WELCOME TO DAY THREE OF THE 2023
NATIONAL RESEARCH SUMMIT ON
CARE, SERVICES AND SUPPORTS FOR
PERSONS LIVING WITH DEMENTIA AND
THEIR CARE PARTNERS AND
CAREGIVERS.
WE'LL BEGIN OUR DAY BY HEARING
REMARKS OF MEMBERS OF THE LIVED
EXPERIENCE AND STAKEHOLDER
ENGAGEMENT PANELS AND THEN HEAR
FROM THREE DIFFERENT SCIENTIFIC
SESSIONS YOU SEE LISTED HERE.
THE FIRST SESSION FOCUSSED ON
THE DEMENTIA CARE WORKFORCE.
NEXT A SESSION FOCUSSED ON
ECONOMIC IMPACTS, IMPLICATIONS
AND APPROACHES AND THEN WE'LL
CLOSE WITH OUR SESSION FOCUSSED
ON APPROACHES TO PARTICIPATORY
RESEARCH AND DIVERSE RECRUITMENT
AND RETENTION IN DEMENTIA CARE
RESEARCH.
A BRIEF REMINDER ABOUT WAYS TO
PARTICIPATE IN THE SUMMIT IN
PARTICULAR DURING THE QUESTION
AND ANSWER PORTIONS OF THE
SESSIONS.
IF YOU HAVE JOINED THE SUMMIT BY
THE ZOOM WEBINAR, PLEASE ENTER
YOUR QUESTIONS DIRECTLY INTO THE
Q&A BOX.
IF YOU HAVE JOINED US FROM THE
NIH VIDEOCAST, PLEASE CLICK ON
SEND LIVE FEEDBACK, ENTER YOUR
NAME AND E-MAIL ADDRESS AND TYPE
YOUR QUESTION TO BE ADDED TO THE
ZOOM.
THERE MAY BE A SLIGHT DELAY.
WE'LL DO OUR BEST TO GET TO ALL
QUESTIONS SUBMITTED LIVE DURING
THE Q&A DISCUSSION BUT DUE TO
TIME CONSTRICTION WE MAY NOT BE
ABLE TO ANSWER ALL QUESTIONS
DURING THE PROCESS AND
INDIVIDUALS PRESENTING IN THE
SESSION WILL DO THEIR BEST TO
ANSWER YOUR QUESTIONS IN THE Q&A
BUT REGARDLESS ALL QUESTIONS
THAT ARE SUBMITTED OVER THE
COURSE OF THE SUMMIT WILL BE
REVIEWED BY THE SCIENTIFIC
STEERING COMMITTEE.
WITHOUT FURTHER ADO I'M PLEASED
TO INTRODUCE OUR SPEAKERS FROM
THE LIVED EXPERIENCE PANEL IN
THE STAKEHOLDER ENGAGEMENT PANEL
WHO ARE GOING TO BE SHARING SOME
REMARKS TODAY.
I'LL FIRST HAND IT TO WILLETHA
BARNETTE.
IF YOU COULD PLEASE TAKE THE
SLIDES DOWN.
THANK YOU.
TAKE IT AWAY.
>>GOOD MORNING.
ONLY IN RETROSPECT DID I REALIZE
HOW UNPREPARED I WAS FOR THE
FINANCIAL CHALLENGES OF
CAREGIVER AND THE DEMENTIA
DIAGNOSIS I HAPPEN TO SEE IN
MOM'S ELECTRONIC MEDICAL RECORD.
WHEN MOM HIT A ROUGH PATCH AND
COULD NOT AFFORD TO LIVE ON HER
OWN SHE MOVED IN WITH ME FROM A
FEW HOURS AWAY FROM WHAT I
THOUGHT WAS A BRIEF PERIOD.
MOM WAS 65.
I WAS 37 RECENTLY SEPARATED AND
MY DAUGHTER WAS 13.
THAT TEMPORARY STAY STRETCHED TO
MORE THAN 20 YEARS AS SHE
EXPERIENCED MEDICAL SETBACKS.
WITHOUT A PLAN FOR DEALING WITH
THIS POSSIBILITY I FOUND MYSELF
CONSTANTLY IN A REACTIVE RATHER
THAN PROACTIVE POSTURE.
JUST THE EXTRAORDINARY COSTS OF
DEALING WITH SPECIAL MEDICAL
SUPPLIES AND DURABLE MEDICAL
EQUIPMENT NEEDED FOR HER
SECURITY AND COMFORT WERE
DAUNTING.
MEDICARE COVERS ONLY 80% OF
MEDICAL EXPENSES AND THE BALANCE
OF 20% COULD BE VERY
UNAFFORDABLE ESPECIALLY IF IT IS
20% OF A LARGE NUMBER.
NOW THOUGH I LOVE MY MOTHER
DEARLY IT WAS ALWAYS SOMETHING
AND THAT SOMETHING ALWAYS HAD A
PRICE SUCH AS HAVING A RAMP
BUILT ON TO MY HOME FOR IMPROVED
HANDICAP ACCESS.
INSTALLING A WALK-IN SHOWER WITH
A SEAT, HIRING HOME HEALTH CARE
WORKERS TO HELP WITH ADLs AND
PURCHASING A NEW VEHICLE TO MAKE
IT EASIER TO TRANSFER HER FROM
WALKER TO CAR SEAT.
BIT BY BIT I CHIPPED AWAY AT MY
RETIREMENT SAVINGS UNTIL THE
BALANCE HOVERED NEAR ZERO.
REPAIRS AND IMPROVEMENTS TO MY
HOME WERE POSTPONED.
SOMETIMES I EVEN PRIORITIZED HER
NEEDS OVER THOSE OF MY OWN
CHRONIC ILLNESS AND A LURING
TRAP I LUCKILY SURVIVED.
WHEN FREQUENT ISSUES COMPOUNDED
THE DEMENTIA DIAGNOSES I
STRUGGLED TO FIND RESOURCES FOR
THE INSTITUTIONAL CARE
RECOMMENDED BY HER MEDICAL
PROVIDERS.
NOT ABLE TO AFFORD A LAWYER I
APPLIED FOR AID AND ATTENDANCE
THROUGH THE VETERAN
ADMINISTRATION'S FATHER'S
WARTIME BENEFITS AND AFTER
BUREAUCRATIC DELAYS AND AFTER
APPROVAL FOR THE SPOUSAL BENEFIT
INITIALLY THAT ALLOWS KNOW FIND
HER RESIDENCY IN A PERSONAL CARE
HOME.
MOM'S FINAL STOP WAS IN A
SKILLED NURSING FACILITY AFTER
BEING HOSPITALIZED FOR THREE
SUCCESSIVE MONTHS.
CAREGIVING DIDN'T END THERE.
THE UNEXPECTED EXPENSES ADDED TO
THOUSANDS OF DOLLARS OVER THE
YEARS.
YES, THERE ARE FINANCIAL
LIABILITIES OF UNPAID FAMILY
CAREGIVING.
THERE WAS SO MUCH TO FIGURE OUT
INCLUDING A FINDING A
GERIATRICIAN TO DESCRIBE
PUZZLING BEHAVIORS EVEN IN THE
INTIMACY OF THE HOME.
MY UNDERSTANDING OF DEMENTIA WAS
OUT OF SYNC WITH THE LIVED
EXPERIENCE AND LIGHT BULB
MOMENTS TOOK TIME AND IT TOOK
TIME TO RECOGNIZE THE SIGNS OF
COGNITIVE DECLINE.
THE ACCUSATORY BEHAVIOR AND
URINARY TRACT INFECTIONS AND
FATIGUE.
THE FINANCIAL CONSEQUENCES OF
BEING UNPREPARED AND YES
UNINFORMED ARE NUMEROUS.
IT SHOULDN'T BE SO HARD.
A UNIFIED VISION FOR PATIENTS,
CAREGIVERS AND PROVIDERS WOULD
CERTAINLY HELP BECAUSE DEMENTIA
IS NO RESPECTER OF AGE, ZIP CODE
OR SOCIO ECONOMIC STATUS.
THANK YOU.
>>THANK YOU, WILLETHA FOR
SHARING YOUR EXPERIENCES AND
THOSE POIGNANT REMARKS.
WE'LL NEXT HEAR FROM DAVE
ARNOLD.
>>GOOD MORNING.
MY NAME IS DAVE ARNOLD AND I WAS
DIAGNOSED WITH ALZHEIMER'S TWO
AND A HALF YEARS AGO.
I WAS FIRST DIAGNOSED WITH MCI
FIVE YEARS AGO.
WHEN I STARTED EXPERIENCING
PROBLEMS WITH MY MEMORY.
MY WIFE NOTICED AT FIRST.
I SEEMED TO LOSE MY NAVIGATIONAL
SKILLS WHICH I USUALLY CAN FIND
MY WAY ANYWHERE I WAS GOING.
I WAS ALWAYS -- I COULDN'T
FIGURE OUT WHERE I WAS GOING AND
HOW I WAS GOING TO GET AROUND.
WHEN I FIRST GOT MY DIAGNOSIS OF
ALZHEIMER'S OF COURSE I WAS VERY
UPSET.
I WAS OBVIOUSLY UPSET AND
DEPRESSED, WORRIED WHETHER I
COULD REMEMBER MY GRANDCHILDREN
AND SEE THEM GRADUATE FROM
SCHOOL.
MY MOTHER HAS ALZHEIMER'S AND
PASSED AT THE AGE OF 73.
I WATCHED HER HEALTH, MEMORY
DECLINE AND A KNEW IT WAS SCARY
FOR HER.
I DON'T WANT TO FORGET WHO MY
FAMILY IS.
I COMPARE IT TO A SONG THAT I
HEARD GLEN CAMPBELL WROTE I'M
NOT GOING TO MISS YOU.
HE SUFFERED FROM ALZHEIMER'S AND
WROTE THE STRONG AND I CAN
IDENTIFY THE LYRICS THAT SAY
YOU'RE NOT THE LAST PERSON I
WILL LOVE, YOU'RE NOT THE LAST
PERSON I WILL RECALL.
I'M NEVER GOING TO KNOW WHAT YOU
GO THROUGH AND ALL THE THINGS
YOU SAY AND DO.
ALL THE HURT AND PAIN AND ALL
THE SELFISHNESS REMAINS, I'M NOT
GOING TO MISS YOU.
AT SOME POINT I WON'T REMEMBER
MY WIFE.
I WON'T REMEMBER MY DAUGHTERS,
MY GRANDCHILDREN BUT WHILE I
CAN, I WANT TO LIVE THE BEST
LIFE I CAN AND I WANT TO REMAIN
POSITIVE AND MAKE A DIFFERENCE
IN THE WORLD.
I AM STILL DRIVING AND HOPE TO
CONTINUE DRIVING AS LONG AS
POSSIBLE.
I'M NOT READY TO GIVE UP MY
INDEPENDENCE.
I WANT TO KEEP MAKING MY DREAMED
COME TRUE AND KEEP CROSSING
THINGS OFF MY BUCKET LIST.
MY WIFE AND I TRAVEL TO HAWAI'I
AND IRELAND IN THE LAST COUPLE
OF YEARS.
THAT'S WHY MY WIFE AND I SHARE
STORIES TO HELP RAISE AWARENESS
IN LIVING WITH ALZHEIMER'S AND
DEMEN
DEMENTIA.
WE ESPECIALLY WANT TO HELP
OTHERS IN OUR SMALL RURAL
COMMUNITY REMAINING IN THEIR
HOLDS.
HOPEFULLY AS LONG AS POSSIBLE.
I WANT TO HELP OTHERS LIVING
WITH THIS HORRIBLE DISEASE.
I KNOW IN THE FUTURE I WILL NEED
ONE-ON-ONE CARE AND SOMEONE TO
HELP ME BATHE, SHAVE AND FEED
ME.
I WILL NEED SOMEONE TO HELP ME
WITH MY MEDICATIONS AND STAY
WITH ME FOR WHEN MY WIFE LEAVES
OUR HOME.
MY WIFE AND I HAVE LOOKED FOR A
RETIREMENT FACILITY NEAR OUR
HOME THAT HAS INDEPENDENT
ASSISTED LIVING, A NURSING HOME
AND I FEEL COMFORTABLE THAT I
HAVE CHOSEN THE PLACE WHERE I
WILL BE ABLE TO BE HAPPY AND
TAKEN CARE OF AS THE DISEASE
PROGRESSES.
I DO HOPE TO REMAIN IN MY HOME
AS LONG AS POSSIBLE AND CONTINUE
MY JOURNEY LIVING WITH
ALZHEIMER'S.
I AM TRYING TO LIVE THE BEST
LIFE POSSIBLE.
THANK YOU.
>>THANK YOU VERY MUCH, DAVE FOR
SHARING YOUR EXPERIENCES AND
INSIGHT WITH US.
NEXT I'M GOING HAND IT OVER TO
PETRA NILES.
>>GREET INGS FROM THE WEST
COAST.
THANK YOU TO THE NATIONAL
INSTITUTE ON AGING ON HOSTING
THE NATIONAL RESEARCH SUMMIT ON
CARE, SERVICES AND SUPPORTS FOR
PERSONS WITH DEMENTIA AND THEIR
CARE PARTNERS.
I APPRECIATE THE HONOR TO HAVE
PARTICIPATED IN THE STAKEHOLDER
ENGAGEMENT PANEL AND TO GIVE
REMARKS TODAY.
AS A GERONTOLOGIST AND SENIOR
MANAGER OF EDUCATION, OUTREACH
FOR THE AFRICAN AMERICAN
COMMUNITY.
THERE IS A QUOTE BY FIRST LADY
ELEANOR ROOSEVELT AND SAYS DAY
IS THE OLDEST YOU'VE EVER BEEN
AND THE YOUNGEST YOU'LL EVER BE
AGAIN.
FROM A GERONTOLOGICAL
PERSPECTIVE ALL OF US HERE TODAY
AND WHO HAVE JOINED DAY ONE AND
DAY TWO HAVE HEARD SOME VERY
IMPORTANT INFORMATION THAT
INDIVIDUALLY WE CAN ALL MAKE
SOME INFORMED DECISIONS NOW.
HOPEFULLY RATHER THAN LATER.
FROM MY PERSPECTIVE CONSIDERING
HAIR, USING A MULTI-DISCIPLINARY
APPROACH IS EXTREMELY BENEFICIAL
NOT ONLY TO THE PERSON WITH THE
DIAGNOSIS OF DEMENTIA BUT THE
FAMILY MEMBERS AND EVEN THE
HEALTH PROFESSIONALS INVOLVED
AND ENGAGED WITH THE CARE.
IT'S ALSO IMPORTANT TO CONSIDER
WHEN YOU ARE THINKING OF A
MULTI-DISCIPLINARY APPROACH, WHO
IS MISSING FROM THE MODEL.
IT'S ALSO IMPORTANT TO CONSIDER
AN INTERORGANIZATIONAL MODEL, A
COLLABORATIVE OR NETWORK WHO
CONSISTS OF THOSE WHO LIVE IN
THE COMMUNITY THAT THEY SERVE.
THEY PROVIDE SERVICES, THEY ARE
AWARE OF THE GAPS, THE BARRIERS
AND CAN ASSIST IN GIVING
FEEDBACK TO RESEARCHERS
REGARDING STRATEGIES THAT CAN
INCREASE CULTURALLY TAILORED
WORK AND THEY'RE ALSO IMPORTANT
IN GIVING FEEDBACK REGARDING
TERMS USED THAT MAY OR MAY NOT
BE BENEFICIAL TO OUR COMMUNITY.
THEY CONSISTENT OF TRUSTED
SOURCES.
ANOTHER QUOTE I'LL READ IS FIRST
LADY CARTER SAID THERE'S FOUR
TYPES OF PEOPLE IN THE WORLD.
THOSE WHO HAVE BEEN A CAREGIVER,
THOSE WHO ARE CURRENTLY
CAREGIVERS AND THOSE WHO WILL BE
A CAREGIVER AND THOSE WHO WILL
NEED A CAREGIVER.
FROM THAT PERSPECTIVE WE SHOULD
CONSIDER THE WORKFORCE.
WHO DO WE HAVE THAT WILL TAKE OF
US, TRAINED, COMPETENT, CARING,
COMPASSIONATE INDIVIDUALS WHO
CAN CENTER THEMSELVES WHILE
THEY'RE CARING FOR OTHERS?
WE MUST CONSIDER GENERATIONS SO
THE GENERATIONS THAT ARE HERE
TODAY CONSIDER THOSE WHO ARE
COMING BEHIND US.
AN ORGANIZATION CALLED THE YOUTH
MOVEMENT AGAINST ALZHEIMER'S I
BELIEVE POSSESSES THE ABILITY TO
INFLUENCE THE WORKFORCE.
THEY CAN BE CONSIDERED ALSO A
PIPELINE TO PROFESSIONALS.
THEY CAN COVER FROM CAREGIVING,
GERIATRICIANS, NEUROOLOGIST,
NEUROPSYCHOLOGISTS RESEARCHERS
AND MANY MORE BUT WE HAVE TO
CONSIDER THEM AND INCLUDE THEM
NOW.
SOME OF THE SUCCESSES FROM
ALZHEIMER'S LOS ANGELES IS THE
DEVELOPMENT OF AN ALL DIRECT
CONNECT.
A TOOL THAT ALLOWS CARE
PROVIDERS TO DIRECTLY LINK
PATIENTS AND FAMILIES TO
ALZHEIMER'S LOS ANGELES.
IMPROVING COORDINATION AND
HEALTH EQUITY.
IT'S IMPORTANT TO CONSIDER
CAREGIVERS AND NOT JUST WOMEN.
MEN ARE CAREGIVERS TOO.
IN DOING SO I CONSIDER AFRICAN
AMERICAN MEN WHOSE JOURNEY HAS
BEEN SO CHALLENGED AND CREATED
AN AFRICAN AMERICAN GROUP CALLED
BROTHER TO BROTHER.
WE ALSO CREATED AN EASY TO READ
CAREGIVER TIP SHEETS IN ENGLISH,
SPANISH AND CHINESE ON COMMON
CONCERNS REGARDING CARE SUCH AS
BATHING, SUNDOWNING, DRIVING AND
MANY MORE TOPICS.
WE ALSO HAVE AVAILABLE MASTER'S
LEVEL CARE CONSULTANTS WHO WILL
SPEAK WITH FAMILIES, HAVE FAMILY
MEETINGS, REGARDING CARE AND
PLANNING.
THE SUMMIT IS A MOVEMENT.
THE WORK CONTINUES.
THANK YOU.
>>THANK YOU, PETRA.
THANK YOU SO MUCH, WILLETHA,
DAVE AND PETRA FOR SHARING THE
PERSONAL AND MOVING REMARKS.
FOR YOUR SIGNIFICANT
CONTRIBUTIONS TO THE SUMMIT.
HEARING FROM AND LEARNING FROM
THE LIVED EXPERIENCES YOU HAVE
SO GENEROUSLY SHARED IS
ESSENTIAL TO THE EFFORTS WE'RE
DISCUSSING TO ADVANCE DEMENTIA
CARE AND CAREGIVING SCIENCE AND
WANT TO THANK EVERYONE WHO
CONTRIBUTED IN THIS WAY AND TO
THE MANY PARTICIPANTS AT THE
SUMMIT AS WELL GENEROUSLY
SHARING THEIR LIVED EXPERIENCE
TO HELP GUIDE THESE EFFORTS.
I ADDITIONALLY WANT TO REMIND
EVERYONE THERE ARE SUMMARIES
AVAILABLE ONLINE THAT DETAIL THE
OUTCOMES OF BOTH THE LIVED
EXPERIENCE PANEL AND THE
STAKEHOLDER ENGAGEMENT PANEL AND
WE ENCOURAGE YOU DO ACCESS AND
REVIEW THE SUMMARIES IN GREATER
DETAIL.
AND WE'LL TRANSITION TO THE
DEMENTIA CARE WORKFORCE
CO-CHAIRED BY JOANNE SPETZ AND
ELENA FAZIO.
>>SO THANK YOU VERY MUCH FOR
OUR ENGAGEMENT IN THIS AND I
WILL GET US GOING RIGHT AWAY TO
TALK ABOUT THE WORKFORCE.
THE DEMENTIA CARE WORKFORCE
PROVIDES CARE FOR PEOPLE LIVING
WITH DEMENTIA AND IT'S PROVIDED
IN MANY SETTINGS.
OUR PRESENTATIONS WILL TOUCH ON
THIS.
WE FIND THE WORKFORCE IN NURSING
HOMES AND ASSISTED LIVING
FACILITIES AS WELL AS HOME
HEALTH AND HOME CARE AGENCIES
AND PRIVATELY HIRED INDIVIDUALS
WORKING IN THE HOME.
WE ALSO FIND THE WORKFORCE
SERVING IN PRIMARY CARE AND
SPECIALTY PRACTICES INCLUDING
PSYCHIATRY, GERO PSYCHIATRY AND
ONCOLOGY AND OTHER FIELD AND
FIND THEM IN HOSPITALS,
EMERGENCY DEPARTMENTS AND URGENT
CARE.
SOME PANELS YESTERDAY AND THE
DAY BEFORE TOUCHED ON THE
DIFFERENT CARE SETTINGS AND THE
IMPORTANCE OF THESE DIFFERENT
CARE SETTINGS ACROSS THE
CONTINUUM OF SUPPORT.
THERE ARE ALSO MULTIPLE HEALTH
PROFESSIONALS IMPORTANT FOR CARE
FOR PEOPLE LIVING WITH DEMENTIA.
RANGING FROM LICENSED
PROFESSIONS SUCH AS REGISTERED
NURSES AND PHYSICIANS THROUGH
THE UNLICENSED PHYSICIANS SUCH
AS HOME CARE AIDS AND NURSING
HOME ASSISTANTS NOT LICENSED BUT
CERTIF
CERTIFIED.
THE PRESENTATIONS TODAY FOCUS ON
DIRECT CARE WORKERS ACROSS THESE
DIFFERENT SETTINGS.
CERTIFIED NURSING ASSIST AND
THES, HOME HEALTH ASSISTS,
PERSONAL CARE ASSISTANTS AND
MEDICATION AIDS.
THESE WORKERS ARE GENERALLY
UNLICENSED PROFESSIONS.
THEY MAY BE CERTIFIED AND THE
MOST NUMEROUS OF THE OCCUPATIONS
AS WE'LL LEARN IN THE
PRESENTATION IN A FEW MINUTES.
AS I GROUP WE CALL THESE DIRECT
CARE WORKERS AND THESE
PROFESSIONALS INTERSECT WITH
OTHER LICENSED AND UNLICENSED
AND FOUND IN THE HEALTH CARE
SETTINGS OF PEOPLE LIVING WITH
DEMENTIA.
THERE'S RESOURCES I'LL POINT YOU
TO.
THE FIRST IS A NOTICE OF SPECIAL
INTEREST BY NIA ON THE DEMENTIA
WORKFORCE FOR THOSE LIVING WITH
ALZHEIMER'S DISEASE AND RELATED
DEMENTIAS.
WE HAVE ESTABLISHED THE
WORKFORCE ANALYSIS AND AWARD
NETWORK THAT WAS AND SEVERAL
PEOPLE INVOLVED INCLUDING ME AND
SURVEYS THAT WOULD EXPAND ON THE
WORKFORCE AND ENABLE THE DATA TO
BE LINKED WITH INFORMATION ABOUT
THE OUTCOMES OF PEOPLE LIVING
WITH DEMENTIA.
AND YOU CAN FIND MORE
INFORMATION AT THE ADRD RESEARCH
IMPLEMENTATION MILESTONE 13.J
WEB PAGE AND OTHER WE HAVE PAGES
THAT HAVE INFORMATION ABOUT NIA
PRIORITIES.
OUR SPEAKERS ARE BIANCA FROGNER,
JASMINE TRAVERS AND JENNIFER
RECKREY.
THESE SPEAKERS ARE GOING TO
TOUCH ON DIFFERENT ASPECTS AND
SETTINGS FOCUSSING ON DIRECT
CARE WORKERS.
FIRST DR. FROGNER WILL PROVIDE A
GENERAL OVERVIEW OF THE
WORKFORCE ACROSS ALL THE
PROFESSIONS AND SETTINGS.
THEN DR. TRAVERS WILL TALK ABOUT
DIRECT CARE WORKERS IN NURSING
HOMES AND DR. RECKREY WILL SPEAK
ABOUT HOME-BASED DEMENTIA CARE.
WE HAVE TWO PANELISTS, MELISSA
MYERS-BRISTOL WITH THE CLAYTON
COUNTY SERVICES DEPARTMENT AND
DAVID GRABOWSKI AT HARVARD
UNIVERSITY.
I'LL HAND IT OVER TO DR. FROGNER
THEN.
>>THANK YOU.
I'M A DIRECTOR AT THE CENTER FOR
WORKFORCE STUDIES AND PROFESSOR
OF DEPARTMENT OF FAMILY MEDICINE
AT UNIVERSITY OF WASHINGTON AND
I'LL START BY TALKING ABOUT WHAT
WE KNOW AND DON'T KNOW ABOUT THE
DEMENTIA CARE WORKFORCE.
AT A HIGH LEVEL THERE ARE ABOUT
17 MILLION WHO WORK IN HEALTH
CARE.
THIS IS BASED ON DATA THE BUREAU
OF LABOR STATISTICS OF THE
DEPARTMENT OF LABOR ONE OF THE
BIGGEST GROUPS THAT TRACKS
EMPLOYMENT ACROSS THE ECONOMY.
NOW, ACCORDING TO THE WAY WE
CODE INDUSTRIES AND TRACK
EMPLOYMENT, THERE REALLY ISN'T
AN INDUSTRY CALLED THE DEMENTIA
CARE INDUSTRY.
INSTEAD WE HAVE TO RELY ON CODES
MORE FOCUSSED ON WHERE HEALTH
CARE IS BEING DELIVERED AND ONE
WAY TO BREAK DOWN WHO WORKS IN
HEALTH CARE.
OUT OF THE 17 MILLION WE'RE ABLE
TO TRACK IN HEALTH CARE A THIRD
WORK IN HOSPITALS.
ANOTHER THIRD WORK IN AMBULATORY
CARE SETTINGS INDICATED BY THE
GREN BOX ON YOUR SCREEN.
-- GREEN BOX AND ANOTHER THIRD
WORK IN A LONG-TERM CARE SETTING
WHICH MAY INCLUDE NURSING CARE
FACILITIES, SKILLED NURSING AND
RESIDENTIAL AND CONTINUING CARE
WHERE YOU TEND TO FIND PLACES
LIKE ASSISTS LIVING LOCATED IN
THE BUCKET THEN YOUR HOME HEALTH
CARE SERVICES.
IT DOES NOT INCLUDE PEOPLE
WORKING IN PRIVATE HOUSEHOLDS
MANY CAREGIVERS WORK.
ANOTHER WAY TO BREAK IT DOWN IS
IN THEIR OCCUPATION.
I HIGHLIGHTED A FEW KEY
OCCUPATIONS WE TEND TO SEE IN
THE DEMENTIA CARE WORKFORCE.
AMONG THEM ARE R.N.s AND
REGISTERED NURSES AND THAT IS A
SINGLE LARGEST OCCUPATIONAL
GROUP ABOUT 17% OF THE AND THE
LARGEST BUCKET IS OUR HEALTH
CARE SUPPORT WORKERS IN WHICH
YOU'LL FIND MANY DIRECT CARE
WORKERS THAT JOANNE MENTIONED
INCLUDING YOUR NURSING ASSIST
AND THES, HOME HEALTH AIDS AND
HOME/PERSONAL CARE AIDES.
HAVE YOU YOU HAVE YOUR
PHYSICIANS, PHARMACISTS,
OCCUPATIONAL THERAPISTS,
PHYSICAL THERAPISTS AND SOCIAL
WORKERS.
IDENTIFYING WHO PLAYS WHAT ROLE
TO PEOPLE WITH DEMENTIA IS
DIFFICULT AND FAMILY MEMBERS WHO
CARE FOR PEOPLE LIVING WITH
DEMENTIA.
I WANT TO FOCUS ON THE LONG-TERM
CARE SETTINGS IN WHICH WE FIND
PATIENTS LIVING WITH DEMENTIA
WHEN WE LOOK AT THE EDUCATION OF
HEALTH CARE WORKERS IN GENERAL
THEY MAP TO THE REST OF THE
ECONOMY GENERALLY HEALTH CARE
HAS MORE EDUCATED INDIVIDUALS
WORKING IN THIS INDUSTRY IN PART
BECAUSE OUR PHYSICIANS ARE SOME
OF THE MOST HIGHLY EDUCATED
WORKERS IN THE ECONOMY THEREFORE
THEY SKEW THE DISTRIBUTION.
IF YOU LOOK AT THE LONG-TERM
SETTINGS OF NURSING HOME
FACILITIES THIS IS WHERE YOU
FIND THE HIGHEST PERCENTAGE, 80%
OF WORKERS WITH LESS THAN A
BACHELOR'S DEGREE OF EDUCATION.
THE SAME GROUP OF PEOPLE,
ESPECIALLY A DIVERSE GROUP.
WE TALK HOW HEALTH CARE IS NOT
VERY DIVERSE.
IF YOU LOOK AT THE TOP TWO
LINES, HEALTH CARE IS VERY
SIMILARLY DISTRIBUTED AS THE
REST OF THE ECONOMY WITH
SLIGHTLY LESS REPRESENTATION OF
HISPANIC HEALTH CARE WORKERS.
HOWEVER, IF YOU LOOK AT THE
LONG-TERM CARE INDUSTRIES AGAIN
WHERE PATIENTS LIVING WITH
DEMENTIA TEND TO BE CARED FOR
MOST WE TEND TO SEE MORE
DIVERSITY THERE WITH HOME HEALTH
HAVING GREATER THAN 50% OF THE
WORKFORCE BEING SOMETHING OTHER
THAN A WHITE RACE THIS IS WHERE
YOU HAVE A HIGHER PERCENTAGE OF
WORKERS WHO MAY BE BLACK OR
HISPANIC OR ANOTHER RACE OR
ETHNICITY.
IN LONG-TERM CARE WE TEND TO
FIND HEALTH CARE WORKERS
STRUGGLING A LOT FINANCIALLY.
THEY TEND TO HAVE QUITE A FEW
SOCIO ECONOMIC RISK FACTORS SUCH
AS EARNING FAIRLY LOW WAGES
WHICH IS SOMETHING YOU'LL HEAR
OFTEN IN THE NEXT COUPLE
PRESENTATIONS.
ONE POINT I WANTED TO BRING UP
IS THE WORKERS THEMSELVES IN
LONG-TERM CARE TEND TO ALSO BE
UNINSURED.
WE HAVE A HIGH RATE OF UNINSURED
A LITTLE BIT HIGHER THAN WE SEE
IN THE ECONOMY IN GENERAL AND
IT'S CONCERNING WHEN WE SEE
FULL-TIME WORKERS THE MOST IN
LONG-TERM CARE WHERE 13% OF THEM
ARE UNINSURED.
SO IN SOME WAYS SOME OF THE
CHALLENGES THAT WE SAW DURING
THE PANDEMIC WAS MAYBE NOT SO
SURPRISING BECAUSE UNFORTUNATELY
MANY HEALTH CARE WORKERS IN THE
LONG-TERM CARE INDUSTRY WERE NOT
ABLE TO STAY HEALTHY AND WELL
AND SAFE IN THEIR JOB.
AND SO AS A RESULT MANY PEOPLE
STEPPED OUT OF THE WORKFORCE
DURING THE PANDEMIC.
WHAT THIS SLIDE IS SHOWING IS
HOW THE EMPLOYMENT LEVEL OF THE
VARIOUS INDUSTRIES IN HEALTH
CARE RELATE TO THE BEGINNING OF
THE PANDEMIC.
THAT FLAT RED LINE INDICATES THE
VARIOUS LEVELS AT THE INDUSTRY
BEFORE THE PANDEMIC STARTED.
AND THE LINE I WANT YOU TO DRAW
YOUR EYES TO IS THE NURSING AND
HOME FACILITIES LINE WHERE WE
SEE SLOW RECOVERY IN THE
EMPLOYMENT LEVELS IN THIS
PARTICULAR SECTOR.
