING
SPECIALTY CARE BUT THE DISPA
DISPARITIES COULD HAVE PROFOUND
CONSEQUENCES IN TERMS OF THE
MANAGEMENT OF DISEASE.
ALSO ASIAN RECEIVE FEWER
DIAGNOSIS AND TESTING AND SO ON
AND SO FORTH.
THERE'S ANOTHER VEIN OF WORK
THAT SUGGESTS DISPARITIES IN USE
OF PHARMACEUTICAL TREATMENTS AND
HIGHEST USE OF PHARMACEUTICALS
AMONG FEMALES AND HISPANICS AND
WHITE MALES THAN BLACK MALES.
MINORITIES ARE SIGNIFICANTLY
LESS LIKELY THAN WHITES TO USE
MEDICATIONS WE ALSO SEE
DISPARITIES IN THE USE OF
PROGRAMS AT THE ENDS OF LIFE.
BLACKS WITH DEMENTIA HAS 9%
LOWER LIKELIHOOD OF ENROLLING IN
CARE AND MANAGEMENT AND WHITES
ALSO BLACK AND HISPANICS USELESS
HOSPICE BUT MORE PATIENT
SERVICES SO SIGNIFICANTLY 60%
HIGHER IN PATIENT EXPENDITURES
AS A RESULT OF THAT UNDER
UTILIZATION OF E.D.
WE SEE LOWER COMPLETION RATES OF
ADVANCED CARE PLANNING COMPARED
TO WHITES.
THERE'S DISPARITIES IN
POSTDIAGNOSIS SURVIVAL AND A
LOWER MORTALITY RATE FOR
HISPANICS AND BLACKS COMPARED TO
WHITES AND LOWER IN AMERICAN
INDIANS AND ALASKAN NATIVES AND
WHITES AND ADVANTAGES AMONG
WHITES AT LOWER INCOMES.
AND THERE'S ALSO NARROWING OF
ASIAN AND HISPANIC WHITE
MORTALITY GAPS OVER TIME.
SO WHAT ARE THE CRITICAL GAPS IN
KNOWLEDGE?
WE NEED MORE DATA ON
SUBPOPULATIONS BECAUSE ALL THE
STUDIES WE HAVE SEEN SO FAR ARE
FOCUSSING ON LARGER GROUPS LIKE
BLACK, WHITE, HISPANICS BUT NOT
SO MUCH ON AMERICAN INDIAN,
ALASKAN NATIVES OR ASIANS AND WE
NEED TO ELUCIDATE THE CAUSES AND
MECHANISMS FOR THE OBSERVED
DISPARITIES IN DIAGNOSIS AND
CARE AND NEED TO CONSIDER OTHER
DIMENSION OF RISK BENEFITS, RISK
AND COST.
FOR EXAMPLE THE VALUE OF THE
DIAGNOSIS AND DIMENSIONS PEOPLE
LIVE WITH DEMENTIA AND
CAREGIVERS MIGHT CONSIDER TO BE
VALUABLE.
FINALLY WE NEED POLICIES AND
PRACTICES TO PROMOTE HEALTH
EQUITY.
SO HOW DO WE MAKE PROGRESS?
WE NEED TO LOOK AT THE RACIAL
DIFFERENCES IN DIAGNOSIS AND
CARE AND PROMOTE BRAIN HEALTH
EQUITY AND INCORPORATE DEMENTIA
CARE MODELS AND PREPARE THE
WORKFORCE TO CARE FOR DIVERSE
OLDER ADULT POPULATION AND
INCREASE DIVERSITY AMONG HEALTH
CARE STAFF AND RECRUIT DIVERSE
POPULATIONS IN CLINICAL TRIALS.
THIS IS IT FOR ME.
I AM CURRENTLY SUPPORTED BY NIA
THROUGH VARIOUS MECHANISMS AND
THIS IS WHAT I AM REPORTING ON
HERE.
>>THANK YOU.
NICE WORK EVERYONE.
I'M SUMMARIZE OUR DRAFT, GAPS
AND OPPORTUNITIES AND ADD YOUR
QUESTIONS TO THE Q&A AT THE
BOTTOM OF YOUR SCREEN.
IN TERMS OF THE GAPS AND
OPPORTUNITIES DRAFTED BY OUR
SESSION GROUP FIRST WE SUGGEST
CONDUCTING STAGE 1 AND 2 AND 3
RESEARCH FOLLOWING THE STAGE
MODEL FOR BEHAVIORAL
INTERVENTION AND DEVELOPMENT AS
DESCRIBED EARLIER THIS MORNING
THAT'S INCLUSIVE OF DIVERSE
POPULATIONS.
GEOGRAPHIC SETTINGS AND
ENVIRONMENTS OF CARE TO
UNDERSTAND OUR ABILITY AND
FEASIBILITY AND ACCESSIBILITY OF
EARLY DETECTION TOOLS FOR
PERSONS AT RISK FOR DEMENTIA AS
WELL AS THE IMPACTS ON HEALTH
DECISIONS AT THE IMPACT OF
SERVICES.
THE SECOND GAP IN OPPORTUNITY WE
SUGGEST CURATING REPRESENTATIVE
REAL WORLD PRIMARY CARE AND
POPULATION-BASED DATA RESOURCES
TO ACCELERATE RESEARCH ON THE
DEVELOPMENT OF FAIR AND
EQUITABLE EARLY DETECTION AND
RISK STRATIFICATION TOOLS FOR
DEMENTIA.
ELUCIDATE THE MECHANISMS
RESPONSIBLE FOR DISPARITIES IN
DEMENTIA DIAGNOSIS AND TIMING
AND CARE AND LASTLY TO IMPROVE
EQUITY IN DEMENTIA CARE.
I WILL NOW INVITE OUR WONDERFUL
PANELISTS THAT WILL BE PROVIDING
BRIEF REMARKS.
WE HAVE DEBORAH JOBE I'LL BE
INTRODUCING SHORTLY FIRST
FOLLOWED BY NATHANIEL CHIN FROM
THE UNIVERSITY OF WISCONSIN
MADISON AND DR. LARGENT FROM THE
UNIVERSITY OF PENNSYLVANIA.
I'D LIKE FOR YOU TO PROVIDE YOUR
REMARKS FIRST.
MY QUESTION IS WHAT WERE THE
NEGATIVE AND POSITIVE ASPECTS OF
DIAGNOSIS AND GETTING STARTED
WITH CARE.
>>I'M DEBORAH JOBE I WAS
DIAGNOSED WITH POSTERI II IIOR
CORTICAL ATROPHY.
I STARTED HAVING MEMORY PROBLEMS
AND OTHER SITUATIONS AS WELL AND
MY HUSBAND URGED ME TO GO TO MY
PRIMARY AND FINALLY DID.
I WAS BLESSED TO HAVE A
WONDERFUL PRIMARY CARE
EXPERIENCE WHERE SHE DID NOT
DISCOUNT MY HUSBAND OR MY
CONCERNS.
AND AFTER EXTENSIVE TESTING THE
DIAGNOSIS WAS REVEALED BUT WE
WERE PROVIDED CRITICAL NEXT
STEPS IMMEDIATELY.
AND THOSE STEPS DON'T OFTEN
HAPPEN FOR A LOT OF PEOPLE AS A
RESULT OF THE BARRIERS.
WE WERE REFERRED TO ALZHEIMER'S
ASSOCIATION WHERE WE GOT ACCESS
TO EDUCATION SUPPORT GROUPS AND
ELDER CARE RESOURCES IN OUR
AREA.
I WENT TO COGNITIVE SPEECH
THERAPY, OCCUPATIONAL THERAPY
AND A COUNSELOR SPECIALIZING IN
DEMENTIA.
AGAIN, I AM A LUCKY ONE BUT MANY
PEOPLE STRUGGLE AS A RESULT OF
THESE BARRIERS.
PRIMARY CARE EDUCATION IS HUGE.
NEED TO BE ABLE TO ASSESS AND
IDENTIFY PRIOR TO THE CLAIM.
ADVICE.
MOST PEOPLE DON'T LOOK AT
SOMEBODY MY AGE NOW AT 56 TO
EVEN CONSIDER THAT MIGHT BE AN
OPTION THAT'S HAPPENING.
ESPECIALLY IF YOU'RE A WOMAN,
THEY CHOCK IT UP TO BRAIN FOG
FROM MENOPAUSE AND STRESS.
THAT CAN WREAK HAVOC AS WELL.
ACCESS TO CARE, DIVERSE, RURAL
UNDER SERVED COMMUNITIES LACK
THOSE WITH RESOURCES AND LOCAL
RESOURCES TO AID IN THE
DIAGNOSTIC PROCESS.
MY EXPERIENCE WITH EACH AND
EVERY INDIVIDUAL SHOULD HAVE
WHEN TO GET FROM THE POINT OF
DIAGNOSIS TO THE PROCESS AFTER
WORDS, THE AFTER CARE
PROFESSION.
THE HORROR STORIES I HAVE HEARD
WITH INDIVIDUALS IN MY SITUATION
ARE HORRENDOUS AND HEART
WRENCHING.
CLOSE YOUR EYES AND PUT THIS IN
THE SCENARIO WHERE YOU'RE IN
YOUR DOCTOR'S OFFICE AND SAY YOU
HAVE ALZHEIMER'S AND OTHER
DEMENTIAS.
GET YOUR AFFAIRS IN ORDER AND
I'LL SEE YOU IN A YEAR.
WHAT WOULD BE A TRUE VALUE FOR
THOSE OF US LIVING THIS IS A
DEMENTIA CARE COORDINATOR IN ALL
MEDICAL SYSTEMS WHERE IT'S
ALMOST A CASE WORKER LIKE HEART
DISEASE OR DIABETES TO BE ABLE
TO ADVISE US, ASSIST IN
SCHEDULING, NAVIGATING THE
TERRAIN OF EDUCATION,
MEDICATIONS, THERAPIES,
FINANCIAL NEEDS, ADVANCED CARE
PLANNING, SUPPORT, TECHNOLOGY TO
ASSIST WITH INDEPENDENCE.
I BELIEVE THE TIMELY ACTIONS OF
MY PRIMARY CARE PHYSICIAN AND
THE IMMEDIATE INTERVENTIONS FOR
ME WERE CRITICAL IN GAINING MY
ADJUSTMENT.
I HAVE A QUALITY OF LIFE THOUGH
I CAN'T DO MANY THINGS BUT THE
KEY IS I AM LIVING WELL WITH
DEMENTIA.
>>THANK YOU SO MUCH, DEB.
I'M SURE YOUR WORDS RESONATE
WITH MANY FOLKS IN OUR AUDIENCE.
I WILL NOW HAND IT OVER TO OUR
NEXT PANELIST DR. NATHANIEL
CHIN.
>>THANK YOU, EVERYONE.
AS WE KNOW, THE 2020
U.S. PREVENTIVE SERVICES TASK
FORCE RECOMMENDATION IS NOT FOR
UNIVERSAL SCREENING WHICH MEANS
IT HAS TO BE TRIGGERED.
IN CLINICAL PRACTICE THE TRIGGER
COULD BE A CONCERN FROM THE
PATIENT FAMILY MEMBER OR
PROVIDERS THEMSELVES.
A CONSEQUENCE OF THIS APPROACH
IS IT HAS CONTRIBUTED TO MANY
UNDIAGNOSED CASES PARTICULARLY
AMONG PEOPLE OF COLOR.
IN THINKING WHY MORE PEOPLE ARE
NOT GETTING A COGNITIVE SCREEN I
COME BACK TO THE FINDINGS FROM
THE ALZHEIMER'S DISEASE
INTERNATIONAL 2021 WORLD
ALZHEIMER'S AND ASSOCIATION 2022
FACTS AND FIGURES REPORT THAT
HIGHLIGHT CONFUSION, BIAS AND
STIGMA ARE NOT JUST AMONG THE
PUBLIC BUT HEALTH CARE
PROVIDERS.
IF BOTH THE HEALTH CARE
PROVIDERS AND THE PATIENT
CAREGIVERS LACK THE INFORMATION
ON COGNITIVE AGING HOW CAN THERE
BE A RELIABLE TRIGGER FOR
SCREENING AND EVENT DIAGNOSIS.
VALIDATED SCREENING TOOL AND
PROTOCOL WOULD BE HELPFUL FOR
PROVIDER IN FACILITATING THE
IDENTIFICATION HOWEVER, UNLESS
THIS IS DONE IN A SYSTEMATIC OR
AUTOMATIC WAY, THE LACK OF
KNOWLEDGE AND BIAS AMONG
PROVIDERS IS STILL HAMPERING THE
TRIGGER TO UTILIZE SUCH A TOOL.
USING ELECTRONIC HEALTH RECORD
AS EXPANDING THE TOOL FOR
IDENTIFICATION BUT STILL COULD
FACE SOME CONSEQUENCES OF STIGMA
AND BIAS.
IF PROVIDERS ARE NOT ASKING
ABOUT COGNITION OR DOCUMENTING
THE CONVERSATIONS WHEN THEY
HAPPEN, CHART RELIABILITY
DECLINES.
THIS MAY IMPROVE WITH VIRTUAL
SCRIBES BUT IMPROVED EDUCATION
FOR PROVIDERS IS STILL NEEDED
AND SHOULD BE CENTRAL.
TO END, HEALTH CARE CANNOT RELY
ON PRIMARY CARE CLINICS ALONE.
IF HEALTH CARE WISHES TO HELP
COMMUNITIES, ESPECIALLY
COMMUNITIES OF COLOR IT NEEDS TO
GO TO THE COMMUNITY.
DOING SO CAN HELP PEOPLE BUT
ALSO ADDRESSES THE STIGMA, BIAS
AND MISINFORMATION OUT THERE.
I APPRECIATE THE SLIDE THAT SAID
PRIMARY CARE IS NOT A PLACE BUT
AN IDEA.
