July 2017 Meeting of the Advisory Council on Alzheimer’s Research, Care, and Services Part 2

July 2017 Meeting of the Advisory Council on Alzheimer’s Research, Care, and Services Part 2


>>GOOD MORNING.>>GOOD MORNING, STACY. RON PETERSEN HERE. I THINK WE’RE ALL CUED UP AND ROHINI HAS THE
CLICKER TO ADVANCE YOUR SLIDES. SO PLEASE GO AHEAD.>>STACY, LET ME KNOW WHEN YOU’RE READY TO
GO.>>THANK YOU. I’M READY. I HOPE YOU CAN HEAR ME OKAY.>>YEP, LOUD AND CLEAR.>>YES. THANK YOU. THIS IS STACY LINDAU WITH MY COLLEAGUE, JILLIAN,
A RESEARCHER IN MY LAB. I’M IN CHICAGO ON THE SOUTH SIDE OF CHICAGO
WHERE WE ESTIMATE WE HAVE ABOUT 10,000 COMMUNITY RESIDING RESIDENTS WITH ALZHEIMER’S OR RELATED
DEMENTIAS. THE IMAGE YOU SEE HERE IS FACING NORTH. IT’S HARD TO FIND BEAUTIFUL IMAGE FACING SOUTH. ON THE SOUTH SIDE OF CHICAGO. BUT THAT’S WHERE OUR GAZE HAS BEEN SET FOR
THE LAST MANY YEARS. BUILDING INFRASTRUCTURE TOGETHER WITH COMMUNITY
PARTNERS AND LEADERS THAT PROMOTE HEALTH OF THE OVERALL POPULATION, INCLUDING WITH CONCERN
FOR PEOPLE WHO ARE CAREGIVERS OF PEOPLE COMMUNITY RESIDING WITH ALZHEIMER’S AND RELATED DEMENTIAS. I JUST WANT TO POINT OUT MY APPOINTMENT IS
IN OB/GYN IN MEDICINE GERIATRICS, GYNECOLOGIST BY TRAINING BUT THE AMERICAN CONGRESS OF OBSTETRICS
AND GYNECOLOGY COULD BE AN IMPORTANT CONSTITUENT. IF YOU THINK BIT, THINK ABOUT DEMOGRAPHICS
OF CAREGIVERS, MIDDLE AGE AND OLDER WOMEN ARE OFTENTIMES OR MAKE UP A BIG BULK OF CAREGIVERS
AND THOSE ARE THE WOMEN I CARE FOR. SO I’LL JUST MAKE A PLUG FOR THAT ENGAGEMENT. NEXT SLIDE PLEASE. I WILL START WITH DISCLOSURES. ROHINI, I DON’T KNOW IF THE SLIDES APPEAR
TO BE ADVANCING THERE FROM I’M STILL LOOKING AT THE FIRST SLIDE.>>THE WEBCAST IS JUST A LITTLE BIT OFF TIMEWISE. WE HAVE IT UP.>>YOU WARNED ME OF THAT. OKAY. THANK YOU. SO DISCLOSURES ARE IMPORTANT. I WANT TO ACKNOWLEDGE AND THANK SEVERAL HHS
AGENCIES THAT SUPPORTED MY WORK ACROSS MY CAREER INCLUDING THE WORK I’M GOING TO SHARE
WITH YOU TODAY WHICH INCLUDES NATIONAL INSTITUTE ON AGING AS WELL AS CENTER FOR MEDICARE AND
MEDICAID INNOVATION, THEY HAD AS AN EXPECTATION TO DELIVER A SUSTAINABLE BUSINESS MODEL FOR
FUNDING WE RECEIVE. THAT RESULTED IN CREATION OF TWO NEW COMPANIES
BASED ON SOUTH SIDE, NOW POW, MAP CORPS. NOW POW IS A SOCIAL ENTERPRISE COMPANY I FOUND
AND COOWN, MAP CORPS IS A NONPROFIT DEVELOPMENT ORGANIZATION, I’M THE PRESIDENT OF THE BOARD. THOSE DISCLOSURES ARE IMPORTANT TO KEEP IN
MIND. NEXT SLIDE PLEASE. THIS SCHEMATIC SHOWS� MAKES A COUPLE POINTS,
IT’S THE PHYLOGENY UNDER THE SOUTH SIDE HEALTH AND VITALITY STUDIES. YOU SEE HIGHLIGHTED KEY FUNDERS WHO SUPPORTED
THE DEVELOPMENT OF THIS WORK OVER MANY YEARS, COMMUNITY RX IS THE MANIFESTATION OF WORK
THAT HAS BEEN DEEPLY COMMUNITY ENGAGED, DRAWN ON A BROAD VARIETY OF METHODS MORE FAMILIAR
TO SOCIAL SCIENCE THAN BIOMEDICAL SCIENCE, AND IT IS LIKE I SAID NOW CONTINUING ON AS
NEW ENTITIES ON THE SOUTH SIDE OF CHICAGO. THE NEXT SLIDE GIVES OVERVIEW OF HEALTH CARE
INNOVATION CHALLENGE THAT SUPPORTED THE COMMUNITY RX CONCEPT. AND AS PROBABLY MANY OF YOU KNOW CMMI WAS
LOOKING FOR IDEAS TO ADVANCE BETTER HEALTH, BETTER HEALTH CARE, LOWER COSTS, ALSO LOOKING
FOR IDEAS THAT WOULD HELP PROMOTE WORK FORCE OF THE FUTURE AND AS I MENTIONED IF THE IDEA
LOOKED LIKE IT HAD SOME TRACTION OR SOME LEGS A SUSTAINABLE BUSINESS MODEL. OUR GROUP WAS FUND IT’S IN THE FIRST ROUND
OF HEALTH CARE INNOVATION AWARDS, OUR FUNDING WAS BETWEEN THE YEARS 2012 AND 15. WE HAD SIX MONTHS TO GET THE INTERVENTION
UP AND OPERATING AND THAT INTERVENTION WAS COMMUNITY RX. WE HAD REMAINDER OF TIME TO DEMONSTRATE FEASIBILITY
OF OUR INTERVENTION. RTI WAS THE GROUP CONTRACTED BY CMMI TO EVALUATE
COMMUNITY RX AND THE FINAL IS NOT POSTED, THE INTERIM EVALUATIONS ARE PUBLICLY AVAILABLE. I WOULD ENCOURAGE ANYONE INTERESTED TO LOOK
AT THIRD PARTY EVALUATIONS. SO MOVING TO THE NEXT SLIDE, I’LL GIVE YOU
A SORT OF MAP OF WHAT COMMUNITY RX LOOKS LIKE AND HOW IT WORKS. COMMUNITY RX STARTS WITH USE. MAPSCORPS IS A PRIMARY DATA COLLECTION EFFORT
IN ITS NINTH EXPECT YEAR BUT ALSO YOUTH ENGAGEMENT EFFORT. MAPSCORPS ENGAGES LOCAL HIGH SCHOOL STUDENTS
FROM THE SOUTH AND NOW WEST SIDES OF CHICAGO, IN THREE OTHER CITIES IN THE U.S.