THE RECOVERY IS SEEMINGLY DRIVEN
BY THE ASSISTED LIVING
FACILITIES WHICH HAVE FINALLY
RECOVERED TO EMPLOYMENT LEVELS
SEEN BEFORE THE PANDEMIC
STARTED.
HOWEVER, OUR NURSING CARE
FACILITIES ARE REALLY STILL AT
ABOUT 13% BELOW EMPLOYMENT
LEVELS SINCE THE BEGINNING OF
THE PANDEMIC.
RELATED TO THIS IS WE SEE HIGH
TURNOVER AMONG OUR AIDS AND
ASSISTANTS.
THIS IS NOT BROKEN DOWN BY
LONG-TERM CARE BY LOOKING AT THE
HEALTH CARE INDUSTRY AND THE
LINE I'LL POINT YOU TO IS THE
TOP LINE FOR AIDES AND
ASSISTANTS WE SEE HIGHER LEVELS
OF TURNOVER COMPARED TO ALL
OTHER OCCUPATIONS.
IT'S WORTH KNOWING OUR LVNs AND
RPNs ARE SEEING SLOWER TURNOVER
SINCE THE START OF THE PANDEMIC
AND BEFORE THE PANDEMIC STARTED
OUR AIDES AND ASSISTANTS HAVE
SEEN HIGHER TURNOVER RATES THAN
ANY OTHER OCCUPATION.
THIS IS TAKING TURNOVER BY RURAL
AND URBAN AREAS.
IN URBAN AREAS WE SEE HIGHER
LEVELS OF TURNOVER AMONG HEALTH
CARE WORKERS IN GENERAL IN PART
BECAUSE THERE'S OTHER JOB
OPPORTUNITIES AVAILABLE AND THIS
SHOWS RATES WHERE PEOPLE ARE
LEAVING PLACES OF EMPLOYMENT TO
UNEMPLOYMENT AND OUT OF THE
LABOR FORCE AND NOT SHOWING
PEOPLE TRANSITIONING BETWEEN
EMPLOYERS.
WHAT IS CONCERNING ARE THE TOP
LINES.
THE GRAY LINE YOUR PAYING
ATTENTION TO POINTING OUT
LONG-TERM CARE WE'RE SEEING
HIGHER LEVELS OF TURNOVER AND
YOU SEE THAT IN THE FLATNESS
LINE.
THERE'S RESEARCH GAPS WHEN IT
COMES TO PUBLICLY AVAILABLE
DATA.
WE CANNOT IDENTIFY WORKERS
CARING FOR SPECIFIC KINDS OF
PATIENTS.
WE IDENTIFY THE WORKERS
THEMSELVES AND WHERE WE FIND THE
PATIENTS AND THE CARE SETTINGS
IN WHICH THEY MIGHT BE IN BUT
CONNECTING THE WORKERS TO THEIR
ROLES AND CARING FOR PATIENTS
WITH DEMENTIA IS SPARSE AMONG
PUBLICLY AVAILABLE DATA.
WE HAVE LICENSURE DATA FOR THOSE
LICENSED PROFESSIONALS PROVIDING
MORE DEMOGRAPHIC CHARACTERISTICS
ABOUT OUR HEALTH CARE WORKERS
INCLUDING WHERE THEY MIGHT BE
WORKING AND AGE AND THINGS LIKE
THAT AND WE ARE NOT LICENSED AS
JOANNE MENTIONED EARLIER SO
WHERE WE DON'T HAVE LICENSURE
DATA AVAILABLE WE RELY ON
SURVEYS TO LOOK AT WHO IS CARING
FOR PATIENTS WITH DEMENTIA AND
WE HAVE NO INFORMATION ON THE
WORKFORCE IN THE ASSISTED LIVING
SETTINGS.
WE'VE IDENTIFIED WHO WE MAY BE
LOSING WORKERS TO AND IT'S BEEN
A CHALLENGE IN TERMS OF
MAINTAINING AND RETAINING
WORKERS IN THEIR JOB AND AS
INDICATED EARLY MANY HEALTH CARE
WORKERS WHO ARE WORKING WITH
THIS POPULATION OF PATIENTS
LIVING WITH DEMENTIA MAY BE
STRUGGLING WITH THEIR OWN
FINANCIAL CHALLENGES INCLUDING
NOT HAVING SURANCE.
THEY'RE LOOKING TOWARDS OTHER
INDUSTRIES TO HELP THEM BE MORE
FINANCIALLY SECURE.
AND WE BRING MORE ATTENTION TO
THE DEMENTIA CARE WORKFORCE AND
THIS RAISES OPPORTUNITIES TO
THINK OF BETTER DATA COLLECTION
AND EXPANDING THE SCOPE OF OUR
HEALTH CARE WORKERS WHICH MAY
INCREASE OUR SUPPLY OF HEALTH
CARE WORKERS.
I'LL END THERE.
THANK YOU FOR THE OPPORTUNITY
AND I'LL TURN IT TO THE NEXT
SPEAKER.
>>I'M JASMINE TRAVERS A
RESEARCHER AND ASSISTANT
PROFESSOR AT NYU COLLEGE OF
NURSING AND I'LL PROVIDE MORE
INFORMATION ON THE NURSING CARE
DIRECT WORKFORCE.
NEARLY 600 CERTIFIED NURSING
ASSISTS, DIRECT WORKERS
CONSISTENT MORE THAN 50% OF
WORKFORCE AND PROVIDE THE
MAJORITY OF DIRECT CARE TO
RESIDENTS LIVING WITH DEMENTIA.
SOME OF THE CHALLENGES PLAGUING
THE WORKFORCE IS LOW PAY AND
LIMITED EDUCATION AND TRAINING
AND STAFFING SHORTAGES AND POOR
TREATMENT TOP THE PAY IS
CONSIDERABLY LOW.
THE WORKERS ARE NOT BEING PAID A
LIVING WAGE.
HERE DIRECT CARE WORKERS SUMS IT
UP BEST, YOU CAN'T MAKE $10, $11
OR $12 AN HOUR AND THEN GO HOME
AND PAY FOR A $900 APARTMENT.
IT'S NOT GOING TO WORK.
THE FIGURE ON THE LEFT WE SEE
WHAT STATES PAY THE HIGHEST AND
LOWEST.
THERE'S LIMITED ACCESS TO
EMPLOYEE BENEFITS INCLUDING
HEALTH INSURANCE COVERAGE, SICK
LEAVE AND RETIREMENT BENEFITS.
ALSO PROBLEMATIC IS THE PAY A
DIRECT CARE WORKER RECEIVES
ACROSS SETTINGS AND ACROSS
OCCUPATIONS WITH SIMILAR ENTRY
LEVEL REQUIREMENTS WHICH MAKES
EXTREMELY CHALLENGING THE
LONG-TERM CARE EMPLOYERS TO
RECRUIT AND RETAIN THE ESSENTIAL
WORKERS.
ANOTHER ISSUE IS THE EDUCATION
AND TRAINING THE DIRECT CARE
WORKFORCE RECEIVES.
I HIGHLIGHT THE NEEDS SALIENT
FOR THOSE LIVING WITH DEMENTIA.
YOU SEE THE CURRENT EDUCATION
REQUIREMENTS QUITE LIMITED.
THEY HAVE RECOMMENDATIONS FOR AT
LEAST 120 HOURS OF EDUCATION AND
SEE HIGHER TEST SCORES ON
WRITTEN EXAMS AND IT CAN LEAD TO
NEGLECT AND MALTREATMENT.
NURSING HOMES HAVE EXPERIENCED
THE WORSE JOB LOSS OF ANY
SECTOR.
96% OF NURSING HOMES DESPITE
HIGHER WAGES AND BONUSES AND THE
POOR TREATMENT AND UNDER VALUING
AND DISRESPECT OF WORKERS.
THERE'S POTENTIAL FOR ON THE JOB
INJURY AND PHYSICAL AND
EMOTIONAL STRESS AND LACK OF
RESPECT FROM OTHER HEALTH
PROFESSIONALS AND OPPORTUNITIES
FOR EXPERIENCES FOR DIRECT CARE
WORKERS.
THE FULL INTEGRATION INTO THE
CARE TEAMS IS LIMITED WHERE THEY
ARE NOT ADEQUATELY SOUGHT OUT
FOR THEIR CARE PLANNING
ACTIVITIES DESPITE BEING
RESPONSIBLE FOR THE RESIDENT
CARE HOURS.
THE RECENTLY PUBLIC REPORT ON
HOME CARE QUALITY ADDRESSED
ISSUES I'VE PRESENTED.
THE FIRST OF WHICH IS TO ENSURE
COMPETITIVE WAGES AND BENEFITS.
OPPORTUNITIES INCLUDE LEVERAGING
WAGE PASS THROUGHS AN ADDITIONAL
ALLOCATION OF FUND THROUGH
MEDICAID REIMBURSEMENT FOR THE
PURPOSE OF INCREASING
COMPENSATION AND QUALITY
INCENTIVE PROGRAMS PROVIDED.
APPROPRIATING FUNDS TO STAFFING
WHERE STATES HAVE REQUIRED A
CERTAIN PERCENTAGE OF FUNDS
TOWARDS STAFFING.
LIVING WAGE INDICATOR TAKING
INTO ACCOUNT HOUSING AND
EDUCATION, FOOD.
COMPETITIVE WAGE INDICATORS.
THIS ALLOWS FOR THE RAISING OF
PAY FOR DIRECT WORKERS THAT
SIMILAR ENTRY LEVEL OCCUPATIONS
AND STATE INITIATIVES AROUND
WAGES WE CAN REPLICATE AND SCALE
UP.
SO RAISING THE LIVING WAGE WOULD
GIVE 75% OF DIRECT CARE WORKERS
AN AVERAGE RAISE OF 15.5%.
WITH REGARDS TO A COMPETITIVE
WAGE, HERE WE SEE STARK
DIFFERENCES BETWEEN DIRECT CARE
WORKERS AND OCCUPATIONS WITH
SIMILAR OR LOW ENTRY LEVEL
REQUIREMENTS.
FOR EXAMPLE IN THE STATE OF
ALABAMA, DIRECT CARE WORKERS
MAKE $3.40 LESS THAN THOSE WITH
SIMILAR ENTRY LEVEL
REQUIREMENTS.
THE NASCENT REPORT CALLED FOR
STANDARDS WHERE CMS HAS BEEN
CONDUCTING A STUDY ON STAFFING
REQUIREMENTS AND ALSO IS THE
MINIMUM LEVELS OF EDUCATION
STAFF SHOULD HAVE AND AN
REGISTERED NURSE PRESENT 24
HOURS A DAY OPPOSED TO EIGHT
HOURS A DAY.
NEXT IS THE NEED FOR MORE
EDUCATION.
IT'S NOT JUST A DIDACTIC BUT WE
SEE TESTING IS BETTER ON WRITTEN
EXAMS THAN CLINICAL EXAMS AND
MAKING SURE IT'S BI-DIRECTIONAL
AND EMPHASIZE THE SOFT SKILLS
AND COMPASSION FOR THE
RESIDENTS.
PAID TRAIN AND FACILITATE IN
JOBS AND ADVANCEMENT PATHWAYS.
AND EMPOWERMENT OF DIRECT CARE
WORKERS TO PROVIDER SUPPORT TO
RESIDENTS IN CREATIVE WAYS,
PROTECT RESIDENTS' RIGHTS, BE
INVOLVED IN TEAMS AND DECISION
MAKING AND THE CONSIDERATION OF
CROSS-TRAINING DIRECT CARE
WORKERS IN OTHER POSITIONS AND
PROVIDING BONUSES FOR EXTRA
TRAINING AND THERE'S STATES HAVE
MEMORY CARE SPECIALISTS AND
THESE DIRECT CARE WORKERS
RECEIVE AT LEAST $1.50 MORE PER
HOUR.
AND THESE THAT SCORED HIGH WERE
LIKELY TO HAVE HIGHER CNA
RETENTION THAN STATES THAT
SCORED LOWER.
ADDITIONALLY IMPORTANT FOR
RECRUITMENT AND RESENSE
AEMPHASIZED IN THE REPORT
INCLUDES LONG-TERM INVESTMENTS
IN PROGRAMS THAT WILL ATTRACT
WORKERS.
CHANGING THE ENVIRONMENT AND
CULTURE IN NURSING HOMES,
FOCUSSING ON RESPECT AND
RECOGNITION, PROVIDING ADEQUATE
TRAINING AND SUPPORT WITH CAREER
ADVANCEMENT OPPORTUNITIES.
REFRAMING NURSING HOMEWORK AND
AGING AND REALLY DIGGING INTO
THE RECRUITMENT POOL STARTING
EARLIER THAN LATER SO THINKING
ABOUT STUDENTS THAT MIGHT BE IN
HIGH SCHOOL AS WELL.
HERE IN THE BOX IN THE BOTTOM
RIGHT ARE FINDINGS FROM
INTERVIEWS FROM PROVIDERS ASKING
THEM HOW THEY PROMOTE THE
WORKFORCE AND THEMES THAT
EMERGED WERE HIRING FOR
COMPASSION ENSURING THE
INDIVIDUAL INTERVIEWED IS
PASSIONATE ABOUT THE POSITION.
GOING BEYOND THE STATUS QUO.
NOT JUST A REGULAR INTERVIEW BUT
SEEING HOW THE INDIVIDUAL
INTERACTS WITH RESIDENTS WITH
DEMENTIA AND MAINTAINING
SUFFICIENT AND CONSISTENT
STAFFING.
A FOCUS ON DATA COLLECTION IS
HIGHLIGHTED IN THE REPORT.
WE NEED TO UNDERSTAND THE
SATISFACTION OF STAFF AND
DEMOGRAPHICS TO BETTER LEARN WHO
THE WORKERS ARE AND WHO THEY'RE
EXPERIENCING BASED ON THEIR
CHARACTERISTICS AND WE TALKED
ABOUT THE DATA SOURCES AND
NEEDS.
AND THE REPORT BRINGS UP THE
NEED TO SEE FAMILY CAREGIVERS AS
PART OF THE WORKFORCE AND
ALLOWING THEM TO REMAIN ENGAGED
WITH THE RESIDENT.
WE SAW THE CONSEQUENCES OF NOT
INCLUDING THE FAMILY CAREGIVERS
AS IMPORTANT CAREERS OF THOSE
WITH DEMENTIA.
WHAT ARE THE CONTINUED KNOWLEDGE
GAPS?
KNOWING THE STRATEGIES AND
PROGRAMS OUT THERE THAT CAN BE
LEVERAGED.
THERE'S A LOT OF PEOPLE DOING
GREAT THINGS BUT WE NEED TO KNOW
ABOUT THEM.
IN THE SAME VEIN, KNOWING WHAT
WORKS, MORE RESEARCH IS NEEDED
IN THE AREA ALONG WITH
UNDERSTANDING THE ASSOCIATION OF
TRAINING WITH OUTCOMES OF
RESIDENTS LIVING WITH DEMENTIA.
THERE'S ALSO A NEED TO
UNDERSTAND IN WHICH IMPROVING
WAGES IMPROVES RECRUITMENT AND
RETENTION AND NEEDS TO BE A
CENTRALIZED DATA SOURCE ON THE
WORKFORCE.
LOOKING FORWARD SOME OF THE
OPPORTUNITIES LIE IN MINIMUM
STAFFING STANDARDS.
LOTS OF WORK IS BEING DONE IN
THE AREA.
OPPORTUNITY FOR BETTER DATA
COLLECTION, IMPROVING PAY AND
TRAINING FOR THE DEMENTIA CARE
WORKFORCE.
PROVIDING TRAINING AND EDUCATION
AND CAREER ADVANCEMENT
OPPORTUNITIES AND MEASURING
EQUITY.
WITH THAT THANK YOU AND LOOK
FORWARD TO THE REMAINING REMARKS
AND THE Q&A SESSION.
>>THANK YOU, JASMINE.
THANK YOU ALL FOR THE
OPPORTUNITY TO PRESENT ABOUT THE
DIRECT CARE WORKFORCE IN
HOME-BASED DEMENTIA CARE.
OPPORTUNITIES TO IMPROVE CARE.
MY NAME IS JENNY RECKREY.
I'M A GERIATRICIAN WORKING IN
HOME-BASED PRIMARY CARE AND
RESEARCHER AT THE ICAHN SCHOOL
OF MEDICINE MOUNT SINAI IN NEW
YORK.
I RECEIVED CAREER DEVELOPMENT
AND PILOT FUND FROM THE NIA.
MY PRESENTATION IS GOING TO
FOCUS ON DEMENTIA CARE IN THE
HOME SETTING.
THERE'S GROWING INTEREST IN HOME
BASED CLINICAL AND LONG-TERM
CARE.
THIS FIGURE COMES FROM A 2014
INSTITUTE OF MEDICINE AND
NATIONAL RESEARCH COUNCIL
WORKSHOP CALLED THE FUTURE OF
HOME HEALTH CARE AND HIGHLIGHTS
THE WIDE RANGE OF SUPPORT THAT
PEOPLE RECEIVE IN THE HOME
SETTING WHICH INCLUDES CLINICAL
CARE, HOME BASED PRIMARY CARE
AND HOME HOSPICE AND LONG-TERM
CARE WHICH INCLUDES MEDICAID
FUNDED HOME AND COMMUNITY-BASED
SERVICES INCREASINGLY SHIFTING
FROM THE INSTITUTIONAL SETTING
TO THE HOME SETTING.
HOME-BASED MODELS OF CARE AND
SUPPORT ARE PARTICULARLY
IMPORTANT FOR PEOPLE WITH
DEMENTIA BECAUSE MUCH OF THIS
HOME BASED CARE NOW IS ACTUALLY
BEING DELIVERED TO PEOPLE WITH
DEMENTIA.
AROUND 44% OF OLDER ADULTS WITH
DEMENTIA LIVING IN THE COMMUNITY
USE SOME FORM OF HOME BASED
CLINICAL CARE, SKILLED HOME
HEALTH AND HOPE BASED MEDICAL
CARE VERSUS 14% OF OTHERS.
WHEN THEY RECEIVED HOME BASED
HEALTH THEY RECEIVE MORE
INTENSIVE ATTENTION.
AND ABOUT 64% THOSE PEOPLE HAVE
DEMENTIA.
EVIDENCE SUGGESTS THE GROWTH OF
THE HOME BASED MEDICAL WORKFORCE
HAS BEEN ONLY MODEST AND THE
NUMBER OF NURSES REPORTING HOME
HEALTH AS THEIR PRIMARY PRACTICE
SETTING HAS DECLINED BETWEEN
2013 AND 2020.
FREQUENTLY WHAT IT IS THAT HELPS
THAT PERSON WITH DEMENTIA LIVING
AT HOME STAY AT HOME SO THEY CAN
CONTINUE IS DIRECT CARE.
EVIDENCE FROM A NATIONAL
REPRESENTATIVE SAMPLE SUGGESTS
25%, A QUARTER OF PEOPLE WITH
DEMENTIA AND LIVING AT HOME OR
IN THE COMMUNITY RECEIVE PAID
DIRECT CARE.
WHEN YOU LOOK AT JUST THE GROUP
WHO ALSO HAS IMPAIRMENT AND
ABILITY TO PERFORM FUNCTIONAL
TASKS IT COMES TO 50%.
THE GRAPH DEMONSTRATE THE
MAGNITUDE OF THAT CARE.
PEOPLE WITH DEMENTIA WHO ALSO
HAVE FUNCTIONAL IMPAIRMENT WHO
PAID CARE ON AVERAGE RECEIVE 70
HOURS OF FAMILY CARE PER WEEK
AND DESPITE THE HIGH LEVELS OF
CARE THERE'S LITTLE EXISTING
RESEARCH ABOUT DIRECT CARE
WORKFORCE AT HOME IN GENERAL BUT
FOR PEOPLE WITH DEMENTIA IN
PARTICULAR AND THAT'S THE REASON
WHY I WANT TO FOCUS THE REST OF
MY PRESENTATION ON THE DIRECT
CARE WORKFORCE FOR PEOPLE LIVING
WITH DEMENTIA AT HOME.
SO I THINK THERE'S REALLY FOUR
KEY QUESTIONS THAT ARE ESSENTIAL
TO ADDRESS AS WE WORK TO BUILD
THIS EVIDENCE BASE.
WHAT DO DIRECT CARE WORKERS DO
AS THEY PROVIDER CARE FOR PEOPLE
WITH DEMENTIA AT HOME.
SECOND, WHAT CONSTITUTES HIGH
QUALITY DIRECT CARE WITH PEOPLE
WITH DEMENTIA AND HOW DO THEY
COLLABORATE WITH FAMILIES AND
HOW DO WORKERS COLLABORATE WITH
THE LARGER DEMENTIA CARE TEAM?
FOR EACH I'LL HIGHLIGHT WHAT THE
EXISTING RESEARCH TELLS US THEN
OUTLINE CONSIDERATIONS FOR
FUTURE WORK.
WHAT DO DIRECT CARE WORKERS DO?
WE KNOW THE FUNCTIONAL SUPPORT
IS THE BEGINNING.
DIRECT CARE WORKERS HELP
IDENTIFY MEDICAL ISSUES AND
ASSIST WITH CHRONIC DISEASE
MANAGEMENT AND SUPPORT THOSE
THEY CARE FOR.
WE ALSO KNOW AND WE KNOW DIRECT
CARE WORKER TRAINING IS LIMITED
AND DEMENTIA SPECIFIC TRAINING
IS EVEN MER LIMITED.
AS WE CONDUCT RESEARCH TO BETTER
UNDERSTAND WHAT DIRECT CARE
WORKER S ARE DOING IN THE HOME.
FIRST IT'S NOT ENOUGH TO KNOW
SOMEONE HAS DIRECT CARE, YES OR
NO.
BUT WE NEED TO THINK ABOUT HOW
MUCH DIRECT CARE AND DOES IT
MEET THE CARE NEEDS THEY HAVE.
SIMILARLY IT'S IMPORTANT TO
THINK OF DEMENTIA SPECIFIC CARE
IN A MORE NUANCED WAY AND HOW
THE NEEDS OF INDIVIDUALS WITH
DEMENTIA LIVING AT HOME MAY
CHANGE OVER TIME PARTICULARLY AS
DEMENTIA ADVANCES.
SECOND, WHAT IS QUALITY DIRECT
CARE IN THE HOME?
MEASURES FOR HOME AND
COMMUNITY-BASED SERVICES FOLK ON
STATE LEVEL QUALITY MARKERS BUT
DON'T GET AT WHAT QUALITY DAY TO
DAY DEMENTIA CARE LOOKS LIKE FOR
SOMEONE IN THE HOME.
IT'S IMPORTANT TO NOTE SOME OF
THE CHALLENGE IS CURRENT
OPPORTUNITIES FOR SUPERVISION IN
THE HOME SETTING ARE LIMITED AND
IN SOME WAYS DEMENTIA HOME CARE
IS A LITTLE BIT OF A BLACK BOX
MAKING MEASURING QUALITY
CHALLENGING.
A FEW THINGS TO CONSIDER AS WE
THINK OF QUALITY AND HOME-BASED
DEMENTIA CARE AND THE FIRST IS
WHO DEFINES DEMENTIA CARE AND
WHO DEFINES QUALITY?
PAYERS?
THE HOME CARE AGENCY SUPERVISING
WORKERS AND FAMILY CAREGIVERS
COLLABORATING ON THE CARE AND
RELATED ARE THERE SPECIFIC
ASPECTS OF THE DIRECT CARE
EXPERIENCE THAT MAY IMPACT CARE
RECIPIENT OUTCOME?
FACTORS LIKE THE CONTINUITY OF
AN INDIVIDUAL DIRECT CARE WORKER
PROVIDING CARE OR CONCORDANCE
BETWEEN WORKER AND RECIPIENT.
THESE GET AT NOT JUST IS THERE
DIRECT CARE BUT WHAT IS THE
DIRECT CARE LIKE AND SHOULD BE
CONSIDERED AS WE THINK OF WHAT
MAKES QUALITY DIRECT CARE.
THIRD IS COLLABORATION WITH
FAMILIES.
IT'S REALLY CLEAR FAMILY
CAREGIVERS NEED A STRONG DIRECT
CARE WORKFORCE.
THIS IS ONE OF THE FIRST
PRINCIPLES OF THE 2022 NATIONAL
STRATEGY TO SUPPORT FAMILY
CAREGIVERS.
AND WHILE IT'S NOT SIMPLE
SUBSTITUTION SO A DIRECT CARE
WORKER DOES NOT TAKE THE PLACE
OF A FAMILY CARE GIVING, WORKERS
CAN IMPACT THE FAMILY CAREGIVER
EXPERIENCE AND EVIDENCE SUGGESTS
IMPACTING CAREGIVER BURDEN AND
THE CAREGIVER'S ABILITY TO
WORKOUT SIDE THE HOME.
AS WE EXAMINE THE COLLABORATION,
I THINK IT'S IMPORTANT TO
CONSIDER THE SPECIFIC
CIRCUMSTANCES WHERE THAT
COLLABORATION MAY BE THE MOST
IMPORTANT.
I WANT TO HIGHLIGHT TWO QUICKLY.
ONE IS CONSUMER DIRECTED CARE.
THIS IS WHERE INDIVIDUALS WHO
RECEIVE MEDICAID FUNDED DIRECT
CARE CAN BASICALLY CHOOSE THEIR
CAREGIVERS AND HIGHER AND
SUPERVISE THE DIRECT CARE
PROVIDER RATHER THAN GOING
THROUGH A HOME CARE AGENCY.
THE SECOND SITUATION IS
SELF-PAY.
DIRECT CARE IS PAID FOR DIRECTLY
BY A PERSON WITH DEMENTIA OR
THEIR FAMILY EITHER THROUGH A
PRIVATE AGENCY OR MORE COMMONLY
THROUGH THE MARKET.
AND FAMILIES ENGAGE WITH DIRECT
CARE WORKERS AND THOSE NEED TO
BE EXPLORED.
AND COLLABORATION WITH THE TEAM.
EVIDENCE IS CLEAR DIRECT CARE
WORKERS ARE NOT WELL
COLLABORATED IN THE HOME CARE
SCENE AND FOR HEART FAILURE
CARE, FOR EXAMPLE BUT ALSO TRUE
FOR HOME BASED CLINICAL CARE
LIKE HOSPICE OR PRIMARY CARE.
WORK THAT WORKS TO EVALUATE OR
PROMOTE THE DIRECT CARE WORKER
ROLE WITHIN THE TEAM IS
ESSENTIAL.
AND A FEW THINGS TO CONSIDER.
FIRST IS THE NEED FOR ROLE
CLARITY.
I THINK WE THINK ABOUT DIRECT
CARE WORKERS IN THE HOME IN A
LOT OF WAYS.
SOMETIMES IT'S LIKE FAMILY.
BUT OTHER TIMES WE THINK OF
DIRECT CARE WORKERS AS THE EYES
AND EARS OF THE HEALTH CARE TEAM
AND SOMETIMES THE ROLES COULD BE
AT ODDS AND WE NEED TO BE CLEAR
HOW WE EXPECT AND WOULD LIKE
DIRECT CARE WORKERS TO
CONTRIBUTE TO THE LARGER TEAM.
AND SECOND ARE SPECIFIC SETTINGS
WHERE IT MAKES SENSE TO TARGET
WORKER AND TEAM COLLABORATION.
I WANT TO HIGHLIGHT IN
PARTICULAR THE DIRECT CARE
WORKERS ROLE IN SERIOUS ILLNESS
AND END OF LIFE AT CARE AT HOME.
THE PLACE OF DEATH FOR PEOPLE
WITH DEMENTIA IS MOVING FROM
INSTITUTIONS INTO THE HOME
SETTING.
BUT GOOD CARE FOR PEOPLE LIVING
WITH DEMENTIA AT THE END OF LIFE
TAKES A VILLAGE AND WE NEED TO
UNDERSTAND HOW DIRECT CARE
WORKERS FIT INTO THAT AND HOW
THEY CAN BEST CONTRIBUTE TO OVER
ALL CARE AT A TIME WHEN THE CARE
NEEDS ARE SO INTENSE.
SO IN CLOSING, DIRECT CARE
WORKERS REALLY ARE AN ESSENTIAL
PART OF HOME BASED DEMENTIA CARE
WORKFORCE AND I THINK THIS MEANS
WE NEED TO CONSIDER DIRECT CARE
WORKERS NOT JUST AS AN ABSTRACT
WORKFORCE THOUGH ISSUES RELATED
TO PAYMENT AND RECRUITMENT AND
RETENTION ARE IMPORTANT BUT WE
NEED TO THINK OF WORKERS IN
RELATION TO THE PEOPLE THEY CARE
FOR AND FAMILIES WHERE THEY
SHARE CARE AND CARE TEAMS PART
OF CARE AS WELL.
I THINK THIS APPROACH WILL HELP
DIRECT CARE WORKERS MEANINGFULLY
CONTRIBUTE TO THOSE NEEDING
SERVICES.
>>THANK YOU TO ALL OF OUR
SPEAKERS.
THOSE WERE GREAT PRESENTATIONS
AND COVERED THE RANGE OF
CONCERNS THAT EXIST AROUND THE
WORKFORCE AS WELL AS THE
RESEARCH GAP AND OPPORTUNITIES
WE HAVE TO DO BETTER WORK AND
UNDERSTAND MORE IN THE FUTURE.
SO THERE ARE THREE RESEARCH GAPS
AND OPPORTUNITIES THAT WE PRE
OPPOSED HERE.
FIRST TO DEVELOP DATA SYSTEMS
THAT WILL SUPPORT THE TRACK OF
WORKFORCE EDUCATION, TRAINING,
DIVERSITY, EXPERIENCE SKILLS AND
SATISFACTION AND SUPPORT DATA
LINKAGES SO THERE COULD BE
RESEARCH ON THE RELATIONSHIP
BETWEEN THE WORKFORCE AND
PERSON-CENTERED OUTCOMES FOR
PERSONS LIVING WITH DEMENTIA AND
THEIR CARE PARTNERS.
THE DIRECT CARE WORKFORCE SHOULD
BE INCLUDED IN ALL THE DATA SET
DEVELOPMENT BECAUSE THEY PLAY
SUCH IMPORTANT ROLES IN THE CARE
PROVIDED TO PEOPLE LIVING WITH
DEMENTIA SO THEY NEED TO BE
INCLUDED IN ALL THE DEVELOPMENT
RELATED TO THE WORKFORCE IN THIS
CARE AND THE RESEARCH SHOULD
FOCUS AND INCLUDE THEIR ROLES
AND CONTRIBUTIONS.
SECOND WE IDENTIFIED AS A
RESEARCH GAP AND AOPPORTUNITY
THE NEED TO IDENTIFY AND
EVALUATE NEW AND EXPANDING
INTERVENTIONS AND STRATEGIES TO
ADVANCE AND SUPPORT ALL MEMBERS
OF THE DEMENTIA CARE WORKFORCE
AT ALL PROFESSIONAL LEVELS
THROUGH PHYSICIANS AND
SPECIALIST PHYSICIANS TO SUPPORT
THE REPLICATION AND
DISSEMINATION OF THE APPROACHES
THAT ARE THE MOST SUCCESSFUL.
WE SEE A LOT OF PROMISING MODELS
OUT THERE.
OUR SPEAKERS HAVE TALKED ABOUT
PROMISING IMPROVEMENTS THAT
COULD BE MADE AND WE NEED TO
UNDERSTAND AND EVALUATE THOSE
USING RIGOROUS IMPLEMENTATION
SCIENCE AND EVALUATION
STRATEGIES SO WE CAN DO A GREAT
JOB OF PUTTING THE BEST
APPROACHES OUT TO SERVE MORE
PEOPLE LIVING WITH DEMENTIA.