AND ALONG THOSE LINES I PROPOSE
WE HAVE MORE COMMUNITY HEALTH
WORKERS WORKING FOR HEALTH CARE
ORGANIZATIONS THAT GO IN THE
COMMUNITY TO PROVIDE EDUCATION
ON CHRONIC DISEASES AND
POTENTIAL TREATMENTS AND PROMOTE
HEALTHY HABITS INCLUDING BRAIN
HEALTHY HABITS AND DO THE
SCREENING FOR MANY CHRONIC
HEALTH CONDITIONS INCLUDING
DEMENTIA BUT NOT LIMITED TO THAT
AND LOOKING AT DIABETES,
HYPERTENSION AND DEPRESSION AND
WE CAN LOOK AT THE SCREENING
AND/OR THE PROCESS OF WHAT TO DO
AFTER A POSITIVE SCORE.
HEALTH WORKERS CAN THEN CONNECT
WITH CLINICS AND SPECIALISTS SO
THE TRANSITION CAN HAPPEN
QUICKER AND AT AN ESTABLISHED
COMMUNITY CASE.
IT DOESN'T HAVE TO BE A CLINIC.
ALL THIS CAN BE DONE WITH AN
ELECTRONIC HEALTH RECORD AND
ACCESSIBLE DATA.
ULTIMATELY WORKING WITH THE
COMMUNITY MEANS WORKING WITH
FUTURE PATIENTS AND CARE
PARTNERS TOO.
>>OUR NEXT PANELIST IS
DR. EMILY LARGENT.
>>THANK YOU.
AS PANELISTS REMARKS HAVE
HIGHLIGHTED PATIENTS STAND TO
BENEFIT FROM THE EARLY DETECTION
OF DEMENTIA AND CAREGIVERS STAND
TO BENEFIT AND WILL BE AFFECTED
BY EARLY DIAGNOSIS.
MOVING FORWARD I WOULD SAY IT'S
ESSENTIAL TO CONTINUE SUPPORTING
RESEARCH AND DEVELOPING
INTERVENTIONS THAT CENTER CARE
STRUCTURES AND SUPPORTS ON THE
PATIENT CAREGIVER DIAD.
I HAVE FIVE ILLUSTRATIONS.
FIRST WE NEED TO NAME THE CARE
PARTNER.
IN CLINICAL SETTINGS WHEN
THERE'S A DIAGNOSIS OF
ALZHEIMER'S OR RELATED DEMENTIA
WE NEED TO INCLUDE THE CARE
PARTNER'S NAME AND CONTACT
INFORMATION IN THE CHART.
IT HIT DOESN'T TYPICALLY HAPPEN.
HAVING A NAME WILL HAVE A
CONTACT FOR SUPPORT AND
RESEARCH.
IN MY ROLE WITH NIA IMPACT
COLLABORATORY WE REGULARLY SEE
OUTREACH HAMPERED BY THE
INABILITY TO REACH CAREGIVERS.
PHARMACIES COULD BE A SITE OF
COMMUNITY-BASED INTERVENTION BUT
OFTEN LACK CAREGIVERS AND
COMMUNICATING AND NEED TO LOOK
AT CAREGIVER EXPERIENCE AND WELL
BEING.
CONSIDER SOME DATA SUGGESTS
NEITHER EARLY DIAGNOSIS WHEN THE
BURDEN OF SYMPTOMS IS LOWER NOR
THE ABILITY OF DISEASE-MODIFYING
THERAPIES WILL EXTEND TO DISEASE
AND DEMENTIA AND IT CAN SPILL
OVER TO CAREGIVERS AND AFFECT
CARE FOR THE PERSON LIVING WITH
DEMENTIA.
WE NEED TO APPRECIATE THE
EXPERIENCE OF DIVERSE CAREGIVERS
WHETHER IT'S RURAL AND URBAN AND
MINORITIZED POPULATIONS AND
ETCETERA.
THIRD WE NEED TO DEVELOP AND PAY
EVIDENCE-BASED COLLABORATIVE
CARE MODELS THAT FOSTER THE WELL
BEING OF PEOPLE LIVING WITH
DEMENTIA AND REDUCE STRAIN ON
CAREGIVERS.
THIS IS AN OPPORTUNITY TO TAKE
INTO ACCOUNT SOCIAL, ECONOMIC
AND INSTITUTIONAL BARRIERS AND
TO ADDRESS DISPARITIES.
CARE MUST BE TAKEN TO NAME AND
AMEALIORATE THE STRUCTURES THAT
MAKE CARE GIVING DIFFICULT AND
NOT DEMAND CAREGIVERS BEING
RESILIENT TO THE CHALLENGES THEY
FACE.
FOURTH, WE NEED TO CONTINUE
WORKING ON HELPING CARE
PARTNERS.
THEY'RE VULNERABLE TO LOWER
QUALITY CARE AND POORER
OUTCOMES.
CAN TECHNOLOGIES HELP FACILITATE
OR RECONCEPTUALIZE CARE GIVING?
FINALLY, WHEN A PATIENT HAS
ALZHEIMER'S DISEASE OR A RELATED
DEMENTIA, CARE GIVING IS NOT
JUST CARE FOR A BODY BUT SUPPORT
OF A MIND.
THE CARE PARTNER PLAYS AN
ESSENTIAL ROLE IN SCAFFOLDING
THE PERSON LIVING WITH
DEMENTIA'S THINKING AND
SUPPORTING THEIR DECISION
MAKING.
DECISION MAKING'S IMPORTANT
BECAUSE DEMENTIA IS A DISEASE OF
AUTONOMY.
TOO OFTEN WE FOCUS ON ADVANCED
CARE PLANNING BUT ONCE AN
INDIVIDUAL IS DIAGNOSED WITH
DEMENTIA THEY FACE COUNTLESS
DECISIONS ACROSS DOMAINS.
THEY'RE OFTEN MADE
COLLABORATIVELY WITH THE PERSON
LIVING WITH DEMENTIA AND THEIR
CARE PARTNER PARTICULARLY AS
DIAGNOSIS COMES EARLIER AND
PEOPLE LIVING LONGER WITH
DEMENTIA WORK TO SPAN ALL
DOMAINS OF DECISION MAKING AS
THE SAMPLES SUGGEST EARLY
DIAGNOSIS MUST ACCOUNT FOR THE
PERSON WITH DEMENTIA AND THEIR
CAREGIVER.
THANK YOU.
>>I'LL NOW ASK ALL OF OUR
DISCUSSANTS TO JOIN US ON THE
SCREEN AND GREAT SESSION.
SUBMIT QUESTIONS DURING KWAEP ON
THE LIVE STREAM AND YOU CAN
SUBMIT QUESTIONS THROUGH THERE.
GREAT PRESENTATIONS AND I THINK
I'LL KICK IT OFF WITH THE IDEA
OF PRIMARY CARE IS NOT A PLACE
BUT AN IDEA.
AND MOVING BEYOND THE
TRADITIONAL CARE SETTINGS AND SO
I HEARD A COUPLE OF DIFFERENT
COMMENTS DEB POINTED OUT NEEDING
A DEMENTIA CARE LIAISON IN
CLINICAL SETTINGS AND DR. CHIN
POINTED OUT THE COMMUNITY HEALTH
WORKERS AND THEIR ABILITY TO GO
INTO COMMUNITIES AND DO A LOT OF
THIS WORK.
WHAT ARE OTHER THOUGHTS TO MOVE
OUTSIDE THE TRADITIONAL SETTING
TO HELP PEOPLE WHERE THEY ARE IN
TERMS OF AN EARLY DIAGNOSIS IN
AN EQUITABLE PLANNER?
-- MANNER.
LET'S START WITH DR. SHAH.
>>SURE.
THANK YOU.
IT'S WONDERFUL TO BE ON THE
SESSION WITH EVERYBODY AND THE
RESPONSES.
I THINK WE HAVE TO INCLUDE MORE
OF THE ENGAGEMENT OF DIFFERENT
RESOURCES THAT INTERACT WITH THE
PRIMARY CARE PROVIDERS AND
BROADER ECO SYSTEM, SOCIAL
SERVICES AND EVEN LOCAL
RESTAURANTS.
THERE'S AN ENTIRE ECO SYSTEM
THAT MONITORS AND ENGAGES WITH
US IN OUR EVERYDAY LIVES AND IF
WE CAN BUILD THE CAPABILITIES OF
SHARING INFORMATION OR ENGAGE
AND LEARN FROM EACH OTHER, I
THINK WE GET BETTER AT BEING
ABLE TO UTILIZE ALL OF OUR
RESOURCES AVAILABLE IT'S ALWAYS
IMPRESSIVE WITH THE STIGMA
ASSOCIATED WITH ALZHEIMER'S
DISEASE PEOPLE THINK NOBODY
RECOGNIZES SOMETHING IS GOING ON
BUT USUALLY PEOPLE RECOGNIZE IT
AND HOW DO WE GET THAT IN OUR
SPACES WHERE WE CAN HAVE
CONVERSATIONS AND START THE
DIAGNOSTIC AND TREATMENT
OPTIONS.
>>THANK YOU.
DR. DRABO.
>>ALSO HAVING IN PLACE SOME
MECHANISMS FOR A SURVEILLANCE
SYSTEM THE WAY WE HAVE FOR
EXAMPLE FOR OTHER CONDITIONS
LIKE CANCER.
IT WOULD BE VERY HELPFUL TO
MONITOR AT THE COMMUNITY LEVEL.
WE KNOW THERE'S REALLY GOOD
TOOLS AVAILABLE RIGHT NOW TO SEE
WHETHER SOMEONE HAS COGNITIVE
DIFFICULTY OR COGNITIVE
IMPAIRMENT OR ETCETERA.
IF WE CAN DO MONITORING AT A
COMMUNITY LEVEL THIS COULD BE
HELPFUL IN TERMS OF HELPING US
IDENTIFY EARLY DEMENTIA
>>THANK YOU.
DR. McCREEDY DO YOU HAVE POINTS
YOU'D LIKE TO ADD?
>>I THINK WORK WITH PARAMEDICS
AND FIRST RESPONDERS AND PEOPLE
OUT THERE INTERACTING WITH FOLKS
LIVING AT HOME.
MEALS ON WHEELS IS AN EXAMPLE I
GAVE.
THINKING OF THE NATURAL TOUCH
POINTS AND HOW TO LEVERAGE THOSE
EXISTING TOUCH POINTS TO
IDENTIFY PEOPLE.
MAYBE NOT BY SAYING WHICH DO YOU
THINK HAVE DEMENTIA BUT OTHER
TYPES AND ALERTING PEOPLE TO
OTHER SYSTEMS THEY COULD BE ON
THE LOOK OUT WHEN THEY'RE DOING
THEIR USUAL CARE FOR THESE
PEOPLE.
>>THANK YOU, DR. McCREEDY.
LET'S TAKE A QUESTION FROM THE
Q&A, LUKE.
>>THERE'S A FEW THAT TOUCH ON A
COMMON THEME HERE AROUND
DIAGNOSIS AND THE QUESTION IS
ABOUT LIMITATIONS IN SOME OF OUR
TRADITIONAL MEASURES.
SO POINTING TO DR. CHIN SAYING
WE NEED ONE MEASURE.
SOMEONE ASKED WHAT IS THAT
MEASURE.
SOMEONE ELSE MENTIONED IF
THERE'S DISPARITIES IN TIMELY
AND SPECIFIC DIAGNOSIS HOW MUCH
HAS TO DO WITH THE BIASES IN THE
MEASURES DEVELOPED OR LANGUAGE
BARRIERS OR THINGS LIKE THAT.
THEY MAY IMPACT PERFORMANCE ON
MEASURES.
I'LL STOP THERE FIRST AND I'LL
JUMP INTO ANOTHER ONE IN A
SECOND.
COMMENTS.
I DON'T KNOW NATE OR EMMANUEL
WANTED TO TOUCH ON THOSE BECAUSE
YOU COMMENTED ON THOSE IN YOUR
DISCUSSION.
>>I CAN GO FIRST.
YES, THERE'S CERTAINLY A NEED --
THE TESTING TOOLS NEED TO BE
TESTED AND VALIDATED FOR DIVERSE
POPULATIONS.
WE KNOW IN OTHER DISEASE AREAS,
FOR EXAMPLE, MENTAL HEALTH,
THOSE ISSUES ARE THERE AND FOR
ALZHEIMER'S AND DEMENTIA THAT
ISSUE IS STILL THERE AND UNLESS
WE ADDRESS IT WE WON'T GET GOOD
MEASURES AND IDENTIFY WHO IS
TRULY SUFFERING OR HAS DEMENTIA
AND WHO DOESN'T.
THAT TESTING AN VALIDATION
PROCESS NEEDS TO DONE.
>>I WOULD ADD TOO I THINK THE
NEUROPSYCHOLOGISTS PROBABLY THE
ONES ON THIS CALL ARE BRILLIANT
AND HAVE FROM DOUBT THEY'LL
VALIDATE THE TOOLS NEEDED BUT
I'D ALSO RECOMMEND WE THINK OF
THE TOOL AS JUST A TOOL AND PUT
IT IN CONTEXT TO THE PERSON.
WHEN I THINK OF SCREENING I
DON'T JUST THINK OF A 15-MINUTE
COGNITIVE SCREENER THAT LOOKS AT
OBJECTIVE IMPAIRMENT JUST LOW
SCORER.
IT'S TALKING TO A PERSON ABOUT
WHAT ARE YOU LIVING.
WHAT ARE THE SYMPTOMS.
I FEEL LIKE DR. SHAW MENTIONED
SOME THINGS A PERSON COULD
DESCRIBE.
PUTTING INTO CONTEXT A PERSON'S
LIVED LIFE OF WHAT ARE THEIR
SYMPTOMS AND WHAT ARE THEY
NOTICING AND WHAT ARE OTHERS
NOTICE AND WHAT'S A POTENTIAL
OBJECTIVE SCORE THAT WOULD
TRIGGER A MORE THOROUGH
EVALUATION.
I THINK YOU COULD HAVE MULTIPLE
OPTIONS.