EACH SUMMER TO CONDUCT A COMPREHENSIVE CENSUS OF EVERY BUSINESS AND ORGANIZATION OPEN AND
OPERATING TO SERVE THE PUBLIC. WHY DO WE DO THIS? OUR SCIENCE HAS SHOWN US THAT THE BEST AVAILABLE
DATA, SAY GOOGLE OR PROPRIETARY DATASETS, WE CAN PURCHASE, THE BEST AVAILABLE DATA FOR
HIGHER POVERTY COMMUNITIES MISS 30 TO 40% OF RESOURCES WE NEED TO HELP SUPPORT CAREGIVERS
AND COMMUNITY RESIDING PEOPLE WITH DEMENTIA AND OTHER CONDITIONS. THIS IS UNACCEPTABLE. IF WE NEED TO CONNECT PEOPLE TO COMMUNITYBASED
RESOURCES OUR PROFESSIONAL SOCIETIES ARE MAKING RECOMMENDATIONS THAT PEOPLE OUGHT TO BE SUPPORTED
IN THEIR SELF CARE AND CAREGIVING ACTIVITIES, THEN WE NEED HIGHLY RELIABLE INFORMATION ABOUT
WHAT THESE RESOURCES ARE, WHERE THEY ARE, WHO IS ELIGIBLE FOR THEM, AND WE’RE FAR FROM
THAT AT THIS TIME. IN OUR COMMUNITY WE DECIDED TO ENGAGE YOUTH
IN THE ACT OF GATHERING DATA ABOUT RESOURCES, AND THIS SUMMER WE HAVE JUST ENGAGED EMPLOYED
OUR THOUSAND YOUTH, CHICAGO, NIAGARA FALLS AND ROCKY MOUNT, NORTH CAROLINA, SOME EFFORTS
HAVE BEEN SUPPORTED WITH NIH FUNDING ALSO. SO MAPSCORPS GATHERS DATA ABOUT RESOURCES
OF THE COMMUNITY. WE USE SMARTPHONEBASED APP MAP APP TO DO THAT
MAPPING. THE DATA BECOME AVAILABLE TO THE PUBLIC, AND
HAVE BEEN USED BY OUR TEAM TO MAKE IT EASIER FOR DOCTORS, NURSES, HEALTH CARE PROVIDERS,
I CALL ALL OF US EVERYBODY WHO CARES FOR PEOPLE THE CARING COMMUNITY SO I’LL USE THAT TERM
HERE. MAKES ITS EASIER FOR THE CARING COMMUNITY
TO CONNECT PEOPLE TO RESOURCES. AND WHAT THE COMMUNITY RX STUDY DID WAS HEALTH
CARE INNOVATION AWARD FUNDING WAS TEST THE IDEA THAT WE COULD BUILD AN INTEGRATION BETWEEN
THE COMMUNITY RESOURCE DATABASE AND ELECTRONIC MEDICAL RECORDS. SO THAT DOCTORS, NURSES AND OTHERS IN THE
CARING COMMUNITY DIDN’T HAVE TO LEAVE OUR REGULAR WORK FLOW TO DO THE IMPORTANT WORK
OF CONNECTING PEOPLE TO COMMUNITYBASED RESOURCES THAT MEET THEIR NEEDS. WE CREATED CONDITION ALGORITHMS DRAWING ON
BEST AVAILABLE EVIDENCE THAT WOULD SAY WHAT IS A PERSON WITH ALZHEIMER’S AND RELATED DEMENTIAS
NEED TO BE WELL LIVING AT HOME, AND REALLY WHAT DO CAREGIVERS NEED. WE DEVELOPED THAT ALGORITHM IN PARTNERSHIP
WITH EXPERTS AT OUR SOUTH SHORE SENIOR CENTER PREDOMINANTLY SERVING THE AFRICANAMERICAN
COMMUNITY AND THAT ALGORITHM THEN BECAME SOFTWARE CODE THAT WHEN WE LEFT THE ELECTRONIC MEDICAL
RECORD AT THE END OF A VISIT GENERATED WHAT WE CALL A HEALTHY RX. YOU SEE THAT IN THE LOWER RIGHT CORNER HERE. THAT HEALTHY RX PROVIDED THE INDIVIDUAL OR
DYAD WITH INFORMATION ABOUT THE RESOURCES CLOSEST TO HOME ADDRESS THAT WERE SUITED TO
ALZHEIMER’S RELATED DEMENTIAS AND OTHER CHRONIC CONDITIONS THAT THEY MAY HAVE HAVE DOCUMENTED
IN THEIR ELECTRONIC MEDICAL RECORD LIKE DIABETES FOR EXAMPLE. WHEN PEOPLE RECEIVE THIS INFORMATION IN THE
HEALTH CARE SETTING THEY GET IT WITH THE AFTERVISIT SUMMARY, THEY CAN USE THIS INFORMATION TO
MAKE USE OF NEARBY COMMUNITYBASED RESOURCES. THERE’S A COMMUNITY HEALTH INFORMATION SPECIALIST. YOU SEE THAT SMALL PAMELA AT THE TOP OF THE
HEALTHY RX, THEY COULD ALSO REACH OUT TO THIS INDIVIDUAL FOR ADDITIONAL SUPPORT NAVIGATING
TO OTHER RESOURCES. TO ME ONE OF THE MOST INTERESTING FINDINGS
FROM THIS WORK WHILE WE WERE HAPPY TO SEE 20% OF PEOPLE REPORTED GOING TO COMMUNITY
RESOURCE BASED ON RECEIVING THIS INFORMATION, AND THAT WAS ONLY WITHIN ABOUT TWO WEEKS OF
THEM RECEIVING THE HEALTHY RX ALMOST HALF THE PEOPLE USED THE INFORMATION TO HELP SOMEBODY
ELSE. AND THAT TO ME IS ONE OF THE MOST IMPORTANT
AND PROMISING FINDINGS OF ALL OF THE WORK WE DID TO TEST THIS IDEA. PEOPLE GETTING INFORMATION ABOUT COMMUNITY
RESOURCES ARE MORE LIKELY TO USE COMMUNITY BASED ORGANIZATIONS, LOCAL BUSINESSES AND
ORGANIZATIONS IMPORTANT TO LOCAL ECONOMY OF THE COMMUNITIES WHERE OUR PATIENTS AND CAREGIVERS
LIVE. OF COURSE THE MORE BUSINESS ORGANIZATIONS,
THE MORE WORK FOR YOUTH IN MAPPING THE ASSETS OF THE COMMUNITY. THAT’S COMMUNITY RX. THE NEXT SLIDE SHOWS SOME OF THE FINDINGS
WE RECORDED IN NOVEMBER�2016, PROCESS LEVEL FINDINGS FROM THE COMMUNITY RX PROJECT. RTI HAS DONE AN ANALYSIS, FOCUSED ON THE HEALTH
CARE UTILIZATION FOR MEDICARE AND MEDICAID POPULATIONS, HERE PROCESS LEVEL OUTCOMES. DEMONSTRATED IN 16 ZIP CODES ON THE SOUTH
SIDE, THE DARKER COLORED ZIP CODE, THE MORE PEOPLE OF THE ENTIRE POPULATION OF THE ZIP
CODE RECEIVE AT LEAST ONE HEALTHY RX, THIS DEMOGRAPHIC ON THE SOUTH IS AFRICANAMERICAN
BUT AS WE GO TO THE FAR SOUTHEAST AND NORTH AND WEST THERE’S A VERY SUBSTANTIAL HISPANIC
AND LATINO AND SPANISH SPEAKING POPULATION. HEALTHY RX GENERATED IN ENGLISH OR SPANISH
DEPENDING ON PREFERRED LANGUAGE IN THE ELECTRONIC MEDICAL RECORD. MORE THAN HALF BELOW THE FEDERAL POVERTY LEVEL,
YOU SEE DEMOGRAPHICS PARTICIPANTS REACHED DURING THE INTERVENTION. THESE DEMOGRAPHICS REFLECT NOT NECESSARILY
THE CENSUS LEVEL DEMOGRAPHICS BUT DEMOGRAPHICS BUT WHO GOES FOR HEALTH CARE 2/3 FAMILY. WE INTEGRATED INTO EPIC AND NEXT GEN PLATFORMS,
THOSE WERE SUPPORTIVE OF OUR EFFORTS TO DO THIS WORK AND INTEGRATING WITH EMR WAS NOT
THE HARD PART CONTRARY TO WHAT PEOPLE EXPECTED. THE NEXT SLIDE GIVES A SNIPPET FROM THE APPENDICES,
SHOWING IT’S NUMBER OF HEALTHY RXs GENERATED FOR EACH CONDITION ALGORITHM. I HIGHLIGHTED ALZHEIMER’S, DEMENTIA, AND WHAT
YOU SEE IF YOU LOOK TO THE FAR RIGHT COLUMN STEADY STATE WHERE THE TECHNOLOGY WAS UP AND