AND THIRD WE IDENTIFIED AN
OPPORTUNITY AS DEVELOPING
MEASURES AND RESEARCH METHODS
THAT EXPLORE COLLABORATION AND
CARE PROVIDED BY TEAMS OF CARE
PROVIDERS THAT INCLUDE DIRECT
CARE WORKERS, CARE PARTNERS AND
PEOPLE LIVING WITH DEMENTIA TO
UNDERSTAND THE INTERACTIONS
BETWEEN THE GROUPS AND THE BEST
APPROACH TO ADVANCING THE
QUALITY OF PERSON-CENTERED CARE.
MANY OF THESE THEMES IN OUR
IDENTIFIED RESEARCH GAPS AND
OPPORTUNITIES AROUND THE
WORKFORCE INTERSECT WITH THE
OTHER GAPS AND OPPORTUNITIES
THAT WERE IDENTIFIED YESTERDAY
AND THE DAY BEFORE RELATED TO
DIFFERENT MODELS OF CARE
DIFFERENT WAYS OF DISSEMINATING
THE SUCCESSFUL MODELS OF CARE
AND DIFFERENT WAYS OF ENSURING
PEOPLE ARE BEST SUPPORTED
THROUGH A WORKFORCE THAT IS ALSO
WELL SUPPORTED IN ITS SKILLS,
KNOWLEDGE AND WORKING CONDITIONS
SO THEY CAN DO THEIR JOBS
BETTER.
I BELIEVE NOW WE CAN TURN TO OUR
TWO PANELIST.
WE'LL BEGIN WITH DAVID GRABOWSKI
FROM HARVARD UNIVERSITY FOR
COMMENTS AND TO MELISSA
MYERS-BRISTOL.
>>THANK YOU, DR. SPETZ AND
HELLO EVERYONE.
IT'S A GREAT HONOR TO BE HERE
AND REACT TO THIS ALL-STAR
PANEL.
I'M DAVID GRABOWSKI A PROFESSOR
AT HEALTH CARE POLICY AT HARVARD
MEDICAL SCHOOL.
I WANTED TO REFLECT ON SEVERAL
POINTS THE SPEAKERS RAISED.
A THOUGHT ALL THREE
PRESENTATIONS WERE EXCELLENT.
FIRST AND FOREMOST THE WORKFORCE
AS DR. FROGNER SAID IT'S NOT
EVEN A WORKFORCE.
IT'S SPREAD OUT AND QUITE
DIVERSE AND SPREAD OVER
DIFFERENT SETTINGS AND IN
PARTICULAR WE NEED TO SUPPORT
THE DEMENTIA WORKFORCE IN
NURSING HOMES AND OTHER
INSTITUTIONAL SETTINGS.
WE NEED TO SUPPORT THEM IN THE
HOME AND THEN WE NEED TO SUPPORT
THEM AS DR. RECKREY SAID
ALONGSIDE FAMILY.
AND I DON'T VIEW THOSE AS
COMPETING OBJECTIVES BUT RATHER
COMPLIMENTARY ONES.
WE NEED TO SUPPORT THE WORKFORCE
AS INDIVIDUALS NEED SERVICES
ACROSS THESE DIFFERENT SETTINGS.
AND LET'S INVEST ACROSS THE
SPECTRUM.
THE FIRST BIG POINT WE HEARD IN
THE PRESENTATIONS WAS ABOUT PAY
AND BENEFITS AND I BELIEVE THIS
IS NECESSARY BUT NOT SUFFICIENT
TO REALLY BUILDING A STRONG
WORKFORCE.
WE UNDER PAY AS WAS NOTED DURING
THE PRESENTATIONS ESPECIALLY
DR. TRAVERS.
WE UNDER PAY A LOT OF THE
WORKERS IN THE SECTOR.
BETTER PAY WILL BRING MORE
INDIVIDUALS INTO THE WORKFORCE
BUT IT'S NOT NECESSARILY ENOUGH.
AND THAT GOES TO THE SECOND
POINT DR. TRAVERS AND OTHERS
TALKED ABOUT.
THAT'S REALLY EMPOWERING THE
WORKFORCE MAKE BEING BETTER
JOBS.
IT'S MORE THAN PAY.
EMPOWERED WILL STAY IN THE
POSITIONS LONGER AND BE MORE
WILLING TO WORK IN THESE
SETTINGS.
WE'VE SEEN THIS IN THE BEST
MODELS FOR EXAMPLE IN THE
NURSING HOME SETTING.
THE GREENHOUSE MODEL WHERE THE
WORKING SITUATION'S MUCH LESS
HIERARCHICAL AND INVEST IN
CAREGIVERS AND GET BETTER
QUALITY FOR INDIVIDUALS WITH
DEMENTIA BUT GET A WORKFORCE
THAT'S HAPPIER.
THEY PAY THEIR WORKERS BETTER
TOO BUT ONCE AGAIN IT'S NOT JUST
THE PAY BUT THE WORKING
CONDITIONS AS WELL.
FINAL POINT I'LL MAKE AND IT
CAME OUT IN THE FIRST GOAL
DR. SPETZ MENTIONED, WE NEED
BETTER DATA.
WE'VE INVESTED IN RICH PAYROLL
BASED DATA IN THE NURSING HOME
SETTING BUT FLYING BLIND IN A
LOT OF THE OTHER PARTS OF THE
SYSTEM.
HOW DO WE GET A BETTER SENSE OF
NOT JUST WHO WORKS HERE BUT AS
DR. TRAVERS SAID MORE ABOUT
THEM.
THEY'RE DEMOGRAPHICS.
MORE BACKGROUND ON THIS
WORKFORCE ESPECIALLY THE
NON-NURSING HOME WORKFORCE.
WE HAVE A LOT OF LEFT TO LEARN.
WE TALKED ABOUT THIS.
I WAS ON THE NATIONAL ACADEMIES
COMMISSION WITH DR. TRAVERS AND
WE MADE THE RECOMMENDATIONS.
WE NEED TO FOLLOW THROUGH.
I'LL STOP THERE AND LOOK FORWARD
TO THE DISCUSSION.
>>THANK YOU, DAVID.
>>HI, EVERYONE.
GOOD MORNING.
I'M HONOR AND DELIGHTED TO BE
PART OF THIS EXTRAORDINARY
EVENT.
I'D LIKE TO CONGRATULATE THE
PRESENTER ON THE JOB WELL DONE
AND THE TOPIC AND CONVERSATION
DISCUSSED IN THE SESSION ARE
ESSENTIAL IN TODAY'S
ENVIRONMENT.
IN RESPONSE TO THE GROWING NEED
FOR A DEMENTIA SKILLED WORKFORCE
IT'S CRUCIAL MORE THAN EVER FOR
INVESTMENT AND COMMITMENT TO
PUBLIC HEALTH AND SOCIAL CARE
FOR PEOPLE LIVING WITH DEMENTIA
AND THEIR FAMILY CAREGIVERS.
TODAY'S PRESENTATION REMINDS US
THAT WE MUST DEVELOP A NATIONAL
PUBLIC HEALTH INITIATIVE TO
PROVIDE A DEMENTIA WORKFORCE
WITH THE CAPABILITY AND SKILL
SET TO DELIVER HIGH QUALITY
SERVICES TO SUPPORT THE GROWING
DEMENTIA POPULATION WHILE
EFFECTIVELY CONTENDING WITH THE
COMPLEX AND PROGRESSIVE IMPACT
OF DEMENTIA AT ALL LEVELS OF
SOCIETY.
WE ARE CONSTANTLY REMINDED THAT
PUBLIC POLICIES MUST BE
STRENGTHENED FOR HIRING,
TRAINING AND RETAINING THE
WORKFORCE IN HOME-BASED DEMENTIA
CARE TO PLAN THE SUPPLY OF
HEALTH AND PROFESSIONALS AND
WORKERS IS VIT FOR PUBLIC
FINANCING TO BE REORGANIZED TO
SUPPORT THE PROVISION AND
EXPANSION OF COMMUNITY-BASED
SERVICES FOR THE PERSONS LIVING
WITH DEMENTIA AND THOSE WHO ARE
HIRED TO SERVE THEM FOR WHOM
COVERAGE IS HARDLY OPTIONAL AND
VARIES IN FUNDING BY THE STATES.
IT IS ESSENTIAL FOR QUALITY
IMPROVEMENT, INSURANCE SYSTEM
AND METRICS FOR DEMENTIA CARE
AND SERVICES TO BE MATCHED TO
PRIORITIZE NEEDS OF THE
POPULATION.
AS STATED IN THE PRESENTATION
AND TO REASSURE OUR COMMITMENT
ACTIONS IN SEVERAL AREAS MUST BE
ADDRESSED INCLUDING RESEARCH
GAPS, OPPORTUNITIES THAT ARE
CONSTANTLY GROWING AND LAST BUT
NOT LEAST COMPETITIVE WAGES AND
BENEFIT OPTIONS.
EVERYONE MADE SOME VALID POINTS
AND I THINK MORE THAN EVER WE'RE
LEARNING NOW IN 2025 DATA HAS
SHOWN THE DEMENTIA CARE
POPULATION IS GOING TO GROW
SUBSTANTIALLY.
SO OBVIOUSLY THERE'S A GREAT
NEED FOR US TO PRIORITIZE AND
UNDERSTAND WHAT'S NEEDED TO BE
DONE TO ENSURE WE CAN CARE FOR
OUR CAREGIVERS AND OUR DEMENTIA
POPULATION AND THOSE WHO ARE
CONSTANTLY SUFFERING AND NEEDING
OUR HELP.
THANK YOU.
>>THANK YOU, MELISSA AND DAVID
FOR YOUR COMMENTS.
I BELIEVE NOW WE ARE MOVING TO
THE QUESTION AND ANSWER PART.
ALL OF OUR SPEAKERS AND
PANELISTS CAN COME BACK ON VIDEO
AND THEN WE CAN LOOK AT THE
VARIETY OF QUESTIONS THAT WE
HAVE COMING INTO THE Q&A BOX.
PLEASE USE THE Q&A BOX TO
PROVIDE YOUR QUESTIONS AND THEN
ALSO THERE IS A PATHWAY TO ASK
QUESTIONS FROM THE NIA WEB PAGE.
THE LINKS HAVE BEEN PROVIDED IN
THE CHAT BY NATIONAL INSTITUTE
ON AGING PEOPLE INVOLVED IN
COORDINATING THE EVENT.
I WILL TAKE THE SESSION
CO-MODERATOR'S PREROGATIVE AND
PUT A QUESTION OUT THERE ALSO
REFLECTIVE OF AT LEAST ONE
QUESTION THAT'S COMING FROM THE
Q&A.
AND THAT IS AROUND WHAT POLICIES
OR PROGRAMS THAT AFFECT THE
WORKFORCE MIGHT BE THE MOST
IMPORTANT TO PRIORITIZE FOR
RESEARCH?
I'LL START WITH BIANCA BECAUSE
SHE WAS OUR FIRST PRESENTER SO
WE'LL GET HER VOICE IN THE ROOM.
AND THIS IS A QUESTION I THINK
ALL OF OUR SPEAKERS AND
PANELISTS MIGHT HAVE THOUGHTS
AROUND AROUND POLICIES AND
PROGRAMS THE MOST IMPORTANT TO
STUDY FIRST.
>>THANK YOU FOR THE QUESTION
AND WHAT EXCELLENT
PRESENTATIONS.
THAT IS SUCH AN IMPORTANT
QUESTION AND SUCH A DIFFICULT
ONE BECAUSE I THINK A LOT OF IT
IS ASKING WHO'S PRIORITIES ARE
WE PRIORITIZING IN SOME WAYS.
I THINK THE HARD PART I CAN SEE
AS A RESEARCHER IN THE FIELD IS
THERE'S SO MANY WONDERFUL PILOTS
TAKING PLACE ACROSS THE COUNTRY.
IN SOME WAYS WE COULD FIRST
START WITH SOME BETTER BRINGING
TOGETHER OF WHAT THOSE PILOTS
ARE.
AND THEN THE RESULTS FROM THE
PILOTS.
I THINK OTHER GROUPS HAVE
CERTAINLY TRIED TO COMB THE
LITERATURE TO TRY TO TELL US
WHAT THE PUBLISHED LITERATURE
SAYS AND THERE'S PROGRAMS THAT
EXIST IN SETTINGS THAT HAVEN'T
BEEN EVALUATED BECAUSE WE DON'T
HAVE FUNDING TO DO THAT
EVALUATION.
IN SOME WAYS I WOULD LOVE TO SEE
A BETTER MORE COMPREHENSIVE
APPROACH TO IDENTIFY WHAT
PROGRAMS ARE WORKING ON THE
GROUND AND DO SOME BETTER
PULLING TOGETHER OF THAT WORK
FIRST.
THE OTHER PART IS DURING THE
PANDEMIC IN PARTICULAR THERE'S
BEEN EXPERIMENTATION AT THE
STATE LEVEL WITH MEDICAID AND
AWHAT STATES ARE DOING TO MAKE
MEDICAID MORE FLEXIBLE TO PAY
FOR LONG-TERM CARE.
I THINK WE CAN DO MORE TO
UNDERSTAND WHAT'S HAPPENING
THERE.
I'LL LET THE OTHER PANELISTS
CHIME IN.
>>I'LL HOP IN.
I AGREE WITH DR. FROGNER AND TO
ADD TO THAT IN THINKING WHAT
ORGANIZATIONS ARE DOING
SPECIFICALLY RELATED TO NURSING
HOMES, HOW DO WE INCREASE
PARTNERSHIPS WITH NURSING HOMES
ESPECIALLY WITH ACADEMIA.
WE HAVE THE ABILITY TO CONDUCT
THIS RESEARCH.
WE'RE ABLE TO IDENTIFY RESOURCES
TO BE ABLE TO CONDUCT THIS
RESEARCH.
HOW DO WE PARTNER WITH NURSING
HOMES THAT MAY NOT HAVE THE
RESOURCES OR THE INFORMATION OR
HOW-TO TO UNDERSTAND HOW WE
EVALUATE WHAT THEY'RE DOCK AND
WHAT THEY'RE DOING WELL
ESPECIALLY TO REALLY SUPPORT
THAT DISSEMINATION OF
INFORMATION.
SO ESPECIALLY FOR NURSING HOMES
WHO ARE LIKE AND STATES THAT ARE
DOING SOMETHING GREAT AND SEEING
GREAT RESULTS, THERE'S A LOT OF
SUCCESS BUT WE DON'T KNOW HOW TO
EVALUATE THIS AND COMMUNICATE
THIS.
HOW DO WE PARTNER WITH OTHERS
EQUIPPED TO DO SO TO GET THAT
INFORMATION OUT IS REALLY
IMPORTANT.
AND THEN SOME THOUGHTS AROUND
WHERE DO WE PUT PROGRAMS AND
STUDY FIRST AND WITH DR. FROGNER
THERE'S SO MUCH THAT NEEDS TO
HAPPEN AND DOESN'T NEED TO
HAPPEN IN ISOLATION PER SE BUT
DEFINITELY PROVIDING AND
SUPPORTING THE DIRECT CARE
WORKFORCE AND WHAT THAT LOOKS
LIKE IN THIS COMPREHENSIVE
SENSE.
SO IN MAKING SURE THEY ARE ABLE
TO LIVE ADEQUATELY WITH WHAT
THAT MEANS, THINKING ABOUT PAY
AND BENEFITS FOR EXAMPLE, THERE
ARE EMPOWERED AND SEEING WHAT IS
HELPING THIS DIRECT CARE
WORKFORCE LIVE IN THIS WAY THEY
HAD THE RESOURCES TO DO WHAT
THEY'RE DOING AND LOOK AT THE
PROGRAMS AND INITIATIVES.
>>DR. SPETZ, WE'VE HAD GOOD
NATURAL EXPERIMENTS I THINK TO
DR. FROGNER'S LAST POINT AND
MEDICAID AND HOW DO WE LEARN
FROM THOSE HOME BASED SERVICES
AND OPPORTUNITIES WITH IN FLEX
DOLLARS AND POINT STATES TO THE
RIGHT DIRECTION OF POLICY.
I'D BE EXCITED TO SEE ADDITIONAL
WORK THERE BECAUSE I THINK
THERE'S REAL OPPORTUNITY.
THANKS.
>>PAYING FOR A DIRECT CARE
WORKER AT HOME IS DIFFERENT THAN
MEDICAID.
THERE'S A LOT OF OPPORTUNITIES
TO THINK THROUGH HOW TO TALK
ABOUT THIS AND HOW TO ALLOW FOR
THAT COMPLEXITY AND TO DIVE IN
BECAUSE I THINK THAT COMPLEXITY
MAKES PEOPLE AVOID IT AND IT
TURNS INTO THIS THING NOBODY'S
REALLY TAKING ON.
I THINK HAVING A LARGER
CONVERSATION THAT DESPITE ALL
THE VARIABILITY AND HOW PROGRAMS
LOOK LIKE AND HOW HEALTH CARE IS
DELIVERED, UNDERSTANDING THE KEY
PIECES THAT TRANSCEND SETTING
AND INDIVIDUAL POLICIES OF THE
STATE I THINK IS IMPORTANT AND I
THINK THAT'S SOMETHING AS A
COLLECTIVE GROUP WE CAN DO AND
MORE OF A COLLECTIVE EFFORTS
RATHER THAN INDIVIDUAL PEOPLE
WORKING IN THEIR INDIVIDUAL
AREA.
AND THERE'S INFORMATION IN THE
CHAT FOR PEOPLE WHO HAVE THE
LIVED EXPERIENCE OF WORKING IN
DIFFERENT DIRECT CARE
ENVIRONMENTS.
ONE PERSON IN COMMON WAS
THINKING ABOUT THE DISTRIBUTION
OF FOLKS LIVING IN SETTINGS OF
ASSISTED LIVING FACILITIES AND
PRACTICAL NURSES TEND TO DO A
LOT OF THAT LIFTING.
I WANT TO ACKNOWLEDGE THAT AND
ANOTHER COMMENT THAT TALKS ABOUT
A LOT OF THE CHALLENGES AND
BARRIERS WE SEE AND HOW THEY MAY
BE SIMILAR IN CONTEXT AND OTHER
COUNTRIES AND IN COMPARISON TO
SIMILAR BARRIERS IN EUROPE.
ACKNOWLEDGING THE POINTS.
THERE'S A QUESTION ABOUT
SOLUTIONS RELATED TO MEDICAID
FUNDING YOU ALL KIND OF TOUCHED
ON AND IF WE HAVE TIME MAYBE
WE'LL COME BACK TO THAT.
I'LL ASK A SPECIFIC QUESTION
THAT HAS TO DO WITH DIRECT CARE
WORKERS AND FINANCIAL ABILITY
AND THE QUESTION IN THE CHAT
THAT HAS TO DO WITH INDIVIDUAL
REQUIREMENT SAVINGS PLANS.
I'M NOT SURE IF DR. GRABOWSKI OR
OTHERS WANT TO TALK ABOUT POLICY
OPTION TO SUPPLEMENT SOCIAL
SECURITY BENEFITS.
>>THERE'S OPPORTUNITIES TO MAKE
THIS A BETTER JOB THROUGH
THROUGH BENEFITS LIKE RETIREMENT
AND SAVINGS.
A PACKAGE.
I'D LIKE TO SEE REFORMS THAT
MAKE THIS A COMPETITIVE JOB
WHERE YOU'RE TREATED EQUALLY.
WHEN CANDIDATES LOOK AT THESE
POSITIONS IT'S APPLES TO APPLES
IN TERMS OF THE ACTUAL
COMPENSATION.
I'M SURE DR. FROGNER YOU
PROBABLY HAVE THOUGHTS ON THIS
AS WELL.
>>THE COMPETITION ASPECT IS
SOMETHING NOT TO BE UNDER
STATED.
THE COMPETITION FOR LONG-TERM
CARE WORKERS IS NOT JUST WITHIN
THE HEALTH CARE INDUSTRY.
THE HOSPITALS ARE A BIG
COMPETITOR AND THE OTHER
COMPETITORS ARE IN THE RETAIL
AND FOOD SERVICES BASE.
YOU'RE LOCAL WAL-MART, AMAZON,
BURGER KING, THEY COMPETE FOR
THE SAME POOL OF WORKERS BECAUSE
THERE'S LOW BARRIERS TO ENTRY.
THERE ISN'T YEARS OF INVESTMENT
IN YOUR EDUCATION AND SO
THEREFORE ONE CAN POTENTIALLY
SHIFT GEARS AND TAKE A JOB IN
ANOTHER SETTING.
NOT TO SAY PEOPLE IN THIS FIELD
AREN'T VERY DEDICATED PEOPLE AND
HAVE INCREDIBLE AMOUNT OF SKILLS
THEY'VE LEARNED ON THE JOB.
WE DON'T REWARD IT VERY WELL.
SO PEOPLE HAVE TO LOOK ELSEWHERE
SOMETIMES TO FIND THEIR REWARDS
SUCH AS HAVING PROMOTION
OPPORTUNITIES, CAREER PATHWAY
OPPORTUNITIES AND I THINK WE CAN
DO MORE TO SUPPORT CAREER
DEVELOPMENT FOR MANY OF OUR
HEALTH CARE WORKERS.
TAKING CARE OF PATIENTS WITH
DEMENTIA.
FOR EXAMPLE, HELPING TO TAKE
CARE OF TUITION IF THEY WANT TO
PURSUE TUITION.
IN WASHINGTON WE'RE TRYING OUT
AN APPRENTICESHIP PROGRAMS TO
HELP THEM BECOME A LICENSED
NURSING.
IT DOES TAKE SOME POLITICAL WILL
AND PARTNERSHIPS WITHIN A STATE
HAVING LEADERS IN THE STATE AND
HAVING PARTNERSHIPS WITH THE
WORKFORCE EDUCATION AND TRAINING
BOARDS THAT MAY BE EXISTING IN
EVERY STATE TO THINK ABOUT HOW
DO WE CREATE MORE CAREER
DEVELOPMENT.
I'M SURE DR. RECKREY AND TRAVERS
HAVE OTHER THOUGHTS IN THEIR
SPACES.
>>I'D LIKE TO CHIME IN A LITTLE
BIT BECAUSE I DO KNOW BECAUSE I
WORK IN NEW YORK AND CURRENTLY
LIVE IN GEORGIA AND THERE'S A
VAST DIFFERENCE BASED ON WHERE
YOU LIVE.
ONE IS MEDICAID ACCESS AND IN
DIFFERENT STATES CAN CAUSE THE
TRAINING AND PAYMENT TO BE
DIFFERENT AND WAGES AND BENEFITS
AND THAT'S SOMETHING THAT WE
NEED TO CONSIDER AND WE NEED TO
KIND OF LOOK AT IT ON A NATIONAL
LEVEL BECAUSE I DO AGREE WITH
EVERYONE BUT THIS NEEDS TO BE
DONE ON A NATIONAL LEVEL SO THEY
CAN UNDERSTAND THAT MEDICAID
ACCESS DOES DRIVE THE BENEFIT OF
WAGE PER STATE WHICH IS
IMPACTING.
SOME CNA OR SOME DIRECTOR WOKKER
WILL GO TO ONE STATE TO ANOTHER
BECAUSE THE PAY IS BETTER.
IT'S IMPACTING EVERYWHERE.
IT'S SOMETHING THEY NEED TO
ADDRESS ON THE STATE AND
NATIONAL LEVEL.
>>THANK YOU VERY MUCH EVERYBODY
FOR ANSWERING THE QUESTION.
WE NOW HAVE MICHAEL ELLENBOGGEN
HAS A QUESTION HE WOULD LIKE TO
ASK.
YOU CAN UNMUTE HIM TO ASK HIS
QUESTION.
>>MY NAME IS MICHAEL
ELLENBOGGEN AND I APPRECIATE YOU
TALKING ABOUT THE WORKFORCE
HAVING SALARY PROBLEMS WHICH IS
DEFINITELY A REAL CONCERN.
HOW CAN YOU GET PEOPLE TO WORK
AT SUCH LOW SALARIES AND EXPECT
THEM TO BE GOOD.
THEN AGAIN YOU ALSO HAVE AN
ISSUE MORE IMPORTANT WE HAVE TO
THINK ABOUT IS BESIDES THE
WORKFORCE NOT HAVING ENOUGH
PEOPLE THERE BUT WE ASSUME
PEOPLE WHO ARE CARING FOR THESE
PEOPLE ARE EDUCATED TO WORK WITH
PEOPLE WHO ARE LIVING WITH
DEMENTIA.
I HAVE TO TELL YOU IT MIGHT WORK
FOR ALL THE OTHER DISEASES OUT
THERE TO HAVE STAFF BUT WHEN IT
COMES TO DEMENTIA WE NEED
SPECIAL TRAINING.
I SEE THAT ACROSS THE BOARD AND
NOT ONLY ME BUT THE FOLKS COMING
TO WORK IN THE WORKFORCES DO NOT
HAVE THE REQUIRED EDUCATION
NEEDED TO WORK WITH PEOPLE WITH
DEMENTIA.
IT TAKES A SPECIAL SKILL SET AND
IT'S NOT ONLY THAT YOU HAVE THE
PEOPLE OUT THERE WHO ARE TRYING
TO EDUCATE PEOPLE BUT EVEN IN
THE TRAINING PROCESS COMING OUT
OF SCHOOLS.
THEY ARE NOT TRAINED WELL TO BE
ABLE TO HANDLE THESE PEOPLE.
I THINK WE HAVE TO LOOK AT OTHER
ASPECTS HOW WE FILL THE GAPS
BECAUSE THEY'RE REALLY IMPORTANT
GAPS.
>>THANK YOU, MICHAEL FOR YOUR
IMPORTANT COMMENT.
AND ABOUT TRAINING SPECIFICALLY
RELATED TO TO WORKING WITH THOSE
LIVING WITH DEMENTIA AND OTHER
COGNITIVE CHALLENGES.
THANK YOU SO MUCH.
WE HAVE A QUESTION/COMMENT IN
THE CHAT I'LL READ ALOUD TALKING
ABOUT ANOTHER IMPORTANT ASPECT
OF THE WORKFORCE IS THE NUMBER
OF WOMEN AND PEOPLE OF COLOR
INCLUDING IMMIGRANTS IN THE
WORKFORCE.
IT SEEMS THERE'S
INTERSECTIONALITY IN DISPARATE
PAY AND COULD THE PANEL MEMBERS
COMMENT ON ANY WORK ADDRESSING
THE DISPARITIES THE GROUP MAY
FACE IN TERMS OF EMPLOYMENT,
FUTURE OPPORTUNITIES AND
FINANCIAL STATUS?
ANYBODY CAN GO AHEAD AND ANSWER
FIRST.
THANKS.
>>WE JUST RELEASED A PAPER ON
THE NURSING HOME WORKFORCE AND
AT A HIGH LEVEL WE FOUND
IMMIGRANT INCREASE THE NUMBER OF
NURSING HOMEWORKERS AND LEAD TO
IMPROVED QUALITY OF CARE.
THAT'S ENCOURAGING.
I THINK IMMIGRANTS ARE AN
IMPORTANT PART OF THE WORKFORCE
BUT THE CONCERN IS THEY CREATE
THE TWO-TIERED SYSTEM.
THAT'S UNACCEPTABLE.
NOBODY IS ARGUING IMMIGRANTS
SHOULD BE A LOWER-COST
SUBSTITUTE.
WE NEED TO RAISE WAGES AND
BENEFITS FOR EVERYONE.
WE JUST NEED MORE BODIES AND
ENFORCING ON THE GROUND ALL THE
POLICIES THAT HAVE COME UP
DURING THE SESSION NEED TO BE IN
PLACE BECAUSE WITHOUT THAT YOU
DO HAVE THIS TWO-TIERED SYSTEM
AND ONCE AGAIN THAT'S NOT WHAT
ANY OF US WANT.
WE WANT IMMIGRANT ARE SOME OF
OUR BEST WORKERS.
PLEASE DO NOT -- THE TAKEAWAY IS
NOT THEY'RE LOWER COST
SUBSTITUTE BY ANY STRETCH.
>>I THINK IT'S IMPORTANT TO
RECOGNIZE AND ACKNOWLEDGE THE
ROLE OF IMMIGRANTS IN OUR HEALTH
CARE WORKFORCE.
WE HAVE TO LOOK AT OUR POLICIES
AND SUPPORT WHAT'S HAPPENING TO
THIS WORKFORCE.
WE LEVERS WITHIN HEALTH CARE
WORKING WITH THE MEDICAID
REIMBURSEMENT SYSTEM AND MAKING
SURE THOSE ARE COMPREHENSIVE AND
SUPPORTIVE OF FAMILIES AND HAVE
TO LOOK AT OTHER SOCIAL POLICIES
BEING DISCUSSED SUCH AS
CHILDCARE POLICIES.
SOMETHING THAT HAS BEEN
MENTIONED A COUPLE TIMES IS THAT
THIS WORKFORCE TENDS TO BE
PREDOMINANTLY WOMEN AND MANY OF
THE PEOPLE CARING FOR PATIENTS
LIVING WITH DEMENTIA CARE FOR
CHURCH AT HOME.
WE HAVE TO MAKE SURE WE PROVIDE
GOOD SUPPORTIVE CHILDCARE
BENEFITS AND THAT GAP EXISTS IN
TERMS OF ACCESS TO AFFORDABLE
CHILDCARE ACROSS THE SOCIO
ECONOMIC SPECTRUM.
WE HAVE TO THINK OF THE
INSURANCE PIECE.
WE HAVE HAD POLICIES TO ENSURE
HAVE COVERAGE AND LOOK AT THE
DISPARITIES THAT ALREADY EXIST
AND APPLY THEM TO THE SAME
WORKFORCE RECOGNIZING MANY OF
OUR WEEKWORKERS LIVING WITH
DEMENTIA STRUGGLE WITH THE SAME
ISSUES OTHERS DO IN OUR COUNTRY.
>>I'LL ADD IN MORE THOUGH WE
SEE LOW PAY AMONG THE DIRECT
CARE WORKFORCE WE SEE LOW PAY
AMONG PEOPLE OF COLOR AND
DIFFERENCES IN SHIFT FOR EXAMPLE
A PAPER MYSELF AND DR. GRABOWSKI
WERE ON FOUND FEWER VACCINATIONS
AND TESTING AMONG STAFF THAT
WORKED THE NIGHT SHIFT COMPARED
TO OTHER SHIFT.
WHEN THINKING ABOUT REQUIREMENT
FOR VACCINATION OR TESTING
WITHIN NURSING HOME SETTINGS AND
WHERE THE GAPS MIGHT BE THERE
MAY NOT BE ENOUGH EDUCATION
OPPORTUNITIES WITHIN THE NIGHT
SHIFT COMPARED TO THE DAY SHIFT
AND SEE THE CONSEQUENCES OF NOT
HAVING ADEQUATE SUPPORT STAFF
AMONG THE NIGHT SHIFT AND WHO IS
LIKELY TO BE ON THE NIGHT SHIFT
AND PEOPLE OF COLOR AND SEE THE
UNINTENDED CONSEQUENCES OF THAT.
WE'VE SEEP WORK WHERE DIRECT
CARE STAFF SAY IF IT'S MAJORITY
OF PEOPLE OF COLOR WORKING YOU
SEE SHORTER STAFF AND THE STAFF
IS SHORTER THAN IF IT WERE
PRIMARILY NON PEOPLE OF COLOR
AND SEE SYSTEMIC RACISM WHERE WE
SEE THE DISPARITIES.
SOME THINGS WE'RE SEEING COMING
OUT THE RECOMMENDATIONS FROM THE
NASEM REPORT CALLED FOR
DIVERSITY, EQUITY AND INCLUSIVE
TRAINING AND HOW IT AFFECTS
WORKERS OF ALL RACES AND
ETHNICITIES AND CALL FOR A
MEASURE TO UNDERSTAND HOW
WHATEVER EFFORTS THEY'RE
IMPLEMENTING HOW THEY'RE
CHANGING THE INEQUITIES WE ARE
SEEING.