I DIDN'T MEAN TO IMPLY THERE ONE
TEST BUT I FEEL THERE COULD BE A
PROCESS WE DON'T NEED A
PHYSICIAN OR NEUROLOGIST IN
PARTICULAR.
I SAW A COMMENT OR NOT A
SPECIALIST BUT I DON'T THINK WE
NEED SPECIALISTS IN ORDER TO
TALK TO SOMEONE TO GET A SENSE
OF WHAT ARE YOU EXPERIENCING AND
COULD THIS BE ABNORMAL?
>>THANKS.
MAYBE ONE COMMENT RELATED TO
THAT SPECIFICALLY EQUIPPING NOT
JUST SPECIALISTS AND
GERIATRICIANS BUT OTHERS
INVOLVED IN THE CARE PROCESS
LIKE DEMENTIA CAREGIVERS.
ARE THERE RECOMMENDATIONS AROUND
TRAINING OR OTHER IDEAS YOU HAVE
ABOUT HOW TO EQUIP PEOPLE NOT
MEDICALLY TRAINED BUT EXPERTS IN
CARE GIVING TO DO A BETTER JOB
OF SCREENING AND MONITORING AND
THINGS LIKE THAT FROM A
MEASUREMENT PERSPECTIVE.
>>AGAIN, I THINK WE'RE NEVER
GOING TO HAVE A PERFECT TOOL OR
EVEN IF WE GET MULTIPLE TOOLS.
THERE'S FUNDAMENTAL RESEARCH
THAT STILL HAS TO BE DONE AROUND
WHAT ARE THE CAUSAL PATHWAYS
TOWARDS A DEMENTIA.
WORK WITH BRAIN AUTOPSY AND
LOOKING AT BRAINS IN PEOPLE THAT
HAVE BEEN AGING AND DONATE THEIR
BRAINS AT TIME OF DEATH SHOWS
THE PATHWAY TO DEMENTIA IS VERY
DIVERSE.
IT USUALLY DOES INCLUDE
ALZHEIMER'S DISEASE BUT 60% WE
STILL DON'T KNOW THE DRIVERS FOR
COGNITIVE LOSS.
WE HAVE MORE TO DO TO IDENTIFY
THE BEST TOOLS.
WE HAVE TO BALANCE WHAT HAPPENS
WITH POPULATION TOOLS THAT WE DO
IN LARGE GROUPS AND TAKE THAT
INFORMATION AND LOOK AT THE
PERSON IN FRONT OF US AND WHO
THEY COME WITH THEIR LIVED
EXPERIENCE AND DO THAT PRECISION
TEST ABOUT WHETHER THOSE THINGS
FIT.
THAT PATTERN RECOGNITION AND
ENGAGEMENT I THINK PEOPLE THAT
KNOW EACH OTHER HAVE A GOOD
SENSE OF THAT.
I ALWAYS COME BACK TO IF YOU SEE
SOMETHING, SAY SOMETHING.
THAT'S THE SIMPLEST TOOL IF A
CAREGIVER IS NOTICING A CHANGE,
WE HAVE TO GET THEM TO TALK
ABOUT IT AND BRING IT UP AND TO
BE RECEPTIVE OF SAYING LET'S
LOOK AT IT AND TRY TO FIGURE IT
OUT.
>>WE DON'T OFTEN SEE CAREGIVERS
IN THE ELECTRONIC HEALTH RECORD
AND IN THE NOTES WE CAN SEE THE
DOCTOR TAKES A NOTE THE PERSON
WHO ACCOMPANIED THEM SAID THEY
HAD THIS OR THAT GOING ON.
THAT'S A WAY CAREGIVERS CAN
APPEAR IN THE ELECTRONIC HEALTH
RECORD OF SOMEONE LIVING WITH
DEMENTIA AND GETS TO THEIR
KNOWING OF THE EARLY SYMPTOMS
AND SIGNS THAT MAY BE ANOTHER
WAY TO LOOK AT THAT INFORMATION.
>>IF I MAY, IT WAS MY CARE
PARTNER, MY HUSBAND THAT NOTICED
THE MEMORY ISSUES AND MY SPEECH,
MY THOUGHT PROCESS WAS VERY
SPORADIC.
HE'S THE ONE THAT NOTICED THE
LITTLE THINGS THAT JUST SAID
SOMETHING IS WRONG.
THIS IS NOT YOU.
AND I'M AN EDUCATED MOSTLY ONE
THAT STRIVES TO EXCEED.
SOMEONE FROM THE OUTSIDE WILL
LOOK AT ME AND SAY, NA, IT CAN'T
BE.
BUT HE KNOWS HE KNEW BEFORE I
REALIZED.
HE STILL SEES THINGS THAT
HAPPEN.
I DON'T SEE IT IN MYSELF BUT HE
DOES AND IT'S CRITICAL THE
PARTNER BE A PART OF THE
DIAGNOSTIC PROCESS.
THERE WAS A TAKE.
SO YOU ARE AN EXAMPLE OF HOW TO
TAKE A DIAGNOSIS AND TAKE IT
FULL ON AND ADVOCATE FOR
YOURSELF AND WORK WITH YOUR
PARTNER AND CARE PROVIDERS.
SOMEONE HAS A QUESTION ON THE
NEGATIVE IMPACT ON PEOPLE WHO
HAVE A DIAGNOSIS AND IS THERE
RESEARCH OR OTHER THINGS YOU'RE
AWARE OF LIKE DEPRESSION OR
OTHER NEGATIVE OUTCOMES PEOPLE
HAVE EXPERIENCED?
>>I DID IT.
IT TOOK A WHILE.
HAVING THAT COUNSELOR THAT
SPECIALIZED IN DEMENTIAS WAS
HELPFUL BUT I WENT THROUGH
SERIOUS DEPRESSION AND TO BE
HONEST I DIDN'T WANT TO LIVE.
I DIDN'T WANT TO PUT MY CHILDREN
AND FAMILY THROUGH THIS.
SO DEPRESSION, I TELL PEOPLE
IT'S OKAY TO TAKE AN
ANTIDEPRESSANT.
IT'S ALL RIGHT IF IT'S GOING TO
HELP.
DON'T SHY AWAY BECAUSE OF THE
STIGMA OF IT.
WHAT WOULD HELP IS
SOCIALIZATION, EDUCATION AND
ALSO PRACTICAL DAY TO DAY TOOLS.
A TOOLBOX.
SO TECHNOLOGY.
I USE ALEXA, I USE TILES.
MY HUSBAND HAS ALARM ON THE
DOORS IN CASE I WANDER.
THERE'S SO MUCH OUT THERE PEOPLE
CAN BE EXPOSED TO TO HELP MAKE
YOU FEEL LIKE YOU'RE STILL A
PERSON.
YOU HAVE VALUE STILL.
YOU'RE STILL YOU.
THERE'S CHANGES, YES, DRIVING.
MORE OPTIONS FOR TECHNOLOGY.
I CAN'T DRIVE ANYMORE.
I WISH I COULD.
AND THEN I THINK SOCIAL
ACTIVITIES FOR ME I WAS ABRUPTLY
CUT FROM AN OVER 30-YEAR PLUS
PROFESSIONAL CAREER.
I FOUND I LOST A HUGE PART OF
ME.
BEING ABLE TO HAVE DIFFERENT
SOCIAL ACTIVITIES AND DIFFERENT
PROGRAMS AND/OR GAMES OR
WHATEVER TO HELP THAT PERSON
LIVE AS INDEPENDENTLY AND
QUALITY.
>>THANK YOU VERY MUCH.
I'LL CHANGE TOPICS FOR A SECOND.
THERE'S A QUESTION EARLY ON
ABOUT SOME OF THE RACIAL AND
ETHNIC DIFFERENCES THAT WERE
OBSERVED AND REPORTED.
SPECIFICALLY REGARDING
AMERIAMERICAN
INDIAN AND ALASKAN NATIVE RATES
AND THE RATES CONFLICT WITH THE
STUDIES THAT ARE POPULATION
SPECIFIC IN THE RISK FACTORS
WHICH POINT SIGNIFICANTLY TO
DISPROPORTIONATE RATES OF
FACTORS AMONG POPULATIONS WITH
SOME EVEN HIGHER THAN BLACK
POPULATIONS IN THE STUDIES.
FEEL FREE TO WEIGH IN.
ARE THERE BIGGER OBSERVATIONS
YOU MADE OR SPECIFIC FINDINGS
BECAUSE OF PECULIARITY IN DATA
SETS OR HOW WE COLLECT DATA OR
THOUGHTS ON THAT QUESTION.
>>AROUND THE VETERANS AFFAIRS
POPULATION.
IT'S DIFFERENT FROM THE GENERAL
POPULATION.
THERE ARE PROBABLY AT THE HIGHER
RISK OF DEMENTIA, ONE WOULD
ARGUE BECAUSE OF THE TRAUMA
HAVING BEEN ON THE FIELD OF
BATTLE.
WHAT WE SEE IN THE POPULATION IS
DIFFERENT.
THIS SEEMS TO SUGGEST THERE ARE
DIFFERENT MECHANISMS AND COULD
BE RELATED TO DIFFERENCES IN
COMORBIDITIES IN THE GENERAL
POPULATION VERSUS THE GENERAL
POPULATION.
THAT'S ONE HYPOTHESIS WE HAVE.
>>THERE'S COMMENTS IN THE Q&A
THAT ARE GOOD BUT TOUCH ON THE
THEMES WE'VE ALREADY BEEN
ADDRESSING.
I'LL BRING ONE UP IN THE
INTERIM.
THERE'S QUESTIONS ABOUT
COMPLICATIONS RELATED TO COVID
AND DIAGNOSIS AND WONDER IF THE
TOPIC OF COMORBIDITIES AND
DIFFERENTIATING EARLY CHANGES
FROM AGE-RELATED CHANGE OR OTHER
ILLNESSES THAT IMPACT COGNITIVE
FUNCTION LIKE COVID EMERGING
POST-COVID SYMPTOMS.
DO YOU HAVE GUIDANCE HOW TO
NEGOTIATE THE FACTORS THAT CAN
IMPACT THINGS LIKE COGNITIVE
FUNCTION THAT MAY HAVE DIFFERENT
ORIGINS OR ROUTES?
>>IN MY DISCUSSIONS WITH
PRIMARY CARE PHYSICIANS, THIS IS
ALWAYS THE CHALLENGE OF MAKING
THE DIAGNOSIS BECAUSE OF VARIOUS
COMORBIDITIES SO DEMENTIA
DOESN'T TEND TO HAPPEN BY ITSELF
AND TENDS TO BE SURROUNDED BY
OTHER CONDITIONS.
I THINK THAT'S WHERE PRIMARY
CARE PHYSICIANS USUALLY ARE GOOD
AT STARTING THE UNDIFFERENTIATED
PROCESS AND FIGURE OUT PATTERNS
BASED ON COLLECTING A HISTORY,
DOING AN EXAMINE AND USING TIME
TO HELP US TEST SOME IDEAS OUT
AND SOMETHING ELSE IS HAPPENING
AND SEEING WHAT HAPPENS WHETHER
THOSE HYPOTHESES OF WHAT MIGHT
BE CAUSING THE COGNITIVE CHANGES
ARE HANDLED.
AND WE HAVE CHALLENGES WITH
OTHER CONDITIONS SUCH AS COVID
EXPOSURES AND VARIOUS OTHER
CONDITIONS LIKE VASCULAR
DISEASES AND WE HAVE TO BE AWARE
OF THEM AND CONTINUE TO ADJUST
FOR THE PERSON IN FRONT OF US.
>>NATE, GO AHEAD.
>>I WAS GOING ADD THAT IN THIS
FIELD WE HAVE TO BE COMFORTABLE
NOT KNOWING EVERYTHING AND I
THINK WE'RE GETTING THERE BUT
THE IDEA OF COVID SCIENTISTS ARE
LOOKING INTO THE MECHANISMS AND
POTENTIAL CONTRIBUTION BUT WE
JUST DON'T KNOW.
IN WISCONSIN WE TALK A LOT ABOUT
LYME'S DISEASE AND THE IDEA OF
INFLAMMATION AND WE TALK TO THE
CLINICAL SYNDROME AND DEMENTIA
AND WE DIAGNOSE AND GETTING TO
THE ETIOLOGY IS HARD AND
HOPEFULLY WITH MORE BIOMARKERS
WELL GET BETTER BUT ALLOWS FOR
US TO BE OPEN TO WHAT IS IT THAT
MATTERS TO YOU.
WHAT CAN WE WORK ON AND SO
THERE'S A DUALITY OF TALKING
ABOUT ETIOLOGY AND ABOUT BRAIN
HEALTH AND THE IDEA WE CAN DO
THINGS TO IMPROVE OUR SYMPTOMS
POTENTIALLY AS WELL AS OUR
QUALITY OF LIFE.
I THINK YOU CAN DO BOTH AT THE
SAME TIME.
WHILE STILL ACKNOWLEDGING I
DON'T KNOW EXACTLY WHAT THE
UNDERLYING PATHOLOGY IS.
>>I RECEIVED A COMMENT FROM
SOMEONE ASKING ABOUT THE
COMPLEXITIES OF DIAGNOSING MIXED
DEMENTIA TO DR. CHIN'S POINTS
ADD A LAYER OF COMPLEXITY TO ALL
THIS.
>>FROM A PATIENT STANDPOINT,
WHEN SOMEBODY GOES IN AND THEY
HAVE STOMACH PAIN OR SOMETHING
LIKE THAT, WHEN YOU DO YOUR
INVESTIGATIONS YOU'RE
INVESTIGATIONS ARE THOROUGH
LOOKING AT ALL ASPECTS.
MY ONLY ASK IS INCLUDING THE
POSSIBILITY OF MCI OR DEMENTIA
RELATED SYNDROME WHEN LOOKING AT
EVEN YOUNGER PEOPLE TO CAPTURE
THE EARLY STAGE.
>>THANK YOU SO MUCH.