RUNNING IT’S A ALL THE SITES WHERE IT WAS GOING TO OPERATE FOR THE COURSE OF THE DEMONSTRATION
PERIOD YOU SEE 1.3% OF HEALTHY RX GENERATED WENT FOR SOMEBODY WITH ALZHEIMER’S OR RELATED
DEMENTIA. THAT’S ON PAR WITH THE NUMBER OF HEALTHY RXs
GENERATED FOR PEOPLE WITH BREAST OR GYNECOLOGIC CANCER. AS FAR AS REACHING PEOPLE WITH COMMUNITY RESIDING
PEOPLE WITH ALZHEIMER’S AND RELATED DEMENTIA THIS WAS A PRETTY BIG ACCESS POINT FOR US,
IT’S ABOUT 15% OF ALL THE PEOPLE WE THINK WHO ARE LIVING IN THIS GEOGRAPHY WITH THIS
DIAGNOSIS. THE NEXT SLIDE IS WORK SUPPORTED BY SUPPLEMENT
TO CURRENT RO1 STUDY ALLOWING US TO HONE IN ON THAT ALGORITHM FOR ALZHEIMER’S RELATED
DEMENTIA AND GET CAREGIVER INPUT. LITERATURE MIGHT SAY ONE THING, BUT LET’S
TRY TO DEVELOP A CAREGIVERCENTRIC ALGORITHM AND CONNECT PEOPLE TO THE RESOURCES THEY FEEL
THEY NEED. WITH THIS SUPPORT OF THAT SUPPLEMENT FUNDING
WE STARTED TO LOOK AT GEOSPATIAL DISTRIBUTION OF RESOURCES, THAT’S THE MAP YOU SEE HERE,
YOU SEE PARTNERING ORGANIZATIONS, SUPPLEMENT CURRENTLY IN REVIEW TO EXPAND OUT OUR ACCESS
TO DIVERSITY OF CAREGIVERS, THE YELLOW, RED AND BLUE CROSSES. THEN YOU SEE DIFFERENT COLORED TRIANGLES WHICH
REPRESENT GEOSPATIAL DISTRIBUTION OF RESOURCES. YOU KNOW PEOPLE WITH DEMENTIA AND CARE GIVERS
FACE DIFFICULTIES IN URBAN AREAS TRAVELING LONG DISTANCE, MORE THAN A MILE IS LONG DISTANCE
IN TERMS OF TIME IT TAKES AND PHYSICAL BARRIERS. TO GET TO MOST BASIC RESOURCES THERE’S GEOGRAPHIC
DISPARITY IN ACCESS, THIS IS A FIRST PASS LOOK. WHEN WE LOOK DEEPER AT EACH INDIVIDUAL ORGANIZATION
IT’S LIKELY TO FIND MENTAL HEALTH CARE LOCATION THEY MAY NOT HAVE RESOURCES TO PROVIDE SPECIALIZED
CARE FOR PEOPLE WITH DEMENTIA OR ALZHEIMER’S� OR THEIR CARE GIVINGS. SO THIS IS REALLY A FIRST PASS LOOKING AT
THE GEOSPATIAL DISTRIBUTION OF COMMUNITY BASED RESOURCES FOR SELF CARE AND CAREGIVING FOR
THIS POPULATION. SO I WANT TO GIVE YOU A COUPLE QUOTES FROM
CAREGIVERS WHO WE INTERVIEWED DURING THE STUDY PERIOD, BECAUSE IT DOES AT LEAST HIGHLIGHT
FROM TWO VOICES DIFFERENT RESOURCES PEOPLE NEED. WE HAVE SOMEBODY STARTING TO LOOK DOWN THE
ROAD TOWARD NEEDING A PLACE FOR HER LOVED ONE TO GO FULL TIME, STARTING TO WORRY ABOUT
HOW TO PAY FOR THESE RESOURCES, WORRY HEALTH CARE ISN’T GOING TO PAY FOR THE LONG TERM
CARE, AND SO YOU CAN IMAGINE THAT THIS EVOKES CERTAIN KINDS OF COMMUNITY BASED RESOURCES
THIS CAREGIVER MIGHT NEED AT THIS STAGE OF CARE. THE OTHER PERSON IS LOOKING FOR LINE DANCING
CLASSES, REPRESENTATIVE, PEOPLE ARE LOOKING FOR SOCIAL ACTIVITIES THEY CAN DO THAT CAN
INCLUDE THEIR LOVED ONE. ANOTHER PERSON MENTIONED MOVIES. WHAT WOULD HAPPEN IF WE REACHED OUT TO MOVIE
THEATER OWNERS IN THE REGION AND WORKED TO PROVIDE A DAYTIME OPPORTUNITY WHERE A CAREGIVER
COULD SEE A MOVIE AND THERE BE SOMEONE TO HELP SUPPORT THE PERSON WITH DEMENTIA IF THEY
COULDN’T SIT THROUGH IT. JILLIAN IDENTIFIED A COMMUNITY THAT OFFERS
THAT VERY SPECIFIC RESOURCE, NOT HERE IN CHICAGO THOUGH. I’LL WRAP BY SHOWING YOU WHERE WE’RE GOING
WITH THE SCIENCE ON THIS WORK. WE HAVE BEEN SUPPORTED BY AN RO1 UNDER THE
SYSTEM SCIENCE AREA OF INTEREST, AT THE NATIONAL INSTITUTE ON AGING. THE NEXT SLIDE SHOWS HOW WE LOOK AT COMMUNITY
RX AS A COMPLEX ADAPTIVE SYSTEM, AND THE AGENTS, WE’VE IDENTIFIED IN THIS SYSTEM, AND HOW WE
ARE STARTING TO TRY TO UNDERSTAND THE IMPACT OF CONNECTING PEOPLE TO COMMUNITYBASED RESOURCES
NOT JUST ON INDIVIDUAL HEALTH BUT ON THE NETWORKS, SOCIAL NETWORKS OF CAREGIVERS AND PEOPLE AFFECTED
BY DEMENTIA ON NETWORKS OF CARING COMMUNITY AND COMMUNITY BASED RESOURCES THEMSELVES SO
WHAT’S THE IMPACT OF CONNECTING PEOPLE TO COMMUNITY BASED RESOURCES TO SUPPORT ON THE
LOCAL ECONOMY, THE IMPACT ON YOUTH, FOR EXAMPLE, THROUGH THE MAPS CORPS PROGRAM, ENABLING US
TO DEVELOP FORECASTING METHODS TO HELP DECISION MAKERS WHETHER A DECISION MAKER, VICE PRESIDENT
OF POPULATION AT A HEALTH CENTER WHERE I WORK OR LEGISLATOR, HOW DO WE START TO THINK ABOUT
ECONOMICS OF SUPPORTING CAREGIVING AND SELF CARE FOR COMMUNITYRESIDING PEOPLE WITH DEMENTIA. WE THINK PEOPLE NEED THIS KIND OF INFORMATION,
IN ORDER TO MAKE INVESTMENT DECISIONS HOW TO SUPPORT ASPECTS OF CARE AND SCIENCE IS
TRYING TO SUPPORT THOSE KINDS OF DECISIONS. THE WORK WE’RE DOING IS MOST CLOSELY RELATED
TO NAPA GOAL NUMBER 3, WHICH I UNDERSTAND TO BE ON GOAL TO EXPAND SERVICES AND SUPPORT
FOR PEOPLE WITH DEMENTIA AND FAMILIES. I PUT OUT A FEW LAST THOUGHTS. WE’RE INTERESTED IN INTENSIVE CARING FOR CAREGIVERS
AND THINK THIS IDEA OF INTENSIVE CARING NEEDS TO BE HYPERLOCAL, ONGOING, ESCALATING, AND
WE OUGHT TO HAVE A SPECIAL CONCERN FOR PEOPLE TRYING TO DO THIS WORK INNING HIGHER POVERTY
COMMUNITIES. WE’RE ALSO THINK SCIENCE SHOWS A NEED FOR
PROACTIVE TRANSPARENCY. COMMUNITY BASED PROGRAMS OR SERVICE PROVIDER
THAT RECEIVE GOVERNMENT OR PHILANTHROPIC FUNDING NEED TO HAVE THE SUPPORT TO MAKE THE PROGRAMS
AND SERVICES FULLY TRANSPLANT, PROACTIVELY, SO THAT IF I NEED TO CONNECT SOMEBODY TO SERVICE
I KNOW WHERE IT IS, WHO IS ELIGIBLE, HOW TO GET THERE. I DON’T SPEND MY LAST DOLLAR AND LIST BAT
OF ENERGY GETTING TO A PLACE AND BEING TURNED AWAY BECAUSE I DON’T MEET CRITERIA OR IT’S
NOT THERE ANYMORE. LASTLY WE NEED TO� SUSTAINABILITY IS A WORD