WE TALKED ABOUT DATA AND IF WE
DON'T HAVE DEMOGRAPHICS BY
GENDER AND RACE ETHNICITY AND
HOW DO WE ARE ABLE TO UNDERSTAND
ON A NATIONAL LEVEL WHAT'S GOING
ON AND WHAT CHANGES ARE
HAPPENING AND LAST THING I'LL
BRING UP ARP AND THINKING OF
HOME AND COMMUNITY SETTING AND
THE NURSING HOME SETTING THEY
HAVE A LONG-TERM SERVICES AND
SUPPORT SCORECARD THAT LOOKS AT
INDICATE WITHIN THE HOME AND
COMMUNITY-BASED AND NURSING HOME
SETTING THAT REFLECTS QUALITY OF
CARE FOR OLDER ADULTS AND
INCLUDES EQUITY AND FOCUS ON THE
WORKFORCE TOO.
THERE WILL BE A MEASURE RELATED
TO WORKFORCE AND EQUITY SO
STATES CAN SEE HOW THEY'RE
FARING AND CHANGING ACROSS YEARS
WITH REGARDS TO EQUITY AND THEIR
WORKFORCE.
I WANTED TO ECHO ONE THING THAT
WAS AN IMPORTANT PART DURING THE
PRESENTATION AND CAME UP IN THE
QUESTION.
THE QUESTION OF VALUE AND
RESPECT HOW DO WE VALUE IT AND
SEE IT AS ESSENTIAL?
IT'S EASY TO REPLICATE THIS AND
IN ADDITION TO POLICIES AND
DIRECT THINGS TO SUPPORT I THINK
WE NEED TO STEP BACK AND HOW DO
WE THINK ABOUT CARE WHETHER IT'S
FAMILY CAREGIVERS OR DIRECT CARE
WORKERS?
HOW DO WE FRAME THE IMPORTANCE
OF THE CARE FOR PEOPLE WITH
DEMENTIA AND ELEVATE THIS AS A
ROLE THAT'S ESSENTIAL RATHER
THAN AN AFTER THOUGHT AFTER
MEDICAL NEEDS ARE TAKEN CARE OF.
>>I HAVE A QUESTION I'D LOVE TO
HEAR THE PANEL'S THOUGHTS OF ON
SOCIAL WORK IN SERVING NEEDS OF
PEOPLE LIVING WITH DEMENTIA AND
THEIR CARE PARTNERS.
MANY SOCIAL WORKERS AND
COMMUNITY HEALTH WORKERS ARE NOT
FORMALLY EMBEDDED WITHIN HEALTH
SYSTEMS.
SOME MIGHT BE IN PRIVATE
PRACTICE AND IN COMMUNITY-BASED
ORGANIZATIONS SOMEWHAT DISTINCT
FROM THE HEALTH CARE SYSTEM.
I WONDER YOUR THOUGHTS HOW TO
BRIDGE THAT WORKFORCE INTO THE
OVER ALL SUPPORT OF SUPPORTING
PEOPLE WITH DEMENTIA.
>>AS MICHAEL STATED EARLIER I
CAN HEAR HIS PASSION IN HIS
VOICE AND THAT'S A CONCERN FOR
ALL OF US THAT MOST PEOPLE
SERVING DEMENTIA PATIENTS ARE
NOT PROPERLY TRAINED AND AS MUCH
AS WE ADVOCATE FOR PEOPLE
SOMETIMES THEY HIRE PEOPLE NOT
TRAINED BECAUSE THEY NEED A BODY
IN THE BUILDING.
I DO UNDERSTAND I SEE THE ISSUE
WHERE IT NEEDS TO BE ADDRESSED
FOR THE CARE FOR DEMENTIA
PATIENT AS WE STATED EARLIER
BEING A SOCIAL WORKER YOU'RE
TRAINED ON A HIGH LEVEL.
AND THEREFORE SERVING ON A HIGH
LEVEL MAY NOT BE THE SAME UNIQUE
SERVICE THAT SOM SOMEONE WHO HAS
DEMENTIA NEEDS.
THERE'S A GAP IN THAT AND I KNOW
THEY'RE DOING AS BEST THEY CAN
TO SERVE THAT POPULATION BUT
FAMILY STRUGGLES WITH HOW DO WE
BRIDGE THE GAP BETWEEN CARE FOR
LOVED ONES AND CONTINUING TO
LIVE A HEALTHY LIFE AND A SOCIAL
WORKER CAN HELP WITH TIMES BUT
THEY STRUGGLE BECAUSE OF THE
SKILL SET IS NOT UNIQUE.
WE KNOW THERE'S SPECIFIC
PROGRAMS AVAILABLE JUST FOR
PEOPLE WHO WANT TO SERVE
DEMENTIA PATIENTS BUT IT CAN
CAUSE AN ISSUE WITH THAT.
>>THANK YOU, MELISSA.
I'LL ADD ONE COMMENT AND GIVE
THE FINAL QUESTION AND
ACKNOWLEDGE THE KNOWLEDGE IN
CHAT ABOUT APPROPRIATE TRAINING.
THAT DISCUSSION HAS BEEN HAD AND
ACKNOWLEDGING THE ADDITIONAL
POINT OF NOT MAKING ANOTHER TIME
PRESSURE FOR STRESSED WORKERS.
THAT CHALLENGE REMAINS AND
CONTINUES BOTH THE NEED FOR
TRAINING AND BALANCING THAT WITH
NOT OVER LOADING THOSE WHO MIGHT
RECEIVE TRAINING.
FOR OUR FINAL QUESTION IN THE
CHAT ONE SAYS IN SOME AREAS THE
PRICE OF CAREGIVERS THROUGH
AGENCIES EXCEEDS $30 PER HOUR.
WITH A THIRD OF THAT GOING TO
THE AGENCY.
THIS IS FAR OUT OF RANGE FOR ALL
EXCEPT EXTREMELY WEALTHY.
WHAT CAN BE DONE IN THE SHORT
TERM TO MAKE THE NEEDED CARE
AFFORDABLE?
ANYBODY CAN RESPOND.
>>THAT'S A DIFFICULT QUESTION.
THERE'S ATTENTION TO AGENCIES IN
LIGHT OF THE TRAVEL NURSING
CONVERSATIONS MANY PROBABLY READ
ABOUT.
IT'S HARD TO KNOW IF IT'S A
LONG-TERM GAME OR NOT.
PROBABLY SOMETHING WE NEED MORE
REGULATORS TO PROVIDE OVERSIGHT.
I BELIEVE THE GAO HAS A STUDY OR
I THINK BILL TO CALL GAO TO
POTENTIALLY STUDY THE ROLE OF
AGENCIES ESPECIALLY DURING THE
PANDEMIC.
I THINK THERE'S AN OPPORTUNITY
TO BETTER UNDERSTAND THAT.
THIS GOES BACK TO DATA.
A LOT OF WE AS RESEARCHERS ARE
BLIND TO THE FINANCIAL
TRANSACTIONS TAKING PLACE BEHIND
THE PAYMENT OF WORKERS.
I THINK DR. GRABOWSKI AND
DR. TRAVERS HAVE DONE A LOT OF
GREAT WORK WITH AVAILABLE DATA
MEDICARE PUT OUT THAT'S PUBLICLY
AVAILABLE TO TRACK WHAT WE KNOW
ABOUT THE WORKFORCE.
WE'RE FLYING BLIND WHEN IT COMES
TO THE DATA.
IT MAKES IT HARD TO MAKE SOLID
STATEMENTS HOW BIG OF A PROBLEM
THIS IS AND MAKE THIS AN
ARGUMENT.
WE NEED BETTER TRANSPARENCY AT
THAT LEVEL.
>>THANK YOU FOR ENDING US ON
THE COMMENT ABOUT MORE AND
BETTER DATA TO ENHANCE THE
RESEARCH ENTERPRISE.
THANK YOU FOR YOUR TIME AND
WONDERFUL DISCUSSION AND I'LL
TURN THINGS BACK TO ANDREA.
THANK YOU.
>>WONDERFUL.
THANK YOU ALL SO MUCH FOR A
REBUST DISCUSSION STIMULATED
FROM QUESTIONS FROM THE
AUDIENCE.
WE'LL TRANSITION TO A 35-MINUTE
BREAK AND RESUME AT 1:00 P.M.
EASTERN STANDARD TIME FOR OUR
NEXT SESSION THAT'S GOING TO
DIVE INTO MORE DETAILED ECONOMIC
IMPACTS AND APPROACHES.
ADDITIONALLY I WOULD LIKE TO
REMIND EVERYONE PARTICIPATING IF
YOU HAVE QUESTIONS YOU WERE
UNABLE TO ASK OVER THE COURSE OF
THE THREE DAYS OF THE SUMMIT OR
IF YOU HAVE INPUT TO SHARE WITH
SUMMIT PLANNERS AND THE NIA
YOU'RE INVITED TO JOIN US AT
4:00 P.M. EASTERN STANDARD TIME
TODAY FOR A POST-SUMMIT
LISTENING SESSION AND WE
ESPECIALLY ENCOURAGE THOSE
LIVING WITH COGNITIVE SYMPTOMS
AND/OR CARE PARTNERS AND
CAREGIVERS TO JOIN US.
WE LOOK FORWARD TO HEARING YOUR
QUESTIONS AND FEEDBACK AT THAT
TIME IF YOU DO JOIN.
SEE YOU ALL IN 35 MINUTES.
>>WELCOME BACK.
I'M JULIE ZISSIMOPOULOS WITH
ANDREA GILMORE-BYKOVSKYI AND
I'LL INVITE CO-CHAIRS OF SESSION
7 PEI-JUNG LIN AND PRISCILLA
NOVAK.
>>I'M A PROGRAM OFFICIAL WITH
THE NATIONAL INSTITUTE ON AGING.
15 YEARS AGO I WAS A HOME HEALTH
AID WITH MULTIPLE JOBS.
EVERY DAY WITH MY ALZHEIMER'S
PATIENTS START THE STATEMENT.
I KNOCK ON THE DOOR AND SAY
HELLO, I'M PRISCILLA AND HERE TO
HELP MY PATIENT HAS HER NAME
CHANGED BUT HAS SIMILAR ISSUES
OF ALZHEIMER'S DISEASE AND
RELATED DEMENTIAS.
MISS THOMAS LIVED ALONE ON A
BEAUTIFUL DOUBLE LOT.
SHE LIVED IN THE SAME HOUSE OVER
50 YEARS AND HAD ALWAYS BEEN
KNOWN FOR HER HONEST WAYS AND
KIND HEART.
LIKE MANY PEOPLE HER PATH TO
DEMENTIA DIAGNOSIS HAD BEEN
THROUGH FINANCIAL FRAUD.
ONE DAY MISS THOMAS RECEIVED A
LETTER THAT ONE OF HER OAK TREES
WAS DISEASED AND NEEDED TO BE
REMOVED AND SENT A CHECK FOR
$50,000.
THE DAY THE COMPANY CAME TO TAKE
DOWN THE TREE MISS THOMAS NOT
HER REAL NAME, CALLED HER
NEAREST RELATIVE, NIECE IN
DISTRESS.
SHE HAD NO RECOLLECTION OF
REMOVAL OF ANY TREES.
HER NIECE ASKED HER TO EXPLAIN
BUT TRY AS SHE MIGHT, SHE COULD
NOT EXPLAIN.
THE NEXT DAY THE NIECE WAS ON
THE PHONE WITH THE BANK AND
LEARNED THE EXORBITANT PRICE SHE
PAID.
MANY FAMILIES ON THE SESSION OF
ECONOMIC IMPACT OF ALZHEIMER'S
DISEASE HAVE SIMILAR STORIES TO
HEL.
THE ECONOMIC IMPACT OF
ALZHEIMER'S DISEASE RANKS FROM
FRAUD TO INABILITY TO AFFORD
NEEDED CARE.
TODAY WE HAVE AN ESTEEMED PANEL
WHO WILL BE DISCUSSING THE
IMPACT OF DEMENTIA ON FAMILIES
AND THE HEALTH CARE SYSTEM AND
OPPORTUNITIES TO ALLEVIATE
ECONOMIC BURDEN AND WE'LL
CONSIDER THE SYSTEM TO IMPROVE
COORDINATION AND OUTCOMES AND
REDUCE COST.
WE'LL ALSO ADDRESS NOVEL
APPROACHES TO THE INNOVATIONS IN
DEMENTIA CARE AND TREATMENT AND
THE IMPACT OF DEMENTIA ON HEALTH
CARE AND ECONOMIC DECISION
MAKING.
JOIN ME IN WELCOMING OUR FIRST
SPEAKER, DR. DUKE HAN.
THANK YOU FOR THAT INTRODUCTION
DR. NOVAK.
I'M A CLINICAL NURSE
PSYCHOLOGIST AND A PROFESSOR AT
THE UNIVERSITY OF SOUTHERN
CALIFORNIA.
I HAVE THE PRIVILEGE OF SHARING
THOUGHTS ABOUT FINANCIAL
DECISION MAKING AND COGNITIVE
DECLINE AND ALZHEIMER'S DISEASE.
I WANTED TO START WITH A BRIEF
ANECDOTE.
ONE OF THE REASONS I BECAME
INTERESTED IN THIS TOPIC WAS
EXPERIENCES IN CLINIC.
I OFTEN SEE OLDER ADULTS WHERE
THERE WAS A PRESUMPTION OF EARLY
DEMENTIA FOR ASSESSMENT IN MY
ROLE AS A CLINICAL NEURAL
PSYCHOLOGIST AND REMEMBER A
STRING OF PATIENTS I SAW ONE
AFTER THE OTHER WHERE IT WAS
PRESUMED THE PATIENT ACTUALLY
HAD EARLY DEMENTIA BECAUSE IT
WAS DISCOVERED THAT THAT PATIENT
WAS MAKING POOR FINANCIAL
DECISIONS.
I REMEMBER THIS VIVIDLY PATIENT
AFTER PATIENT DOCK HOURS OF
TESTING SOMETIMES FOUR, SIX
HOURS OF COGNITIVE TESTING AND
FINDING THAT PATIENT TO BE
COMPLETELY COGNITIVELY IN FACT
ACTUALLY.
CLEARLY THERE WAS A CHANGE IN
BEHAVIOR.
A CHANGE IN FINANCIAL DECISION
MAKING BEHAVIOR BUT OUR
COGNITIVE TESTS WERE NOT PICK UP
ON THIS.
AS A NEURO PSYCHOLOGIST I WAS
INTERESTED IN THE MISMATCH AND
WHAT WE WERE ASSESSING AND WHAT
WE WERE SEEING.
SO IN TERMS OF BACKGROUND WHAT
YOU MAY OR MAY NOT KNOW IS OLDER
ADULTS OVER THE AGE OF 65 HOLD A
THIRD OF THE NATION'S WEALTH.
THIS IS ALL OLDER ADULTS IN THE
UNITED STATES.
A PORTION OF OLDER ADULTS BECOME
THE VICTIM OF SCAM OR FRAUD AS
WE HEARD DURING THE
INTRODUCTION.
AND FINANCIAL EXPLOITATION IS
SUCH AN ISSUE THE FBI MAINTAINS
A WEBSITE DEVOTED JUST TO THAT
TOPIC.
AND SO THIS MAY BE
UNDERSTANDABLE TO A CERTAIN
EXTENT BECAUSE WE KNOW AS WE
GROW OLDER OUR BRAINS WILL
CHANGE AND SO WE WILL LOSE SOME
ASPECT OF OUR BRAIN.
THESE ARE THE BRAIN REGIONS IN
YELLOW IN THE UPPER LEFT AND
WHAT THAT CORRESPONDING LOSS OF
BRAIN SO DO WE LOSE SOME
COGNITIVE ABILITY AND AGAIN THIS
IS NORMAL AGING.
IN THE CONTEXT OF DEMENTIA YOU
CAN IMAGINE IT'S QUITE
PRONOUNCED.
ONE TAKEAWAY FROM THIS BODY OF
WORK YOU CAN TAKE IS THAT AS WE
DEVELOP COGNITIVE IMPAIRMENT AS
WE GROW OLDER IT COULD BE WE
MAKE POORER FINANCIAL AND HEALTH
DECISIONS.
SO WE ACTUALLY TESTED THIS.
I WAS A PART OF OF THE RUSH
ALZHEIMER'S DISEASE CENTER AND
THEY DID MAKE POORER FINANCIAL
AND HEALTH DECISIONS ON THE
DECISION MAKING MEASURE.
SO I THINK IT'S SAFE TO SAY THAT
AS WE GROW OLDER AND WE MIGHT
HAVE SOME COGNITIVE IMPAIRMENT
WE MIGHT MAKE NOT AS GOOD
FINANCIAL AND HEALTH DECISIONS.
HOWEVER, I WANTED TO ALSO MAKE
THE POINT IT'S NOT JUST ABOUT
WHAT WE TYPICALLY CALL COGNITIVE
ABILITY.
I OPEN MY TALK WITH THIS EXAMPLE
OF PATIENTS WE'RE SEEING WHERE
WE COULDN'T REALLY SEE COGNITIVE
IMPAIRMENT BUT THERE WAS A CLEAR
CHANGE IN DECISION-MAKING
BEHAVIOR.
WE WANTED TO LOOK AT THIS AND WE
DID AND A GROUP OF OLDER ADULTS
OUTDEMENTIA OVER 600 OLDER
ADULTS WITH THE HYPOTHESIS A
PORTION WOULD SHOW A DIFFERENCE
BETWEEN DECISION MAKING AND
COGNITIVE ABILITY.
SO WHAT YOU SEE HERE ARE THE
RESULTS.
THESE ARE INDIVIDUALS HERE.
YOU SEE A LOT OF BLUE WHERE AN
OLDER ADULT IS SHOWING DECISION
MAKING ABILITY WITHIN THEIR
COGNITIVE ABILITY RANGE.
WE DID SEE A LOT OF GREEN YOU
CAN SEE AND WHAT WE
HYPOTHESIZED.
THE CASES I WAS SEEING THAT I
SHARED AT THE BEGINNING OF MY
TALK AND WHAT'S INTERESTING IS
WE ALSO SAW A LOT OF RED
EXAMPLES AND THESE ARE
INDIVIDUALS THAT SHOWED BETTER
DECISION MAKING RELATIVE TO THE
COGNITIVE ABILITY.
SO WHEN AN OLDER ADULT BECOMES
THE VICTIM OF SCAM OR FRAUD OR
SHOWS POORER FINANCIAL DECISION
MAKING THE IMPACT IS DISPLACED
ON LOTS OF PEOPLE, FAMILY
MEMBERS, CAREGIVERS, ULTIMATELY
COMMUNITIES AND SOCIETY.
BUT HOW CAN WE UNDERSTAND THIS?
IT'S SUCH A COMPLEX TOPIC AND SO
ONE WAY AMONG OTHERS THAT WE'VE
BEEN TRYING TO USE IS TO LOOK AT
THE BRAINS OF OLDER AS USING
NEURO IMAGING AND IT'S HIGHLY
COLLABORATIVE WORK WHERE A
NUMBER OF EFFORTS TO COLLECT
DECISION MAKING AND COGNITIVE
MEASURES AND NEUROIMAGING
MEASURES ARE BEING UTILIZED TO
TRY TO LOOK AT THE WORK.
AND WE KNOW THAT WE CAN
POTENTIALLY SEE IN THE BRAINS OF
OLDER ADULTS CHANGES AHEAD OF
ANY NOTICEABLE COGNITIVE
DECLINE.
SO OUR GENERAL HYPOTHESIS IS WE
CAN USE NEUROIMAGING TO LOOK AT
THE BRAINS OF OLDER ADULTS TO
SEE ANY NOTICEABLE CHANGE IN
DECISION MAKING EVEN ACCOUNTING
FOR COGNITIVE ABILITY.
SO GENERALLY SPEAKING THIS IS
OUR CURRENT WORKING MODEL.
NEUROPATHOLOGICAL MARKERS OF
ALZHEIMER'S DISEASE OR DEMENTIA
IMPACT CERTAIN BRAIN REGIONS AND
DEPENDING ON HOW THEY'RE
IMPACTED YOU COULD IS A DECLINE
IN MEMORY ABILITIES WHICH IS
TYPICALLY WHAT IS THOUGHT OF IN
ALZHEIMER'S DEMENTIA OR HAVE A
DECLINE IN DECISION MAKING
ABILITY AND ONE COULD PROCEED
THE OTHER.
I WANTED TO SHOW ONE PART OF THE
WORK.
IN THIS PICTURE OF THE BRAIN
WHAT YOU CAN SEE IS THERE'S LESS
GRAY MATTER DENSITY IN THE RIGHT
HIPPOCAMPUS IN THE OLDER ADULTS
WITH DEMENTIA AND TO GREATER
SUSCEPTIBILITY TO SCAN AND
ADJUST FOR SEX, EDUCATION, AGE
AND COGNITIVE ABILITY.
IN DOING THE WORK IT BECAME
IMPORTANT TO ME TO CONSIDER
RACIAL DIFFERENCES IN OTHER
RACIAL GROUPS.
I NOTICED THERE WASN'T A LOT OF
ATTENTION TO THIS.
WE KNOW CONTEXTUAL FACTORS CAN
INDICATE UNEQUAL ACCESS TO
SUPPORTIVE RESOURCES.
SO THIS IS ACTUALLY THE
CURRENTLY ONGOING PROJECT WHERE
WE'RE TRYING TO UNDERSTAND THE
CONTEXTUAL FACTORS THAT MAY
EXPLAIN RACIAL DIFFERENCES IN
DECISION MAKING.
AND SO ONE EXAMPLE OF THIS WORK
HERE IS THIS STUDY WHERE WE SHOW
RACIAL DIFFERENCES IN DECISION
MAKING ARE ACTUALLY COMPLETELY
MEDIATED BY LITERACY AND WHAT WE
MEAN IS NOT JUST BROAD LITERACY
BUT IN FINANCIAL AND HEALTH
MATTERS.
SO THAT'S VERY CONTEXTUALLY
DIFFERENT AND RELATED TO THE
ABILITY AND ACCESS TO DEVELOP
LITERACY AND ACCESS TO
RESOURCES.
AND WE SEE THAT ACCOUNTS FOR ANY
RACIAL DIFFERENCES IN DECISION
MAKING HERE.
THIS IDEA OF FINANCIAL DECISION
MAKING THAT COULD PRECEDE EVEN
COGNITIVE DECLINE IS SOMETHING
WE'RE TRYING TO STUDY CURRENTLY
IN OUR LABORATORY USING
COGNITIVE AND NEUROIMAGING
TOOLS.
MORE WORK TO COME.
ONE QUICK EXAMPLE A RECENTLY
PUBLISHED STUDY LEVERAGING
BEHAVIORAL ECONOMICS BATTERY
DEVELOPED BY THE SECOND PICTURE
BELOW IS ACTUALLY AN ECONOMIST
AT U.C. S.D. AND THIS IS
SPEARHEADED BY A FORMER HELLO
KELLY WEISBERGER AND IN THE WORK
PART OF THE ECONOMICS WE'RE
USING THAT OLDER ADULTS WOULD
ANY COGNITIVE IMPAIRMENT BUT
OLDER ADULTS WILLING TO GIVE
AWAY MORE MONEY TO A STRANGER
ONLINE AND THIS IS
EXPERIMENTALLY TESTED PERFORMED
LOWER ON TESTS ON COGNITIVE
TESTS WE KNOW ARE SENSITIVE TO
ALZHEIMER'S DISEASE AND JUST
THOSE COGNITIVE TESTS NOT OTHER
COGNITIVE TESTS.
AND SHOWS CHANGES IN FINANCIAL
DECISIONS MAY BE AN EARLIER
INDICATION AND IT MAY IMPACT
FINANCIAL DECISION MAKING.
THOUGH POOR COGNITION IS
ASSOCIATED IT MAY NOT DUE SOLELY
TO POOR OR DECLINING COGNITION.
THERE'S OTHER FACTORS INVOLVED.
CERTAIN BRAIN REGIONS ARE
INDICATED BY THIS AND FINALLY
FOR CARE PROVIDERS THIS IS
SOMETHING WE ARE ENCOURAGING
EVERYONE TO CONSIDER.
FINANCIAL PLANNING AS EARLY AS
AND AS SOON AS POSSIBLE GIVEN
FINANCIAL DECISION MAKING MAY BE
AN EARLY CHANGE IN THE
PROGRESSION OF ALZHEIMER'S
DISEASE OR DEMENTIA ENSURING THE
PATIENT'S WISHES FOR FINANCES
ARE SET IN PLACE EARLY ON IS
IMPORTANT TO DO.
THIS IS HIGHLY INTERDISCIPLINARY
WORK.
I JUST NEEDED TO ACKNOWLEDGE THE
COLLABORATORS THAT WE HAVE
ACROSS THE COUNTRY AND THAT'S
ALL I HAVE TO SAY.
THANK YOU VERY MUCH.
>>HI.
THANKS SO MUCH TO THE ORGANIZERS
FOR THE OPPORTUNITY TO SPEAK AT
THIS IMPORTANT SUMMIT.
MY NAME IS MIREILLE JACOBSON A
HEALTH COMMITTEE AT USC.
I'LL TALK ABOUT WHAT WE KNOW AT
HEALTH CARE USE BEFORE AND AFTER
DEMENTIA DIAGNOSIS AND THE VAST
MAJORITY OF AGES 65 AND OLDER
WE'LL LOOK SPECIFICALLY AT
HEALTH CARE PAID FOR BY MEDICARE
AND FOCUS ON WHAT WE CALL
TRADITIONAL MEDICARE OR TM WHERE
THE FEDERAL GOVERNMENT PAYS
PROVIDERS FOR HEALTH CARE
DELIVERED TO BENEFICIARIES OR
MEDICARE ADVANTAGE WHERE THE
FEDERAL GOVERNMENT PAYS PRIVATE
HEALTH INSURANCE PLANS TO
ADMINISTER BENEFITS.
BECAUSE OF DATA CONSIDERATIONS
AND HISTORICAL ENROLLMENT
PATTERNS, MOST OF WHAT WE KNOW
ABOUT HEALTH CARE USE FOR OLDER
ADULTS WITHOUT AND WITHOUT
DEMENTIA FOCUSES ON THOSE IN
TRADITIONAL MEDICARE.
SOME WORK SUCH AS THOSE HERE
DEMONSTRATE INDIVIDUALS IN
TRADITIONAL MEDICARE HAVE
INCREASING RATES OF
HOSPITALIZATIONS, E.D. VISITS
AND AVOIDABLE HOSPITALIZATIONS
AND FALLS LEADING UP TO A
DEMENTIA DIAGNOSIS RELATIVE TO
THOSE WITHOUT A SUBSEQUENT
DEMENTIA DIAGNOSIS.
THIS SHOWS UP IN HEALTH CARE
SPENDING AS WELL.
WORK BY ONE OF OUR CO-CHAIRS AND
PANELISTS SHOWS BENEFICIARIES
ARE AT HIGH RISK OF AVOIDABLE
HOSPITALIZATIONS FOR CERTAIN
UNCONTROLLED COMORBIDITIES
DIABETES AND HYPERTENSION AFTER
A DEMENTIA DIAGNOSIS AND INCUR
HIGHER EXPENDITURES COMPARED TO
THOSE WITHOUT DEMENTIA.
MORE RECENT WORK DEMONSTRATE
HEALTH CARE USE AND MEDICAL
SPENDING SPIKE LEADING UP TO A
DEMENTIA DIAGNOSIS.
IT INCREASES LEADING UP TO AND
REMAINS HIGHER AFTER THE
DIAGNOSIS.
AND INTERESTINGLY THIS PATTERN
IS NOT FOUND AROUND CHANGES IN
COGNITIVE IMPAIRMENT.
THE GRAPH ON THE RIGHT
DOCUMENTED IN THIS CASE IN THE
HOUSEHOLD SURVEY MEANING OUTSIDE
THE HEALTH CARE SETTING.
THERE SEEMS TO BE SOMETHING
IMPORTANT ABOUT THE MEDICAL
DIAGNOSIS STAGE ABOVE AND BEYOND
DECLINES IN IMPAIRMENT PER SE.
TO SUMMARIZE THE PRIOR WORK
SHOWS INCREASES IN POTENTIALLY
AVOIDABLE AND OTHER HOSPITAL S
AND CARE BEFORE AND AFTER
DIAGNOSIS IN THE HEALTH CARE
SETTING BUT NOT AT THE FIRST
INDICATION OF IMPAIRMENT.
THIS IS SUGGESTIVE EVIDENCE OF
LATE DIAGNOSIS OR DIAGNOSIS
COMING AT A CRISIS POINT IN THE
IMPAIRMENT TRAJECTORY.
IMPORTANTLY IN TERMS OF WHAT WE
KNOW AND DON'T KNOW THIS WORK
HAS FOCUSSED LARGELY FOR DATA
REASONS ON INDIVIDUALS IN
TRADITIONAL MEDICARE AND NOT
THOSE IN MEDICARE ADVANTAGE.
BUT THERE'S A DRAMATIC
INCREASING TREND IN ENROLLMENT
OF MEDICARE BENEFICIARIES AND
MED ADVANTAGE PLANS.
AS OF 2022 NEARLY 50% OF
BENEFICIARIES ARE IN A MEDICARE
ADVANTAGE PLAN AND THIS TRENDS
SEEMS LIKELY TO SLOW AND
REQUIRED TO HARNESS NEW DATA ON
MEDICARE ADVANTAGE TO UNDERSTAND
THE EXPERIENCES OF BENEFITS AND
NOT JUST MEDICARE BUT MEDICARE
ADVANTAGE.
THERE'S MULTIPLE REASONS WE CAN
RELY ON EVIDENCE FROM
TRADITIONAL MEDICARE.
THE POPULATIONS IN TRADITIONAL
MEDICARE AND MEDICARE ADVANTAGE
DIFFER AND IMPORTANTLY THE
INCENTIVES DIFFER FOR PROVIDERS
AND PLANS ACROSS THESE TYPE OF
MEDICARE.
HEALTH PLANS IN MEDICARE
ADVANTAGE RECEIVE A CAPITATED
PAYMENT AND MEMBER FOR MONTH AND
FEE AND THEY HAVE INCENTIVES TO
MANAGE AND COORDINATE CARE TO
REDUCE REDUNDANCY AND TO SKIMP
ON CARE THOUGH THEY TRY TO KEEP
IT IN PERSPECTIVE AND DEMENTIA
DIAGNOSIS IS NOW USED IN
DETERMINING MEDICARE PLAN
PAYMENT ADJUSTMENTS AND IT'S AN
ISSUE I'LL COME BACK TO AT THE
END.
AND ON THE OTHER SIDE IN
TRADITIONAL MEDICARE THERE'S NO
CONSTRAINTS ON CARE SEEKING.
WEAKER INCENTIVE TO COORDINATE
AREA OR REDUCE UNNECESSARY CARE.
THOUGH THERE'S EXCEPTIONS WITH
ACCOUNTABLE CARE ORGANIZATIONS,
BUNDLED PAYMENTS, OTHER
ALTERNATIVE PAYMENT MODELS THE
BROAD DISTINCTION REMAINS TRUE
CARE IS GENERALLY MORE
CONSTRAINED IN MEDICARE
ADVANTAGE.
SO WHAT ARE THE IMPLICATIONS FOR
CARE GENERALLY AND FOR
BENEFICIARIES FOR DEMENTIA?
MULTIPLE STUDIES DOCUMENT
DIFFERENCES IN CARE IN
TRADITIONAL MEDICARE VERSUS
MEDICARE ADVANTAGE AND THIS IS A
TABLE FROM A REVIEW OF THIS VAST
LITERATURE WHICH IS NOT SPECIFIC
TO DEMENTIA.
THOSE STUDIES TEND TO FIND
APPROPRIATE AMBULATORY CARE LIKE
BREAST CANCER SCREENINGS,
COLORECTAL AND CHOLESTEROL
TESTING ARE MORE COMMON IN
MEDICARE ADVANTAGE THAN
TRADITIONAL MEDICARE AND ON THE
FLIP SIDE EMERGENCY CARE IS LESS
COMMON THAN IN TRADITIONAL
MEDICARE.