GREAT POINTS.
I THINK WE'RE JUST ABOUT OUT OF
TIME.
I DON'T KNOW IF WE HAVE TIME FOR
ANOTHER QUESTION, LUKE.
A ROUND OF APPLAUSE FOR OUR
WONDERFUL SESSION 2 GROUP AND
WE'LL NOW HAND IT OVER TO OUR
CO-CHAIRS.
THANK YOU.
>>THANK YOU FOR THE EXCELLENT
PRESENTATIONS IN SESSION 2 AND
THE IMPORTANT DISCUSSION
AFTERWARDS.
WE'LL INTERESTING TO OUR PLENARY
TALK CHALLENGES AND BEST
PRACTICES FOR DEVELOPMENT AND
PREVENTION FOR PERSONS LIVING
WITH DEMENTIA AND CARE PARTNERS.
OUR PRESENTERS, DR. COLLINS
FOLLOWED BY A DISCUSSION
MODERATED BY DR. ONKEN AND OUR
PRESENTERS, DR. HEFFNER AND
DR. MAUSBACH AND DR. McCRAE.
I WELCOME DR. COLLINS.
>>THANK YOU, IT'S GREAT TO BE
HERE.
>>THANK YOU.
OKAY.
IT'S REALLY GREAT TO BE HERE.
THANK YOU SO MUCH FOR INVITING
ME AND GIVING ME A CHANCE TO
TALK ABOUT SOME NEW METHOD
OLOGICAL DEVELOPMENTS IN THIS
AREA.
HERE'S AN OUTLINE OF MY TALK
TODAY.
I'M GOING TO TALK ABOUT PLANET
EARTH'S APPROACH TO INVENTION
DEVELOPMENT AND EVALUATION AND
INTRODUCE ANOTHER PLANET YOU MAY
NOT HAVE HEARD OF, PLANET TERRA
AND THEY HAVE THEIR OWN STORY OF
DEMENTIA CARE AND PREVENTIONS
AND THEN WHERE TO LEARN MORE.
HERE ON PLANET EARTH WE USE THE
CLASSICAL TREATMENT PACKAGE
APPROACH FOR INTERVENTION
DEVELOPMENT AND EVALUATION.
WE HAVE USED IT FOR PRETTY MUCH
THE ENTIRE HISTORY OF
INTERVENTION DEVELOPMENT AND
EVALUATION.
THIS APPROACH ANY COMPONENTS OF
THE INTERVENTION ARE PERHAPS
PILOT TESTED AND THEN ASSEMBLED
INTO AN INTERVENTION PACKAGE AND
AS A PACKAGE IT'S EVALUATED IN
CLASSICAL EVALUATION RANDOMIZED
CONTROL TRIAL AN EXPERIMENTAL
DESIGN.
USUALLY THERE'S TWO EXPERIMENTAL
CONDITIONS OR ARMS AND ONE OF
THOSE PEOPLE ARE RANDOMLY
ASSIGNED TO ONE OR THE OTHER AND
IN ONE OF THEM AND USUALLY
THERE'S TWO A PARTICIPANT WILL
UNDER GO THE INTERVENTION AND
THEN THE OTHER ONE IS A CONTROL.
SO THE IDEA IS A DIRECT
COMPARISON FOR THE PERFORMANCE
OF THE INTERVENTION TO THE
CONTROL CONDITION.
THE VAST MAJORITY USES THIS
EVALUATION RANDOMIZED CONTROL
TRIAL OR CLINICAL TRIAL
SOMETIMES CALLED TO THE
EXCLUSION OF ALMOST ANY OTHER
EXPERIMENTAL DESIGN.
THERE'S A RECENTLY DISCOVERED
PLANET IDENTICAL TO EARTH.
THE ONLY DIFFERENCE IS THAT
EARTH HAS BEHAVIORAL
INTERVENTIONS IN DEMENTIA CARE
AND TERRA DOES NOT YET HAVE
INTERVENTIONS IN DEMENTIA CARE.
COME WITH ME ON THE SPACE SHIP
AND WE'RE GOING TO PLANET TERRA
AND LOOK AT WHAT THEY'RE DOING
TO DO.
TERRA'S OBJECTIVES ARE TO BUILD
A KNOWLEDGE BASE ABOUT WHAT
DEMENTIA AND DEMENTIA CARE
INTERVENTION STRATEGIES WORK,
FOR WHOM AND WHY.
FIRST, INHERENT KNOWLEDGE BASE
THEY WANT TO USE IT TO DEVELOP
INTERVENTIONS WITH IMMEDIATE
HIGH PUBLIC HEALTH IMPACT.
THEY WANT IMMEDIATE HIGH PUBLIC
HEALTH IMPACT AND THIRD TO KEEP
MAKING IMPROVEMENTS OVER TIME.
IMMEDIATE HIGH IMPACT AND
IMPROVEMENTS OVER TIME.
TERRA HAS BEEN WATCHING EARTH
AND WHAT WE'VE BEEN DOING AND
THOUGHT THEY'D START WITH A
TREATMENT PACKAGE APPROACH AND
THEN RE-EVALUATE.
THE CLASSICAL TREATMENT APPROACH
FOR FIVE YEARS AND
RE-EVALUATION.
THEY'LL IDENTIFY THEIR
COMPONENTS AND PUT THEM TOGETHER
IN AN INTERVENTION AS A PACKAGE
AND EVALUATE IT IN CLASSICAL
EVALUATION RCT.
SO FIVE YEARS GO BY AND LET'S
LOOK AT WHAT TARA CONCLUDED.
IT LOOKED AT THE COHIRNT
KNOWLEDGE BASE AND NOTICED WHEN
THEY THE APPROACH A DETECTABLE
AFFECT IT WASN'T CLEAR WHY IT
WORKED.
THE REASON WAS ALL THE
COMPONENTS WERE INCLUDED IN THE
TREATMENT GROUP.
KNOWLEDGE WERE INCLUDED IN THE
CONTROL GROUP.
THEY COULDN'T DISENTANGLE THE
AFFECTS OF THE INDIVIDUAL.
IT WASN'T CLEAR WHICH WERE
WORKING AND WHICH WERE NOT.
WHEN AN INTERVENTION DOES NOT
SHOW A SIGNIFICANT EFFECT IN THE
RCT, IN OTHER WORDS, THE RCT DID
NOT INDICATE THE INTERVENTION
WAS HAVING ANY EFFECT IT WASN'T
CLEAR WHY IT DID NOT WORK.
IT DIDN'T PROVIDE A SENSE OF
WHAT THE NEXT STEPS SHOULD BE.
THE CONCLUSION WAS THEY WERE NOT
SUCCESSFULLY BUILDING A
KNOWLEDGE BASE.
THE SECOND OBJECTIVE WAS
IMMEDIATE MY PUBLIC HEALTH
IMPACT.
MOST THE INVENTIONS WERE TOO
EXPENSIVE, COMPLEX OR BURDENSOME
TO BE IMPLEMENTED.
THE REASON WAS THAT THE
SCIENTISTS WERE FOCUSSED ON
GETTING A SIGNIFICANT AFFECT IN
THE RCT AND WEREN'T THINKING
VERY MUCH ABOUT WHETHER THE
INTERVENTIONS WERE PRACTICAL.
IN FACT, THE WAY THE SCIENTISTS
WERE THINKING WERE FIRST, LET'S
GET AN EFFECT IN THE RCT AND
THEN WE'LL WORRY WHETHER IT'S
TOO COMPLEX OR BURDENSOME.
IF IT TURNED OUT AN INTERVENTION
HAD AN AFFECT BUT BUT NOT
PRACTICAL THERE WAS NO WAY TO
RISK IT AND THE WAY TO CREATE AN
INTERVENTION LESS COMPLEX OR
BURDENSOME WOULD BE TO REMOVE
SOME COMPONENTS OR SET TO A
LOWER LEVEL OR DOSAGE.
WITHOUT KNOWING WHICH DON'TS ARE
DRIVING THE EFFECTS THERE WAS NO
WAY TO DETERMINE WHICH WERE
EXPENDABLE.
AS A RESULT THE INTERVENTIONS
WHICH SHOWED AFFECTS IN THE RCT
NER SAW THE LIGHT OF DAY AND OF
COURSE NO IMPLEMENTATION BEING
ZERO PUBLIC HEALTH IMPACT
BECAUSE IT'S A FUNCTION OF
EFFECTIVENESS AND REACH BOTH.
SO THE CONCLUSION THEY DREW WAS
THEY WERE NOT SUCCESSFULLY
ACHIEVING THE GOAL OF HIGH
PUBLIC HEALTH IMPACT.
THE THIRD OBJECTIVE WAS MAKING
IMPROVEMENTS OVER TIME.
WHILE THEY FOUND THE EVALUATION
RCT DID NOT REVEAL THE STRONG
AND WEAK PARTS OF AN
INTERVENTION AND SO THE NEXT
STEPS TO MAKING IMPROVEMENTS
WERE UNCLEAR.
WE'D LIKE KNOW WHAT'S NOT
PERFORMING WELL.
WE CAN WORK ON THAT BUT THERE
REALLY WASN'T ANY WAY TO TELL.
SO THEY DREW THE FOLLOWING
CONCLUSIONS.
THEY REALIZED THEY WERE NOT SET
UP TO MAKE ONGOING IMPROVEMENTS
AND WITHOUT THOSE ONGOING
IMPROVEMENTS THERE WAS NOT MUCH
HOPE ACHIEVING THE FIRST TWO
OBJECTIVES EITHER.
SO ALL OF THIS TOGETHER MADE THE
TERNS THINK MAYBE WE NEED TO
THINK OF SOMETHING DIFFERENT AND
THEY HAVE AN HRQ AND THEY WROTE
A REPORT SAYING THE AMOUNT OF
HIGH QUALITY EVIDENCE WAS
INSUFFICIENT TO DRAW FIRM
CONCLUSIONS OF INTERVENTION
WOULD WORK FOR DEMENTIA AND
DEMENTIA CARE AND THE CRITICAL
IMPROVEMENTS WERE NEEDED IN
DEMENTIA CARE RESEARCH.
SO THIS REPORT GOT THE TERREANS
THINKING HARD.
ULTIMATELY THEY DECIDED THEY
NEEDED A NEW RESEARCH FRAMEWORK.
THIS IS WHAT THEY CAME UP WITH.
THEY DECIDED TO DRAW ON GOOD
IDEAS FROM A LOT OF SOURCES AND
DREW ON IDEAS FROM BEHAVIORAL
SCIENCE AND DREW ON IDEAS ABOUT
EVIDENCE-BASED STRATEGIES AND
ALSO WENT TO OTHER FIELD AS
WELL.
THEY WENT TO INDUSTRIAL ENGINEER
WHERE THEY IMPORTED THE IDEA OF
OPTIMIZATION AND BASIC PRINCI
PRINCIPLES AND IT'S NOT ABOUT
FINDING THE VERY BEST BUT
BALANCING DIFFERENT
CONSIDERATIONS TO IDENTIFY THE
BEST YOU CAN USE.
THEY ALSO WENT TO HEALTH
ECONOMICS WHICH TAUGHT THEM
ABOUT MANAGEMENT OF RESOURCES.
THEY WENT TO DECISION SCIENCE
WHERE THEY LEARNED ABOUT METHODS
FOR MAKING DIFFICULT TRADEOFFS
BUT STRATEGICALLY.
FOR EXAMPLE, MAYBE AN
INTERVENTION IS EXTREMELY
EXPENSIVE BUT VERY EFFECTIVE.
SO WHAT DO YOU DO?
DO YOU PAY A LOT FOR A
HIGH-LEVEL EFFECTIVENESS OR TRY
TO DEVELOP SOMETHING THAT IS A
LITTLE BIT MORE PRACTICAL BUT
MAYBE A LITTLE LESS EFFECTIVE.
THERE'S IMPORTANT TRADEOFFS.
THEY WENT TO IMPLEMENTATION
SCIENCE TO FIND METHODS FOR
ACHIEVING IMPLEMENTABILITY.
THIS IS THE EVALUATION OF
BEHAVIORAL INTERVENTIONS.
LET'S REVIEW CHARACTERISTICS OF
THE NEW FRAMEWORK.
THE OBJECTIVE IS TO DEVELOP AN
INTERVENTION THAT DEMONSTRATE A
SIGNIFICANT AFFECT IN THE MRCT
AND IS IMMEDIATELY
IMPLEMENTABLE.
BOTH ARE EQUALLY IMPORTANT.
THIS REQUIRES AS I SAID BEFORE
STRATEGICALLY BALANCING
EFFECTIVENESS AGAINST
AFFORDABILITY.
YOU CAN DEVELOP THE MOST
EFFECTIVE INTERVENTION AND IF
IT'S NEVER IMPLEMENTED THE
PUBLIC HEALTH IMPACT IS ZERO.
THE TERREANS DECIDED TO OPTIMIZE
FIRST AND THEN WENT ON TO RCT.
THE TERREANS' APPROACH IS MORE
LIKE THE WAY THE SCIENTISTS WERE
TRAINED.
IT USES A VARIETY OF
EXPERIMENTAL DESIGNS IN
RECOGNITION OF SOMETHING THEIR
SCIENTISTS HAVE BEEN TELLING
THEM NO ONE SINGLE EXPERIMENTAL
DESIGN CAN BE USED BUT DIDN'T
THROW OUT THE EVALUATION RCT AND
KEPT IT WITH A NUMBER OF USEFUL
AL DESIGNS AND KEPT THE
EXPECTATION THAT IMPROVEMENT IS
AN ONGOING PROCESS AND DECIDED
TO ASSIGN NUMBERS IN THE SAME
WAY THEY'RE ASSIGNED TO
SOFTWARE.
AS YOU MIGHT WORK WITH ZOOM,
7.1, SAY, YOU MAY HAVE A
PARTICULAR INTERVENTION AND MAY
BE ON VERSION 2.1 OR 3.5.
SOMETHING LIKE THAT.