WE’RE USING MORE THAN WE USED TO, BUT REALLY WHERE THE RUBBER MEETS THE ROAD IS THINKING
ABOUT HOW WE INCENTIVIZE BUSINESS OWNERS, GOVERNMENTS, COMMUNITYBASED ORGANIZATIONS
TO PROVIDE ONSITE SUPPORT FOR PEOPLE WITH DEMENTIA, HOW DO WE CREATE JOY, HOW DO WE
STIMULATE BUSINESS, HOW DO WE HELP PEOPLE DO THEIR BUSINESS BETTER BY GIVING THEM AN
OPPORTUNITY TO SERVE THIS GROWING PART OF OUR POPULATION. AND I KNOW THAT’S SOMETHING OF A PROVOCATIVE
THOUGHT BUT THAT’S HOW WE’RE TRYING TO THINK. I’LL END BY ACKNOWLEDGING THE DIVERSITY OF
SCIENTISTS AND PEOPLE WHO WORK IN MY LAB HERE AT THE UNIVERSITY OF CHICAGO, AND WE’RE JUST
REPRESENTATIVES OF A VERY LARGE COLLABORATIVE OF COMMUNITY AND UNIVERSITY PEOPLE WORKING
TOGETHER TO SOLVE THESE BIG PROBLEMS. SO THANK YOU SO MUCH FOR THE OPPORTUNITY TO
PARTICIPATE TODAY.>>WELL, THANK YOU, STACY. VERY INFORMATIVE. ANY CLARIFICATION QUESTIONS FOR HER BEFORE
WE MOVE ON? LET’S TURN TO GRACE FROM NATIONAL ALLIANCE
ON CAREGIVING. THANK YOU. I WANT TO THANK EVERYONE FOR THE OPPORTUNITY. THE ADVISORY COUNCIL FOR LOOKING AT THE ISSUE
OF CARE AND SUPPORT AND FAMILY CAREGIVING. I ALSO JUST WANTED TO SAY HOW MEANINGFUL IT
IS SO MANY MEMBERS OF THE ADVISORY COUNCIL HAVE THAT PERSON CAREGIVING EXPERIENCE AND
THAT YOU’RE WILLING NOT ONLY TO LET IT INFORM YOUR WORK BUT TO TALK OPENLY ABOUT EXPERIENCES
AND SHARE THEM AS ADVOCATE AND MAKE IT MORE COMFORTABLE FOR OTHER CAREGIVERS AROUND THE
WORLD EVEN TO CONFRONT THIS IN THEIR OWN LIFE. SO IF YOU’RE NOT FAMILIAR WITH US, WE A NATIONAL
NONPROFIT, 21 YEARS OLD SO WE’RE FULLY GROWN THIS YEAR, VERY PROUD OF US. WE’RE KNOWN REALLY FOR THREE PRIMARY WORK
AREAS. WE DO PUBLIC POLICY RESEARCH ACROSS A LIFESPAN
ON FAMILY CAREGIVING. WE HAVE A NETWORK OF STATE AND LOCAL CAREGIVING
ADVOCATES THAT GOES OUT AND WORKS ON GRASS ROOTS ISSUES RELATED TO CAREGIVING. WE DO SOME FEDERAL ADVOCACY AND WE’RE ALSO
THE SECRETARIAT FOR THE INTERNATIONAL ALLIANCE OF CARE ORGANIZATIONS WHICH REPRESENTS 14
DIFFERENT COUNTRIES THAT WORK ON CARE ISSUES. AND ONE THING I CAN TELL YOU HAVING WORKED
IN OTHER ASPECTS OF CAREGIVING, CANCER, RARE DISEASE, MENTAL ILLNESS, DEMENTIA CAREGIVING
IS A MARATHON. WE ARE LOOKING AT A LONG TRAJECTORY AS WELL
AS INCREASING BURDEN ON THE CAREGIVER AS DISEASE PROGRESSES, IN COMPARISON TO A CONDITION LIKE
CANCER WHERE IT’S INTENSE CAREGIVING SITUATION BUT INTERMITTENT CARE OVER A SHORTER PERIOD
OF TIME. NOW, THIS REPORT IS SECONDARY DATA ANALYSIS
OUT OF A LARGER REPORT WE DO EVERY FIVE YEARS WITH AARP, CAREGIVING IN THE U.S., INCLUDING
RESPONDENTS WITH OVERSAMPLES FROM MULTICULTURAL POPULATION INCLUDING AFRICANAMERICAN, ASIANAMERICAN
AND HISPANIC OR LATINO AMERICANS. IF YOU THINK THIS IS THE BEST PRESENTATION
I’VE EVER SEEN, I WISH I KNEW MORE AND COULD READ MORE YOU’RE IN LOOK. I HAVE HARD COPIES OF THE REPORT I’M WELCOME
TO SHARE WITH THE ADVISORY COUNCIL IF YOU WANT TO DIG IN DEEPER. THIS PARTICULAR REPORT IS A DEEP DIVE ON DEMENTIA
RESPONDENTS IN THE LARGER CARING GIVING IN THE U.S. DATASET CONDUCTED IN PARTNERSHIP
WITH ALZHEIMER’S ASSOCIATION AND SUPPORTED BY GRANT FUNDING FROM HOME INSTEAD, SENIOR
CARE AND ELY LILLY. RESPONDENT INDICATED ALZHEIMER’S, DEMENTIA,
PRIMARY OR SECONDARY REASON REQUIRING CARE. WE ESTIMATE BASED ON THIS DATASET THERE’S
APPROXIMATELY 9.6�MILLION PEOPLE WHO ARE FAMILY CAREGIVERS FOR SOMEONE WITH DEMENTIA,
ROUGHLY 22% OF THE POPULATION. SOME PEOPLE MAY BE THINKING, WELL, WAIT A
SECOND, ALZHEIMER’S FACTS AND FIGURES IS TALKING ABOUT 15�MILLION PEOPLE. I WOULD AGREE THE 15�MILLION CAREGIVERS
NUMBER IS IN LINE WITH OURS BECAUSE IT CAPTURES BOTH THE DATA FROM CAREGIVING IN THE U.S.
AND INFORMATION FROM THE SURFACE THAT INCLUDES CAREGIVERS WHO ARE NOT ONLY DOING ACTIVITIES
OF DAILY LIVING, IADL IT’S AND MEDICAL NURSING TASKS BUT EMOTIONAL ASPECTS, TWO PREVALENCE
NUMBERS ARE IN LINE WITH THAT SENSE. NO ONE WOULD BE SURPRISED THE TYPICAL DEMENTIA
CAREGIVER IS USUALLY A WOMAN, MIDDLE AGED, AND OFTEN OLDER THAN THE NONDEMENTIA CAREGIVER. YOU KNOW 54 YEARS OLD COMPARED TO SOMEONE
YOUNGER IN THE WORK FORCE, SHOULDER A HIGH BURDEN OF CARE, 28 HOURS OF CARE PER WEEK
AND MOST PERFORMING MEDICAL NURSING TASKS SO THINK, FOR EXAMPLE, INJECTIONS, WOUND CARE,
CATHETERS, AND THEY ARE DOING THAT WITH NO PRIOR TRAINING. SO I THINK THAT’S SOMETHING THAT IS REALLY
NEEDS TO STICK IN YOUR MIND AS THAT CAN YOU IMAGINE YOUR FRIEND, YOUR FAMILY, YOUR NEIGHBOR
COMING OVER AND HELPING YOU TO USE A CATHETER AND NO ONE HAS SHOWN THEM HOW TO DO THAT BEFORE. NOW IN THE REPORT WE ALSO TALK ABOUT TWO PROMISING
MODELS OF CARE, AND WE PICKED PROGRAMS THAT ARE IN THE DEPARTMENT OF VETERANS HEALTH,
PARTIALLY BECAUSE THERE’S A TON OF DATA TO SHOW NOT ONLY THAT THE PROGRAMS WORK BUT IMPACT
ON THE HEALTH CARE SYSTEM WITHIN THE V.A. PARTNERS IN DEMENTIA CARE PROGRAM IS A TELEPHONEBASED
PROGRAM. WHAT WE LIKE ABOUT THE TELEPHONEBASED PROGRAMS
THEY ALLOW OUTREACH TO RURAL POPULATIONS OR OTHER GROUPS THAT OTHERWISE ONCE BE ABLE TO
COME IN AND GET COUNSELING AND SUPPORT SERVICES. THE OTHERS I’M SURE YOU’RE FAMILIAR WITH IS
REACH PROGRAM, WHICH HAS GONE THROUGH SEVERAL ITERATIONS, WHICH HAS BEEN EXPANDED. THIS IS ONE THAT HAS ALSO BEEN STUDY IN RANDOMIZED
CONTROL TRIAL, WE FIND IT TO BE ESPECIALLY PROMISING AS A MODEL FOR CARE AND SUPPORT