MORE RECENTLY AND THIS IS
ONGOING WORK WE'VE BEEN
ANALYZING ADMINISTRATIVE DATA
FROM MEDICARE TO LEADING UP TO
CARE AFTER A DIAGNOSIS AND YOU
CAN SEE THE HOSPITALIZATION BY
MONTH RELATIVE TO MONTH ZERO THE
MONTH OF DEMENTIA DIAGNOSIS AND
THE RIGHT WE THOUGHT THE MEAN
NUMBER OF OUTPATIENT COMPARED TO
THE DIAGNOSIS MONTH.
YOU CAN SEE HOSPITALIZATION
RATES ARE SIMILAR IN TRADITIONAL
MEDICARE IN BLUE AND MEDICARE
ADVANTAGE IN RED.
AND IN THE MONTHS PROCEEDING
DEMENTIA DIAGNOSIS THEY INCREASE
DRAMATICALLY IN BOTH GROUPS AND
MORE SO IN THE TRADITIONAL
MEDICARE.
THE RATES DECLINE BUT REMAIN
ELEVATED AFTER DIAGNOSIS AND
FIND A SIMILAR PATTERN FOR OUT
PATIENT VISITS INCLUDING THE
FACT THAT TRADITIONAL MEDICARE'S
ALWAYS HIGHER THAN MEDICARE
ADVANTAGE.
WE'RE SHOWING THE DIFFERENCES BY
TRADITIONAL MEDICARE RELATIVE TO
MEDICARE ADVANTAGE.
ADJUSTED FOR ALL SORTS OF
OBSERVABLE CHARACTERISTICS AND
THE FIRST THING TO KNOW IS WHAT
WE SAW IN THE RAW DATA IS STILL
APPARENT AND ADJUSTED MODELS
WHERE WE JUST FOR AGE, RACE AND
COMORBIDITIES AND SO FORTH AND
BASED ON THE MODELS WE FIND
THOUGH HOSPITALIZATION RATES
WERE INITIALLY SIMILAR IN
MEDICARE AND MEDICARE ADVANTAGE
PRIOR TO DIAGNOSES, DIFFERENCES
APPEAR THREE MONTHS PRIOR TO THE
DIAGNOSIS ARE PRONOUNCED AT
DIAGNOSIS AND REMAIN HIGHER MANY
MONTHS.
RECENT WORK SUGGESTS SOME OF THE
DIFFERENCES MAY BE DUE TO A
SHIFT TO OBSERVATION STAYS IN
MEDICARE ADVANTAGE THOUGH AS WE
LOOKED MORE INTO THIS IN THE
DEMENTIA CASE WE DON'T THINK
THAT'S WHAT'S GOING ON HERE.
WHAT DOES THIS MEAN FOR DEMENTIA
CARE?
MOST HAVE MEDICARE COVERAGE.
INCREASINGLY THE INDIVIDUALS ARE
ENROLLED IN MEDICARE ADVANTAGE
AND WE FIND HEALTH CARE
UTILIZATION SPIKES LEADING UP TO
A DEMENTIA DIAGNOSIS IN MEDICARE
AND MEDICARE ADVANTAGE THOUGH
THE INCREASE IS LESS DRAMATIC IN
MEDICARE ADVANTAGE.
IT REMAINS TO BE SEEN HOW MUCH
IS DUE FOR EXAMPLE DUE TO BETTER
CARE COORDINATE OR THE SHIFTING
OF THE BURDEN OF CARE.
WE KNOW RELATIVELY LITTLE HOW
THE PATTERNS DIFFER ACROSS
ADVANTAGE PLANS.
AND THERE'S CONSTRAINTS ON WHERE
PATIENTS RECEIVE MEDICARE
ADVANTAGE RATHER THAN CARE
COORDINATION PER SE.
WE DON'T FIND EVIDENCE THAT
LOWER CARE USE IN MEDICARE
ADVANTAGE LEADS TO HARM FOR
THOSE WITH DEMENTIA AS MEASURED
BY VERY SPECIFICALLY ONE YEAR
MORTALITY.
BUT WE CAN'T SAY ANYTHING ABOUT
OTHER OUTCOMES SUCH AS CARE
GIVING WELL BEING AND CARE
SATISFACTION, STRESS AND SO ON.
SO THERE'S REALLY INTENSE
INTEREST IN TRYING TO UNDERSTAND
THESE PATTERNS AND WHAT THEY
MEAN FOR TIMELY DIAGNOSIS,
QUALITY -- OUTCOMES FOR FAMILIES
AND CAREGIVERS.
NEXT SLIDE TO SAY THANK YOU AND
I APPRECIATE THE OPPORTUNITY.
>>HI, EVERYONE.
I'M PETER NEUMANN.
TUFT'S MEDICAL CENTER IN BOSTON.
I'M A HEALTH ECONOMIST AND
DIRECT THE RESEARCH CENTER AT
TUFTS AND PROFESSOR AT THE
SCHOOL OF MEDICINE.
I'M GOING TO TALK ABOUT COSTS
AND COST EFFECTIVENESS IN
DEMENTIA AND DEMENTIA CARE.
I WANT TO THANK THE ORGANIZERS
FOR INVITING ME AND FOR ALL THE
EFFORTS FOR PROVIDING GREAT
CONFERENCE ON THIS IMPORTANT
TOPIC.
I'D LIKE TO DO THREE THINGS IN
MY BRIEF REMARKS.
FIRST TALK A LITTLE BIT MORE
ABOUT THE ECONOMIC BURDEN OF
DEMENTIA.
I KNOW WE'VE TALKED ABOUT THIS
AND SECOND, COST EFFECTIVENESS
OF DEMENTIA CARE AND FINALLY
IMPLICATIONS FOR CARE.
LET ME START WITH ECONOMIC
BURDEN OF DEMENTIA.
AS MANY OF YOU KNOW THERE'S A
VERY LARGE LITERATURE OUT THERE
ON THE TOPIC.
MY COLLEAGUE AND I CONTRIBUTED
TO IT.
HERE'S WHAT I CALL FIVE STYLIZED
FACTS FROM THE LITERATURE ON
ALZHEIMER'S DISEASE AND RELATED
DEMENTIAS.
FIRST WE KNOW ALZHEIMER'S
DISEASE IMPOSES SUBSTANTIAL
COST.
WE KNOW THIS.
IN PARTICULAR SOME COSTS IN
PARTICULAR HEALTH COSTS ARE
DRIVEN BY HOSPITAL AND NURSING
HOME CARE AND IT RISES WITH
DISEASE STAGE.
I'LL SHARE DATA IN A MOMENT.
AND CAREGIVER COSTS ARE
PARTICULARLY HIGH IN DEMENTIA
AND ALZHEIMER'S.
FOR ALZHEIMER'S DISEASE
COMPLICATED OTHER HEALTH ISSUES
AND FINALLY ALZHEIMER'S DISEASE
CARE AND COST DIFFER BY RACE AND
ETHNICITY.
I'LL SHARE SOME RESEARCH WITH
YOU.
THERE'S A LOT OF NUMBERS OUT
THERE.
THERE'S A NICE STUDY FROM THE
ALZHEIMER'S ASSOCIATION.
$320 BILLION IN 2022 AND YOU CAN
SEE THE BREAK DOWN THERE IN THE
PIE CHART.
A LOT OF ON THE RIGHT IS
MEDICARE AND OUT POCKET SPENDING
IS PARTICULARLY HIGH.
25% AND ALSO MEDICAID AND OTHER
COSTS.
AND THE FAR TOP RIGHT THIS DOES
NOT EVEN INCLUDE THE SUBSTANTIAL
CAREGIVER COSTS.
WE KNOW ALZHEIMER'S COSTS RISE
WITH DISEASE STAGE.
THIS DATA TRIES TO QUANTIFY
THAT.
$27,000 MILD, $41 ,000 SEVERE.
THE IMPLICATION IS IF WE CAN
DELAY PROGRESSION TO MORE SEVERE
STAGES WE CAN POTENTIALLY SAVE A
LOT OF MONEY AND IF WE DELAY
PROGRESSION ALL TOGETHER ON THE
FAR RIGHT WE COULD SAVE THE
$113,000 REPRESENT ANNUAL
NURSING HOME COSTS.
WE ALSO KNOW FROM THAT
ALZHEIMER'S DISEASE COMPLICATES
ISSUES.
ALZHEIMER'S DISEASE WE ALSO KNOW
BLACK AND HISPANICS VERSUS WHITE
PATIENTS WITH ALZHEIMER'S
DISEASE HAVE ADDITIONAL
COMPLICATIONS AND ISSUES.
SO THIS IS FROM A SERIES OF
PAPERS THAT MY COLLEAGUE HAS
LED.
YOU CAN SEE IN THE BOTTOM RIGHT
SOME OF THE RECENT PAPERS THAT
SHE HAS AND ON THE LEFT OF THE
SPECTRUM WE KNOW BLACKS AND
HISPANICS HAVE DELAYED
DIAGNOSIS.
THEY TEND TO GET DELAYED LATER
IN THE COURSE OF THE DISEASE.
THEY TEND TO BE TREATMENT DLAID
DELAYS AND LOWER ACCESS TO
SPECIALTY CARE AND SO FORTH.
THEN ON THE FAR RIGHT OF THE
SPECTRUM WE ALSO KNOW BLACK AND
HISPANIC PATIENTS VERSUS WHITE
PATIENTS HAVE LOWER USE OF
HOSPICE CARE.
MORE EMERGENCY DEPARTMENT VISITS
AND HOSPITALIZATIONS AND A LOT
MORE DETAIL IN THESE PAPERS.
SO LET ME TURN FROM THE ECONOMIC
BURDEN OF DEMENTIA TO COST
EFFECTIVENESS OF DMRSH CARE.
SOMETHING WE HAVEN'T HEARD A LOT
ABOUT YET IN THE CONFERENCE.
SO WE KNOW THE COSTS ARE HIGH
AND THE COSTS VARY BY STAGE AND
RACE AND ETHNICITY AND SO FORTH.
WHAT DO WE KNOW FROM FORMAL COST
EFFECTIVENESS ANALYSES OF THE
VALUE OF DEMENTIA CARE WE'VE
WORKED ON FOR A NUMBER OF YEARS?
MOORES THREE POINTS.
THERE'S A GROWING NUMBER OF COST
EFFECTIVENESS ANALYSES ON
DEMENTIA INTERVENTIONS AND THEY
SPAN A WIDE RANGE OF TOPICS.
SOME OF THESE INTERVENTIONS ARE
FOUND TO BE QUITE COST
EFFECTIVE.
AND THEN THE FINAL QUESTION
OPPOSED WITH THE TREATMENTS THAT
WE'RE JUST STARTING TO SEE.
WE'RE STARTING TO SEE MONOCLONAL
ANTIBODIES TARGETING AMYLOIDS IN
THE BRAIN AND AWAITING FDA
APPROVAL.
WE'RE IN THE COST EFFECTIVENESS
LITERATURE AND IN THE QUALITY
RATIO WORLD SO WE HAVE COSTS AND
INTERVENTION COST AND NET
SAVINGS AND QALYs AS THE DE
NOMINATOR.
THIS IS SHOWING INCREASES OVER
TIME.
SIMPLY IN THE COST EFFECTIVENESS
ANALYSIS OF DEMENTIA CARE COMING
FROM THE REGISTRY MY COLLEAGUES
AND I MAINTAIN.
WE FOUND 87 STUDIES ON THE COST
EFFECTIVENESS OF DEMENTIA CARE
ALL IN THE COST OF QUALITY
GAINED.
THEY SPAN A RANGE OF
INTERVENTIONS.
UNDER THIS RANGE IS CONSIDERED
COST EFFECTIVE.
ABOVE THAT IS OFTEN CONSIDERED
NOT COST EFFECTIVE OR LESS COST
EFFECTIVE.
THERE'S ACTIVE DEBATE WHETHER HE
SHOULD HAVE HIGHER COST
EFFECTIVENESS RATIOS FOR
ALZHEIMER'S AND OTHERS WILL TALK
ABOUT THAT AND YOU SEE TWO OTHER
EXAMPLES HERE.
CEREBROSPIRAL BIOMARKER AND A
PAPER LOOKING AT HYPOTHETICAL
DISEASE MODIFYING TREATMENT
DEPENDING WHETHER YOU INCLUDE
CAREGIVER COST AND QUALITY OF
LIFE IN THE STUDY.
SO THERE'S BEEN STUDIES ON SOME
OF THE ANTIBODIES.
THIS IS FROM THE REPORT AND FDA
ACTION.
AND THEY LOOKED AT HEALTH CARE
SECTOR AND SOCIETAL PERSPECTIVE.
AND PATIENT AND SOMETIMES COSTS
COULD BE THREE AND FOUR TIMES
HIGHER FOR ALZHEIMER'S.
LET ME END ON IMPLICATIONS FOR
CARE WITH A COUPLE QUICK
REMARKS.
WE NEED TO DO MORE RESEARCH.
WE NEED BETTER DATA ON ECONOMIC
BURDEN AND WE DO NEED IN MY VIEW
TO BETTER UNDERSTAND THE COST OF
FAMILIES AND SOCIETY AND
IDENTIFY AND QUANTIFY THE
NON-MEDICAL COSTS AND THEN A LOT
MORE WORK ON COST EFFECTIVENESS
ANALYSIS.
IN PARTICULAR TO LOOK AT WHAT
MAY NOT BE INCLUDED IN
CONVENTIONAL STUDIES.
RISK PREFERENCES WITH PATIENTS
AND CAREGIVERS AND FAMILY
SPILLOVER EFFECTS.
THINGS LIKE THAT.
NEXT SLIDE.
THANK YOU VERY MUCH AND LOOK
FORWARD TO THE DISCUSSION.
THANKS.
>>THANK YOU, DR. HAN AND
DR. JACOBSON AND DR. NEWMAN FOR
YOUR EXCELLENT PRESENTATIONS.
I'M PAIGE LIN.
A HEALTH ECONOMIST AND ASSOCIATE
PROFESSOR AT TUFT'S MEDICAL
CENTER.
I'M A CO-CHAIR OF THE SESSION.
HERE ARE OUR PROPOSED RESEARCH
GAPS AND OPPORTUNITIES WHICH
HIGHLIGHT THREE COST-CUTTING
THEMES ACROSS THE INDIVIDUALS
WITH DEMENTIA AND FAMILIES AND
HEALTH CARE SYSTEM.
WE PROPOSE TO SOMEONE THE
RELATIONSHIP BETWEEN DEMENTIA,
HEALTH INSURANCE AND HEALTH CARE
DECISION MAKING FROM EARLY TO
LATE STAGES OF THE DISEASE.
THIS INCLUDES ANALYZING HOW
DEMENTIA INFLUENCES A PERSON'S
HEALTH CARE PLAN CHOICES SUCH AS
TRADITIONAL MEDICARE AND
MEDICARE ADVANTAGE.
AND ACCESS TO CARE AND DEMENTIA
DIAGNOSIS AND DISEASE
MANAGEMENT.
OUR SECOND GNO IS TO SOMEONE THE
RELATIONSHIP BETWEEN DEMENTIA
AND FINANCIAL DECISION MAKING.
WE MUST BETTER PREDICT THE
COURSE OF DEMENTIA BECAUSE THAT
INFORMATION IS CRUCIAL FOR
PERSONS LIVING WITH A CONDITION
AND THEIR FAMILIES.
WE'RE MAKING FINANCIAL AND
MEDICAL DECISIONS.
AND WE THINK RESEARCH SHOULD
ANALYZE HOW INDIVIDUALS AND
FAMILIES PAY FOR DEMENTIA CARE
ACROSS DISEASE STAGES AND HOW
THEIR RETIREMENT SAVINGS PLANS
CHANGE AND IT'S IMPORTANT TO
LOOK AT THESE ISSUES IN THE
CONTEXT OF SOCIAL DETERMINATES
OF HEALTH.
LASTLY, WE'RE IN THE EXCITING
ERA OF INNOVATION OF DIAGNOSTICS
AND TREATMENTS.
FROM BE AN ECONOMIC PERSPECTIVE
WE THINK IT'S IMPORTANT TO
EXPAND THE RESEARCH BY NEW
MEASUREMENT OF SUCH TECHNOLOGIES
INCLUDING BLOOD BASED
BIOMARKERS.
AND FAMILIES CAN MAKE DECISIONS
ABOUT TREATMENT AND HOW THEY
THINK ABOUT BENEFITS, RISK AND
SIDE EFFECTS AND MAKING
FINANCIAL TRADE-OFF WITH OTHER
DEMENTIA CARE AND SUPPORT
SERVICES.
SO I JUST QUICKLY SUMMARIZE OUR
PROPOSED RESEARCH GAPS AND
OPPORTUNITIES.
IN THE NEXT 10 MINUTES WE'LL
HEAR FROM THREE DISTINGUISHED
SPEAKERS ON THE ECONOMIC IMPACT
OF DEMENTIA AND HOW WE AS
RESEARCHERS CAN HELP MOVE THE
FIELD FORWARD.
I'M OVER THE MOVE ABOUT THE
LINEUP OF PANELISTS.
WE'LL HEAR FROM DR. DARIUS
LAKDAWALLA FROM THE UNIVERSITY
OF SOUTHERN CALIFORNIA AND
DR. RACHELER FROM THE UNIVERSITY
OF PENNSYLVANIA WILL SHARE
REMARKS FOLLOWED BY DR. HELEN
LAMONT FROM ASPE OR THE OFFICE
OF ASSISTANT SECRETARY FOR
PLANNING AND EVALUATION AND
THEIR BIOS CAN BE FOUND IN THE
ONLINE PROGRAM.
IF I CAN INVITE DR. LAKDAWALLA,
PLEASE COME ON CAMERA I'M
THANKFUL TO THE ORGANIZERS FOR
INVITING ME TO THE SESSION.
I WANT TO PICK UP ON SOME THINGS
PAIGE EMPHASIZED AND CAME UP
EARLIER THERE'S VALUE FROM
PROGNOSTIC AND DIAGNOSTIC
INFORMATION ABOUT THE COURSE OF
THE ILLNESS.
WE KNOW THE ILLNESS IMPOSES
ENORMOUS BURDENS AND KNOW THE
BURDENS EXTEND BEYOND HEALTH YET
TOO OFTEN WE FOCUS EXCLUSIVELY
ON HEALTH OUTCOMES AND IGNORE
THE VALUE OF INFORMATION ON
IMPROVING SOCIAL AND ECONOMIC
OUTCOMES.
WHEN MY FATHER WAS DIAGNOSED
WHAT WAS CHALLENGES WAS HOW
LITTLE WE WERE TOLD ABOUT WHAT
TO EXPECT REGARDING HIS FUTURE.
IT'S NOT THAT WE DIDN'T HAVE
FANTASTIC PHYSICIANS AND
PROVIDERS OF CARE BUT THESE
THINGS AREN'T KNOWN.
WE WERE TOLD IT COULD BE A
COUPLE YEARS OR 10 OR 15 YEARS
BEFORE THERE'S A DECLINE.
IT COULD BE RAPID OR SLOW.
HIS DECLINE COULD BE COMPROMISED
EARLIER OR LATER AND COULD GO ON
AND ON ABOUT THE THINGS YOU
DON'T KNOW.
IT COMPLICATES PLANNING IN A
NUMBER OF WAYS.
YOU DON'T KNOW HOW MUCH THE
DISEASE IS GOING TO COST.
YOU DON'T KNOW WHAT KIND OF
ASSISTANCE IS GOING TO BE NEEDED
AND EVEN AFFECTS OTHER CLINICAL
DECISIONS LIKE HOW AGGRESSIVELY
DO YOU MANAGE COMORBID
CONDITIONS IF YOU DON'T KNOW HOW
LONG THERE IS LEFT IN A PATIENT
LIFE.
PEOPLE RECOGNIZE THE VALUE OF
KNOWING THESE KINDS OF THINGS.
THE PROBLEM IS OUR POLICIES
OFTEN FOCUS EXCLUSIVELY ON
CLINICAL OUTCOMES INSTEAD OF
SOCIAL AND ECONOMIC OUTCOMES.
MEDICARE FOR INSTANCE VALUES
DIAGNOSTICS ACCORDING TO HOW
THEY CHANGE TREATMENT DECISIONS
ALONE.
SO THE VIEW HAS BEEN AS LONG AS
THERE ARE NO EFFECTIVE
TREATMENTS FOR ALZHEIMER'S WE
DON'T SEE WHY DIAGNOSTICS OR
PROGNOSTIC INFORMATION FOR SURE
ARE ALL THAT VALUABLE.
THAT'S CLEARLY NOT TRUE.
THE ISSUE BECOMES THAT BY
FOCUSSING EXCLUSIVELY ON
CLINICAL DIMENSIONS AND WE'RE
COMPROMISING SOME OTHER CARE
LIKE COMORBID CONDITIONS AND
COMPROMISING SOCIAL AND ECONOMIC
OUTCOMES WHICH IS THE FOCUS OF
CARE FOR PATIENTS TODAY AS WE
WAIT FOR NEW TECHNOLOGIES.
I'M NOT SUGGESTING WE GIVE A
BLANK CHECK FOR DIAGNOSTIC
TECHNOLOGY BUT WHEN THINKING OF
VALUE, THE IMPACTS ON SOCIAL AND
ECONOMIC OUTCOMES NEED TO BE
EXPLICITLY CONSIDERED AND IF
THEY ARE, THE INCENTIVES WILL BE
CREATED FOR BETTER DIAGNOSTICS,
MORE PROGNOSTIC INFORMATION AND
BETTER DATA ABOUT HOW THESE
TECHNOLOGIES AFFECT SOCIAL AND
ECONOMIC OUTCOMES.
THANKS VERY MUCH FOR YOUR TIME.
IT'S A PLEASURE TO BE HERE AND
LOOK FORWARD TO YOUR QUESTIONS.
>>AND HOW PAYMENT POLICIES
AFFECT COST AND HOW MEDICARE
POLICIES AND THE MOVE TOWARDS
VALUE-BASED PAYMENT SPILLS OVER
TO CARE FOR A NEEDING POPULATION
THE NEED FOR LONG-TERM SERVICES
AND SUPPORT.
AND SO IT'S WELL KNOWN IN THE
AUDIENCE THE USE OF SERVICES AND
SUPPORTS IS COMMON AMONG PEOPLE
LIVING WITH DEMENTIA AND THEIR
HIGH COST TO MEDICARE AND TO
MEDICAID ASSOCIATED WITH THE
SUPPORTS IS LARGELY FUNDED BY
MEDICAID.
SOME IS PAID FOR OUT OF POCKET.
A LOT OF IT IS PAID FOR MY
FAMILY MEMBERS WHO HAVE UNPAID
CAREGIVING.
75% OF DEMENTIA RECEIVE
CAREGIVING.
THESE COSTS ADD TO UP 300 AND
$600 PER CAREGIVER AND MEDICARE
IS A LONG-TERM PAYER OF SERVICE
AND SUPPORTS THOUGH THAT GOES
AGAINST SOME WISDOM AND SOME
HOME HEALTH EPISODES ARE
INITIATED IN THE COMMUNITY AND
NOT PROMPTED BY AN ACUTE EPISODE
LIKE A HOSPITAL STAY.
WHILE THERE'S A SKILL NEED
REQUIRED TO INITIATE COVERAGE
EPISODE TO BE COVERED, THE VAST
MAJORITY OF PEOPLE WHO RECEIVE
HOME HEALTH GET HELP WITH ADLs
AND IADLs AND PARTICULARLY TRUE
AMONG THOSE WITH DEMENTIA AND
POST-HOSPITAL MEDICAL CARE IS
FUNDED AND THERE'S RESPITE FOR
CAREGIVERS AND THE SERVICE ARE
DECLINING AND THERE'S BUNDLED
PAYMENT AND ACCOUNTABLE CARE
ORGANIZATIONS.
ONE IMPORTANT QUESTION IS WHAT
THE EFFECT OF THIS DECLINING
MEDICARE FUNDED SUPPORT HAS FOR
AN AGING POPULATION AND PEOPLE
LIVING WITH DEMENTIA.
WE KNOW AS A RESULT OF THIS CARE
IS DECLINING AND NON-REIMBURSED
HELP SUCH AS UNPAID CAREGIVERS
IS INCREASING AND THERE'S
EVIDENCE THE INCREASE IN
CAREGIVING IS CAUSED TO A CHANGE
IN MEDICARE PAYMENT.
THIS HAS IMPLICATIONS FOR PEOPLE
LIVING WITH DEMENTIA AND THE
DECLINING SUPPORT WITH
ALTERNATIVE PAYMENT MODELS RISK
INCREASES BURDEN WHICH WE KNOW
TO BE QUITE HIGH.
AS THE TRENDS TOWARDS MORE CARE
AT HOME HAVE ACCELERATED WE
MIGHT EXPECT FURTHER INCREASES
IN THE BURDEN.
IT ALSO HAS POLICY IMPLICATIONS
BUT HARD TO CONSIDER THE
INDIRECT COSTS WHEN YOU CONSIDER
PAYMENT POLICY AND REFORM AND
HIGHLIGHTS THE NEED TO PROVIDE
RATIONALE AND POLICY APPROACHES
TO LESSEN THE BURDEN ON
CAREGIVERS INCLUDING PROVIDING
MORE FINANCIAL SUPPORT TO
CAREGIVERS AND MORE
COMPREHENSIVE HOME-BASED OPTIONS
TO LESSEN THE BURDEN ON
CAREGIVERS.
I'LL STOP MY COMMENTS THERE.
THANK YOU FOR HAVING ME.
>>THANK YOU FOR HAVING ME
TODAY.
I'M FROM ASPE IS THE OFFICE FOR
ASSISTANT SECRETARY PLANNING AND
EVALUATION AND YEAR IN THE
OFFICE OF THE SECRETARY OF HHS.
SO IT SITS AT THE INTERSECTION
OF RESEARCH AND POLICY.
I WANTED TO JOIN YOU TODAY TO
BOTH APPLAUD YOUR WORK AND GIVE
YOU AN ADDITIONAL CHARGE.
SO IT'S BEEN SO ENCOURAGING TO
SEE PATIENT-CENTERED OUTCOME AT
PATIENT-CENTERED OUTCOMES AND
THE MOST COSTLY ARE
HOSPITALIZATIONS, NURSING HOME
PLACEMENT, FINANCIAL
EXPLOITATION.
WHAT POLICY MAKERS ARE TRYING TO
WORK TOWARDS IS HIGH VALUE CARE
AND IMPROVES OUTCOME AND OFTEN
THE CARE LESS COSTLY.
I'VE BEEN PART OF CONVERSATIONS
WITH POLICY MAKERS WHO WANT TO
IMPLEMENT A CHANGE BUT WE DON'T
HAVE THE SPECIFIC INFORMATION
THAT WE NEED OF WHAT THE
ECONOMIC INVESTMENTS ARE UP
FRONT AND WHERE THE VALUES WILL
BE A LITTLE BIT DOWN STREAM.
SO IN THE LAST DECADE DEMENTIA
RESEARCH HAS COME VERY FAR
ESPECIALLY DEMENTIA CARE
RESEARCH.
WE NEED MORE INFORMATION ABOUT
WHAT YOU ALL ARE DOING IN THE
RESEARCH COMMUNITY SO WE CAN GET
TO IMPLEMENTATION.
WE NEED TO KNOW HOW MUCH IT
COSTS TO RECRUIT AND RETAIN THE
PEOPLE WITH THE INTERVENTIONS
AND HOW MUCH IT COST TO MODIFY
AN E.H.R. FOR THE WORK FLOW AND
THE DETAILS RESEARCHERS USE TO
CALCULATE POWER SO THERE'S
ENOUGH STATISTICAL POWER TO FIND
AN EFFECT IS IMPORTANT TO SHARE
PUBLICLY AND IN YOUR
PUBLICATIONS SO BROADER
AUDIENCES, HEALTH CARE SYSTEMS,
POLICY MAKERS CAN USE THAT
INFORMATION AS THEY MAKE
DECISIONS.
I APPLAUD YOU ALL FOR
RECOGNIZING THE DIVERSITY OF
PEOPLE WITH DEMENTIA AND THEIR
CAREGIVERS, THE COMMUNITIES
WHERE THEY LIVE AND THE SYSTEMS
IN WHICH THEY GET CARE AND
PUBLISH THE DIFFERENTIAL IMPACTS
ON THE INTERVENTIONS BROKEN DOWN
BY THE CHARACTERISTICS AT ALL
THESE DIFFERENT LEVELS.
IT WOULD BE ESPECIALLY HELPFUL
TO HAVE DIFFERENCES BY
CHARACTERISTICS THAT LEND
THEMSELVES TO POLICY
INTERVENTION LIKE PEOPLE DULY
ELIGIBLE FOR MEDICARE AND
MEDICAID.
I ALSO ENCOURAGE YOU TO SHARE
SELECTION WITH RESEARCH TO
UNDERSTAND HOW FINDINGS CAN BE
GENERALIZED AND WHO CAN USE THE
RESEARCH AND WHERE WE HAVE GAPS
IN KNOWLEDGE.
UNLIKE MANY POLICY ISSUES THE
IMPACT OF DEMENTIA GOES FAR
BEYOND MEDICARE.
THE CARE FUNDED BY MEDICARE,
MEDICAID, COMMUNITY
ORGANIZATIONS AND FAMILY IMPACTS
THE COST OF CARE BY ALL THOSE
OTHER PAYERS.
WE THINK IMPROVING DEMENTIA CARE
THROUGH MEDICARE WILL DELAY
NURSING HOME PLACEMENT BUT FOR
HOW LONG AND FOR WHAT
POPULATIONS AT WHAT SAVINGS?
WE NEED INFRASTRUCTURE AND
UNDERSTAND HOW THE PAYERS
INTERACT AND WHERE COSTS ACCRUE
AND VALUE ACCRUE THROUGHOUT THE
DISEASE PROCESS.
FINALLY, I ENCOURAGE EVERYONE TO
THINK OF THE VALUE OF CARE
ACROSS THE DISEASE CONTINUUM.
WHILE THERE'S BEEN FOCUS ON
SLOWING DISEASE PROGRESSION
EARLY ON, I THINK WE NEED TO
CONSIDER WHETHER AND HOW IT WILL
IMPACT QUALITY OF LIFE DURING
THE HARD YEARS WHEN SOMEONE WITH
DEMENTIA NEEDS HIGH LEVEL, CARE
AND DOES THAT BRING VALUE FOR
THE PERSON OR ECONOMICALLY WHAT
YOU WANT TO INVEST IN AND HOW
DOES THAT CHANGE OUR VALUE
CALCULATIONS.
THANK YOU SO MUCH.
>>THANK YOU, DR. LAKDAWALLA AND
DR. WERNER AND DR. LAMONT.
WE APPRECIATE YOUR REMARKS.
I'VE BEEN TOLD THE TECHNICAL
TEAM NEED TO DO A QUICK CHECK OF
THE SYSTEM BEFORE WE MOVE ON TO
THE DISCUSSION.
SO I THINK IT'S GOING TO BE A
QUICK CHECK.
IF YOU NEED TO STAND UP,
STRETCH, GET SOME WATER, OR DO
DOWNWARD FACING DOG NOW IS A
GOOD TIME AND TAKE A VERY SHORT
ONE OR TWO-MINUTE BREAK.
I'M GOING TO START US OFF ON
DIAGNOSTIC INFORMATION AND TO
DR. LAKDAWALLA'S POINT ABOUT HOW
THIS CAN CHANGE -- THIS VARIES
FROM PERSON TO PERSON AND THAT
UNCERTAINTY IS A CHALLENGE FOR
PATIENTS AND FAMILIES TO SAY THE
LEAST WHEN MAKING PLANS FOR THE
FUTURE.
SO CAN YOU COMMENT ON THE
ECONOMIC VALUE OF DIAGNOSTIC
INFORMATION AND WHAT POLICY
TOOLS OR DATA SOURCES OUT THERE
CAN HELP ADDRESS THE
UNCERTAINTIES AND MAYBE MAYBE
THIS IS A QUESTION FOR
DR. LAMONT I KNOW IT'S MENTIONED
IN THE NAPA AND THE NEW DATA
SOURCE SUPPORTED BY THE NIA THE
H CAP PROJECT.
I WONDER IF YOU CAN ALL COMMENT
ON THAT.