SO COULD PLANET TERRA'S APPROACH
WORK ON EARTH?
LET'S TAKE THE SPACE SHIP BACK
AND CONSIDER IF IT WOULD WORK.
THERE'S THE MULTI-PHASE
OPTIMIZATION STRATEGY AND IT
DRAWS ON ALL THOSE TRADITIONS
AND IMPLEMENTATION SCIENCE.
THIS IS A SCLEM -- SCHEMATIC.
THE RED BOX IS THE PREPARATION
PHASE OF MOST.
THERE'S PREPARATION,
OPTIMIZATION AND EVALUATION.
THE PREPARATION IS WHERE THE
INVESTIGATOR LAYS THE GROUND
WORK FOR OPTIMIZATION.
FOR THOSE IN THE INTERVENTION
AND EVALUATION AND DEVELOPMENT
BUSINESS WILL RECOGNIZE THESE
ACTIVITIES.
THIS PART WON'T BE NEW TO YOU.
YOU DERIVE OR REVISE A
CONCEPTUAL MODEL AND IDENTIFY
CANDIDATE INTERVENTION
COMPONENTS.
NOTICE I'M CALLING THEM
CANDIDATE.
THEY'RE CALLED CANDIDATE
COMPONENTS BECAUSE THERE'S NO
GUARANTEE THEY'LL MAKE IT IN THE
INTERVENTION.
THERE'S CANDIDATES FOR POSSIBLE
INCLUSION.
THEY MAY TURN OUT TO PERFORM
WELL BUT END UP BEING EXPENSIVE.
ANY PILOT WORK IS CONDUCTED IN
THE PREPARATION PHASE AND THE
INVESTIGATOR IDENTIFIES THE
OBJECTIVE AND I'LL COME BACK TO
THAT IN A MOMENT.
THE NEXT PHASE IS OPTIMIZATION
WHERE THE INVESTIGATOR BUILDS
THE OPTIMIZED INTERVENTION.
AND HERE THE INVESTIGATOR
CONDUCTS AN OPTIMIZATION RCT.
THIS IS A DIFFERENT KIND OF
EXPERIMENT AND EVALUATION RCT.
THE EVALUATION RCT IS A GREAT
WAY TO DO A DIRECT COMPARISON OF
ONE VERSION OF AN INTERVENTION
TO ANOTHER OR TO A CONTROL.
OPTIMIZATION RCTs ARE DESIGN TO
GIVE AN EFFICIENT LOOK AT THE
PERFORMANCE OF COMPONENTS AND
ALSO WHETHER THE PRESENCE OR
ABSENCE OF A COMPONENT OR LEVEL
OF A COMPONENT MIGHT HAVE IMPACT
ON THE EFFECT OF ANOTHER.
IN THE OPTIMIZATION PHASE ONE OR
MORE OF THE RCTs ARE IMPLEMENTED
AND THEN BASED ON THE DATA FROM
THOSE THE INVESTIGATOR
IDENTIFIES THE INTERVENTION THAT
NEEDS THE OBJECTIVE.
AND THE LAST PHASE THE
INTERVENTION IS CONFIRMED IN A
TRADITIONAL EVALUATION RCT.
YOU MAY NOTICE THERE'S TWO
PRINCIPLES AT THE TOP.
THE CONTINUAL OPTIMIZATION
PRINCIPLE THE IDEA THAT AN
INTERVENTION SHOULD BE OPTIMIZED
IN ORDER TO KEEP IMPROVING IT
OVER TIME AND THE REASON
MANAGEMENT PRINCIPLE WHICH SAYS
THE INVESTIGATOR HAS THE
RESPONSIBILITY TO THE TAXPAYERS
TO MAKE THE BEST USE OF
RESOURCES AND SELECT A DESIGN
THAT'S THE MOST EFFICIENT ONE.
I WANT TO POINT OUT THE WIDE
VARIETY OF EXPERIMENTAL DESIGN
FOR OPTIMIZATION RCTs AND
EXPERIMENT AND FACTORIAL
EXPERIMENT AND RANDOMIZED TRIAL
AND IF YOU'RE NOT INTO
EXPERIMENTAL DESIGN DON'T MIND
THIS.
THE NERDS IN THE ROOM LIKE ME
GET EXCITED ABOUT EXPERIMENT
SIGNAL DESIGN BUT I WANT TO
POINT OUT THE VARIETY OF DESIGNS
THERE ARE.
THE DESIGN PRETTY MUCH SUGGESTS
ITSELF BUT THE CLASSICAL
EVALUATION RCT WE'VE NOT THROWN
IT AWAY.
IT'S A PART OF THE MULTI-PHASED
OPTIMIZATION STRATEGY.
IT'S POSSIBLE TO HAVE AN
OBJECTIVE.
HERE'S A FEW EXAMPLES OF BEST
EXPECTED OUTCOME FOR SAY $300
PER PERSON.
OR THE BEST EXPECTED OUTCOME FOR
OF FOR LESS THAN THREE MINUTES
OF STAFF TIME AND YOU CAN
ENGINEER AN INTERVENTION FOR
COST EFFECTIVENESS.
I'LL MOVE TO PUBLISHED EXAMPLES.
THIS IS UNFORTUNATELY NOT IN THE
AGING AREA BECAUSE I DIDN'T HAVE
ONE IN THIS AREA BUT I HAVE ONE
IN THE WHAETH LOSS AREA.
THIS WAS A STUDY WHERE WE WERE
MULTIPLE P.I.s AND YOU SEE THE
NAMES LISTED.
THE OBJECTIVE WAS TO APPLY THE
STRATEGY TO DEVELOP AN ENTIRELY
REMOTELY DELIVERED TECHNOLOGY
SUPPORTED WEIGHT LOSS PACKAGE TO
MAXIMIZE THE AMOUNT OF WEIGHT
LOSS LESS THAN OR EQUAL TO $500
A PERSON.
WE LOOK AT FIVE DIFFERENT
CANDIDATE COMPONENTS IN THE
STUDY.
WE LOOKED AT COACHING CALLS.
10 TO 15 MINUTE CALLS FROM A
HEALTH COACH AND LOOKED AT TWO
LEVELS.
HIGHER AND LOWER LEVEL.
THE HIGHER LEVEL WAS 24 CALLS.
THE LOWER LEVEL WAS 12 CALLS.
FOR THE REMAINING COMPONENTS THE
HIGHER LEVEL IS YES OR INCLUDED
AND THE LOWER LEVEL IS NOT
INCLUDED.
ENCOURAGING TEXT MESSAGES.
REPLACEMENT RECOMMENDATIONS AND
INSTRUCTIONS.
A REPORT ABOUT THE INDIVIDUAL'S
WEIGHT LOSS PROJECT SENT TO
THEIR PRIMARY CARE POSITION AND
TRAINING.
EVERYONE TO BE INCLUDED IN THE
STUDY HAD TO BE ABLE TO IDENTIFY
A WEIGHT LOSS BUDDY AND WHAT
WE'VE MANIPULATED WERE SOME
BUDDIES WERE TRAINED AND SOME
WERE NOT TRAINED.
PEOPLE WERE RANDOMLY ASSIGNED TO
HAVE THEIR BUDDY TRAINED OR NOT
TRAINED.
YOU MIGHT BE WONDERING HOW WOULD
I APPROACH LOOKING AT FIVE
INTERVENTION COMPONENTS.
LET'S REVIEW THAT.
IF YOU'VE BEEN TRAINED IN THE
CLASSICAL TREATMENT PACKAGE
APPROACH THE FIRST THOUGHT MIGHT
BE I WOULD CONDUCT AN INDIVIDUAL
RCT.
ONE ON EACH AND IT WOULD REQUIRE
ROUGHLY 2500 SUBJECTS AND 10
POSITION.
ONE IS THE COMPARATIVE TREATMENT
EXPERIMENT.
THERE'S ONE CONTROL GROUP AND AN
EXPERIMENTAL CONDITION
RESPONDING TO EACH OF THE
INTERVENTION COMPONENTS.
ONE WHERE THE NUMBER OF CALLS
WAS SET TO THE HIGH LEVEL AND
ALL THE OTHER COMPONENTS WERE
SET TO THE NO LEVEL.
THEN BE ANOTHER CONDITION WHERE
PEOPLE WERE GIVEN ENCOURAGING
TEXT MESSAGES BUT THE LOWER
LEVEL OF CALLS AND THE OTHERS
WERE SAID THE TO NO AND SO ON
AND ONE FOR EACH OF THE FIVE
COMPONENTS.
AND THE OTHER IS PEOPLE BELIEVE
THE FACTORIAL EXPERIMENTS ARE
RESOURCE INTENSIVE AND DO
REQUIRE EXPERIMENTAL CONDITIONS.
FACTORIAL EXPERIMENT WOULD
REQUIRE 32 EXPERIMENTAL
CONDITIONS BUT ONLY REQUIRE A
LITTLE OVER 500 PARTICIPANTS.
THIS MAY SURPRISE YOU IF YOU'VE
BEEN TRAINED PRIMARILY IN THE
CLASSICAL TREATMENT PACKAGE
APPROACH.
THE REASON WHY FACTORIAL
EXPERIMENTS WERE ORIGINALLY
DEVELOPED IN THE LATE 1800s WAS
FOR THE VERY REASON.
THEY MAKE VERY EFFICIENT USE OF
EXPERIMENTAL PARTICIPANTS WHICH
WERE PLANTS OR SEEDS AND
EXPERIMENTAL DESIGNS WERE
DEVELOPED IN AGRICULTURE AND A
CHARACTERISTIC THAT ENABLES YOU
TO LOOK AT INTERACTIONS.
IT ENABLES YOU TO EXAMINE
WHETHER THE PRESENCE OR ABSENCE
OF LEVEL OF ONE COMPONENT HAS AN
IMPACT ON THE PERFORMANCE OF
ANOTHER WHICH IS SOMETHING THAT
THAT'S VERY IMPORTANT.
SOME OF YOU ARE PROBABLY THINK
IT'S NOT RIGHT BUT WHEN
ADDRESSING SUITABLE QUESTIONS
AND BALANCED FACTORIAL
EXPERIMENTAL DESIGNS OFTEN
REQUIRE FEW IR PARTICIPANTS AND
ALTERNATIVE DESIGNS.
IF YOU DON'T BELIEVE ME -- IT
WAS HARD FOR ME TOO AT FIRST TRY
READING THE CITATIONS THERE.
WE CONDUCTED THE FACTORIAL
EXPERIMENT 2X2X2X2 AND GOT THE
DATA AND ANALYZED THE DATA AND
OBTAINED ESTIMATES OF THE
EFFECTS OF EACH OF THE
COMPONENTS AND USED THE
INFORMATION TO SELECT
COMPONENTS.
WE DISCARDS THOSE THAT WEREN'T
PERFORMING ADEQUATELY AND LOOKED
AT INTERACTIONS BECAUSE
SOMETIMES A COMPONENT MAY
ACTIVATE ANOTHER COMPONENT AND
SELECTED COMPONENTS TO MAKE UP
THE OPTIMIZED INTERVENTION.
WE WERE LOOKING TO DEVELOP AN
ENTIRELY REMOTE WEIGHT LOSS
PACKAGE AND TO OBTAIN THE
MAXIMUM WEIGHT LOSS OF $500 A
PERSON OR LESS AND LOOKED AT 32
COMBINATIONS OF COMPONENTS.
I'M SHOWING FOUR PERFORMED
ESPECIALLY WELL.
THERE'S A COLUMN I'VE MARK IN
KILOGRAMS AND YOU SEE THAT THE
ALTERNATIVE IN THE BOX MAX
MIDTHE AMOUNT OF WEIGHT LOSS
OBTAINABLE AND THIS IS THE
INTERVENTION.
THE LOWER LEVEL APPROACH CALLS
FOR 12 AND NO TEXT MESSAGES, NO
MEAL REPLACEMENTS.
IT TURNED OUT PEOPLE HATED MEAL
REPLACEMENTS.
YES, FOR THE PCP REPORT.
PEOPLE LIKED HAVING A REPORT
SENT TO THEIR PRIMARY CARE
PHYSICIAN AND THE VERSION OF THE
INTERVENTION THAT GAVE THE
SECOND BEST WEIGHT LOSS WAS THE
LEAST EXPENSIVE AND THAT'S
SOMETHING THAT WOULD HAVE BEEN
DIFFICULT USING THE CLASSICAL
TREATMENT PACKAGE APPROACH.
IF YOU'RE INTERESTED IN THE
STUDY THERE'S MORE ABOUT IT IN
THE ARTICLE IN THE JOURNAL OF
OBESITY.
THE OPTIMIZATION STRATEGY IS AN
ALTERNATIVE FRAMEWORK FOR
INTERVENTION DEVELOPMENT AND
EVALUATION.
IT'S AN ALTERNATIVE TO THE
TREATMENT PACKAGE APPROACH USED
FOR SO MANY YEARS AND SOME WOULD
LIKE TO LEARN MORE.
I SUGGEST YOU DON'T BUY THE
BOOKS AND IF YOU'RE AFFILIATED
WITH THE UNIVERSITY YOU CAN
PROBABLY DOWNLOAD PDF VERSIONS
FROM THE PORTAL AT YOUR
UNIVERSITY LIBRARY.
IF YOU'RE NOT AFFILIATED WITH
THE UNIVERSITY YOU CAN PURCHASE
THEM FROM SPRINGER.
THE BOOK ON THE LEFT IS
COMPREHENSIVE INTRODUCTION TO
OPTIMIZATION OF BEHAVIORAL AND
BIO MEDICAL INTERVENTIONS AND
THE BOOK ON THE RIGHT IS AN
EDITED BOOK THAT COVERS A NUMBER
OF MORE ADVANCED TOPICS THAT YOU
MIGHT BE INTERESTED IN.
I RECOMMEND STARTING WITH THE
AUTHORS BOOK.
THE ONE ON THE LEFT AND READING
SELECTED CHAPTERS ON THE BOOK ON
THE RIGHT.