FOR PEOPLE WHO ARE FAMILY CAREGIVERS AS WELL AS HELPING THE PERSON WITH DEMENTIA MANAGE
THEIR OWN CONDITION. THE NEXT SECTION OF MY PRESENTATION, YOU GUYS
ARE GETTING A SNEAK PEEK. WE ARE THRILLED TO BE PART OF THE OCTOBER
SUMMIT ON DEMENTIA RESEARCH CARE AND SUPPORT AND WE HAVE BEEN WORKING WITH OUR COLLEAGUES
AT THE ALZHEIMER’S ASSOCIATION TO IDENTIFY EIGHT AREAS WHERE WE THINK THERE COULD BE
ADDITIONAL RESEARCH IN CAREGIVING. THIS IS NOT EVERYWHERE WHERE THERE NEEDS TO
BE MORE RESEARCH IN CAREGIVING. THAT WOULD BE WAY TOO LONG AND YOU WOULD KICK
ME OUT BECAUSE WE’D NEVER GET THROUGH THE RECOMMENDATIONS. AND IT IS ALSO FOCUSED ON RESEARCH AREAS WHERE
WE NEED TO KNOW MORE AND RESEARCH AREAS WHERE WE NEED TO UNDERSTAND BETTER HOW TO GET OUT
WHAT IS ALREADY EXISTING OR WHAT IS ALREADY� WE ALREADY KNOW BUT MAYBE WE HAVEN’T REALLY
DISSEMINATED THAT OUT TO CAREGIVERS OR HEALTH SYSTEMS AND OTHER PROVIDERS. THE FIRST ONE IS REALLY FOCUSING ON OLDER
PEOPLE. AND I HOPE MY GRANDMOTHER WILL FORGIVE ME
FOR SAYING THE OLD BUT I’M USING THE TERM FROM ACADEMIA WHEN WE LOOK AT PEOPLE CARRYING
FOR SOMEONE WITH DEMENTIA, THE PERSON RECEIVING CARE IS USUALLY OLDER THAN OTHER TYPES OF
CONDITIONS, SO ON AVERAGE ABOUT 77 YEARS OLD, A QUARTER OF THEM ARE 85 OR OLDER, AND WE
KNOW THE DEMENTIA CAREGIVERS THEMSELVES TEND TO BE OLDER AND IT HAS A BIGGER IMPACT ON
THEIR HEALTH. WE’RE RECOMMENDING ADDITIONAL RESEARCH IN
GERIATRIC AND DEMENTIA SPECIFIC TRAINING AS WELL AS ANALYZING NEEDS OF WHAT ACADEMIA WOULD
CALL THE OLDEST OLD, PARTICULARLY THE UNIQUE CARE NEEDS OF OLDER CAREGIVERS AND CARE RECIPIENTS. WE’VE HEARD ABOUT THIS THIS MORNING, SORT
OF THE SHIFT IN HEALTH CARE FROM ACUTE AND POST ACUTE INSTITUTIONAL TO HOME BASED TO
SAVE MONEY, A WONDERFUL WAY TO MEET TRIPLE AIM TO IMPROVE SATISFACTION FOR INDIVIDUALS
BUT ONE OF THE CHALLENGES WHEN YOU SHIFT HEALTH CARE TO THE HOME IS THAT YOU’RE NOW ASKING
THE FAMILY TO TAKE ON MORE AND TO BECOME A BIGGER PIECE OF THAT HEALTH CARE TEAM. AND SO WE’RE RECOMMENDING MORE RESEARCH TO
UNDERSTAND THE DYNAMIC BETWEEN THE CAREGIVER AND HOME CARE PROVIDERS, AND PROVIDING A SAFE
HOME ENVIRONMENT, AS WELL AS EXAMINING CAN THE HOME CARE PROVIDER PROVIDE TRAINING AND
RESPITE TO DEMENTIA CAREGIVER. FOR EXAMPLE, COULD A VISITING NURSE UNDER
A POST ACUTE CARE BENEFIT SHOW THE CAREGIVER HOW TO USE A CATHETER? THAT’S THE KIND OF THING WHERE WE COULD USE
MORE RESEARCH TO EXPLAIN WHY HOMEBASED CARE COULD BE BENEFICIAL AS WELL AS WHAT WE NEED
TO DO TO MAKE SURE THE FAMILY IS PREPARED TO TAKE ON THAT BIGGER REQUEST FROM THE HEALTH
CARE SYSTEM. THIS IS AN AREA THAT’S COME UP A LOT IN MEDICAID
AND HOME AND COMMUNITYBASED SERVICES, BUT THE RECOMMENDATION WOULD BE TO DEVELOP A COMPREHENSIVE
CAREGIVER ASSESSMENT THAT DETERMINES THE HEALTH, WILLINGNESS AND ABILITY OF THE CAREGIVER TO
PROVIDE CARE. WE SEE IN OUR DATA WE ASK THIS QUESTION, DID
YOU HAVE A CHOICE IN BECOMING A CAREGIVER? THAT COULD MEAN I HAD NO CHOICE BECAUSE THERE
WAS NO ONE ELSE TO DO IT, AND IT COULD MEAN I HAD NO CHOICE BECAUSE THERE WAS NEVER A
QUESTION, I WAS ALWAYS GOING TO FILL THIS ROLE. REGARDLESS OF YOUR MOTIVATION BEHIND ANSWERING
THE CHOICE QUESTION, IF YOU HAD NO CHOICE, YOU WILL HAVE A MUCH MORE DIFFICULT TIME,
EXPERIENCE MORE FINANCIAL STRAIN, YOU’LL EXPERIENCE MORE EMOTIONAL STRAIN, AND OFTEN BE LESS PREPARED
TO DO THE ACTIVITIES OF CAREGIVING. SO THE ASSESSMENT SHOULD LOOK AT NOT JUST
DOES THIS PERSON UNDERSTAND WHAT’S GOING ON, BUT WHAT IS THE WILLINGNESS TO PROVIDE CARE
TO THE PERSON WITH DEMENTIA? AND THEN LET’S IDENTIFY RESOURCES THAT CAN
HELP THAT CAREGIVER ENGAGE IN SELF CARE IF THAT’S AN AREA THEY ARE NOT PREPARED TO ENGAGE
IN. THIS WAS ALSO DISCUSSED BY SOME OF THE OTHER
WONDERFUL PRESENTATIONS THIS MORNING. YOU KNOW, CAREGIVING HAS A HUGE IMPACT ON
WORK. WE KNOW THAT DEMENTIA CAREGIVERS WHO ARE WORKING
WORK AN AVERAGE OF 34 OR 35 HOURS A WEEK, WHILE THEY ARE CAREGIVING, MORE THAN HALF
WORKING FULL TIME, AND MANY HAD TO MAKE WORKPLACE ACCOMMODATIONS IN ORDER TO CARE AND BE IN
THE WORKPLACE. SO A RESEARCH AREA WOULD BE IDENTIFYING WHAT
WE DESCRIBE AS LOW COST, NO LOST WORKPLACE ACCOMMODATIONS. IN OUR SOCIETY, IT’S PROBABLY NOT FAIR TO
ASK EMPLOYERS TO SHOULDER THE ENTIRE COST OF CAREGIVING. BUT WE CAN ASK EMPLOYERS TO LOOK AT WHAT IS
LOW COST, NO COST, WHAT TO WE KNOW WORKS SUCH AS PAID LEAVE OR FLEXIBILITY WORK ENVIRONMENTS,
HOW CAN WE ENGAGE TO KEEP IN THE WORKFORCE AND CONTINUE TO HAVE A CAREER. THE OTHER THING THAT WE SEE IN ALL OF OUR
RESEARCH AND IT’S NO DIFFERENT IN DEMENTIA CAREGIVING IS THAT PEOPLE WANT TO BE PART
OF THE HEALTH CARE TEAM SO A CAREGIVER IS NOT JUST AN INTERVENTION, RIGHT? A CAREGIVER IS REALLY A MEMBER OF THE TEAM
LIKE A NURSE, A PHYSICAL THERAPIST, EVEN THE NEUROLOGIST, THEY ARE PART OF THE CIRCLE OF
CARE. SO HOW CAN WE SIMPLIFY CARE COORDINATION AND
CARE PLANNING, ARE THERE TECHNOLOGIES WE CAN USE TO HELP INSERT THE CAREGIVER INTO THAT
HOME NETWORK OF CARE. ON THE SAME NOTE MANY PEOPLE WANT TO BE INVOLVED
IN THE MEDICAL CARE, AND THEY WOULD LIKE TO BE INCLUDED IN THE CARE RECIPIENTS CHART. THERE ARE SOME POLICY EFFORTS NOW TO DO THIS. THERE’S A STATE PIECE OF LEGISLATION FROM
AARP, THE CARE ACT, AND YOU WOULD THINK THIS WOULD BE SOMETHING THAT HAPPENS NORMALLY BUT
