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