I DIRECT A CENTER CALLED FOR
ADVANCEMENT OF INTERVENTION
OPTIMIZATION AND WE HAVE S ON
OUR WEBSITE AND LOTS OF
INFORMATION ABOUT INVENTION
OPTIMIZATION IN GENERAL FOR
PEOPLE INTERESTED IN LEARNING
MORE.
I'D LIKE YOU TO KNOW THERE IS A
FREE COURSE ON COURSEERA AND
THEY'LL TRY TO CHARGE YOU $50
BUT THAT'S FOR A CERTIFICATE AND
IT'S AN INTRODUCTION TO THE
MULTI-PHASE OPTIMIZATION POST
AND WE'RE ABOUT TO PUT UP
ANOTHER COURSE AN INTRODUCTION
TO FOR STATISTICIANS AND BIO
STATISTICIANS.
WE OFFER IS SYNCHRONOUS ONLINE
TRAININGS THAT USE THE A SYNC --
ASYNCHRONOUS COURSE AND YOU CAN
GO TO CADIO.org AND GET THERE
EASILY.
WE'RE TAKING APPLICATIONS NOW
FOR ONE OF THE SYNCHRONOUS
ONLINE TRAININGS.
I THINK THE DIFFICULT FOR THAT
CLOSES ON FRIDAY.
IF YOU'RE INTERESTED IN THAT
IT'D BE GOOD TO LOOK AT THAT
SOO
SOON.
AND THERE'S THE D3 CENTER.
THEY'RE MOSTLY INTERESTED IN
HIGH-TECH INTERVENTIONS.
WHAT WE OFTEN CALL ADAPTIVE
INTERVENTIONS OR JUST IN TIME
ADAPTIVE INTERVENTIONS.
A SPECIALIZED AREA BUT GROWING
VERY FAST BECAUSE TECHNOLOGY
OFFERS SO MANY AMAZING
POSSIBILITIES FOR INTERVENTIONS.
IF YOU'RE INTERESTED AND WANT TO
KNOW MORE YOU CAN SIGN UP AND WE
DO MANY WEBINARS WITNESS --
WEDNESDAYS AT 1:00 AND THEY'RE
VERY INFORMAL BUT I SEE LISA ON
AND THANK YOU FOR LISTENING.
>>THANK YOU, DR. COLLINS FOR
THAT INCREDIBLY INTERESTING
PRESENTATION.
WE HAVE PANELISTS WHO ARE GOING
TO JOIN US IN A MOMENT.
CATHY HEFFNER AND BRENT MAUSBACH
AND CHRISTINA McCRAE WILL SAY A
LITTLE BIT ABOUT THEIR
INTERVENTION WORK AND SPEAK
BRIEFLY HOW IT MIGHT RELATE TO
THE STRATEGY.
CATHY, WOULD YOU LIKE TO START?
>>SURE, THANK YOU.
THANK YOU FOR INVITE KNOWING
SERVE ON THE PANEL.
I'M KATHY HEFFNER FROM THE
DEPARTMENT OF PSYCHIATRY AND
MEDICINE.
I'LL PROVIDE A LITTLE BACKGROUND
ON RESEARCH AND OPTIMIZED
INTERVINTER
VE
INTERVENTION IT'S RECOGNIZING
STRESS MECHANISMS IN OLDER
ADULTS HEALTH AND PROPELLED AN
INTEREST IN MY COLLABORATORS TO
PROTECT THE HEALTH AND WELL
BEING OF OLDER AND STRESSED
CAREGIVERS OF A PERSON LIVING
WITH DEMENTIA.
IN MUCH OF OUR WORK WE'VE BEEN
USING ESTABLISHED BEHAVIORAL
INTERVENTIONS DEVELOPED NOT
NECESSARILY OPTIMIZED IN THE WAY
LINDA DESCRIBED BUT DEVELOPED TO
TARGET COGNITIVE MECHANISMS.
WE'RE FINISHING UP A TRIAL WE'RE
ASKING WHETHER OLDER CAREGIVERS
COGNITIVE ABILITIES PROCESSING
SPEED AND ATTENTION WHETHER
DOING SO -- AND IT'S IMPORTANT
TO SAY THESE COGNITIVE ABILITIES
WE HAVE VERY TARGETED BRAIN
TRAINING INTERVENTIONS TO DO
THIS.
AND SO DOING SO LOOKING AT THE
STRENGTH AND THE INVOLVED BRAIN
PATHWAY THAT SUPPORT RELATION OF
EMOTIONS AND STRESS RESPONSES
AND SO THIS IS ULTIMATELY TO
FOSTER CAREGIVERS' EMOTIONAL
WELL BEING AND TARGETED
INTERVENTIONS SHOULDN'T GO
OPTIMIZATION FOR SCALABILITY AND
COST AND THOSE KINDS OF THINGS.
AND RELATED TO COMPONENT
INTERVENTIONS FOUR FOUR YEARS
AGO WE LOOKED AT A DEMENTIA CARE
ROYBAL CENTER WHAT WE CALL THE
RODCHESTER ROYBAL CENTER AND THE
ACRONYM IS THE ROCK STAR CENTER
AND I CO-COORDINATE WITH AN
EXPERT IN OLDER ADULTS
LONELINESS AND THE OBJECTIVE IS
TO SUPPORT THE DEVELOPMENT OF
INTERVENTIONS FOR LONELY AND
ISOLATED CAREGIVERS OF A FAMILY
MEMBER WITH DEMENTIA.
WE KNOW LONELINESS AND ISOLATION
ARE POTENT STRESSORS AND RISK
FACTORS FOR OLDER ADULTS'
MORBIDITY AND WE NEED
INTERVENTIONS TO REDUCE THE
RISK.
THIS BRINGS ME NOW A BIT CLOSER
TO A QUESTION I WANT TO POSE
HERE TO DR. COLLINS.
WE'RE IN THE BUSINESS OF FUNDING
INVESTIGATORS ON THEIR PATH TO
OPTIMIZING INTERVENTION.
SOMETIMES THEY'RE
MULTI-INTERVENTIONS.
FOR EXAMPLE, MULTI-COMPONENT
MINDFULNESS INTERVENTION OR
PSYCHO EDUCATION COMBINED WITH
SELF-CARE ARE THE DOMAINS OF
BEHAVIORAL INTERVENTIONS AND
MOST IS VERY ATTRACTIVE TOOL FOR
IDENTIFYING THE COMPONENTS AND
THE MECHANISMS THAT CHANGE A
BEHAVIOR AND FOR US THAT MAY BE
SOMETHING LIKE ENGAGING IN
SOCIAL ACTIVITIES AND WE DO WANT
TO ENCOURAGE ITS USE.
BUT THERE'S SKEPTICISM THAT
BUBBLES UP IN SOME CONVERSATIONS
ABOUT THIS.
I'D LIKE TO ASK A BIT OF YOUR
ADVICE.
WHAT DO YOU SAY TO A NEW
INVESTIGATOR OR EVEN A SEASONED
ONE THAT SUGGEST A
MULTICOMPONENT INTERVENTION
CANNOT BE ALONE TO AFFECT THE
OUTCOME OF INTEREST.
WHAT DO YOU SAY TO THAT?
>>I WOULD SAY IF YOU SAY YOUR
INTERVENTION IS THAT TIGHTLY
INTEGRATED YOU'RE EITHER SAYING
IT'S A SINGLE COMPONENT OR THAT
IF YOU WERE TO CONDUCT A
FACTORIAL OPTIMIZATION TRIAL
THERE'D BE NO TWO OR THREE-WAY
INTERACTIONS.
THE ONLY IMPORTANT AFFECT WOULD
BE THE HIGHEST ORDER
INTERACTION.
THAT SEEMS HARD TO BELIEVE TO ME
BUT WOULD BE INTERESTING TO TRY
TO ESTABLISH THAT COULD HAPPEN.
IT'S AN EMPIRICAL QUESTION.
EVEN IF IT DID TURN OUT THAT WAS
THE CASE, YOU MIGHT ALSO BE
INTERESTED IN USING MOST TO
OPTIMIZE WHAT I SOMETIMES CALL A
WRAP AROUND INTERVENTION.
AN INTERVENTION TO ENCOURAGE
BETTER ADHERENCE TO THE
INTERVENTION OR ENGAGEMENT IN
THE INTERVENTION OR BETTER
DELIVERY OF THE INTERVENTION.
THAT WOULD BE MY RESPONSE TO
THAT.
>>CHRISTINA, McCRAE WOULD YOU
LIKE TO INTRODUCE YOURSELF AND
GO NEXT?
>>I WOULD.
>>THANK YOU FOR AN INTERESTING
PRESENTATION.
I'D CHRISTINA McCRAE ASSISTANT
DEAN IN THE COLLEGE OF NURSING
AT THE UNIVERSITY OF SOUTH
FLORIDA.
MY RESEARCH IS FOUNDED IN TWO
FUNDAMENTAL IDEAS, GOOD SLEEP
PROVIDE AS A GOOD SLEEP FOR GOOD
HEALTH AND IMPROVING POOR SLEEP
IMPROVES POOR HEALTH.
FOR SOME INSOMNIA AND STRESS
LEAD TO POOR FUNCTIONING.
MY TESTS WHETHER IMPROVING
INSOMNIA AND STRESS WITH THE USE
OF COGNITIVE TREATMENT FOR
INSOMNIA LEAD TO IMPROVEMENT IN
CAREGIVER HEALTH AND FUDGING.
MY TEAM AND I HAVE USED
TRADITIONAL ONE-ON-ONE THERAPY
IT DELIVERY AND TELEHEALTH AND
CONDUCTED AN RCT USING THE
INTERNET AND COMMUNITY-BASED
METHODS TO ENHANCE ACCESS AND
ACCESSIBILITY FOR RURAL AND
UNDER SERVED CAREGIVERS AND TO
TEST ITS IMPACT ON SLEEP, STRESS
AND RELATED HEALTH OUTCOMES.
MY QUESTION, CBTI IS AN
ESTABLISHED MULTI-COMPONENT
INTERVENTION WITH EVIDENCE BASED
IN ADULTS SEEING IMPROVEMENTS IN
SLEEP, COGNITION AND RESPONDER
RATES AND COSTS.
THERE'S WEAKER EVIDENCE
SUPPORTING THREE OF THE STAND
ALONE THERAPIES AND EVIDENCE
AGAINST ONE COMPONENT AS A
STANDS ALONE BUT THAT'S BASED ON
FEWER AND LOWER QUALITY STUDIES.
HOW WOULD MOST APPLY IN THIS
SITUATION?
ONCE YOU HAVE NUMEROUS RCTs
PROVIDING STRONG SUPPORT FOR THE
MULTI-COMPONENT INTERVENTION ARE
WE TOO FAR DOWN THE ROAD TO USE
MOST?
>>I DEFINITELY DON'T THINK
WE'RE TOO DOWN THE ROAD BUT
THERE'S TWO WAYS I IMAGINE YOU
WOULD GO.
ONE IS BECAUSE THERE'S LOTS OF
EVIDENCE FOR THE PACKAGE AND WE
DON'T KNOW WHETHER ALL OF THE
COMPONENTS ARE REALLY TRACT.
AND EVEN THOUGH IT'S PERHAPS AN
ONLINE DELIVERED INTERVENTION
TIME IS A COST.
PARTICIPANT'S TIME IS AN
IMPORTANT COST.
IF YOU COULD HAVE AN
INTERVENTION THAT WAS SHORTER I
THINK YOU'D TAKE THAT.
I'D RECOMMEND TRYING TO SEE IF
ANY COMPONENTS COULD REMOVED.
BASED ON MY EXPERIENCE IT'S
LIMITED LIKE ANYONE ELSE'S BUT
I'VE BEEN SURPRISED AT HOW THE
OBSERVED EFFECTIVE INTERVENTIONS
TEND TO BE DRIVEN BY MORE THAN
WHAT PEOPLE THINK.
I THINK IT WOULD BE WORTH DOING.
THAT'S ONE THING.
THE SECOND THING IS MAYBE YOU
DON'T WANT TO GO THERE AND
THAT'S FINE.
YOU ALSO COULD START WORKING ON
ENGAGEMENT BECAUSE ANY ONLINE
INTERVENTION THERE'LL BE ISSUES
WITH ENGAGEMENT AND YOU KNOW
IT'S A BIG THING NOW IN HEALTH.
YOU COULD DEVELOP WHAT A
MENTIONED BEFORE WHAT A
SOMETIMES CALL A WRAP AROUND
INTERVENTION.
YOU'RE SATISFIED WITH THE
INTERVENTION, WHAT YOU THINK OF
AS THE INTERVENTION ITSELF AND
NOW YOU WANT AN INTERVENTION TO
WRAP AROUND THAT THAT'S GOING TO
DO SOMETHING ELSE RELATED TO THE
INTERVENTION AND IN THIS CASE
IMPROVE AND MAINTAIN ENGAGEMENT.
I GUESS THAT'S MY ANSWER TO YOU,
CHRISTINA.
>>I'M BRENT MAUSBACH IN THE
UNIVERSITY OF CALIFORNIA, SAN
DIEGO MY TRAINING IS IN CLINICAL
PSYCHOLOGY AND HAVE BEEN PART OF
A NUMBER OF INTERVENTION TRIALS
GOING BACK ALL THE WAY AS A
GRADUATE STUDENT BEING PART OF
THE REACH AND REACH 2 STUDY.
IT'S BEEN A LONG TIME SINCE I'VE
BEEN A PART OF THESE CAREGIVER
INTERVENTION STUDIES.
REALLY QUICK BRIEFLY FOR WHAT I
WAS HOPING TO TALK ABOUT TODAY,
I WANTED TO HIGHLIGHT THIS LARGE
GAP IN THE SCIENCE OF TESTING
INTERVENTIONS TO HELP CAREGIVERS
AND THE GAP IN GETTING THE
INTERVENTIONS TO CAREGIVERS WHO
NEED THEM.