IN MOST CASES THE FAMILY CAREGIVER IS NOT INCLUDED ON THE MEDICAL CHART SO IF SOMETHING
HAPPENS TO THE PERSON WITH DEMENTIA, IF THEY CHANGE SETTINGS, IF THERE’S AN EMERGENCY,
GETTING IN CONTACT CAN THE CAREGIVER THERE THERE’S NOT MORE FORMAL DOCUMENTS IS PLACE
IS DIFFICULT. THERE SHOULD BE MORE RESEARCH IN THE AREA
OF SHARED DECISION MAKING PARTICULARLY WHETHER IT PLAYS A ROLE IN CARE PLANNING BETWEEN THE
CAREGIVERS AND PROVIDERS. HOW DO WE GET THE FAMILY ENGAGED AS WELL AS
THE PATIENT? RESPITE IS AN AREA WHERE THERE’S A LOT OF
EVIDENCE THAT RESPITE CAN ACTUALLY IMPROVE THE LIVES OF CAREGIVERS AND OUTCOMES FOR THE
PERSON WITH DEMENTIA. BUT THERE WERE NOT A LOT OF PEOPLE USING RESPITE. BASIC RECOMMENDATION HERE AGAIN WE KNOW WHAT
WORKS, LET’S EXAMINE HOW WE CAN PROMOTE GREATER ACCESS AND AWARENESS OF RESPITE CARE AND IDENTIFY
THE EFFECTIVE CHARACTERISTICS OF RESPITE. THE OTHER IS RELATED TO RESEARCH. WE KNOW A LOT OF CAREGIVERS WANT RESOURCES
AND CAN’T ACCESS OR HAVE DIFFICULTY FINDING AFFORDABLE AS MUCH AS IN THE COMMUNITY. CAN WE EXPAND TO LONG TERM SERVICE AND SUPPORT
AND WHAT TYPES OF MODELS MIGHT WORK RELATED TO FAMILY COUNSELING, SUPPORT GROUPS AND TELEPHONEBASED
SUPPORT AND ASSISTANCE TO DEMENTIA CAREGIVERS. I WOULD JUST SAY IF YOU’RE INTERESTED IN LEARNING
MORE ABOUT THIS REPORT AND FINDINGS, WE’RE SO HONORED NEXT WEEK TO HAVE MATTHEW BOMBGART
FROM ALZHEIMER’S ASSOCIATION AS OUR GUEST SPEAKER AND THE LINK TO DOWNLOAD THE REPORT
AND FINAL RESEARCH RECOMMENDATIONS WILL BE PREPARED AS PRESUMMIT ACTIVITY FOR THE OCTOBER
SUMMIT, TO GIVE PEOPLE FOOD FOR THOUGHT. I WILL LEAVE MY INFORMATION HERE. YOU’RE WELCOME TO CALL OR EMAIL MAY WITH QUESTIONS
OR THOUGHTS OR ADDITIONAL IDEAS THAT YOU HAVE OR WHERE WE SHOULD GO NEXT.>>THANKS VERY MUCH, GRACE. QUESTIONS, CLARIFICATION? ANYTHING. ERIN, WRAP UP.>>I WILL WRAP IT UP. SO I’M ERIN LONG, HERE FROM THE ADMINISTRATION
FOR COMMUNITY LIVING. I’M GOING TO TALK ABOUT LIVING ALONE WITH
DEMENTIA PREVALENCE, CHALLENGES, STRATEGIES, FOR SERVICE PROVIDERS. WE HAVE SINCE 2014 BEEN TARGETING LIVE ALONE
ACTIVITIES THROUGH OUR GRANT PROGRAMS AND THAT’S WHAT I’M GOING TOO TALK ABOUT. BACKGROUND, FOR PREVALENCE AND SEVERITY, ACCORDING
TO THE NHATS MORE THAN 30% OF PERSONS WITH DEMENTIAS LIVE ALONE, WERE LIVING ALONE IN
2011. AND LIVING ALONE WITH DEMENTIA REALLY INCREASES
VULNERABILITIES BECAUSE OF THE INDIVIDUAL’S LACK OF AWARENESS OF THEIR IMPAIRMENT, AND
THAT CONTRIBUTES TO ADDITIONAL VULNERABILITY THROUGH THEIR PROBLEMS WITH VISION, GAIT,
ABILITY TO COMMUNICATE, AND MAKING UNSAFE CONDITIONS WHEN THEY ARE IN HOMES ALONE. AND BECAUSE THEY ARE ALONE, THERE’S NO ONE
THERE TO NECESSARILY NOTICE PROGRESSIVE DECLINES THAT THEY ARE EXPERIENCING UNTIL THERE’S ACTUALLY
AN EMERGENCY OR CRISIS. SERVICE PROVIDERS, WE’RE WORKING VERY HARD
TO IDENTIFY INDIVIDUALS THAT ARE LIVING ALONE BUT THERE ARE MANY CHALLENGES SERVICE PROVIDERS
ARE FACED WITH IN THAT HUNT REALLY FOR FOLKS LIVING IN THE COMMUNITIES WITHOUT� WHEN
I SAY THEY ARE LIVING ALONE IT DOESN’T MEAN THEY DON’T HAVE A CAREGIVER BUT THEY DON’T
HAVE SOMEONE IN THE HOUSE. THEY MAY HAVE A CAREGIVER THAT’S A NEIGHBOR
OR OFFSPRING, CHILDREN LIVING IN THE SAME COMMUNITIES BUT JUST NOT IN THEIR HOUSE WITH
THEM 24/7. SO SERVICE PROVIDERS ARE STRUGGLING TO IDENTIFY
INDIVIDUALS IN THEIR HOMES ALONE. GETTING INTO HOMES, ASSESSING THE RISK IN
ORDER TO GET INTO THAT HOME TO ASSESS THE RISK THEY DO HAVE TO, YOU KNOW, GET SORT OF
A TRUSTED PERSON TO HELP THE PROVIDER ACTUALLY BUILD A TRUSTING RELATIONSHIP TO MAKE ANY
ASSESSMENTS AND ALLOW THEM TO PROVIDE SOME SUPPORT FOR SAFETY AND ALL ALONG WHILE RESPECTING
THEIR AUTONOMY AND INVOLVING FAMILY MEMBERS AND FRIENDS AND EXPANDING THEIR CARE CIRCLES
AND CAREGIVER NETWORKS IS CHALLENGE FOR PROVIDERS, COORDINATING WITH DEVELOPING SYSTEMS WHERE
THEY ARE ABLE TO COORDINATE WITH PAID PROVIDERS AND OTHER COMMUNITY SERVICES THAT ARE FORMAL,
AND WHEN AND IF THE TIME COMES ASSISTING WITH TRANSITIONING TO OTHER PLACES FOR THEM TO
LIVE, NEW SETTINGS, WHETHER IT’S MOVING OUT OF THEIR HOME AND MOVING INTO THEIR CHILDREN’S
HOMES OR MOVING INTO A LONGTERM CARE SETTING. SO IN 2014, THE ADMINISTRATION ON AGING WITHIN
THE COMMUNITY� ADMINISTRATION FOR COMMUNITY LIVING, WE WERE FORTUNATE TO RECEIVE FUNDS
TO BEGIN ADMINISTRATION ALZHEIMER’S DISEASE INITIATIVE SPECIALIZED SUPPORTIVE SERVICES
PROGRAM AND THROUGH THAT WE HAVE TARGETED FOUR GAPS IDENTIFIED BY THE ADVISORY COUNCIL,
ONE OF WHICH IS PROVIDING EFFECTIVE SERVICES TO PERSONS LIVING ALONE IN THE COMMUNITY,
WITH ADRD, PROVIDING EFFECTIVE CARE AND SUPPORTIVE SERVICES FOR PEOPLE WITH MODERATE TO SEVERE
AND THEIR CAREGIVERS, PROVIDING� IMPROVING QUALITY AND EFFECTIVENESS OF SERVICES FOR
INDIVIDUALS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES AND THOSE AT HIGH RISK OF DEVELOPING
ADRD AND ALSO VERY IMPORTANTLY DEVELOPING AND DELIVERY OF BEHAVIORAL SYMPTOM MANAGEMENT
TRAINING AND EXPERT CONSULTATIONS FOR FAMILY MEMBERS, FAMILY CAREGIVERS. THIS PROGRAM IS COMMUNITY BASED. AT ONE POINT IT WAS STATE BASED BUT IT HAS
INCLUDED STATES BUT NOW WE’VE FOCUSED ON COMMUNITYBASED ORGANIZATIONS. WE ARE� IT’S DESIGNED TO FILL THOSE EXISTING
GAPS IN SERVICES AND IT FOCUSES ON� HAS SEVERAL REQUIREMENTS THAT COME WITH IT, BUT