>>WE DID A HYPOTHETICAL STUDY
ABOUT FINDING OUT ABOUT
ALZHEIMER'S AND WHAT THEY WOULD
DO ABOUT IT AND LOOK AT FINANCES
AND MAYBE SEEK OUT AN APPROVED
TREATMENT AND ON AND ON.
HOWEVER, THERE WAS A LOT OF
VARIATION.
SOME PEOPLE DON'T WANT THE TEST.
MOST SAID THEY WOULD.
IT SUGGESTS WHAT WAS SAID YEREAY
JUST KNOWING ONE'S STATS FROM
TREATMENT CONSEQUENCES.
AS FAR AS DATA AND RESEARCH I
THINK THIS IS AN AREA WE SHOULD
INVEST IN.
SOME OF THE RESEARCH WILL COME
FROM SURVEYS OR PREFERENCES OF
PEOPLE.
I THINK THAT'S ONE AREA OF
PATIENT-REPORTED OUTCOMES WERE
MENTIONED AND LOTS OF OTHER
THINGS.
I'LL STOP.
>>I'LL CHIME IN WHEN WE THINK
OF VALUE OF DIAGNOSIS AND WE
THINK ABOUT THE PATIENT AND THIS
AND A POINT THAT A LOT OF THE
VALUE COMES TO FAMILIES AND
CAREGIVERS.
WE DON'T REALLY TAKE THAT INTO
ACCOUNT WHEN WE'RE THINKING
ABOUT THESE DIAGNOSTICS AND SO I
THINK THAT ADDS A LAYER WE NEED
TO CONSIDER HERE.
>>THAT'S AN IMPORTANT POINT
JUST MADE THAT ALZHEIMER'S EVERY
DISEASE IS IT'S OWN
IDIOSYNCRATIC SET OF PROBLEMS
WILT ONE ISSUE WITH ALZHEIMER'S
IS SO MUCH OF THE BURDEN
SHIFTING TO FAMILIES AND
CAREGIVERS JUST BECAUSE IT'S
SUCH AN ALL-ENCOMPASSING SET OF
HEALTH PROBLEMS FOR THE PATIENT
AND I THINK THAT'S OFTEN UNDER
APPRECIATE AND THE OTHER ISSUE
IS INFORMATION IS VALUABLE ALSO
POST DIAGNOSIS TO HELP FAMILIES
AND PATIENTS UNDERSTAND THE
TRAJECTORY OF THE ILLNESS TO THE
EXTENT IT CAN BE PREDICTED.
>>I AGREE AND AN INFUSION
THERAPY THAT REQUIRES SOMEONE TO
TAKE SOMEONE AN HOUR AWAY MAY
HAVE A DIFFERENT VALUE
CALCULATION AND TELEHEALTH MAY
BE VALUABLE FOR THE CAREGIVERS
BUT MAYBE NOT FOR THE EFFICIENT
AND WHAT CAN WE BRING TO BEAR ON
THE DECISION MAKING PROCESS
RELATED TO THESE.
>>IF I CAN FOLLOW UP ON THE
VALUE OF DIAGNOSTIC AND
INCORPORATING CAREGIVERS'
PERSPECTIVE.
WE KNOW MOST COST-EFFECTIVENESS
ANALYSIS OF DEMENTIA TREATMENT
TYPICALLY START WITH A DIAGNOSED
POPULATION.
AND THESE MODELS DO NOT DEAL
WITH DIAGNOSTIC UNCERTAINTIES OR
DISPARITIES.
AND HOW DO WE THINK OF THE VALUE
OF DIFFERENT DIAGNOSTIC
STRATEGIES AND WHAT DO YOU THINK
HOW THEY WILL INFLUENCE THE
VALUE OF TREATMENTS.
>>THERE'S COST EFFECTIVENESS OF
THE MEAN MODEL BUT DON'T INCLUDE
DIAGNOSIS.
THEY START WITH THE DIAGNOSED
POPULATION.
WE KNOW THAT DIAGNOSTIC PROCESS
IS VERY VARIABLE AND OFTEN
COSTLY IN THE PREFERENCES PEOPLE
HAVE.
WE SHOULD ATTACHED DIAGNOSIS TO
THE ANALYSIS DURING THE BEST WE
CAN WITH ASSUMPTIONS AND
COLLECTING MORE DATA ON
PREFERENCES AND COSTS.
>>UNDERSTANDING PEOPLE'S RISK
PREFERENCES IS CRITICAL AND THE
ROLE OF RISK, UNCERTAINTY AND
PEOPLE'S ATTITUDES TOWARDS RISK
VALUABLE TO REDUCE THAT RISK AND
ALSO ONE THING WE LEARNED FROM
COVID IS THAT IT'S NOT JUST
ABOUT DIAGNOSING A PATIENT.
IT'S ABOUT POPULATION
SURVEILLANCE AS WELL TO SOME
EXTENT AND UNDERSTANDING WHO IS
AT RISK, WHO IS SUFFERING
FUNCTIONAL LIMITATIONS, WHO
MIGHT SUFFER THEM IN THE FUTURE
IF THEY DON'T.
UNDERSTANDING THE RISK CAN HELP
MAKE BETTER DECISIONS AS WELL.
THAT'S IMPORTANT TO UNDERSTAND
FROM THE EARLIER DISCUSSIONS.
>>A COUPLE YEARS AGO AT THE
RELATED DEMENTIA SUMMIT THEY
PRESENTED ON THE PREVALENCE OF
DIFFERENT PATHOLOGIES IN THE
BRAINS OF PEOPLE WHO DIED FROM
DEMENTIA AND AMYLOID ALONE WAS
LESS THAN 10%.
AS WE HAVE NEW TREATMENTS
TARGETED TO SPECIFIC
PATHOLOGIES, WE'RE GOING TO
DISCOVER MOST PEOPLE HAVE MIXED
ETIOLOGY AND THAT THE VALUE
CALCULATION WILL BE DIFFERENT
THAN IF WE ASSUME EVERYONE HAS
ALZHEIMER'S DISEASE AND THE CARE
SYSTEM WILL NEED TO CATCH UP
PRETTY QUICKLY TO ACCURATELY
DIAGNOSE THE PATHOLOGY PEOPLE
HAVE IN THEIR BRAINS WITH THE
MORE SPECIFIC TREATMENTS.
>>HELEN SHARED THE SAME POINT I
WAS GOING MAKE FROM THE
EPIDEMIOLOGY RESEARCH TYPICALLY
WHAT MOST PEOPLE TALK ABOUT IN
TERMS OF ALZHEIMER'S DEMENTIA
AND THERE'S A MIX OF DEMENTIA
AND DIAGNOSIS FROM A CLINICAL
PERSPECTIVE IT'S NOT JUST GOING
TO BE ONE THING.
IT'S NOT JUST GOING TO BE AN
AMYLOID TRACER OR COGNITION.
I THINK IN AN IDEAL WORLD WE'LL
HAVE MULTIPLE POTENTIAL
DIAGNOSTIC SIGNS FOR DEMENTIAS.
MULTIPLE DIFFERENT DEMENTIAS.
I THINK WE'LL HAVE TO CONSIDER
THE COMPLEXITY OF ALL THOSE
CONTRIBUTING FACTORS WHEN WE'RE
CONSIDERING PARTICULARLY THE
ECONOMIC BENEFITS ACTUALLY.
IT COULD BE A COMPLICATED
PICTURE TO TRY TO MAP IT ALL
OUT.
I THINK WORTHWHILE FOR SURE
WORTHWHILE AND THE BETTER
DIAGNOSTICS THE EARLIER WE CAN
INTERVENE SPEAKING AS A
CLINICIAN.
THAT'S ALWAYS FIRST AND
FOREMOST.
WHAT'S THE MOST EFFECTIVE
TREATMENT IT'S GOING TO BE
TREATMENT MOST LIKELY THAT'S
GOING TO BE TREATMENT
ADMINISTERED EARLY ON.
THIGHS ARE ALL ISSUES OF TIME
AND NEUROPATHOLOGICAL FACTORS
AND ALL NEEDS TO BE A PART OF
THE PICTURE.
>>THAT'S GREAT, THANK YOU.
PRISCILLA I'LL KICK THE BALL
OVER TO YOU.
SHOULD WE GO TO AUDIENCE
QUESTIONS?
>>YES, PRODUCTION TEAM.
IF YOU COULD UNMUTE MICHAEL
ELLENBOGEN IF YOU CAN UNMUTE
HIM.
>>THANK YOU FOR THIS.
WHILE THIS MAY BE REPETITIVE
BECAUSE MANY OF YOU KNOW MY
STORY.
AND THEY'LL FOCUS ON PEOPLE 65
AND OLDER.
I THINK IT'S VERY IMPORTANT TO
ALSO LOOK AT THE PEOPLE MUCH
YOUNGER ESPECIALLY BELOW 65.
THE IMPACT TO THOSE PEOPLE IS
ENORMOUS.
I SEE PEOPLE GOING BANKRUPT
EVERY DAY AFTER DIAGNOSIS.
IN MY CASE A TIMELY DIAGNOSIS
WOULD HAVE MEANT ME NOT GETTING
FIRED FROM MY JOB, LOSING ALL
THE HEALTH BENEFITS FROM HEALTH
INSURANCE AND EVERYTHING ELSE ON
TOP OF IT I LOST MY SALARY, FAST
FORWARD 10 YEARS LATER MY WIFE
NOW HAS TO TAKE CARE OF ME AND
HAS HAD TO LEAVE HER JOB.
THERE'S NO MONEY COMING IN
ANYMORE.
I MEAN, WE'RE PEOPLE MAKING
TOGETHER OVER $250,000.
ALL THAT IS LOST.
NOT ONLY HAS IT LOST US BUT THE
IMPACT TO THE GOVERNMENT SIDE
BECAUSE THEY'RE NO LONGER
GETTING TAXES OR MONEY AND
THEY'RE HELPING US OUT NOW.
IT'S IMPORTANT TO THINK ABOUT
THE CONSEQUENCES THOUGH IT MAY
BE A SMALL PERCENTAGE OF PEOPLE,
IT'S GOT A HUGE IMPACT ON
PEOPLE'S LIVES AND THEIR
FAMILIES GOING FORWARD.
>>THANK YOU FOR SHARING THAT
STORY.
I MIGHT DOVETAIL THAT WITH A
QUESTION IN CHAT ABOUT THINKING
ABOUT THE ECONOMIC IMPACTS OF
ALZHEIMER'S DISEASE ON THE
RETIREMENT SAVINGS OF CHILDREN
OR CAREGIVERS.
I'M WONDERING IF THERE'S ANYONE
ON THE PANEL WHO MIGHT WANT TO
PROVIDE SOME COMMENT ABOUT HOW
WE CAN ADEQUATELY MEASURE
FINANCIAL CHALLENGES THAT HAPPEN
NOT JUST TO THE PERSON WITH THE
DIAGNOSIS OF ALZHEIMER'S DISEASE
BUT THE CAREGIVER NETWORK THAT
SURROUNDS THAT INDIVIDUAL.
I'M WONDERING IF YOU KNOW
STUDIES ON THE TOPIC OR HOW TO
BEST MEASURE SECONDARY ECONOMIC
IMPACTS.
>>IT'S A HARD AND GREAT
QUESTION AND EVERYONE'S SILENT
BECAUSE I THINK IT HASN'T BEEN
SUFFICIENTLY STUDIED.
WE KNOW CAREGIVERS HAVE IMPACT
AND IT'S LIKELY -- WELL WE KNOW
THERE'S CONSIDERABLE FINANCIAL
AND ECONOMIC IMPACT AND THERE
ARE DATA SETS THAT CAN HELP DO
IT FOR THE FAMILY.
NON-FAMILY CAREGIVERS ARE OFTEN
A CHALLENGE TO FIND IN NATIONAL
DATA BUT DOESN'T MEAN IT
WOULDN'T BE USEFUL TO LOOK AT
CAREGIVERS.
>>WELL, I DON'T HEAR ANYBODY
ELSE PIPING UP SO MAYBE IF YOU
THINK OF SOMETHING AS YOU GO
ALONG FEEL FREE TO CHIME IN.
I THINK WE MIGHT ADDRESS A
QUESTION IN THE CHAT FROM IAN
KREMMER.
HAVE THERE BEEN COST
EFFECTIVENESS OR OTHER
ANALYSTSES OF PUBLIC HEALTH
INTERVENTIONS AIMED AT REDUCING
RISK FACTORS FOR DEMENTIA.
TO MAKE AN EXAMPLE LIKE ANALYSIS
AT SMOKING CREESSATION OR EXPOSE
OF CHRONIC STRESS.
>>I MENTIONED THE DATABASE MY
COLLEAGUES AND I MAINTAIN HAS
12,000 COST EFFECTIVE ANALYSES
IN THEM.
WE FOUND 87 RELATED TO DEMENTIA
CARE AND THOSE SPAN A RANGE OF
TOP
TOPICS LIKE PHARMACEUTICALS.
I DON'T KNOW IF THERE'S ANYTHING
ADDRESSING A PARTICULAR AREA.
WE CAN CERTAINLY LOOK AND SEE
BUT WE HAVE QUITE A NUMBER OF
STUDIES THAT ADDRESS
COMORBIDITIES ADDRESS PUBLIC
HEALTH OUTREACH PROGRAMS AND
THINGS LIKE THAT.
IF THERE'S NOTHING IN THE
LITERATURE THAT WOULD BE A GREAT
STUDY TO DO.
>>I THINK MANY OF YOU KNOW WE
RECENTLY ADDED A SIXFOLD TO THE
RISK REDUCTION AND HEALTHY AGING
BUT WE DON'T KNOW WHAT THE BEST
AGE TO INTERVENE IS.
IS 65 TOO LATE TO DO A SMOKING
CESSATION PROGRAM IF YOUR GOAL
IS DEMENTIA RISK REDUCTION.
WHERE SHOULD WE BE INTERVENING
AND A NUMBER OF QUESTIONS THAT
REMAIN TO BE ANSWERED IN THIS
SPACE BUT A LOT OF WORK COULD BE
DONE AS WE THINK OF VASCULAR
DEMENTIA AS SO PREVALENT IN THE
POPULATION.
THERE'S PROBABLY MORE THAT COULD
BE DONE THAT'S NOT BEING DONE
AND TIED TO DEMENTIA.
>>THERE'S ALSO AN IN THE CHAT
IN THE Q&A BOX MENTIONING THING
LIKE HEARING LOSS IS AN
ADDRESSABLE RISK FACTOR AND LOW
COST AND HIGHLY EFFECTIVE WAY OF
DEALING WITH COGNITIVE
IMPAIRMENT AND THAT'S SOMETHING
THAT NOT DISCUSSED OFTEN ENOUGH
AND MAYBE SOME OF US IN THE
RESEARCH WORLD IS FAMILIAR WITH
THE LITERATURE BUT A LOT OF
PEOPLE OUT THERE WHO ARE
EXPERIENCING HEARING LOSS MAY
NOT HAVE THE INFORMATION TO KNOW
OKAY HOW IS THIS IMPACTING THEIR
COGNITION.
PRISCILLA ARE THERE QUESTIONS WE
SHOULD ADDRESS OR SHOULD WE
CLOSE IT UP?
>>WE HAVE JUST ONE MINUTE LEFT.
PERHAPS IF YOU'RE ABLE TO
DR. NEUMANN, WE HAD SOMEONE
REQUEST THE CITATION FOR THE
CAREGIVER RESPITE STUDY THE COST
EFFECTIVENESS ANALYSIS.
I'M NOT SURE IF YOU HAD A CHANCE
TO SHARE THAT IN THE CHAT.
ALL QUESTIONS WILL BE SAVED AN
AND ADDRESS THEM AS WE GO ON.
THANK YOU VERY MUCH TO EVERYONE
FOR YOUR ATTENTION DURING THIS
SESSION AND IF I UNDERSTAND
CORRECTLY WE'RE GOING TO HAVE A
BRIEF BREAK.
I THINK EITHER JULIE OR ANDREA
WOULD YOU LIKE TO SAY SOMETHING
BEFORE WE GO TO BREAK?
>>YES, THANK YOU VERY MUCH.
I WANTED TO THANK ALL THE
PANELISTS AND SPEAKERS FOR THEIR
PRESENTATIONS AND REMARKS AND
DISCUSSION.
WE HAVE A 15-MINUTE BREAK.
WE'LL RETURN AT 2:20 EASTERN
STANDARD TIME FOR OUR FINAL
SESSION.
ENJOY THE BREAK AND SEE YOU
SOON.
>>WELCOME BACK.
I AM PLEASED TO WELCOME
DR. CRYSTAL GLOVER AND
DR. ELLIOTT CO-CHAIRS FOR OUR
FINAL SESSION, APPROACH TO
PARTICIPATORY RESEARCH AND
RETENTION IN DEMENTIA CARE
RESEARCH.
>>THANK YOU, JULIE.
THANK YOU EVERYONE FOR BEING
HERE AND STICKING AROUND FOR THE
TIME SCIENTIFIC SESSION.
LAST BUT NOT LEAST.
I'M ONE OF YOUR SESSION
CO-CHAIRS WITH DR. CERISE
ELLIOTT.
THANKS FOR ALL YOU'VE DONE WITH
ME.
THE BIGGEST GOAL OF OUR SESSION
HERE WE'RE CENTERING THINGS
AROUND HOW TO INCORPORATE,
CENTER AND FULLY CONSIDER
DEMOGRAPHICALLY DIVERSE
CAREGIVERS AND PARTNERS
THROUGHOUT THE RESEARCH PROCESS.
OF COURSE THIS IS KEY FOR
RECRUITMENT AND SUSTAINABILITY
AND HOW DO YOU GO ABOUT YOUR
RESEARCH QUESTION AND SAMPLING
OUTREACH AND ENGAGEMENT AND
ANALYSES AND INTERPRETATIONS AND
HOW TO ADDRESS CHALLENGES IN THE
RESEARCH PROCESS.
THESE DIFFERENT ELEMENTS THE
CENTERING OF THE DIVERSE
CAREGIVERS REQUIRE CONSIDERATION
OF STUDY DESIGNS ACROSS THAT MAY
GO ABOUT ADDING TO OUR TOOL KIT
IN TERMS OF HOW WE APPROACH THE
AGING RESEARCH.
PRESENTERS WILL SHARE OUR
EMERGING OR HIGHLIGHT THE
INNOVATIVE TECHNOLOGIES,
PRACTICES AND RESEARCH DESIGNS
THEY CURRENTLY USE IN TERMS OF
INCORPORATING, CENTERING AND
FOCUSSING ON DEMOGRAPHICALLY
DIVERSE CAREGIVERS.
FIRST OFF WE'LL START WITH
DR. JORDAN LEWIS.
HE WILL TAKE US BACK TO HOW WE
MAY THINK ABOUT, IDENTIFY AND
NAME CAREGIVERS AND CARE
PARTNERS THOSE BELONGING TO
DIVERSE COMMUNITY AND HAS
IMPLICATIONS FOR WHO IS INCLUDED
IN STUDIES AND RECRUITING AND
SUSTAINABILITY.
THEN WE'LL MOVE TO DR. VAN PARK.
SHE'LL SPEAK ABOUT THE ROLE OF
COMMUNITY OUTREACH AND
ENGAGEMENT.
THIS HAS BIG IMPLICATIONS FOR
RESEARCH RECRUITMENT, HAVING
EQUITABLE RECRUITMENT AND
FINALLY WE'LL END WITH
DR. FAYRON EPPS TO SPEAK ABOUT
CONTINUOUS ENGAGEMENT AND THE
ROLE WITH RETENTION OR
SUSTAINABILITY OF PARTICIPATION.
I THINK WE HAVE A FEW MINUTES
MORE SO THAT'S GREAT.
OVER TO JORDAN.
>>HOW TO FOR THE INTRODUCTION.
I APOLOGIZE FOR MY VOICE I'M
GETTING OVER A COLD AND I HAVE
UNIQUE ITE TI CHALLENGE FOR THE
RECRUITMENT OF AI/AM OR ALASKAN
CAREGIVERS INTO DEMENTIA CARE
RESEARCH.
SO STARTING TALKING ABOUT
BARRIERS TO ACCESSING DEMENTIA
CARE SPECIFICALLY IN THIS
POPULATION.
AND UNDERSTANDING MANY PEOPLE WE
WORK WITH HAVE PRECONCEIVED
IDEAS OF TREATMENT.
SEEING THEM IS NOT EFFECTIVE OR
PRIORITY WHEN THERE'S COMPETING
NEEDS IN THEIR FAMILY OR
COMMUNITY AND COMING IN THE
RESEARCH HAVING ANXIETY OR TRUST
ISSUES ABOUT OUTSIDE SUPPORTS,
BAD EXPERIENCES OR UNHAPPY
EXPERIENCES WITH THE MEDICAL
SETTING.
IT'S TIED TO THE HISTORY OF WHAT
INDIGENOUS POPULATION HAVE BEEN
THROUGH AND THE LACK OF TRUST
AND EXPERIENCE WITH RACISM IN
MEDICINE AND THE STILL LINGERING
STIGMA AROUND DEMENTIA OR MENTAL
HEALTH IN GENERAL AND BEING SEEN
AS HAVING A MENTAL HEALTH
DISORDER OR COGNITIVE IMPAIRMENT
FOR SOME COMMUNITIES CAN BE VERY
CHALLENGING AND MAY BE A BARRIER
TO ACCESSING DEMENTIA CARE.
WE ALSO KNOW THERE'S CULTURAL
ISSUES IMPACTING UNDERSTANDING
OF WESTERN MEDICINE TIED UP TO
THE FIRST BULLET WHETHER OR NOT
SEEING IT AS EFFECTIVE OR
PROVIDERS NOT WANTING TO WORK
WITH THEM TO INTEGRATE
TRADITIONAL AND WESTERN MEDICINE
TOGETHER.
THEY ALSO HAVE EXPERIENCES AND
SHARED THE DISMISSAL OF FEARS.
WHEN THEY GO TO THEIR PROVIDER
NOT BEING ABLE TO UNDERSTAND THE
CULTURAL STANDING OF WHAT IS
HAPPENING TO THEM BEING ACCEPTED
OR SHARING THE CONCERNS OR NOT
BEING HEARD.
ON TOP OF ALL THAT SOMETIMES
YOU'RE COMING INTO A CARE
SETTING WHERE YOU HAVE CULTURAL,
FAMILIAL AND COMMUNITY
PERSPECTIVES ON CARE DECISIONS
AND HAVING THOSE DIFFERENT
PERSPECTIVES, WHO DO YOU LISTEN
TO AND WHO'S IMPORTANT AND NOT
FORGETTING THE PERSON WITH
DEMENTIA HAS A SAY IN WHAT'S
GOING ON WITH THEM.
WE HEAR FROM CAREGIVERS
SPECIFICALLY THE IDEA OF
INFERIORITY OR EMBARRASSMENT OR
FEELING THEY COULD NOT DO THE
JOB AFFECTING THE PERSON THEY'RE
CARING FOR OR BEING REMOVED FROM
THEIR CARE.
THEY DON'T FEEL THEY ARE
EQUIPPED OR HAVE THE TRAINING
AND THE BULK OF THE WORK WE DO
IN TRAINING EDUCATION.
SPECIFICALLY WITH INDIGENOUS
CAREGIVER AND THE WORK WE'VE
DONE WITH INDIGENOUS AND ALASKAN
NATIVE COMMUNITIES THERE'S STILL
A STRONG COMMITMENT TO
CAREGIVER.
THERE'S A STRONG VALUE AND IT'S
AN HONOR TO CARE FOR THEM AND
CARE FOR ELDERS WHO RAISED US
AND PROVIDED FOR US AND ENGRAVED
IN EVERY GENERATION AND FAMILY
CAREGIVERS IN ADDITION TO
PROVIDING CARE FOR SOMEONE WITH
DEMENTIA OR OLDER ADULTS MY
STILL BE PARENTS AND MAY SERVE
ON TRIBAL COUNCILS AND
CAREGIVERS NOT ALWAYS IDENTIFY
WITH WHAT WE'LL TALK ABOUT
LATER.
WE ALSO KNOW THEY POSSESS WEALTH
OF KNOWLEDGE AND EXPERIENCE
WHETHER IN THE CAREGIVING REALM
AND THE KNOWLEDGE THEY WERE
RAISED WITH FROM THEIR ELDERS
SERVES AN IMPORTANT ROLE AS THEY
STEP IN THE CAREGIVER ROLE AND
SEE WHAT THEY LEARNED FROM
ELDERS PLAYING OUT UNHOW -- IN
HOW THEY CARE FOR ELDERS AND HOW
DO WE TAP INTO THE KNOWLEDGE
WHETHER THEY'RE NEW OR
EXPERIENCED BUT ENTRENCHED IN
THUR COMMUNITIES AND HAVE A
STRONG COMMUNITY CONNECTION AND
FAMILY CONNECTION TO DEVELOP
CULTURALLY RESPONSIVE TRAINING
AND EDUCATION.
NOT ONLY FOR CAREGIVERS BUT FOR
FUTURE CAREGIVERS AND PUTTING
THAT EMPHASIS ON WHAT WE'RE
LEARNING FROM YOU TODAY WILL
HELP SEVEN GENERATIONS FROM NOW.
AND HOW DO WE TRANSLATE WHAT
WE'RE LEARNING FROM THEM TO ALSO
EDUCATE PROVIDERS WHO EITHER
WORK DIRECTLY WITH THE PROVIDER
OR CAREGIVERS OR WORK WITH
CAREGIVERS OR PEOPLE WITH
DEMENTIA.
WHEN I WORKED WITH THE DISCOVERY
TEAM AND OTHER RESEARCH WE
DEVELOPED ADVISORY COMMITTEES
FOR THE PROJECTS AND THE GOAL IS
TO GET THE INTENSE OR CLOSE
CONNECTION TO THE COMMUNITY,
LEARN THE COMMUNITY VALUES AND
SO WE AIM TO RECRUIT CURRENT AND
PREVIOUS DEMENTIA CAREGIVERS
FROM THE LOCAL COMMUNITY WHO
WANT TO LEARN FROM THEIR
EXPERIENCES.
THEY KNOW HOW BEST TO MAKE THE
PROJECT SUCCESSFUL AND BE
GROUNDED IN THE COMMUNITY VALUES
AND CONTEXT.
WE ALSO WORK TOWARDS RECRUITING
TRIBAL HEALTH AND AGENCY
PROVIDER.
AS WELL AS ANYONE ELSE WHO
SUPPORTS WITH CAREGIVER PROGRAMS
OR SERVICES OR CAREGIVERS
THEMSELVES.
THE GOAL IS TO DEVELOP CAREGIVER
PROGRAMS.
WE WANT TO INVOLVE EVERYONE WHO
HAS A SAY OR WORKS DIRECTLY WITH
CAREGIVERS IN SOME CAPACITY.
ALSO HAVING ADVISORY COMMITTEES
MAKING SURE THEY'RE CULTURALLY
APPROPRIATE AND RESPONSIBLE AND
USE THE APPROPRIATE LANGUAGE AND
CARE AND VALUES, APPROACHES TO
CARE AND ALSO OTHER AREAS AROUND
SURFACE CHANGES AROUND WHAT KIND
OF SYMBOLS AND PHOTOS AND WHAT
IS APPROPRIATE TO USE.
FINALLY THE ADVISORY COMMITTEES
HELP US ASSIST US IN REACHING
THOSE WHO DO NOT IDENTIFY AS A
CAREGI
CAREGIVER.
GIVING CARING FOR ELDERS IS A
CULTURAL VALUE THEY RAISED WITH
AND MAY CARE FOR SOMEONE WITH
MEMORY LOSS OR SOMEONE IN THEIR
HOME.
WE NEED TO BE STRATEGY AND WORK
WITH OUR COMMITTEES TO LOOK AT
WORDING, LOOK AT CREATIVITY IN
OUR RECRUITMENT STRATEGIES AND
FIGURE OUT HOW TO WE ACCESS THE
POPULATION THAT DOESN'T ADHERE
TO THE IDEA OF A CAREGIVER.
SO SOME RECOMMENDATIONS I'D LIKE
TO LEAVE YOU WITH.
WHEN YOU'RE WORKING WITH YOUR
ADVISORY COMMITTEE AND STARTING
THE PROJECTS MAYBE NOT ALWAYS
STARTING OFF WITH USING THE TERM
CAREGIVER WHEN RECRUITING.
SEEK OUT OTHER WORDS AND TERMS
AND OTHER STATEMENTS THAT MAY BE
APPROPRIATE.
AGAIN IT'S SEEN AS A PRIVILEGE
OR HONOR TO CARE FOR THOSE WHO
CARED FOR YOU AND HOW WE CHANGE
THE LANGUAGE.
AND SO MANY TIMES WE THINK WE
ASSUME BEING A CAREGIVER IS A
BURDEN AND IS A STRESSFUL
BURDENSOME JOB BUT MANY
CAREGIVERS EXPERIENCE SOME
STRESS BUT FOCUS ON THE
BLESSINGS AND THE THINGS THAT
ARE IMPORTANT AND DESPITE
CHALLENGES KNOW THEY'RE DOING IT
FOR THE RIGHT REASONS AND GIVE
THEIR LOVED ONE THE BEST LIFE
THEY CAN.
THE THIRD IS THEY MAY BE
DIRECTLY INVOLVED WITH CARE.
FOR EXAMPLE TYPICAL PROGRAMS
FOCUS ON DIADS.
AND WE EXPAND THE DEFINITION
LOOKING AT DIFFERENT DEFINITIONS
OF FAMILIES AND WHEN WE LOOK AT
CAREGIVERS AND RECEIVING
SERVICES MULTIPLE CAREGIVERS ONE
CAREGIVER DOES THE FINANCIALS
AND ANOTHER IS RESPONSIBLE FOR
THE HOME BASED CARE AND ANOTHER
INVOLVED IN A DIFFERENT ASPECT.
THEY COME TOGETHER TO SUPPORT
THAT PERSON.
EXPANDING THAT DEFINITION.
AND THEN FINALLY PROVIDING
RESPITE, TRANSPORTATION,
SUPPORT, FOOD.
FOOD IS BIG IN OUR COMMUNITIES.
PROVIDING TRANSPORTATION.
HOW DO WE DEVELOP RESPITE OR
FIND WAYS WHEN WE'RE ENGAGING
CAREGIVERS IN RESEARCH WE
SUPPORT THEM AND LET THEM KNOW
WE CARE ABOUT THEM AND PROVIDE
THAT NEEDED SUPPORT THEY CAN
TAKE THE TIME AWAY EITHER GO TO
THEM PROVIDE TRANSPORTATION TO
AND FROM WHERE THE RESEARCH IS
HAPPENING SUCH AS A FOCUS GROUP.
PROVIDE SUPPORT.
ARE THERE WAYS TO HAVE COMMUNITY
MEMBERS AVAILABLE TO STEP IN AND
PROVIDE RESPITE BY PROVIDING
DAYCARE SUPPORT FOR A COUPLE
HOURS OR WHATEVER ELSE IS
NEEDED.
THIS IS VERY COMMUNITY SPECIFIC.
MAKING SURE WE WORK OUR ADVISORY
COMMITTEES AND REMEMBER EACH
COMMUNITY HAS DIFFERENT NEEDS
AND STRENGTHS AND FIGURING OUT
WHAT THEY ARE AND INTEGRATING
THEM TO YOUR RESEARCH STUDY.
THANK YOU FOR YOUR TIME.
I APPRECIATE IT.
>>I'LL TALK ABOUT DEMENTIA
CAREGIVING AND COMMUNITY-BASED
PARTICIPATORY RESEARCH AND
PROJECTS.
SOW BRIEFLY MANY OF YOU ARE
LIKELY FAMILIAR WITH WHO ASIAN
AMERICANS ARE.
ASIAN AMERICANS ARE THE MOST
RAPIDLY GROWING POPULATION OF
OLDER AMERICANS.
THEY ARE AT RISK FOR DEMENTIA.
THERE IS SIGNIFICANT DIVERSITY
AMONG ASIAN AMERICANS WITH OVER
100 LANGUAGES AND DIALECTS
SPOKEN AND MORE THAN 50 CULTURAL
GROUPS.