I THINK LINDA DID A FANTASTIC
JOB HIGHLIGHTING THE CRITICAL
ISSUES.
I LOVED THE EXAMPLE OF THE
FICTITIOUS PLANET OF TERRA.
I'LL TAKE TIME TO PROVIDE
CORROBORATIVE RESEARCH FOR THE
WORK LINDA DOES AND IF YOU DO A
LITERATURE RESEARCH YOU CAN SEE
A NUMBER OF PUBLICATIONS.
THERE'S MORE THAN 80 PUBLISHED
INTERVENTION STUDIES.
YOU CAN FIND REVIEWS AND
META-ANALYSES ON THE
EFFECTIVENESS OF THE
INTERVENTIONS.
I DID A SURVEY IN SAN DIEGO WITH
COMMUNITY-BASED ORGANIZATIONS
THAT SAID THEY OFFERED SERVICES
TO SENIORS.
AND MANY SAID THEY OFFERED
SERVICE TO HELP CAREGIVERS WITH
DISTRESS IN THOSE KINDS OF
THINGS.
AND THE MOST COMMONLY USED
INTERVENTION FOR KAFRZ WAS WE
OFFER BROCHURES, INFORMATIONAL
BROCHURES, I THINK 58% OF THE
AGENCIES SAID THEY OFFER THE
BROCHURES.
42% SAID THEY OFFERED RESPITE
SERVICES AND ANOTHER OFFERED
INFORMAL SUPPORT GROUPS.
IF YOU DIG DOWN FURTHER, WHAT
READ WAS AN EVIDENCE-BASED
PRACTICE FOR CAREGIVERS.
WHEN YOU DIG FURTHER YOU FIND
THE AGENCIES DID EXACTLY LIKE
YOU WERE SAYING.
THEY FOUND IT TOO BURDENSOME AND
IT WAS A REACH 2 INTERVENTION.
TOO BURDENSOME TO OFFER THE
COMPLETE INTERVENTION.
WHAT THEY WOULD DO IS MAKE
MODIFICATIONS MAKING IT SHORTER
AND WE'LL TAKE A COMPONENT WE
LIKE AND OFFER IT AS A ONE-DAY
WORKSHOP.
AND OTHERS IF YOU ASKED THEM
THEY THOUGHT IT'S TOO MUCH TO
GET TRAINED.
WE DON'T WANT TO DRAIN THE
PEOPLE TO OFFER THE INTERVENTION
AND SAY THE SUPPORT GROUPS ARE
FINE AND SO WE'LL JUST OFFER
WHAT THEY WANT.
I THINK THAT ON A DATA LEVEL
HIGHLIGHTS WHAT KIND OF A GAP WE
HAVE OF 30 YEARS OF EVIDENCE
BASED INTERVENTION RESEARCH AND
ONE OF 24 WHAT IS MAYBE 4% OF
THE AGENCIES WILL OFFER SOME
KIND OF INTERVENTION THAT WORK.
FOR ME THE BIG QUESTION WOULD BE
THE NEXT STEPS MOVING FORWARD.
FOR ME IT'S HOW DO WE DO WE HAVE
THE IDEA OF TAKING THE EXISTING
INTERVENTIONS OUT THERE AND
WORKING WITH COMMUNITY AGENCIES
TO FIND THE XOINCOMPONENTS THATK
BEST OR MORE WORKING WITH THE
AGENCIES TO COME UP WITH NEW
IDEAS THEY THINK MAY BE HELPFUL
FROM GROUND ZERO, I GUESS, FROM
STEP ONE AND GOING FROM THERE.
I THINK THIS IS A WIDE OPEN AREA
FOR FUTURE RESEARCH.
>>I AGREE.
I SORT OF WANT TO OFFER YOU
LISTED TWO ALTERNATIVES.
I THINK I WANT TO GIVE TWO AND A
HALF ALTERNATIVES.
I THINK THIS IS AN AREA WHERE
I'M HOPING TO GO IN MY RESEARCH
IN THE NEXT FEW YEARS OR
ENCOURAGE SOMEONE ELSE TO GO IN
THIS DIRECTION.
YOU ARE SETTING OUT TO DEVELOP'
BEHAVIORAL INTERVENTION AND
STARTING AS STEP ONE BY TALKING
TO THE PEOPLE IN THE COMMUNITIES
WHO ARE GOING TO BE USING THE
INTERVENTION AND TALKING --
FINDING THE PAYERS WHICH IS
OFTEN NOT AN EASY THING TO DO.
WHEN I TALK TO INTERVENTION
SCIENTISTS I OFTEN ASK THEM
WHO'S GOING TO PAY FOR THIS
INTERVENTION IF IT GOES SCALE?
OFTEN THAT IS UNKNOWN.
PEOPLE HAVE THIS -- IF I BUILD
IT THEY WILL COME ATTITUDE IF I
BUILD A GREAT INTERVENTION,
SOMEONE'S GOING PAY FOR IT.
THAT'S MAYBE TRUE BUT MAYBE NOT.
IT WOULD BE NICE TO HAVE SOMEONE
YOU TALK TO WHO SAID YEAH, I'LL
PROBABLY PAY FOR THAT BUT THAT'S
NOT CONSIDERED A STEP ONE AWAY.
THE IDEA IS TO FIND OUT THE
CONSTRAINTS.
IS IT THE CASE IN MOST THE
SETTINGS WHERE THE INTERVENTION
IS GOING TO BE DELIVERED THE
STAFF CAN ARE ONLY AVAILABLE FOR
X NUMBER OF HOURS A WEEK OR
THINGS AS SIMPLE AS MAYBE YOU
CAN'T GET A CONFERENCE ROOM.
MAYBE YOU CAN'T GET THAT AND IF
THE INTERVENTION REQUIRES A
CONFERENCE ROOM THAT WON'T BE
IMPLEMENTED.
MAYBE THE RELATE IS THE PEOPLE
LIKELY TO BE PARTICIPANTS WILL
ONLY SHOW UP AN X NUMBER OF
TIMES OR ONLY HAVE AN X NUMBER
OF MINUTES TO SPEND.
YOU GET THE IDEA.
ONCE YOU IDENTIFY THAT THEN YOU
CAN BUILD THE INTERVENTION TO
WORK WITHIN THE PROGRAMERS IS.
THAT BECOMES A PART OF YOUR
OPTIMIZATION OBJECTIVE.
THE INTERVENTION CAN'T REQUIRE
CONFERENCE ROOM.
WE'RE LOOKING FOR THE BEST
EXPECTED OUTCOMES AND DIDN'T
REQUIRE MORE THAN 60 MINUTES OF
STAFF TIME OR THE BEST EXPECTED
OUTCOME THAT DOESN'T REQUIRE
MORE THAN FIVE VISITS.
I'M MAKING THESE UP BUT THERE'S
AN INFINITE NUMBER OF DIFFERENT
OPTIMIZATION OBJECTIVES.
I THOUGHT THE TWO POSSIBILITIES
YOU DESCRIBE THEY'RE NOT
MUTUALLY EXCLUSIVE AND EITHER
ONE WOULD BE GREAT OR BOTH BUT
EITHER WAY I SUGGEST STARTING --
WHEN I TALK TO PEOPLE I SAY
STARTING AT THE END.
YOU VISIT THE END AND SAY OKAY,
WHEN THIS INTERVENTION IS
DEVELOPED,S WHEN YOU GOING TO
HAVE TO BE IN PLACE TO IMPLEMENT
THIS AND SAY OKAY, THIS IS WHAT
WE HAVE TO WORK WITH.
WE'RE GOING DEVELOP SOMETHING
THAT IS PRACTICAL.
THE IDEA IS TO GET THE BEST
STRATEGIC BALANCE OF
EFFECTIVENESS.
DOES THAT ANSWER YOUR QUESTION?
>>FAN -- FANTASTIC.
WE'RE AT A NEW DIRECTION AND
FINALLY ADDRESSING ONE OF THE
BIGGEST ISSUES IN INTERVENTION
WORK AND SO APPRECIATIVE YOU'RE
AT THE FOREFRONT AND GIVING
SUGGESTIONS WHERE TO GO AND MAKE
SURE THE INTERVENTIONS GET TO
THE PEOPLE WHO NEED THEM.
>>THANK YOU.
>>CREATIVE TALK.
SOME INTERVENTIONS ARE
NECESSARILY COMPLEX.
FOR YEARS QUALITY IMPROVEMENT
PROJECTS TRIED SIMPLE
INTERVENTIONS SUCH AS EDUCATION,
PROMPT, REMINDERS, ETCETERA.
THIS DID NOT WORK.
THERE'S A CLAIM THAT COMPLEX
INTERVENTIONS NEED TO BE BROKEN
UP TO BE UNDERSTOOD AND WHAT
COMPONENTS WORK BECAUSE
COMPONENTS OF COMPLEX
INTERVENTIONS ARE NOT DESIGN TO
WORK AND IT WILL AGREE WITH THE
IMPORTANCE OF INVOLVING
IMPLEMENTATION SCIENCE,
BEHAVIORAL SCIENCE, ETCETERA,
WHAT EVIDENCE DO WE HAVE THAT
SIMPLE INTERVENTIONS ARE LIKELY
TO IMPROVE OUTCOMES IN THIS?
>>RESPECTFULLY, I THINK THAT'S
AN EMPIRICAL QUESTION.
IF WHAT YOU'RE SAYING IS TRUE,
I'M NOT SURE HOW THE TREATMENT
WILL MOVE IS CLOSER TO THE GOAL
OF EFFECTIVE AND PRACTICAL
INTERVENTIONS THEN THE APPROACH
THE MULTIPHASED OPTIMIZATION
STRATEGY BUT I DIDN'T TALK IT
MUCH BECAUSE I DIDN'T HAVE TIME.
WE GIVE A WEEK LONG TRAINING ON
THE APPROACH.
I COULDN'T COVERING EVERYTHING
IN ONE 30-MINUTE TALK.
PART OF THE ISSUES YOU'RE
RAISING COULD PARTIALLY
ADDRESSED WITH A CLEAR AND WELL
SPECIFIED CONCEPTUAL MODEL.
IT'S PART OF A MODEL OF THE
PROCESS BEING INTERVENED ON AND
ONCE YOU HAVE A MOLT IT'S BEING
INTERVENED ON YOU ADD THE
COMPONENTS AND INDICATE WHICH
COMPONENTS ARE HYPOTHESIZED TO
EFFECT THE MODEL AND HOW.
A LOT OF TIMES THE COMPLEX
INTERVENTIONS CONTAIN SO MANY
COMPONENTS BECAUSE THEY DON'T
HAVE A CLEAR CONCEPTUAL MODEL
AND A LOT OF COMPONENTS HAVE
BEEN INCLUDED BECAUSE YOU WANT
TO MAKE SURE SOMETHING IS
WORKING.
I RECOMMEND STARTING WITH
CONCEPTUAL MODEL AND DIVIDE IT
INTO PARTS A LITTLE BIT MORE
EASILY.
ALSO THERE'S SOME COMPONENTS OF
AN INTERVENTION YOU DON'T
NECESSARILY WANT TO MANIPULATE.
FOR EXAMPLE, I WORKED A LOT IN
DIFFERENT AREA OF DRUG ABUSE
PREVENTION AND EVERY DRUG ABUSE
PREVENTION INTERVENTION HAS SOME
CONTENT EXPLAINING DRUGS AND
THEIR EFFECTS.
THAT CONTENT HAS NEVER BEEN
SHOWN ALONE TO EFFECT THE UPTAKE
OF DRUG USE BUT AN ESSENTIAL
BUILDING BLOCK OF THE REST OF
THE INTERVENTION.
THAT HAS TO BE INCLUDED.
USUALLY THAT'S PART OF WHAT WE
SOMETIMES CALL A CORE
INTERVENTION.
IT'S NOT PART OF THE EXPERIMENT.
I PROBABLY DIDN'T ANSWER ALL
THAT INDIVIDUAL'S QUESTIONS BUT
HOPEFULLY TALKED ABOUT SOME OF
IT.
>>THANK YOU.
>>DID YOU WANT TO COMMENT?
>>IT'S NOT FROM THE REALM OF
DEMENTIA RESEARCH BUT A COUPLE
DECADES AGO THERE WAS A
COMPONENT ANALYSIS OF CBT.
AND THE IDEA IS THAT IT'S A
COMPLEX INTERVENTION THAT
REQUIRES BEHAVIOR CHANGE
PROCESSING OF AUTOMATIC THOUGHTS
AND CHANGING THOSE AND GETTING
INTO CORE DEEP SCHEMA FROM A
LIFE TIME OF EXPERIENCE.
AND HE WAS SHOCKED, HIM AND HIS
INVESTIGATIVE TEAM TO FIND
COMPONENTS WERE JUST AS GOOD AS
THE ENTIRE PACKAGE AND THAT
OPENS THE DOOR FOR WHAT WE DO.
WE MAY FIND AND BELIEVE ENTIRE
PACKAGES ARE NECESSARY TO
PRODUCE A RESULT AND CERTAIN
COMPONENTS SEEM TO WORK AS WELL
AS AN ENTIRE PACKAGE.
I'LL LEAVE IT AT THAT.
>>ANOTHER QUESTION FOR YOU,
DR. COLLINS, WHAT ADVICE DO YOU
HAVE FOR MORE JUNIOR
INVESTIGATORS TO FIND BIO
STATISTICIANS TO CONDUCT COST OF
INTERVENTION DESIGN WHICH OFTEN
TIMES IS UNKNOWN WITHIN THE
HEALTH CARE SYSTEM WHEN
DIFFERENT STAFF ARE PAID FOR
DIFFERENT ENTITIES FOR CLINICAL
RVU CALCULATIONS AND GRANTS?
>>THERE'S TWO DIFFERENT
QUESTIONS.
ONE IS THE QUESTION OF WHAT
THINGS COST AND YOU NEED A GOOD
HEALTH ECONOMIST ON YOUR TEAM.