IT FOCUSES ON THE PROVISION OF EVIDENCEBASED AND EVIDENCEINFORMED INTERVENTIONS, HEAVY
DIRECT SERVICE COMPONENT TO ALL THE PEOPLE THAT BENEFIT FROM THE SERVICES AND THEN ALSO
THE GRANTEES ARE REQUIRED TO INCLUDE A MATCH IN THEIR PROGRAMS. THE COMMUNITYBASED ORGANIZATIONS ARE THE ELIGIBLE
ENTITIES. IT’S NOT FOR FOREIGN ENTITIES, SOLE PROPRIETORSHIPS
OR INDIVIDUALS. SO WE HAVE THROUGH THIS PROGRAM HAVE ACTUALLY
32 GRANTS ACTIVE, AND 25 OF THE 32 ARE FOCUSING ON APPROACHES TO PROVIDING SERVICES FOR INDIVIDUALS
LIVING ALONE. I’M GOING TO GO THROUGH A FEW APPROACHES COMBINED
AND GIVE YOU A SENSE OF WHAT WE’RE DOING AND ACROSS THE COUNTRY ON WORKING WITH FOLKS THAT
LIVE ALONE. WE HAVE A PROGRAM IN CALIFORNIA THAT IS ACTUALLY
WORKING WITH THE FOLKS IN THE PUBLIC HOUSING TO THE CARE COORDINATORS IN THE PUBLIC HOUSING
TO IDENTIFY INDIVIDUALS AND CONNECT THEM WITH THE SERVICES IN THE COUNTY. AND WE ARE IN THE STATE OF DELAWARE, WE ARE
PILOTING A SENSOR TECHNOLOGY PROGRAM TO PROTECT THE HEALTH AND SAFETY OF INDIVIDUALS LIVING
IN THEIR HOUSES, THAT’S A VERY NEW PROJECT, THEY ARE STILL IN THE PROCESS OF IDENTIFYING
WHICH TECHNOLOGIES THAT THEY ARE GOING TO MAKE AVAILABLE TO THE MEMBERS OF THEIR COMMUNITY. WE HAVE VERY HIGH HOPES BECAUSE TECHNOLOGY
IS AT THE TOP OF EVERYONE’S LIST AND WILL BE VERY HELPFUL. IN SEVERAL PROGRAMS THEY ARE TRAINING GATE
KEEPERS, THEY HEAVY EMPHASIS ON FIRST RESPONDERS, SUCH AS LAW ENFORCEMENT, FIREMEN AND WOMEN,
EMERGENCY PERSONNEL, AND ACTUALLY WE HAVE EMTFRIENDLY VISITOR PROGRAMS BEING IMPLEMENTED
IN STATES. WE’RE ALSO� THERE’S DEMENTIA FRIENDLY AMERICA,
OTHER DEMENTIAFRIENDLY INITIATIVES TAKING PLACE THAT ARE PROVIDING BUILDING AWARENESS
IN THE COMMUNITIES, BUT IN THE GATE KEEPER PROGRAMS WE HAVE THEM IN WYOMING, FLORIDA,
NEW YORK, CALIFORNIA, NORTH CAROLINA, TEXAS, THAT’S JUST NAMING SOME OFF THE TOP OF MY
HEAD, AND WE’RE VERY HOPEFUL GETTING A LOT OF INFORMATION OUT AND FINDING SUCCESS IN
FINDING THE INDIVIDUALS. IN THE DISTRICT OF COLUMBIA WE’RE WORKING
ON MONEY MANAGEMENT ISSUES AND TEACHING MONEY MANAGEMENT SKILLS AND TRAINING REPRESENTATIVE
PAYEES TO ASSIST PEOPLE TO STAY IN THEIR HOMES LONGER. MOST PEOPLE KNOW FINANCES ARE A PARTICULAR
CHALLENGE IN EARLY STAGES AND WITH THAT LEVEL OF SUPPORT PEOPLE WOULD BE ABLE TO CONTINUE
TO MAINTAIN THEIR PRESENCE IN THE COMMUNITY. WE HAVE PROGRAMS DEVELOPING ENHANCED ASSESSMENT
ALSO AND REFERRAL TOOLS SO WHEN OUR COMMUNITY PROGRAMS ENCOUNTER SOMEONE THAT IS RECOGNIZED
AS LIVING ALONE, THAT THEY WILL HAVE ADDITIONAL TOOLS TOWARDS MANAGING THEIR CASES BECAUSE
OF THE CIRCUMSTANCES OF THEIR LIVING. AND ALSO A BIG COMPONENT IS FORMING COMMUNITY
SUPPORT NETWORKS, JUST BROADLY, TO ALLOW PEOPLE TO VOLUNTEER TIME, TO GO INTO PEOPLE’S HOMES,
VARIATIONS OF FRIENDLY VISITOR PROGRAMS, JUST TRAINING COMMUNITY MEMBERS THAT ARE INTERESTED
IN HELPING THEIR NEIGHBORS AND MEMBERS OF THEIR COMMUNITY AND WE’RE DOING THAT IN�
THEY ARE DOING VOLUNTEER PROGRAMS IN WISCONSIN AND FLORIDA. I WANT TO GIVE YOU A COUPLE HIGHLIGHTS OF
PROGRAMS, IN THREE PROGRAMS, IN TEXAS CASE MANAGEMENT REFERRAL PROGRAM. THEY ARE IDENTIFYING� EQUIPPING SERVICE
PROVIDERS AND POINT OF ENTRY ENTITIES, ONE OF THE BIG FOCUSES IS HAVING SORT OF A SINGLE
POINT OF ENTRY AND NO WRONG DOOR SO THAT WHEN COMMUNITY SERVICE PROVIDERS ENCOUNTER INDIVIDUALS
WITH ANY FORM OF DEMENTIA THEY ARE KNOWLEDGEABLE ENOUGH TO RECOGNIZE FOR WHAT IT IS AND PROVIDING
PEOPLE ACCESS TO THE APPROPRIATE SERVICES AND SUPPORTS. IN TEXAS THEY HAVE SPECIAL PROTOCOLS, REFERRAL
PROTOCOLS INCLUDING SCREENING FOR DEMENTIA AND ASSESSMENT TOOLS ALONG WITH� SO THEY
CAN TIE THEM TO THE APPROPRIATE LOCAL RESOURCES. AND THEN THEY HAVE ALSO DEVELOPED A SPECIFIC�
DEMENTIASPECIFIC CASE MANAGEMENT PROGRAM TO COMPLEMENT THE PROTOCOLS AND THE CASE MANAGEMENT
PROGRAM THAT IS TARGETING INDIVIDUALS LIVING AT HOME ALONE WITH ADRD OR AT RISK OF DEVELOPING
ADRD. WE HAVE A REALLY EFFECTIVE AND COMPELLING
PROGRAM THAT IS GOING ON IN SOUTHERN MAINE. AND THEY HAVE A COMMUNITY SUPPORT PROGRAM
THAT THEY ARE PILOTING IN YOUR COUNTY. AND MOST� WHAT THEY ARE DOING IS FOCUSING
ON GOING THROUGH MEALS ON WHEELS, TRAINING MEALS ON WHEELS. THEY HAVE DEVELOPED AN EXPANDED SCREENING
TOOL FOR MEALS ON WHEELS PROVIDERS AND THEY ARE GETTING OUT IN THE COMMUNITY AND GETTING
INTO HOMES THAT ARE TRUSTED, YOU KNOW, GOING BACK TO ONE OF THE STRUGGLES THAT THEY HAVE
COME TO IDENTIFY AND THEY ARE GETTING INTO HOMES AND THEY ARE IDENTIFYING THESE FOLKS
THAT ARE ALONE AND OFTENTIMES BY THE TIME THAT THEY ARE IDENTIFYING IT, IT IS A CRISIS,
MAKING FOR COMPLEX CASES, AND BY COMPLEX CASES I MEAN VERY HIGH LEVELS OF UNMET NEEDS. THEY POSSIBLY COMORBIDITY WITH MENTAL ILLNESS. PERHAPS MAY HAVE A FAMILY MEMBER CLOSE BY
BUT MAYBE IT’S A DYSFUNCTIONAL RELATIONSHIP, OR THEY ARE ACTUALLY ALONE AND FRANKLY JUST
A LACK OF CONNECTION TO A HEALTH SYSTEM SPECIFICALLY. THEY ARE� THEY HAVE A TEAM OF DEMENTIA SPECIALISTS
SERVING THEIR CASES AND THEY HAVE DEVELOPED A VERY COORDINATED APPROACH TO SERVING THE
PEOPLE IN THEIR COMMUNITY AND HAVE SEEN SUCCESS IN GETTING APPROPRIATE SERVICES ALLOWING MEMBERS,
THE INDIVIDUALS, TO STAY AT HOME. IN CALIFORNIA, THEY HAVE THROUGH A GRANT WITH
THE ALZHEIMER’S LOS ANGELES AND THEIR PARTNERS THE NORTHERN CALIFORNIA ALZHEIMER’S ASSOCIATION,