THERE'S DIVERSITY IN IMMIGRATION
PATTERNS, RELIGIONS, DIETS AND
SOCIAL ECONOMIC STATUS.
COMPARED TO OTHER ETHNIC
CAREGIVERS ASIAN AMERICANS ARE
LIKELY TO WANT HEALTH CARE
PROFESSIONALS TO ASK ABOUT CARE
RECIPIENTS NEEDS AND FIND THEIR
ROLE TO BE EMOTIONALLY STRESSFUL
AND MOST FELT THEY DID NOT HAVE
A CHOICE IN TAKING ON CAREGIVING
RESPONSIBILITIES.
THERE'S AN EVIDENCE BASED
PROGRAM FOR VIETNAMESE DEMENTIA
CAREGIVERS FUNDED BY THE
ALZHEIMER'S DISEASE.
THE FIRST THING WE DID WAS A
NEEDS ASSET.
WE DID QUALITATIVE INTERVIEWS
WITH HEALTH CARE PROFESSIONALS
AND STAKEHOLDERS WHO SERVE
VIETNAMESE AMERICANS AND ASKED
THEM ABOUT THEIR THOUGHTS ABOUT
DEMENTIA CAREGIVING PROGRAM FOR
VIETNAMESE AMERICANS AND
ELICITED SUGGESTIONS HOW TO GO
ABOUT DOING SO.
ONE OF THE MAJOR RECOMMENDATIONS
WAS USING COMMUNITY-ENGAGED
RESEARCH AND PARTICIPATORY
RESEARCH PRINCE PELS --
PRINCIPLES IN OUR RECRUIT MANY
AND TAILORED OUR OUTREACH AND
STUDY MATERIALS AND OF COURSE
HAVE BILINGUAL, VIETNAMESE
STAFF.
WE NEED TO APPRECIATE CULTURAL
VALUES AND PRACTICES AS WELL AS
THE HISTORY OF THE JOURNEY FOR
VIETNAMESE AMERICANS TO THE U.S.
OVERALL THE PARTICIPANTS FROM
THE CONTROL AND INTERVENTION
ARMS OF THE STUDY WERE SATISFIED
WITH THE PROGRAM.
WHILE WE HAD MORE POSITIVE
FINDINGS IN REGARDS TO WELL
BEING AND MENTAL HEALTH FOR
EXAMPLE WHERE THE INTERVENTION
PARTICIPANTS WHAT WAS SURPRISING
TO US WAS THAT THE CONTROL
PARTICIPANTS HAD POSITIVE
FEEDBACK AND OUTCOMES AS WELL.
AND WE DISCOVERED THAT BECAUSE
THERE'S A LACK OF MATERIALS IN
VIETNAMESE AND AT THIS TIME OF
THE STUDY THIS WAS THE FIRST
STUDY IN THE U.S. IN THE AREA
FOR VIETNAMESE AMERICAN DEMENTIA
CAREGIVERS.
DUE TO THE LIMITED RESOURCES IN
DEMENTIA CARE FOR VIETNAMESE
AMERICANS IN THE LANGUAGE OF
VIETNAMESE ALL OUR PARTICIPANTS
PARTICIPATED IN VIETNAMESE, BY
THE WAY, THEY HAD POSITIVE
FEEDBACK AND DID NOT HAVE
TESTING CONTROLS.
WHAT WE REALIZED WAS THERE'S A
GREAT NEED FOR DEMENTIA CARE --
CULTURALLY TAILORED DEMENTIA
CARE PROGRAMS FOR VIETNAMESE
AMERICANS.
THERE'S A PICTURE OF ONE OF THE
THINGS WE TAUGHT DURING OUR
PROGRAM.
MINDFUL BREATHING, AND OTHER
THINGS THAT WERE INCLUDED IN THE
PROGRAM WERE HOW TO COMMUNICATE
WITH YOUR HEALTH CARE PROVIDER
AND HOW TO ASK FAMILY AND
FRIENDS FOR HELP.
HOW TO ENCOURAGES PARTICIPANTS
HOW TO ENGAGE IN PLEASANT
ACTIVITIES, DAILY.
I WANTED TO SHARE A NEW PROJECT
FUNDED BY PCORI CALLED KIMCHI
AND IT'S COREIANS INVESTED IN
MAKING CAREGIVERS HEALTH
IMPORTANT AND WE LOOKED AT THE
LITERATURE WHAT'S BEEN LOOKED AT
IN CAREGIVERS AND SPECIFICALLY
ARE THERE ANY PUBLISHED DEMENTIA
CAREGIVER INTERVENTION STUDIES
IN THIS AREA OF DEMENTIA
CAREGIVING.
IN OUR PAPER WE STATED WE DID
NOT FIND ANYTHING,
UNFORTUNATELY.
AS FIRST STEPS OF TRYING TO GET
TO THAT POINT OF DEVELOPING A
CULTURALLY AND LINGUISTICALLY
DEMENTIA CAREGIVING PROGRAM FOR
KOREAN AMERICANS AND
SPECIFICALLY INTERVENTION
PROGRAM WE DEVELOPED KIMCHI TO
ENGAGE WITH THE COMMUNITIES,
KOREAN AMERICAN STAKEHOLDERS
ABOUT WHAT DEMENTIA CAREGIVING
IS OR UP TO DATE INFORMATION ON
CARE AS WELL AS ADVANCED
DIRECTIVES.
IF YOU'D LIKE TO LEARN MORE, THE
WEBSITE IS HERE AND YOU CAN SEE
HERE WE HAVE BILINGUAL KOREAN
AND ENGLISH MATERIALS AS WELL.
AND WE HAVE THIS REGISTRY AND WE
HAVE A MULTILINGUAL WEBSITE AND
OTHER OUTREACH MATERIALS.
IF YOU VISIT OUR WEBSITE YOU'LL
SEE ONE OF THE THINGS WE FOCUS
ON IS CAREGIVING, DEMENTIA
CAREGIVING, SPECIFICALLY IN
COLLABORATION WITH OUR COMMUNITY
ADVISORY BOARD AND OTHER
COMMUNITY PARTNERS.
WE HAVE IDENTIFIED SEVERAL
CAREGIVERS WILLING TO SHARE
THEIR STORY AND ONE OF THE
THEMES OUR COMMUNITY MEMBERS
CONTINUALLY ASK US OR MENTION IS
HOW THERE'S SO MUCH STIGMA AS IT
RELATES TO ALZHEIMER'S DISEASE
AND RELATED DEMENTIA AND ALL
THAT ENCOMPASSES.
BY US HAVING THESE CAREGIVING
AUDIO STORIES AVAILABLE, IT'S
OUR WAY OF SHOWING TO THE
COMMUNITY THAT YOUR NOT ALONE
AND IT'S OKAY TO REACH OUT FOR
HELP AND TO SHARE YOUR STORY.
IN HERE IS THE WEBSITE FOR CARE
AND I WANT TO THANK THE
CO-CHAIRS AND THE CAREGIVERS.
>>THANK YOU, DR. PARK.
LAST BUT NOT LEAST, DR. EPPS.
>>THANK YOU, CRYSTAL.
GOOD AFTERNOON, EVERYONE.
I WANT TO TALK ABOUT THE
COMMUNITY RELATIONSHIPS AND HOW
THEY'RE CRITICAL FOR THE RECRUIT
MANY OF AFRICAN AMERICAN
FAMILIES AND I'M AN ASSOCIATE
PROFESSOR AND IN THE OFFICE OF
DEI AT EMORY UNIVERSITY SCHOOL
OF NURSING.
WE'LL START OFF WITH COMMON
CHALLENGES OF RECRUITING AFRICAN
AMERICANS FOR DEMENTIA RESEARCH.
YOU PROBABLY HEARD SOME EARLIER
WHEN JORDAN WAS SPEAKING.
ONE OF THE FIRST THINGS I WANTED
TO SAY BEFORE I GO THROUGH THE
LIST IS SOMETHING THAT
DR. ANDERSON SAID ABOUT A YEAR
OR SO AGO.
THESE POPULATIONS ARE NOT HARD
TO REACH AND WE'VE SEEN THAT SO
OFTEN AND READ THAT THAT AFRICAN
AMERICAN FAMILIES, CAREGIVERS
ARE HARD TO REACH AND THAT'S NOT
THE CASE.
THEY ARE NOT.
WE ACTUALLY NEED TO UNDERSTAND
THEIR THOUGHTS ABOUT RESEARCH
AND ONE IS CLEAR DISRUPT OF
RESEARCHERS AND RESEARCH STILL
EXISTS.
AND WE KNOW OF SOME OF THE
COMMON OR HISTORICAL STUDIES
THAT HAVE INITIATED THE MISTRUST
BUT I WANT TO LET YOU ALL KNOW
THAT STILL GOES ON TODAY.
AND SO IT'S VERY IMPORTANT THAT
WE TRY TO WORK TOWARD BUILDING
THAT TRUST.
AND LETTING THEM KNOW.
THROUGH MY PRESENTATION I'LL BE
EMBEDDING RECOMMENDATIONS.
ONE OF THE THINGS FOR US TO
BUILD THAT TRUST IS BEING OPEN
AND SHARING EVERYTHING THEY NEED
TO KNOW ABOUT OUR RESEARCH.
BEING THERE TO ANSWER THE
QUESTIONS.
THAT'S REALLY KEY.
THERE'S A FEAR AND DISRUPT AND
EFFORT TO KEEP INFORMATION
CONFIDENTIAL AND PRIVATE AND
THAT COMES UP A LOT WHEN I WORK
IN THE COMMUNITY.
PEOPLE ARE REALLY FEARFUL THAT
OTHERS ARE GOING TO KNOW WHAT'S
GOING ON.
WHEN WE'RE LOOKING AT DEMENTIA
THIS IS SOMETHING MANY STILL
DON'T FEEL COMFORTABLE SHARING
WITH THEIR FAMILY AND CO-WORKERS
AND CHURCH FAMILY AND WE NEED TO
KEEP IT PRIVATE AND WE NEED TO
RESPECT THAT.
I WILL TELL YOU MANY TIMES I
FEEL I'M TESTED WHEN I'M IN THE
COMMUNITY BECAUSE PEOPLE SHARE
THINGS WITH ME AND I'M THINKING
THEY'RE WATCHING ME AND
OBSERVING TO SEE IF I'M GOING TO
SHARE IT WITH THE NEXT PERSON
BUT I DON'T.
THAT'S HOW I'VE BEEN ABLE TO
BUILD THE TRUST.
I'VE HAD PROMINENT FAMILIES
REACH OUT TO ME, FAITH LEADERS
NOW TRUSTING ME TO SEND THEIR
CHURCH MEMBERS, THEIR
PARISHIONERS TO ME IS ALL ABOUT
BUILDING THE TRUST AND SHOWING
THEM I CAN KEEP THINGS PRIVATE
AND CONFIDENTIAL.
ALSO IN THE AFRICAN AMERICAN
COMMUNITY THERE'S OTHER NEEDS
AND WE HAVE TO THINK OF MANY
INDIVIDUALS ARE WORKING PROBABLY
MORE THAN ONE JOB.
ALSO TAKING CARE OF GRAND KIDS.
THERE'S A LOT OF THINGS THEY'RE
DOING.
WE NEED TO BE MINDFUL OF THAT
AND KNOW OUR RESEARCH IS
IMPORTANT FOR US AND IS A
PRIORITY FOR US BUT MAY NOT BE
FOR THEM.
SO AGAIN JUST KEEPING THAT IN
MIND.
THE NEXT IS HAVING INFLEXIBLE
RESEARCH PROTOCOLS.
AND I KNOW SOME OF THE EARLIER
PRESENTATIONS I BELIEVE
YESTERDAY SOMEONE SPOKE ABOUT
PROMOTING EQUITY IN OUR RESEARCH
AND THIS IS ONE OF THE THINGS I
DO MY BEST WITH OR TRY TO WHEN
WE HAVE RESEARCH PROTOCOLS
KNOWING THEY NEED TO BE FLEXIBLE
AND THEY NEED TO BE ABLE TO
BEND.
WHEN YOU'RE WORKING UNDER THE
COMMUNITY AND I WORKED WITH THE
AFRICAN AMERICAN COMMUNITY
EVERYTHING MAY IN THE GO
STRICTLY AS I WROTE IN MY
PROTOCOL AND NEED TO BE OPEN TO
THAT AND BEFORE I GO OUT IN THE
COMMUNITY AND RECRUIT I THINK
ABOUT PLAN B, PLAN C, PLAN D.
THAT'S VERY IMPORTANT BECAUSE
I'M PROBABLY GOING TO GO THROUGH
ALL THOSE PLANS AND THINGS COME
UP.
I WANT TO THINK ABOUT THE
CRITERIA.
THE INCLUSION/EXCLUSION
CRITERIA.
SOME OF US WANT TO BE SO STRICT
BUT WE LEAVE MANY PEOPLE OUT SO
WE NEED TO THINK ABOUT THE
TIMING OF WHEN WE'RE DOING
CONSENT.
THE TIMING OF THE EVENTS WE WANT
TO RECRUIT AT.
IS THERE GOING TO BE A TIME MANY
PEOPLE IN THE COMMUNITY WE'RE
TARGETING WILL BE AVAILABLE.
THAT'S IMPORTANT AND WE DON'T
WANT TO BEND OUR PROTOCOLS AND
THINGS TOO MUCH WHERE IT'S GOING
TO THREATEN THE SCIENCE.
WE DON'T WANT TO DO THAT BUT DO
NEED TO KEEP IN MIND THE
COMMUNITIES WE'RE WORKING WITH
AND HOW WE CAN BEST ALIGN OUR
RESEARCH TO THEIR NEEDS SO
DEVELOPING RELATIONSHIPS WITH
MINORITY-SERVING COMMUNITIES.
THIS IS ONE OF THE THINGS I DO
IN MY WORK IN ORDER FOR ME TO
RECRUIT.
I DO WORK WITH FRATERNITIES AND
SORORITIES.
THIS IS KEY AND NOT ONLY FOR
FRATERNITIES AND PRIORITIES BUT
OTHER CIVIC ORGANIZATIONS AND
ORGANIZATIONS THAT HAS
PREDOMINANTLY BLACK MEMBERSHIP.
PARTNERING WITH THEM IS KEY.
BECAUSE WITHIN THEIR MEMBERSHIP
THEY HAVE CAREGIVERS AND HAVE
PERSONS THAT HAVE CHRONIC
ILLNESSES AND OTHER THINGS WE'RE
LOOKING FOR AND HEALTH IS
IMPORTANT TO THEM.
SO ESTABLISHING THE PARTNERSHIPS
IS KEY AND LET'S NOT OVERLOOK
BARBERSHOPS AND HAIR SALONS.IN
THE BLACK COMMUNITY IT'S A KEY
PLACE.
OF GATHERING AND IT'S IMPORTANT
WE REACH OUT TO THEM AND PARTNER
WITH THEM.
THERE'S A LOT OF PROGRAMS THAT
DO EXIST ESPECIALLY WITH MENTAL
HEALTH TRAINING FOR BARBERS AND
HAIRSTYLERS BUT I DON'T WANT US
TO STOP THERE.
I THINK THERE'S SO MANY THINGS
THAT CAN BE DONE BEYOND MENTAL
HEALTH TRAINING.
AND FOR THOSE WHO MAY NOT
UNDERSTAND WHY IS IT PARTNERING
WITH THE BARBERSHOP SO
IMPORTANT?
IN THE BLACK COMMUNITY THIS IS
WHERE YOU COME AND THIS IS
ALMOST THERAPY.
THIS IS WHERE YOU LET EVERYTHING
OUT.
THIS IS ALSO THE PLACE WHERE YOU
FIND INFORMATION.
YOU SEEK RESOURCES AND YOU SEEK
SUPPORT HERE.
AS I THINK OF MY PERSONAL LIFE
I'D GO TO MY HAIRSTY STYLEST AN
WOULD ASK IF SHE KNOWS SOMEONE
TO FIX SOMETHING IN MY HOUSE AND
UP RETURN SHE HAS SENT ME
SEVERAL CAREGIVERS SUPPORTING
SOMEONE LIVING WITH DEMENTIA
BECAUSE WHEN THEY GET IN HER
CHAIR THEY OPEN UP ABOUT THEIR
LIFE AND CHALLENGES AND HELP
THEY NEED.
SHE'S ABLE TO PROVIDE EDUCATION
AND SAY I KNOW WHO YOU NEED TO
CALL.
THIS IS WHY IT'S IMPORTANT TO
NOT OVERLOOK BARBERSHOPS AND
HAIR SALONS.
NEXT IS PLACE OF WORSHIP AND
CHURCHES.
THIS IS ANOTHER GATHERING PLACE
FOR AFRICAN AMERICAN INDIVIDUALS
AND FAMILIES AND WE CANNOT
OVERLOOK THEM AND IT'S NOT US
GOING IN AND WE WANT TO
ESTABLISH THE RELATIONSHIPS.
MANY THINK FAITH LEADERS ARE
HARD TO REACH BUT THEY'RE NOT.
YOU JUST HAVE TO GO TO THEM AND
EXPLAIN TO THEM THE SENSE OF
URGENCY, WHY THIS IS NEEDED.
TAKE YOUR TIME AND EXPLAIN THE
RESEARCH.
YOU WOULD BE SURPRISED HOW
THEY'LL OPEN UP THEIR CHURCH FOR
YOU.
WEEKS AGO A BISHOP OPENED UP HIS
CHURCH TO COLLECT SURVEYS AFTER
WORSHIP SERVICE.
HE MADE THE ANNOUNCEMENT DURING
WORSHIP AND ASKED THEM TO
PARTICIPATE IN OUR SURVEY.
OUT OF EVERYONE THERE WE GOT 90%
OF INDIVIDUALS THAT COMPLETED
OUR SURVEY.
MANY SAID THIS WILL NOT HAPPEN.
ALSO ESTABLISHING A PARTNERSHIP
WITH THE FAITH COMMUNITIES AND
WE'RE PUTTING ON A DEMENTIA
SUMMIT.
WE TALK ABOUT THE ROLE OF THE
BLACK CHURCH AND THAT WILL BE
HELD NEXT YEAR BUT AGAIN THAT'S
THROUGH PARTNERSHIP WITH OUR
FAITH COMMUNITIES.
THEY WANT TO KNOW HOW THEY CAN
BETTER SERVE THEIR PRIGS NERS.
-- PARISHIONER.
SO PEOPLE HAVE COME TO ME AND
ASKED HOW TO ENGAGE WITH THE
COMMUNITY TO CONDUCT RESEARCH.
EARLIER THIS YEAR SOMEONE SAID
HOW DO YOU DO IT?
ONE OF THE FIRST THINGS IS
LISTENING, BEING RESPONSIVE,
BUILD TRUST, AND BE PRESENT AND
ACTIVE.
AND MANY SAY WE LISTEN BUT WE
WANT TO MAKE SURE THAT WE ALSO
ARE RESPONSIVE AND HEAR WHAT
THEY'RE SAYING.
BUILD THE TRUST AND BE PRESENT
AND ACTIVE.
I SEE MY TIMER'S OUT SO I'LL RUN
THROUGH THE REMAINDER OF THE
SLIDES.
10 MINUTES WENT QUICK.
ENGAGING IN COMMUNITY PARTNERS
AND RECRUITMENT.
THIS IS JUST AN EXAMPLE FOR A
CAREGIVER BLACK STUDY FUNDED
THROUGH THE RF FOUNDATION FOR
AGING WHERE I PARTNERED WITH
BLACK ORGANIZATIONS TO HELP
RECRUIT AND WE RECRUITED 75
BLACK CAREGIVERS.
THEY ASKED FOR MONTHLY MEETS AND
BECAME PART OF MY DESIGN.
THEY WANTED MONTHLY MEETINGS TO
LEARN ABOUT THE PROJECT AND MAKE
RECOMMENDATIONS AND HEAR ABOUT
THE RESULTS.
AND THIS IS AN EXAMPLE OF THE
FLYER.
THEY SAID NO, YOU NEED TO GO
BACK.
WE WANT OUR LOCALS ON FLYERS
BECAUSE IF WE PARTNER WITH YOU
AND WILL PASS THIS OUT AND HELP
RECRUIT, WE NEED TO SHOW WE ARE
PART OF THIS RESEARCH AND NEED
TO BE ON YOUR FLYER.
I WANTED TO SHARE THAT EXAMPLE
WITH YOU.
I THANK YOU FOR YOUR TIME.
FEEL FREE TO REACH OUT TO ME IF
YOU HAVE FURTHER QUESTIONS AND
YOU CAN FIND MORE INFORMATION
THROUGH FACEBOOK, TWITTER AND
INSTAGRAM.
THANK YOU.
>>AND NOW WE'LL GO THROUGH NEXT
STEPS AND WALKS YOU THROUGH THE
FACES OF RESEARCH OR BIG PIECES.
FIRST STARTING WITH NOMENCLATURE
AND DEFINING WHO OR WHAT IS A
CAREGIVER OR CARE PARTNER AMONG
DEMOGRAPHICALLY DIVERSE
COMMUNITIES BY CONCEPTUALIZING
AND SETTING TERMS NOT ONLY
CULTURALLY COMPETENT, ACCEPTABLE
AND INVITING.
IT HAS IMPLICATION FOR WHO IS
TAKING PART IN RESEARCH AND WHO
WE'RE TRYING TO REACH AND
SAMPLING, ENGAGEMENT AND
RECRUITMENT.
SECOND IS THE EXAM NATION OF
DESIGN AND HOW CAN WE MOVE
BEYOND QUALITATIVE AS THE GOLD
STANDARD AND EXAMINING
CAREGIVING AMONG DEMOGRAPHICALLY
DIVERSE GROUPS AND LOOKING AT
APPROACHES AND STRATEGIES FOR
EQUITABLE SAMPLING AND
RECRUITMENT AND RETENTION.
ALSO TO FOCUS ON NOT ONLY THE
UNDER REPRESENTED INCLUDES OR
UNDER INCLUDED GROUPS
HIGHLIGHTED BY JORDAN AND VAN
AND OTHERS BUT SIMULTANEOUSLY
EXPAND OUT TO WHAT WE TERM
PRIORITY POPULATIONS INCLUDING
CAREGIVERS WHO BELONG TO THE
LGBTQ PLUS POPULATIONS AND
LOOKING AT QUALITATIVE AND MIXED
DESIGN THINK AG APPROACHES AND
ADD TO OUR TOOL KIT OF RIGOROUS
STUDY DESIGNS TO UNDERSTAND CARE
PARTNER AND CAREGIVING RESEARCH.
AND LOOKING AT WHAT HAPPENS
AFTER THE LOVED ONE PASSES AND
WHAT DOES A CAREGIVERS LIFE
LOOKS LIKE ONCE THEY LOSE THE
INDIVIDUAL IN TERMS OF THEIR
HEALTH AND MENTAL HEALTH AND HOW
THEY RELATE TO THOSE IN THE
ENVIRONMENT.
WE'LL WELCOME THREE PANELISTS,
MARTHA WILLIAMS AND CHRISTINE
NGUYEN AND DR. REID.
>>WE'LL START WITH THE FIRST
QUESTION FOR OUR PANELISTS.
WHY DID YOU WHY DID YOU DECIDE
TO DO RESEARCH AND START WITH
MS. WILLIAMS.
>>IT'S SIMPLE.
I'M FROM AN INDIAN RESERVATION
AND THE NEEDS ARE GREAT.
MY DAD HAS PARKINSON'S AND MY
MOM HAS ALZHEIMER'S AND NOT
UNDERSTANDING IT MYSELF IT WAS
IMPORTANT TO BE PART OF
SOMETHING GREATER THAN WHAT I
WAS DOING.
>>THANK YOU, MARTHA.
CHRISTINE, YOUR THOUGHTS?
>>THREW.
THANKS FOR HAVING ME HERE.
I TRAINED AS A DOCTOR AND AS A
DOCTOR I THOUGHT OF RESEARCH AS
SOMETHING YOU CONDUCTED WITH
OTHER PEOPLE BUT A LOT OF US
WILL HAVE A FRIEND OR FAMILY
MEMBER WITH DEMENTIA AND I
WONDERED IF I WOULD DEVELOP
DEMENTIA.
I TALKED TO OTHER CAREGIVERS AND
PART OF A FACEBOOK GROUP FOR
PEOPLE WHO TAKE CARE OF PEOPLE
WITH ALZHEIMER'S OR DEMENTIA AND
I HEAR THE SAME THING.
WHEN YOU DEAL WITH IT YOU'RE
FIGURING IT OUT FOR THE FIRST
TIME ON YOUR OWN.
YOU DON'T KNOW WHAT TO EXPECT OR
WHAT'S THE TIME LINE OF WHAT'S
GOING TO HAPPEN TO YOUR LOVED
ONE.
YOU DON'T KNOW HOW TO HELP YOUR
LOVED ONE OR KNOW IF WHAT YOU'RE
DOING IS HELPFUL OR HARMFUL AND
THEN YOU EVEN WONDER HOW YOU'LL
KEEP GOING WHEN YOU DON'T REALLY
EXPECT THIS TO GET BETTER.
WE THINK IT'S GOING TO GET
BETTER AND YOU'LL BE DONE.
BUT HOW DOES IT GET BETTER AND
YOU WONDER THAT AND YOU WONDER
HOW TO HELP YOUR LOVED ONE.
FOR ME IT WAS ON TOP OF LANGUAGE
AND CULTURAL BARRIERS.
I WAS BORN IN VIETNAM AND MY
PARENTS WERE REFUGEES AND
THERE'S STIGMA.
MY PARENTS SPOKE GREAT ENGLISH
WHEN THEY DIDN'T HAVE DEMENTIA
BUT WHEN THEY DEVELOPED DEMENTIA
THEY STOPPED SPEAKING ENGLISH.
WHAT DO YOU DO THERE?
HOW DO YOU FIND CARE AND HELP?
SOMETIMES I LOOK THROUGH
PAMPHLETS AND I DON'T KNOW IF IT
APPLIES SO I WAS INTERESTED IN
WHAT DR. PARK SPOKE ABOUT
SPECIFICALLY LOOKING AT ASIAN
AMERICANS.
>>THANK YOU.
DEACON REID.
>>THANK YOU FOR ALLOWING ME TO
HAVE A LITTLE BIT OF TIME.
MY WHY IS MY WIFE.
MY WIFE WAS DIAGNOSED WITH EARLY
ONSET ALZHEIMER'S AT THE YOUNG
AGE OF 50 IN 2017.
AT THAT MOMENT WE RECOGNIZED WE
WANTED TO ADVOCATE FOR OUR
CHILDREN.
WE WANTED TO ADVOCATE FOR OUR
COMMUNITY BECAUSE AS WHAT'S BEEN
STATED AND PARTICULAR IN THE
BLACK COMMUNITY WE DON'T TALK
ABOUT ALZHEIMER'S.
WE DON'T TALK ABOUT DEMENTIA A
LOT.
SO BECAUSE OF THAT WE WANTED TO
CONTINUE TO ADVOCATE BOTH FOR
THOSE WITH ALZHEIMER'S AND
DEMENTIA AND THE CAREGIVERS
WHICH UNFORTUNATELY ARE
UNRECOGNIZED IN SO MANY WAYS
BECAUSE THE FOCUS IS TYPICALLY
ON THE PATIENT AND NOT
NECESSARILY THE CAREGIVER.
I USE THE TERM CARE PARTNER
SINCE I'M CARING FOR MY LOVELY
WIFE.
BUT THAT'S MY WHY.
>>NOW WOULD BE GREAT TIME TO
GET THE PANEL'S INPUT ON THE
GAPS AND OPPORTUNITIES WE SET
FOR FORTH SESSION EIGHT AND HOW
WE SPEAK ABOUT CAREGIVERS AND
DEACON REID REFERS HIMSELF AS A
CARE PARTNER AND IT'S IMPORTANT
TO LOOK AT WHO PROVIDE CARE WITH
THOSE LIVING WITH DISEASE,
DEMENTIA.
AND HOW WE MAY CAPTURE THE
SENSITIVE RICH BUT COMPLEX DATA
AND THE LAST IS EXTENDING OUT
CARE PHASES INTO WHEN THE PERSON
WITH DEMENTIA PASSES AWAY.
I'D LOVE TO HEAR THE GAPS AND
OPPORTUNITIES.
DR. NGUYEN CAN WE START WITH
YOU?
>>I HOPE WHEN WE TOOK ABOUT
CAREGIVING AND OUTREACH WE MOVE
AWAY FROM A LOT OF JARGON.
EVEN THE TITLE OF THE MEETING I
WROTE DOWN BECAUSE IT WAS A
MOUTHFUL FOR ME.
THE SUMMIT ON CARE, SERVICES AND
SUPPORT FOR THOSE LIVING WITH
CAREGIVERS AND SUPPORT AND I
CAN'T BREATHE.
I CAN BARELY USE ONE BREATH TO
SAY THAT.
WHEN YOU USE LANGUAGE SO SUPER
SCIENTIFIC AND SPECIFIC AS
SCHOLARS TEND TO DO IT'S A TURN
OFF TO LAY PEOPLE.
WE NEED TO THINK OF SPEAKING IN
A LANGUAGE THAT PEOPLE CAN
UNDERSTAND.
THAT'S ONE THING I REALLY I
THINK A LOT ABOUT IN ANY SORT OF
THING WHEN YOU DEAL WITH BEING
IN SOME SORT OF HEALTH CARE
VERSUS OTHER SITUATION TRYING TO
MOVE AWAY FROM THE JARGON.
>>THANK YOU, CHRISTINE, THAT'S
GREAT.
MARTHA?
MS. WILLIAMS ANY THOUGHTS?
>>I AGREE WITH WHAT SHE HAD
SAID.
MEETING PEOPLE WHERE THEY'RE AT.
WHEN WE DEAL WITH PEOPLE OF
DIFFERENT CULTURES AND DIFFERENT
EVERYTHING WE HAVE TO MEET THEM
WHERE THEY'RE AT.
FOR MYSELF, I DON'T SEE MYSELF
AS A CAREGIVER BUT FIRST BORN
DAUGHTER AND THAT'S MY
RESPONSIBILITY.
IT'S MY BLESSING TO TAKE CARE OF
MY PARENTS BECAUSE THEY WERE MY
BLESSING.
NOW IT'S MY TURN TO BE THEIR
BLESSING AND WHEN I GO TO THEIR
APPOINTMENTS AND DEAL WITH SO
MANY OTHER PEOPLE, DOCTORS,
INTERVENTIONISTS AND DON'T MEET
ME WHERE I'M AT AND LUCKILY
ENOUGH I HAVE ENOUGH EDUCATION
AND SOME CANNOT INTERACT WITH
THOSE WITH A LARGER VOCABULARY
OR SPEAK TO MY PARENTS THE WAY
THEY UNDERSTAND.
I TOTALLY AGREE.
MEETING PEOPLE WHERE THEY'RE AT
AND NOT TRYING TO SPEAK ABOVE
THEM OR USE HUGE MASSIVE WORDS.
THANK YOU.
THANK YOU
>>THANK YOU.
ROBERT.
>>THE SAME THING.
MEETING WHY YOU'RE AT.
IT GOES TO GATHERING THE DATA.
WHEN YOU GATHER DATA YOU DON'T
ALWAYS THINK ABOUT THOSE
SEGMENTS OF THE COMMUNITY THAT
ARE NOT IN THE MAJORITY.
WHEN YOU GATHER IN DATA A LOT OF
TIMES YOU ARE JUST TRYING TO GET
AS MUCH AS AS YOU CAN SO YOU GO
TO THE MAJORITY.
LIKE DR. EPPS IS DOING, REACHING
OUT TO WHERE THE ACTUAL DATA IS.
GOING TO THE CHURCHES AND I WAS
GLAD TO HEAR THAT WAS A 90%
SUCCESS RATE IN COMPLETING HER
SURVEY.
THAT'S GATHERING THE TRUE DATA
BECAUSE AS SHE ALSO MENTIONED
THAT'S WHERE YOU NEED TO GO IN
THE AFRICAN AMERICAN COMMUNITY.