THEY'RE INTERESTED IN BEHAVIORAL
SCIENCE AND THEY'RE SCARCE AND
WHEN YOU FIND A GOOD ONE THEY'RE
A WONDERFUL PERSON TO HAVE ON
YOUR TEAM.
I'M LUCKY I WORK WITH A GREAT
HEALTH ECONOMIST.
I ENCOURAGE YOU TO LOOK FOR ONE
AND I KNOW WHAT YOU MEAN ABOUT
FINDING A BIO STATISTICIAN TO DO
THE KIND OF PROBABLY POWER
ANALYSIS YOU NEED.
YOU HAVE TO DO A POWER ANALYSTS
BEFORE YOU CAN GET A SENSE OF
WHAT THE COST OF A PARTICULAR
EXPERIMENTAL DESIGN IS GOING TO
BE.
BY THE WAY, THERE'S A CHAPTER IN
MY BOOK THAT THE ED BOOK THAT
GOES OVER HOW YOU COMPUTE THE
COST OF AN EXPERIMENT TO COMPARE
THE COST OF EXPERIMENTAL
DESIGNS.
I TALKED ABOUT THE COURSERA
COURSE AND I HOPE BY MID MAY
WE'LL HAVE ANOTHER COURSE UP
THERE.
A FREE ASYNCHRONOUS COURSE FOR
BIO STATISTICIANS ON BEHAVIORAL
SCIENCE TEAM.
YOU CAN SUGGEST HE OR SHE TAKE
THAT COURSE.
THAT WILL HELP THEM GET STARTED.
YOU CAN ALWAYS POINT PEOPLE
TOWARD MY BOOK.
>>THANK YOU.
>>AND OPTIMIZATION TRIAL BE
CONDUCTED AFTER THERE IS
EVIDENCE OF EFFECTIVENESS?
>>IT DEPENDS ON THE RESEARCH
QUESTIONS BUT DEFINITELY.
SOMETIMES PEOPLE ASK ME DON'T
YOU EVERYONE SHOULD DO A
CLASSICAL TREATMENT PACKAGE RCT
AND ESTABLISH A SIGNAL AND THEN
DO AN OPTIMIZATION TRIAL AND MY
ANSWER IS HARD NO.
I DOESN'T MEAN IF YOU'VE DONE IT
ALREADY YOU CAN'T CONDUCT THE
TRIAL, YOU DEFINITELY CAN AND I
ENCOURAGE YOU TO DO SO BUT IS A
TREATMENT PACKAGE RCT A LOGICAL
PREREQUISITE.
I ALWAYS RECOMMEND AN
OPTIMIZATION TRIAL FIRST.
>>YOUR PRESENTATION --
[BACKGROUND NOISE]
HOW CAN WE DELIVER SUCH
INTERVENTIONS FOR PERSONS WORTHY
OF CARE PROVIDERS AND THOSE
LIVING WITH DEMENTIA.
HOW DO WE MEET THE NEEDS OF
PROVIDERS REALIZING EACH HAS
CONSTRAINTS WITH REGARDS TO
TIME, MONEY, ETCETERA.
>>IT'S POSSIBLE.
YOU CERTAINLY CAN CONDUCT AN
OPTIMIZATION TRIAL WHERE THE
UNIT OF RANDOM ASSIGNMENT IS AN
ORGANIZATION RATHER THAN AN
INDIVIDUAL AND IT IS POSSIBLE TO
USE EXPERIMENTAL DESIGNS THAT
INVOLVE NESTING AND THERE'S
EXPERTS IN THE EXPERIMENTAL
DESIGN FOR OPTIMIZATION TRIALS
AND SOMETHING ELSE IS YES, IT'S
DEFINITELY THE CASE DIFFERENT
SETTINGS HAVE DIFFERENT CON --
CONSTRAINTS AND IF YOU CONDUCT A
TRIAL AND CAN ASSUME THE RESULTS
OF THE TRIAL CAN GENERALIZE
ACROSS THE SETTINGS, THEN YOU
ACTUALLY CAN USE THE ONE
OPTIMIZATION TRIAL TO OPTIMIZE
USING THE CONSTRAINTS IN THE
DIFFERENT SETTINGS.
SO IN OTHER WORDS, ONE SETTING
TO TAKE A SIMPLE EXAMPLE ONE MAY
BE ABLE TO AFFORD $500 A PERSON
AND ANOTHER MAY ONLY BE ABLE TO
AFFORD $200 A PERSON.
YOU CAN USE THE SAME RESULTS TO
OPTIMIZE WITH THE CONSTRAINT OF
$500 A PERSON OR $200 A PERSON.
THE POINT TO MAKE HERE IS THE
OPTIMIZED INTERVENTION FOR THE
$200 A PERSON SETTING IS NOT
NECESSARILY GOING TO BE MADE UP
OF THE SUBSET OF THE COMPONENTS
IN THE $500 PERSON INTERVENTION
GOING TO SHOW IT'S A BAD IDEA TO
TAKE A BUNCH OF COMPONENTS AND
START PULLING OUT COMPONENTS
JUST IN ORDER TO MAKE AN
INTERVENTION AFFORDABLE.
IT'S BETTER TO START WITH AN
IDEA AND OPTIMIZE TO MEET THE
CONSTRAINTS.
>>IS MOST ONLY FOR CATEGORICAL
DATA?
>>I THINK THAT MEANS IS IT ONLY
FOR SITUATION WHERE'S THE
INDEPENDENT VARIABLE IS
CATEGORICAL PERHAPS.
I USUALLY RECOMMEND PEOPLE STICK
TO TWO LEVELS OF THE INDEPENDENT
VARIABLE BECAUSE WHEN YOU HAVE
MORE THAN TWO LEVELS OF THE
INDEPENDENT VARIABLE THEN THE
RESOURCE REQUIREMENTS OF THE
OPTIMIZATION TRIAL REALLY
MUSHROOM.
IF YOU ADD EVEN ONE LEVEL TO ONE
FACTOR YOU'RE LOOKING AT LEAST
HALF AS MANY PARTICIPANTS TO
POWER THE STUDY.
I START WITH THE HIGHEST AND
LOWEST LEVEL YOU'D REASONABLY
USE AND IF THERE'S NO
DIFFERENCE -- YOU DON'T CARE
ABOUT THE MIDDLE ONE UNLESS YOU
THINK THERE'S A LINEAR
RELATIONSHIP.
YOU DON'T THINK YOU'LL BE DOING
JUST ONE EXPERIMENT.
IT'S MORE ITERATIVE.
>>THANK YOU SO MUCH.
WE HAVE LOTS OF OTHER QUESTION
AND INTERESTS BUT WE NEED TO END
THE SESSION.
I'D LIKE TO THANK ALL OF YOU FOR
AN EXCITING PANEL.
THANK YOU.
>>THANK YOU FOR THE EXCITING
DISCUSSION AND THANK YOU FOR
JOINING THE SUMMIT AND FOR THE
PRESENTERS.
I'LL CONCLUDE WITH A SUMMARY AND
PASS IT TO JULIE FOR A BRIEF
LOOK OF WHAT TO EXPECT TOMORROW
AND HOPE YOU ALL WILL CERTAINLY
JOIN US.
WE BEGAN FROM HEARING FROM
FACILITATORS AND MEMBERS WITH
THE PANEL AND LES BURGER
HIGHLIGHTING THE SENSE OF
URGENCY WITH WHICH WE MUCH UNDER
PIN OUR EFFORTS TO IMPROVE
DEMENTIA CARE AND TREATMENT OF
ALZHEIMER'S DISEASE AND OTHER
DEMENTIA.
WE HEARD FROM PANEL MEMBER RITA
HARRISON HIGHLIGHTING THE STIGMA
AND WHAT MATTERS MOST TO HER AS
A PERSON LIVING WITH COGNITIVE
SYMPTOMS.
WE HEARD ABOUT PROGRESS AND
PRIORITIES SURROUNDING DEMENTIA
CARE AND CARE GIVING RESEARCH AT
THE NATIONAL INSTITUTE ON AGING
INCLUDING ADVANCEMENT OF EFFORTS
CONSISTENT WITH THE NIH STAGE
MODEL.
OUR FIRST SESSION 1 FOCUSSED ON
WHAT MATTERS AND LIVING WELL
WITH DEMENTIA.
PRESENTERS AND REMARKS
HIGHLIGHTED WE STILL HAVE
CONSIDERING WORK TO DEVELOP
VALID AND RELIABLE MEASURES THAT
CAPTURE AND ARE SENSITIVE TO
CHANGES IN WHAT MATTERS POST TO
PEOPLE LIVING WITH DEMENTIA AND
THEIR CAREGIVERS AND/OR CARE
PARTNERS.
THERE'S CONGRUENCE WITH THE
ITEMS USED IN COMMON CORE
OUTCOME MEASURES TO EVALUATE
WELL BEING WITH WHAT PEOPLE
STATED IS MOST IMPORTANT TO
THEM.
IMPORTANT OPPORTUNITIES FOR
RESEARCH RESEARCH THERE WE HEARD
ABOUT THE UTILITY AND
CONSIDERATIONS FOR SPECIFIC
APPROACHES TO MEASUREMENT
INCLUDING MEASURES OF AT
HOMENESS AND GOAL ATTAINMENT
SCALING AS A SPECIFIC APPROACH
FOR CLINICAL USE ENVIRONMENT AND
IN RESEARCH TO MONITOR OUTCOMES.
PANELISTS HIGHLIGHTED FOR US THE
VALUE AND UTILITY OF MIXED
METHODS USING QUALITATIVE AND
QUANTITATIVE APPROACHES TO
FACILITATE MEASUREMENT OF ITEMS
THAT MAY BE SUBJECTIVE OR
HETEROGENOUS ACROSS INDIVIDUALS
AND OVER TIME.
SESSION 2 FOCUSSED ON DETECTION
HIGHLIGHTED FOR US FOR
DISPARITIES IN CARE ACCESS AND
USE PATTERNS ACROSS POPULATIONS
AS WELL AS UNDERLYING DISEASE
RISK WITH EFFORTS WE WANT TO
MOVE FORWARD TO FACILITATE
EQUITABLE DETECTION AND
DIAGNOSIS OF DEMENTIA ACROSS
VARIOUS DATA SOURCES THAT MAY BE
AVAILABLE TO US FOCUSSING ON THE
ELECTRONIC HEALTH RECORD WHICH
HAS INFORMATION ABOUT DIAGNOSIS
SOMEONE MAY HAVE AND INFORMATION
THAT IS WRITTEN IN NOTES AND IN
A STRUCTURED WAY A CLINICAL
PROVIDER MAY HAVE BEEN AN
INDIVIDUAL OR IN THE COURSE OF
CARE DELIVERY.
PANELISTS HIGHLIGHTED ATTENTION
TO IMPORTANT LIMITATIONS AND
TRADE-OFFS THAT EXIST THE
VARIOUS DATA SOURCES THAT WE MAY
WANT TO LEVERAGE IN RESEARCH TO
FACILITATE DETECTION AND
REAL-WORLD ENVIRONMENTS AND THE
LACK OF GOLD STANDARD RESOURCES
AND THOSE CHARACTERISTICS OF
INDIVIDUALS AND THOSE VULNERABLE
TO EXCLUSION OR UNDER
REPRESENTED IN CARE RESEARCH WE
SEE.
IT HIGHLIGHTED LISTENING IN
RESEARCH SURROUNDING DEMENTIA
CARE AND CAREGIVER AND FOR
LOOKING AHEAD TO DAY TWO AND
THREE WE'LL HEAR MORE IN SESSION
5 TOMORROW AND SESSION 8 ON THE
THIRD DAY OF THE SUMMIT.
WE HAD A FANTASTIC SESSION THAT
HIGHLIGHTED OPPORTUNITIES TO
CONSIDER IN THE DEMENTIA CARE
AND CARE GIVING RESEARCH FIELD
AND WAYS TO ACCELERATE THE
USABILITY AND THE READINESS AND
EASE OF IMPLEMENTATION BY USING
STRATEGY AS AN AN APPROACH TO
BALANCING EFFECTIVENESS AGAINST
AFFORDABILITY AND THE DEGREE OF
EASE OF IMPLEMENTATION AND IN
CLOSING I'D BE REMISS IF I DID
NOT HIGHLIGHT PERHAPS ONE OF THE
MOST IMPORTANT MESSAGES ACROSS
OUR SESSIONS TODAY REGARD THIG
PRIORITIES AND NEEDS OF PEOPLE
LIVING WITH DEMENTIA WITH
RESPECT AND PERSON-CENTERED
APPROACHES AND CARE MEAN TO
INDIVIDUALS AND WHAT THEY T
TANGIBLY LOOK LIKE AND
HIGHLIGHTED THE IMPERATIVES FOR
RECOGNIZING VALUING AND
UNDERSTANDING HOW TO MAINTAIN
AND STRENGTHEN THE ASPECT OF
CARE AND DEMENTIA AND YOU'RE
STILL A PERSON AND TALKING ABOUT
THE JOURNEY OF DEMENTIA AND
WANTING TO BE RECOGNIZED AS A
PERSON NOT A USED TO BE BUT IS.
I HOPE THIS WILL ECHO WITH US
AND I WANT TO THANK EVERYONE FOR
YOUR PARTICIPATION TODAY.
OVER TO JULIE.
>>I GET TO WRAP UP BY THANKING
EVERYONE AGAIN, PARTICIPANTS AND
DISCUSSANTS AND WE'LL BEGIN
TOMORROW WITH ADDITIONAL INSIGHT
FROM OUR LIVED EXPERIENCE PANELS
AND WE HAVE ONE ON DEMENTIA CARE
MODELS AND CARE AND DISPARITIES
IN HEALTH CARE ACCESS AND
UTILIZATION AND QUALITY AND
SUPPORT THE CARE PARTNERS.
ENJOY YOUR EVENING OR AFTERNOON
DEPENDING ON WHERE YOU'RE
LOCATED.
THANK YOU, EVERYONE.