YOU NEED TO GO WHERE THE PEOPLE
ARE IN ORDER TO GET THAT DATA.
WHEN YOU'RE TALKING ABOUT DOING
STUDIES AS WELL THERE SAY
DIFFERENCE BETWEEN A 24/7
PARTNER AND PAID CAREGIVER.
YOU NEED TO ALSO LOOK AT
GATHERING THE DATA FIRST FINDING
THE CARE PARTNERS BECAUSE A LOT
OF CARE PARTNERS ARE NOT KNOWN.
SOME ARE PART TIME OR DO CERTAIN
SEGMENTS.
BECAUSE OF THAT IT'S A LITTLE
MORE DIFFICULT TO GET GOOD DATA
FROM CARE PARTNERS BECAUSE YOU
FIRST HAVE TO IDENTIFY THE TRUE
CARE PARTNERS AND ALSO IDENTIFY
THE PERSONAL CARE PARTNERS
VERSUS THE CLINICAL CARE
PARTNERS.
>>EXCELLENT POINTS, THANK YOU.
I THINK NOW CERISE MAYBE WE'LL
OPEN IT UP TO THE Q&A.
SEE ABOUT SIX QUESTIONS HERE.
>>I WANT TO THANK THE PANEL FOR
JOINING US THIS AFTERNOON.
THE FIRST QUESTION I HAD WAS
FROM THE Q&A.
WE WOULD LIKE DR. LEWIS TO SPEAK
MORE ON THE HETEROGENEITY WITHIN
THE AMERICAN INDIAN AND ALASKAN
NATIVE POPULATION.
>>THANK YOU FOR THE QUESTION.
I WANT TO START BY SAYING THE
INFORMATION AND DATA WE HAVE
FROM CAREGIVERS AND PEOPLE WITH
DEMENTIA IS ONLY REPRESENTATIVE
OF THOSE STUDIES.
I WOULD SAY GIVEN VARIABLES THAT
DEMENTIA'S STILL FAIRLY NEW IN
INDIGENOUS IN COMMUNITIES AND
EXPERIENCING MORE COMORBIDITIES
THAT MORE WORK IS MORE NEEDED IN
THE COMMUNITIES TO FIND OUT
DIFFERENT UNDERSTANDING IN THE
CAREGIVING EXPERIENCES AS WELL
AS THOSE WITH DEMENTIA.
I WOULD ALSO HAD TO THAT DESPITE
THE FACT THAT AMERICAN INDIANS
AND OUT OF THE FEDERALLY
RECOGNIZED COMMUNITIES HALF ARE
IN ALASKA THEY HAVE DISTINCT
HISTORIES, CONNECTION TO THE
ENVIRONMENT, FAMILY SYSTEMS,
THERE'S UNIVERSAL CULTURAL
VALUES THAT OVERLAY COMMUNITY
SUPPORT AND ENGAGEMENT AND
CARING FOR YOUR ELDERS AND I
THINK WE'RE SEEING IN THE DATA
WE CAN SEE ACROSS A FEW STUDIES
DONE SUCH AS THE WORK HERE AT
MEMORY KEEPERS AND ALSO DR. NEIL
HENDERSON'S WORK AND WE'RE
SEEING SIMILARITIES AND
EXPERIENCES BUT I WANT TO BE
CAREFUL I'M NOT SAYING IT
APPLIES TO EVERYONE.
SO THERE IS A LOT OF
HETEROGENEITY WITH OVERLAYING
CULTURAL VALUES IMPACTING THE
EXPERIENCES WE'RE LEARNING.
>>THANK YOU, DR. LEWIS.
THE NEXT QUESTION I HAD FROM THE
Q&A IS FOR DR. PARK.
IN CENTERING YOUR STUDIES AROUND
VIETNAMESE AMERICANS AND KOREAN
AMERICANS, HOW WOULD YOU
ESTIMATE THAT DEMENTIA
CAREGIVING EXPERIENCES WOULD
DIFFER BETWEEN THOSE WHO LIVE IN
THE U.S. AND THOSE WHO ARE
CURRENTLY IN KOREA OR VIETNAM OR
BACK IN THEIR ORIGIN?
>>THERE'S SIMILARITIES AND
DIFFERENCES.
FOR EXAMPLE WITH KOREAN
AMERICANS OR COKOREANS OR KOREA
LIVING IN AMERICA THE SIMILARITY
SUCH
SUCH THE MAJORITY OF CAREGIVERS
ARE FEMALE OR WIFE OR EVEN
DAUGHTER-IN-LAW.
THAT'S VERY COMMON WHETHER YOU
LIVE IN THE U.S. OR KOREA.
ONE THING IS BECAUSE OF THE
LIMITED RESOURCES IN THE KOREAN
LANGUAGE HERE AS WELL AS THE
LACK OF KOREAN DEMENTIA
CAREGIVING PROGRAMS, MANY KO
KOREKOR
KOREANS ACTUALLY DO RESEARCH AND
LOOK UP RESOURCES IN KOREA.
AND IN KOREA THERE IS THE
GOVERNMENT SUBSIDIZED PROGRAM
FOR FAMILY MEMBERS TO CARE FOR
THEIR LOVED ONES.
AND IT'S MORE COMPREHENSIVE AND
THERE'S MORE INFORMATION, I
WOULD SAY VERSUS WHERE THE
PROGRAMS AND AVAILABLE FINANCIAL
RESOURCES EVEN FOR THE FAMILY
MEMBERS TO CARE FOR THE LOVED
ONES IS NOT CONSISTENT ACROSS
STATES AND LIMITED.
IN VIETNAM THERE'S MORE HELP
FROM EXTENDED FAMILY.
AND IN THE U.S. THERE'S LIMITED
DEMENTIA CAREGIVING RESOURCES
BECAUSE IT'S SO NEW OF A
CONCEPT.
THERE'S A LOT OF NORMALIZATION
OF MEMORY LOSS, FOR EXAMPLE AND
ALSO YOU CARE FOR YOUR LOVED
ONES BECAUSE IT'S NOT -- THE
TRADITIONAL CULTURAL NORM.
ONE THING I DIDN'T MENTION IN MY
PRESENTATION IS WE HAD AN
ABUNDANCE OF INTEREST IN OUR
STUDY.
SOME OF WHOM WHEN WE CONTACTED
IN THE INTEREST LIST HAD TO
UNFORTUNATELY DECLINE BECAUSE
ONCE THEY SHARED THE STUDY WITH
THEIR FAMILY MEMBERS THEY WERE
TOLD YOU CAN'T DO THAT BECAUSE
IT WILL MAKE IT SOUND LIKE IT'S
A BURDEN OR STRESSFUL AND YOU
CAN'T DO THAT BECAUSE WE HAVE TO
TAKE CARE OF OUR LOVED ONES.
THAT'S WHAT WE'RE SUPPOSED TO
DO.
YOU DON'T WANT TO LOSE FACE IN
THAT.
>>THANKS.
I'VE SEEN CHRISTINE HAD A
FOLLOW-UP FROM YOUR COMMENT.
>>SOMEONE WAS ASKING ABOUT THE
DIFFERENCES IN THE EX-PATRIOT
COMMUNITY AND FOR ME A FEW YEARS
AGO I LEARNED AMONG AMERICAN
MILITARY VETS PTSD WAS A BIG
FACTOR FOR DEMENTIA.
AT THE TIME I READ THIS I DIDN'T
REALLY HEAR ANYTHING ABOUT PTSD
AMONG THOSE WHO SURVIVED THE WAR
AND THE OPPRESSION AND THE
DISPLACEMENT THAT HAPPENED
AFTERWARDS.
I THOUGHT ABOUT MY PARENTS.
BOTH WERE CHILDREN OF
COLONIALISM AND THE FIGHT
AGAINST IT AND MY MOM WAS
DISPLACED AS A GIRL WHEN
VIETNAMESE CAME DOWN AND MY DAD
WAS AN ORPHAN AND MEMBERS OF HIS
FAMILY DISAPPEARED AND
EVENTUALLY HE BECAME A SOLDIER.
THE WAR AFFECTED EVERY PART OF
THEIR LIFE FOR THE MAJORITY OF
THEIR ADULT LIFE.
AFTER THE WAR ME AND MY WHOLE
FAMILY WERE INPRISONED IN A
REEDUCATION CAMP AND MY DAD WAS
THERE THE LONGEST AND WE WERE
BOAT PEOPLE AND ALMOST DIED AT
SEA.
ALL THEIR LIVES MY PARENTS
RETURNED TO THESE EVENTS AGAIN
AND AGAIN AND AGAIN.
THAT'S PTSD.
WHEN I THOUGHT ABOUT IT THOUGHT
THEY BOTH HAVE DEMENTIA AND
THEY'RE SO SHARP IN OTHER WAYS.
I DID WONDER DID PTSD AFFECT
THEIR ONSET OF DEMENTIA LIKE
DOCUMENTED AMONG WAR VETERANS OR
SOMETHING LIKE THAT.
AND FOR OTHER REASONS MY PARENTS
WERE SOCIALLY ISOLATED IN THE
UNITED STATES.
WE KNOW FROM RESEARCH SOCIAL
ISOLATION IS A RISK FACTOR OF
PTSD.
THERE ARE CERTAINLY SOME
DIFFERENCES IN EXPERIENCES THAT
MAYBE VIETNAMESE THAT CAME TO
THE UNITED STATES AS REFUGEES
VERSUS THOSE WHO MAY BE LIVING
THERE NOW AND THERE'S A
DIFFERENT CONTEXT FOR HOW THE
WAR IS PORTRAYED.
>>I THINK THAT BRINGS US TO OUR
GAP AND OPPORTUNITIES IN WHICH
WE REALLY WANTED TO GO INTO A
DIVERSE POPULATION YOU WANT
DIVERSE PERSPECTIVES YOU'LL HAVE
TO LEARN ABOUT A PERSON AND
INDIVIDUAL'S LIVED EXPERIENCE
FOR THEIR WHOLE KIND OF LIFE OF
HOW THEY INTERACT WITH THEIR
FAMILY AND SOCIETY AND HOW THEY
INTERACT WITH BEING WITH AMERICA
I FEEL THAT ALSO WOULD LEND A
LOT OF INFORMATION INTO THE
STUDY DESIGNS THAT WE MAKE AS WE
RECRUIT MORE DIVERSE
INDIVIDUALS.
AND THERE'S A QUESTION FOR
FAYRON AND I THINK IT GOES TO
UNDERSTANDING PEOPLE'S LIVED
EXPERIENCES AND ALSO RECOGNIZING
THE PLACE WHICH IS DOING THE
RESEARCH AND HOW THAT PLACE AND
THAT COMMUNITY RELATES IN THAT
THERE IS A COMMENT IN THE Q&A
ABOUT SOMETIMES THE INSTITUTION
AS YOU GO INTO A NEEDS TO
ACKNOWLEDGE THE PAST
RELATIONSHIPS BETWEEN DIFFERENT
COMMUNITIES.
COULD YOU KIND OF BRIEFLY TALK
ABOUT THAT AND YOUR TOP WAY TO
ALLEVIATE THAT?
>>THAT'S A GREAT POINT FOR ME
BEING EMPLOYED IN PREDOMINANTLY
WHITE INSTITUTION AND WORKING IN
A BLACK COMMUNITY I HAVE TO
RECOGNIZE THE ROLE THE PWI HAS
PLAYED AND THE NEGLECT OF
CERTAIN COMMUNITIES.
I ACKNOWLEDGE THAT.
I ALLOW THEM TO SPEAK ABOUT THAT
AND ENSURE THAT DOESN'T CONTINUE
AND TO HELP BRIDGE THAT GAP YOU
HAVE TO ACKNOWLEDGE IT AND WHEN
I TRAINING OTHERS IT'S ABOUT
KNOWING THE HISTORY OF THE
COMMUNITY AND ABOUT THE PAST
RELATIONSHIPS BEFORE YOU GO IN.
BECAUSE IF WE DON'T DO THAT
WE'LL BE FACED WITH -- WE'LL BE
FACED WITH NOT UNDERSTANDING WHY
CERTAIN THINGS ARE OCCURRING OR
WHY THEY DON'T WANT US TO COME
OR SPEAK OR SIGN UP FOR
ANYTHING.
>>I THINK ONE OF THE FINAL
QUESTIONS IS THAT THERE'S A
QUESTION HERE IN Q&A FROM SARAH
PATTERSON.
I'M GOING TO DIRECT THIS
QUESTION TO THE PANEL MEMBERS
BEING INCLUDED IN THE RESEARCH.
DO YOU HAVE COMMENTS OR THOUGHTS
ABOUT CONDUCTING RESEARCH IN
PERSON VERSUS ONLINE?
AND IS THERE A PRO OR CON TO
EACH TYPE?
>>I DO BOTH DATA COLLECTION
ONLINE AND BOTH WAYS HAVE BEEN
SUCCESSFUL BUT THE REASON I HAVE
TO SAY WHY THEY MAY HAVE BEEN
SUCCESSFUL IS BECAUSE OF THE
RECRUITMENT THAT OCCURRED AND I
SPEAK ONLINE AND DO FACE TO
FACE.
IT'S DEVELOPING THE
RELATIONSHIPS WITH THE
INDIVIDUALS THAT I'M RECRUITING.
BEING PERSONABLE I THINK THAT'S
CONTRIBUTED TO MY SUCCESS WITH
THE RECRUITMENT WHICH WHETHER WE
DO THE RESEARCH ONLINE OR IN
PERSON IT WILL STILL BE
SUCCESSFUL.
>>DO THE PANELISTS HAVE -- HAVE
YOU BEEN PARTICIPATING IN PERSON
AND DURING THE PANDEMIC DID YOU
DO ANY KIND OF ONLINE SERVICES?
DID YOU HEARD IN THE ONLINE KIND
OF WAY?
>>IF I CAN SPEAK ON THAT.
THE PANDEMIC HELPED IN SOME WAYS
VIA ZOOM OF COURSE IN ALL AREAS.
BUT AT THE SAME TIME I HAVE TO
AGREE THAT DOING ANYTHING IN
PERSON GOES A LONG WAY.
SO IF I'M SPEAKING PERSONALLY, I
WOULD RATHER HAVE THAT
CONNECTION PERSONALLY THREE
ZOOM.
ZOOM IS GOOD BUT AT THE SAME
TIME YOU CAN STILL GET LOST ON
THE ZOOM MEETING IF WE PUT ALL
200 PARTICIPANTS UP, SOMEBODY'S
LOST OFF YOUR SCREEN.
SO YOU'RE TAKING AWAY THE
PERSONAL ASPECT.
PERSONALLY I PREFER THE PERSONAL
ASPECT OF IT.
>>WE HAVE ONE COMMENT FROM
MICHELLE MICHAELS.
SHE WAS SHARING SHE WORKS IN A
STATE THE STATE OF ARIZONA
COMMISSION FOR THE DEAF AND HARD
OF HEARING.
THERE'S OLDER COMMUNITY
CULTURALLY DEAF AND NEED ACL TO
COMMUNICATE AND THERE ARE
LIMITED RESOURCES IN WHICH TO
COMMUNICATE WITH THAT COMMUNITY.
I THINK THAT MICHELLE IS
BRINGING OUT AN ISSUE IN WHICH
THERE'S AN OPPORTUNITY TO
INCLUDE AND BUILD RESOURCES TO
RECRUIT AND RETAIN INDIVIDUALS
SUCH AS THE INDIVIDUALS YOU ARE
DESCRIBING IN YOUR COMMENTS.
THANK YOU FOR YOUR COMMENT.
CRYSTAL, DID YOU WANT TO USE OUR
LAST FIVE MINUTES?
>>THERE'S AN INTERESTING ONE IN
THE CHAT I WOULDN'T MIND
HIGHLIGHTING TO ANY OF THE
PANELISTS THAT WOULD LIKE TO HOP
ON, I THINK THAT'D BE GREAT.
IT'S FROM LESLIE BAUN.
HOW DO YOU BALANCE PRIVACY AND
ENGAGEMENT IN
PARTICIPATORY-BASED COMMUNITY
RESEARCH IN THE CHURCH.
I SEE FAYRON'S FACE.
>>SO I THINK IT IS I LEAVE IT
TO MY RESEARCH PARTICIPANTS IF
THEY WANT TO SHARE.
THEY'RE PARTICIPATING IN THE
RESEARCH AND THEY'RE PART OF
THIS IT WOULD NOT COME FROM ME.
I HAVE DIFFERENT STUDIES AND ONE
STUDY I FOLLOWED FAMILIES TO
CHURCHES BUT I DIDN'T LET ANYONE
KNOW.
BISHOP JUST GAVE ME PERMISSION
TO BE THERE BUT HE DIDN'T EVEN
KNOW WHO THE FAMILIES WERE.
ULTIMATELY IT'S UP TO THE FAMILY
TO MAKE IT KNOWN IF THEY CHOOSE
TO AND THAT'S HOW IT'S BEEN EVEN
WHEN WE GO OUT AND DOING THE
EVENTS WE HAVE SOME FAMILIES
THAT WOULD NOT SAY ANYTHING AND
WE HAVE SOME FAMILIES THAT WOULD
GET UP AND SAY SOMETHING.
I HAD ONE PERSON WHO GOT UP AND
SPOKE AND SAID I AM THE PERSON
I'M SPEAKING ABOUT AND DO WANT
TO BE PART OF THIS.
USUALLY THE PARTICIPANTS SHARE
THEIR EXPERIENCE.
>>THANK YOU, FAYRON.
WE'LL WRAP UP WITH A FINAL
QUESTION FOR THE FINALISTS.
HOW CAN RESEARCHERS BE MORE
CONSIDERATE AND MINDFUL IN
RECRUITING THEM FOR RESEARCH
STUDIES?
>>I'VE BEEN BLESSED WITH THE
TEAM APPROACHING WITH KINDNESS,
CARE AND UNDERSTANDING.
IT GOES BACK TO MEETING THE
PERSON WHERE I'M AT.
I'M SURE I'M DEER IN HEADLIGHT
BECAUSE I DIDN'T KNOW ANYTHING.
I SHOULDN'T SAY I DIDN'T KNOW
NOTHING.
I DIDN'T KNOW WHAT TO ASK.
THERE'S SO MANY UNKNOWNS AND
THEY DIDN'T INUNDATE ME WITH THE
PERSON YOU'RE WORKING WITH AND
TAKING TIME TO DO THAT BEFORE
YOU MOVE FORWARD IS IMPORTANT IN
MY OPINION.
>>THERE'S SO MANY KEY PARTS
THROUGHOUT THE SESSION THAT
RECRUITMENT AND THE SUBSEQUENT
RETENTION DOESN'T START WHEN WE
SIMPLY START OUR STUDY.
IT BEGINS YEARS IN ADVANCE AND
DEVELOPING MEANINGFUL
BI-DIRECTIONAL RELATIONSHIPS
WITH COMMUNITIES AND MOVING
FORWARD WITH RESEARCH IN A
CULTURALLY COMPETENT WAY.
DEACON REID, DR. NGUYEN,
ANYTHING ELSE BEFORE WE MOVE ON
WITH THE QUESTION?
>>MAKE IT EASY ON THE
PARTICIPANTS.
MANY CAREGIVERS ARE UNDER STRESS
SO ANYTHING YOU CAN DO TO MAKE
PARTICIPATING EASIER IS GOOD.
>>THANK YOU, CHRISTINE.
DEACON REID YOU WANT TO CLOSE US
OUT?
>>I AGREE WITH THE EMPATHETIC
PART OF IT AND UNDERSTANDING THE
CARE PARTNER IS INVOLVED IN IT
24/7 AND WITH THAT THEY HAVE THE
MOST KNOWLEDGE OF WHAT'S GOING
ON.
A LOT OF TIMES WHEN WE GO TO THE
DOCTOR THE DOCTOR'S TRYING TO BE
NICE AND SPEAK TO MY WIFE BUT
REALLY SHE STILL HAS TO TURN
AROUND AND COME TO ME TO GET THE
ACTUAL FACTS AS TO WHAT'S GOING
ON.
BEING EMPATHETIC IN THAT WAY
MAKES A BIG DIFFERENCE AND I
HAVE TO ADMIT WE'VE BEEN VERY
BLESSED WITH A CARE TEAM THAT
HAS NOT ONLY CARED FOR MY WIFE
AND EVEN THE -- TOOK THE
OPPORTUNITY TO ASK ME HOW I'M
DOING AND IT'S NOT MY
APPOINTMENT SO THAT GOES A LONG
WAY AS WELL.
>>THANK YOU, DEACON REID AND
FOR THE SPEAKERS AND PANELISTS
AND THANK YOU TO CERISE.
I THINK THAT'S THE END OF
SESSION EIGHT.
THANK YOU.
>>THANK YOU SO MUCH, EVERYONE.
WHAT A TREMENDOUS SESSION.
THANK YOU EVERYONE FOR JOINING
US FOR THE THIRD AND LAST DAY OF
THE DEMENTIA CARE SUMMIT.
WE'LL NOW TRANSITION TO A
REFLECTION AND SUMMARY OF DAY
THREE OF THE SUMMIT FOLLOWED BY
SOME CLOSING REMARKS THAT JULIE
WILL PROVIDE.
A REVIEW OF WHAT THE GREAT
SESSIONS AND DISCUSSIONS WE HAD
TODAY WE BEGAN OUR DAY BY
HEARING FROM MEMBERS OF THE
LIVED EXPERIENCE AND STAKEHOLDER
ENGAGEMENT PANELS WITH REMARKS
FROM DAVE ARNOLD AND PETRA NILES
AND IT HIGHLIGHTED THE VALUES
AND IMPORTANCE OF PLANNING FOR
THE FUTURE AND MAINTAINING
INDEPENDENCE AS WELL AS THE
SIGNIFICANT FINANCIAL SEQUENCES
OF BEING AS BE UNPREPARED AND
UNINFORMED IN THE FACE OF
DEMENTIA WHICH IS NO RESPECTER
OF AGE, ZIP CODE OR SOCIO
ECONOMIC STATUS.
AFTER THAT WE HEARD WITH THE
DEMENTIA CARE CONFERENCE.
THE SESSION HIGHLIGHTS FOR US
WAYS THE DEMENTIA CARE WORKFORCE
MIRRORS THE COMPLEX AND OFTEN
FRAGMENTED CARE CONTINUUM THAT
INDIVIDUALS AND THEIR CARE
PARTNERS OR CAREGIVERS MUST
NAVIGATE.
WE HEARD THE DATA SURROUNDING
THE WORKFORCE IS EQUALLY
FRAGMENTED AND OFTEN INCOMPLETE.
IT WAS NOTED IN PARTICULAR
ALMOST NO DATA ABOUT THE
ASSISTED LIVING WORKFORCE IS
AVAILABLE AND THAT THE LEVEL OF
DETAIL WITH WHAT WE KNOW ABOUT
WHO'S IN THE WORKFORCE AND
THEY'RE CHARACTERISTICS AND
THEIR ROLES IS SIGNIFICANTLY
LACK AND THE NASEM REPORT
NARRATIVE TO IMPROVE QUALITY AND
CONTINUES THE LOW PAY AND
ADEQUATE WORKINGS CAN BE AND THE
ENVIRONMENTS IN THE NURSING HOME
SECTOR IN PARTICULAR AND GREAT
NEED AND OPPORTUNITY FOR THERE
TO BE ACTIONS ON THE
RECOMMENDATIONS IN THAT REPORT
WITH THE GOAL OF I AM PROVING
AND STRENGTHENING THE WORKFORCE
AND ULTIMATELY DEMENTIA CARE
QUALITY AS WELL.
FOR SESSION 7 WE HEARD ABOUT
ECONOMIC IMPACT AND
IMPLICATIONS.
THE SESSION HIGHLIGHTS FOR US
VIA PRESENTATION BY DR. DUKE HAN
ABOUT THE ROLE OF FINANCIAL
DECISION MAKING IN AGE-RELATED
COGNITIVE DECLINE AND EARLY
STAGES OF DEMENTIA AND THE NEED
FOR GREATER CLARITY ABOUT THOSE
DIFFERENCES AND SOME OF THOSE
LINKS.
AS WELL AS THE NEED TO INFORM
SUPPORTS FOR EARLY FINANCIAL
PLANNING.
THE SESSION ALSO HIGHLIGHTED FOR
US AGAIN SIMILAR TO THINGS WE
HEARD IN EARLIER DAYS OF THE
SUMMIT THAT PATHWAYS TO
DIAGNOSIS ARE OFTEN PROCEEDED
AND FOLLOWED BY CRISIS EVENTS.
WE SEE THIS FROM HIGHER EXPOSURE
TO ACUTE ILLNESS CARE SUCH AS
HOSPITALIZATION.
WE KNOW THIS CARRIES SIGNIFICANT
CLINICAL CONSEQUENCES AND ALSO
HAS I MPLICATIONS FOR PAYERS AN
COSTS.
THERE'S IMPORTANT DIFFERENCES IN
SOME OF THOSE PATTERNS BASED ON
WHETHER OR NOT SOMEONE IS
RECEIVING TRADITIONAL MEDICARE
OR MEDICARE ADVANTAGE AND THAT
WE NEED TO BETTER UNDERSTAND
THOSE DIFFERENCES.
COMMENTS AND DISCUSSION AMONG
PRESENTERS AND THE AUDIENCE IN
THIS SESSION ALSO HIGHLIGHTED
AND POINTED TO THE NEED TO MORE
PRECISELY QUANTIFY THE COST TO
FAMILY MEMBERS AND TRYING TO
FIND WAYS TO DO THAT BEYOND THE
IMMEDIATE FAMILY AS WELL.
AND CRITICALLY WE HEARD FROM HEL
EN LAMONT ABOUT THE DATA NEEDED
TO INFORM POLICY DECISIONS
INCLUDING BEING SPECIFIC ABOUT
THE DIFFERENTIAL IMPACTS OF
INTERVENTIONS, IDEALLY THINK OF
WAYS RESEARCHERS CAN BREAK DOWN
THE DIFFERENTIAL CHARACTERISTIC
AND DUAL ELIGIBILITY AND
ENSURING SUFFICIENT DETAILS
SHARED TO PROVIDE AN
UNDERSTANDING OF
GENERALIZABILITY.
LASTLY WE CLOSED WITH THE
TREMENDOUS SESSION THAT JUST
WRAPPED UP FOCUSSED ON
APPROACHES TO PARTICIPATORY
RESEARCH AND DIVERSE RECRUITMENT
AND RETENTION.
THIS SESSION WAS TREMENDOUS AS
THEY ALL WERE AND HIGHLIGHTED
FOR US GREAT EXAMPLES AND
CONSIDERATIONS FOR HOW WE
APPROACH, PARTICIPATORY RESEARCH
AND WHAT THIS CAN LOOK LIKE IN
COMMUNITIES THAT AS DR. EPPS
REMINDS US ARE NOT INDEED HARD
TO REACH BUT WHERE THERE'S
SPECIFIC CONSIDERATIONS HOW WE
UNDERSTAND THE COMPETING NEEDS
AND PRIORITIES OF COMMUNITIES,
THE HISTORICAL AND PRESENT-DAY
CONCERNS THAT EXIST ABOUT TRUST
AND CONFIDENTIALITY AND HOW THE
APPROACHES THAT WE AS
RESEARCHERS MAY USE TO TALK
ABOUT CAREGIVING AND EXPERIENCES
WITH DEMENTIA CAN BE
INCONSISTENT WITH THE LIVED
EXPERIENCE AND VALUES IN SOME
COMMUNITIES.
THAT'S SOMETHING WE NEED TO
BETTER UNDERSTAND.
WE HEARD REMARKS FROM PANELISTS
MARTHA WILLIAMS AND DR. NGUYEN
AND DEACON REID ABOUT THEIR WHY
THEY'RE PARTICIPATING IN
RESEARCH AND A FEW THINGS I
NOTED IS REMOVING JARGON,
MEETING PEOPLE WHERE THEY'RE AT
AND REMEMBERING HOW WE IDENTIFY
OURSELVES IN DIVERSE COMMUNITIES
AND WITH OUR DIVERSE BACKGROUNDS
MAY BE VERY DISTINCT AND
INDIVIDUALIZED AND THAT WE HAVE
TO UNDERSTAND IT AND NEED TO
RESPOND TO THAT IN OUR
APPROACHES TO REACHING OUT TO
AND ENGAGING WITH DIVERSE
COMMUNITIES.
AND I WILL PERHAPS CLOSE BY
LIFTING UP THE WORDS FROM DEACON
REID OF WHICH THE EASE WHERE WE
CAN OBTAIN MAJORITY DATA AND
NEED TO GO WHERE PEOPLE ARE TO
GET THE TRUE DATA.
I APPRECIATED THOSE REMARKS AND
WANT TO THANK EVERYONE WHO
CONTRIBUTED TO THE SESSIONS
TODAY AND FOR JOINING US FOR AN
OUTSTANDING SUMMIT.
I'M GOING TO HAND IT OVER TO
JULIE TO CLOSE US OUT.
>>THANK YOU FOR THE THOUGHTFUL
COMMENTS ABOUT OUR DAY.
FOR THE FINAL FEW MINUTES IT'S
MY PRIVILEGE TO MAKE BRIEF
CLOSING REMARKS AND TELL YOU
WHAT TO EXPECT GOING FORWARD.
FOR THE LAST THREE DAYS OF THE
SUMMIT WE HEARD PRESENTATIONS
AND DISCUSSIONS THAT SUMMARIZED
AND HIGHLIGHTED THE EXCITING
SCIENTIFIC PROGRESS SINCE THE
2020 SUMMIT.
THE PRESENTATIONS IDENTIFIED
HIGH PRIORITY RESEARCH GAPS AND
OPPORTUNITIES AND THESE EM PLIFY
WHY -- EXEMPLIFY WHY WE NEED
SUPPORT FOR CAREGIVERS AND
RESEARCH IS NEEDED TO INFORM THE
SOLUTIONS AND ADVANCE HEALTH
EQUITY AND WE NEED ADVOCACY
SECTORS AND IMPORTANTLY THE
PERSPECTIVES AND INSIGHT FROM
PERSONS LIVING WITH DEMENTIA AND
CAREGIVERS AND PARTNERS AND
GRATEFUL FOR THOSE WHO SHARED
THEIR TIME AND EXPERIENCES WITH
US.
I'M INSPIRED FROM ALL I HEARD
AND LEARNED.
WE HOPE THIS SERVES AS A CALL TO
ALL RESEARCHERS AND EARLY STAGE
INVESTIGATORS.
RESEARCH MOMENTUM IS BUILDING
AND THE URGENCY HAS NOT
DIMINISHED.
WITH THE WIDE RANGE OF RESEARCH
NEEDS IDENTIFIED AND DISCUSSED
NOW IS THE TIME TO BE FEARLESS
IN THE SCIENTIFIC PURSUIT OF
PROGRESS.
NOT TO WORRY IF YOU DID NOT TAKE
COPIOUS NOTES.
YOU MAY VISIT THE SUMMIT WEBSITE
TO ACCESS RECORD INGS AND THE
WEBSITE IS HERE FOR YOUR
REMINDER AND CHECK BACK IN
MONTHS FOR THE SUMMIT REPORT AND
FINAL RESEARCH GAPS AND
OPPORTUNITIES.
ON BEHALF OF
DR. GILMORE-BYKOVSKYI AND
MYSELF, I'LL WRAP UP THE SUMMIT
WITH A SECOND THANK YOU TO ALL
THE DEDICATED PEOPLE THAT
CONTRIBUTED TO THIS EFFORT.
WE THANK OUR COLLEAGUES AT ROSE
LEE AND ASSOCIATES AND SOPHIA
JONES AND TEAMS FOR THE BEHIND
THE SCENES EFFORTS AND EXPRESS
GRATITUDE TO OUR COLLEAGUES ON
THE NATIONAL INSTITUTE ON AGING.
ELENA FAZIO AND JESSICA BOATEN
AND OTHERS INSTRUMENTAL TO THE
SUCCESS OF THE SUMMIT.
PLEASE ENJOY THE REST OF YOUR
DAY AND THANK YOU AGAIN FOR
JOINING US.