THEY HAVE DEVELOPED ACTUALLY A LIVE ALONE ALGORITHM, AND THAT IS SPREADING ACROSS�
THE USE OF THAT IS SPREADING ACROSS THE STATE OF CALIFORNIA TO ASSESS THE UNMET DIAGNOSTIC
MEDICAL, FINANCIAL, LEGAL, DAILY LIVING, SAFETY AND QUALITY AND SUPPORT SYSTEM TECHNOLOGY
NEEDS OF INDIVIDUALS THAT ARE SEEKING THEIR SERVICES. THEY HAVE DONE AN AMAZING JOB OF DEVELOPING
A PROGRAM OF CIRCLE OF CARE TO DEVELOP FOR FRIENDS AND NEIGHBORS AND JUST ANYBODY. PEOPLE WANT TO HELP. AND THEY ARE DOING A GREAT JOB OF GETTING
PEOPLE INTEGRATED INTO THAT CIRCLE OF CARE TO PROVIDE ASSISTANCE AND THEY HAVE ALSO DEVELOPED
A RESOURCE GUIDE, ALONE BUT NOT FORGOTTEN, SUPPORTING THOSE WITH MEMORY LOSS, THAT ADDRESSES
PARTNERING WITH MEDICAL TEAMS, LEGAL AND FINANCIAL, AND ADDRESSING POTENTIAL SAFETY ISSUES. SO THAT’S JUST THREE OF THE 25 PROGRAMS WE
HAVE GOING. WE ARE ACTUALLY IN THE PROCESS OF REVIEWING
THE APPLICATIONS THAT WERE SUBMITTED A WEEK OR SO AGO, AND HOPE TO HAVE 13 MORE. NO, I’M SORRY, I’M GETTING HEAD. ELEVEN MORE PROGRAMS TO ADD TO WHAT WE HAVE
GOING ACROSS THE COUNTRY AND WE’RE VERY MUCH LOOKING FORWARD TO SEEING WHAT PEOPLE ARE
COMING UP WITH. THE GREAT THING ABOUT THIS PROGRAM IS THAT
PEOPLE� IT’S REALLY COMMUNITIES IDENTIFYING THEIR NEEDS AND DEVELOPING UNIQUE PROGRAMS
TO ADDRESS THE CONCERNS OF, YOU KNOW, WHETHER THEY ARE URBAN, RURAL, FRONTIER, THEY CAN�
THEY KNOW WHAT THEIR COMMUNITY NEEDS AND THEY ARE GETTING THE WORK DONE AND IT’S A PLEASURE
TO BE ABLE TO BE INVOLVED IN THAT. I DID WANT TO MENTION THAT THROUGH OUR RESOURCE
UNDER THE NATIONAL ALZHEIMER’S AND DEMENTIA CENTER WE HAVE RESOURCES FOR FOLKS ALIGN,
GUIDES AND STRATEGIES FOR FOLKS LIVING ALONE, AN ISSUE BRIEF ON LIVING ALONE AND RECENTLY
DID A� WELL, NOT RECENTLY, IN THE LAST YEAR DID A WEBINAR BUT THERE’S MANY RESOURCES WITHIN
THE NADRC RESOURCE CENTER WEBSITE THAT IT’S ACCESSIBLE TO ANYONE. WE HAVE TOOLS, FACTSHEETS, AND HOPEFULLY IT
WILL HELP ADDRESS THIS ISSUE.>>THANKS, ERIN. I’D LIKE TO THANK ALL THE SPEAKERS AND OPEN
IT UP FOR DISCUSSION, ANY OF THE TOPICS THAT WERE BROUGHT UP THIS MORNING. WE’LL HAVE TO CURTAIL THIS A BIT BECAUSE WE
HAVE OUR NEXT SESSION AND SOME FOLKS ON THE PHONE FOR THAT. BUT DONNA?>>THANK YOU. ERIN, IS IT POSSIBLE TO GET A COPY OF “ALONE
BUT NOT FORGOTTEN”?>>ABSOLUTELY. I WILL GET MY HANDS ON IT.>>IT SOUNDS LIKE AN EXCELLENT GUIDE.>>YEP.>>GARY?>>THANKS, RON. I WANT TO THANK ALL THE PRESENTERS FOR JUST
TREMENDOUS AND EXCITING WORKS, GROUPS AFFECTED BY THE INTERVENTIONS WE’VE HEARD ARE LUCKY
TO HAVE CONTACT THERE. I’D LIKE TO RETURN TO SHARI’S QUESTION OR
REQUEST ABOUT CLINICAL UTILITY OF COMPREHENSIVE TESTING, JUST EXPAND ON THAT A LITTLE BIT.
AND MY QUESTION ALSO RELATES TO RECOMMENDATION THAT A CLINICAL SUBCOMMITTEE SUGGESTED ASPE
CONTINUE WORK ON DEFINING BEST PRACTICES FOR COMPREHENSIVE DEMENTIA CARE, I’M ASK FOR TO
DR. JOHNSTON BUT WOULD WELCOME INPUT FROM ANYONE. WHEN WE THINK ABOUT HIGH VALUE CARE AND ATTENTION
TO COST, WHAT ELEMENTS ARE THE MOST IMPORTANT AND THAT CAN BE IMPLEMENTED IN A WIDESPREAD
WAY, FOR EXAMPLE MAKING A DIAGNOSIS, HOW DETAILED AND WHO SHOULD BE DOING THIS FOR IDENTIFYING
A FAMILY CAREGIVER OR REPRESENTATIVE, WHO SHOULD BE IDENTIFYING THIS PERSON, THE PROXY
RESPONDENT AND SHOULD THERE BE LEGAL ATTENTION TO POWER OF ATTORNEY FOR HEALTH AT THAT TIME? AND/OR ADVANCE CARE PLANNING? FOR CARE COORDINATION WHO SHOULD BE DOING
THIS OR SHOULD THIS BE IDENTIFYING WITH PCP OR SEPARATE ENTITY THAT WORKS WITH THE PCP?>>SO TO ANSWER THE FIRST QUESTION, THREE
QUESTIONS THERE. FIRST ONE, DIAGNOSE WHO SHOULD BE MAKING THE
DIAGNOSIS? SO TO DIAGNOSE THE CLINICAL SYNDROME OF DEMENTIA
REQUIRES A GOOD HISTORY, AND ELIMINATION OF OTHER CAUSES, AS YOU KNOW. THAT FALLS IN THE PRIMARY CARE DOCTORS’ DOMAIN,
I THINK. I THINK THE TIME TAKEN TO DO IT IS WHAT HELPS
PEOPLE. WE HAVE TECHNOLOGIES WHERE YOU HAVE SIT AND
HAVE CAREGIVERS ENTER INFORMATION THAT WILL HELP A LOT WITH PUTTING THE HISTORY TOGETHER. AND KNOWING THE FAMILY HISTORY, YOU CAN NARROW
IT DOWN BASICALLY TO PEOPLE THAT YOU NEED TO TAKE A CLOSE LOOK AT AND WORK UP FURTHER
FOR DEMENTIA. I THINK WE HAVE TO DEVELOP A GOOD WAY TO DO
THAT. BUT THAT SHOULDN’T BE TOO HARD TO DO REALLY. I MEAN, IT’S SOMETHING WORTH FOCUSING ON BECAUSE
OF POTENTIAL BENEFITS, AND THERE’S NOT A SIMPLE WAY TO DO IT. ONE OF THE REASONS IT’S NOT DIAGNOSED. AND THE OTHER QUESTION WAS ABOUT CAREGIVERS,
WHO SHOULD BE THE CAREGIVER, AND SO YOU WERE SAYING IT’S OFTEN DE FACTO, WHOEVER IS AVAILABLE. I THINK THAT’S REALLY AN IMPORTANT POINT. WHO IS GOING TO HELP THIS PERSON? A LOT OF TIMES PERHAPS PEOPLE DON’T COME FORWARD
WITH CONCERNS ABOUT THEIR OWN MEMORY PROBLEMS BECAUSE THEY ARE AFRAID IT’S GOING TO PUT
A BURDEN ON FAMILY MEMBERS. SOMETHING THAT HAS TO BE DRESSED WITH PUBLIC
EDUCATION AND IN ADDITION TO PROVIDER EDUCATION TO HELP PATIENTS, YOU KNOW, MAKE IT OKAY TO
BRING UP THESE ISSUES. BUT I THINK WE HAVE TO LOOK ACTIVELY TO FIND
OUT WHO SHOULD BE THE CAREGIVER, IS THIS CAREGIVER COMFORTABLE BEING THE CAREGIVER? IN MY CLINICAL EXPERIENCE, PROBABLY YOURS,
USUALLY THE PERSON WHO COMES WITH THE PERSON WITH MEMORY DISORDERS, IT IS IMPLIED THAT
PERSON WANTS TO HELP. OCCASIONALLY YOU SEE PEOPLE CAN CONFLICTED
RELATIONSHIPS OR THE PERSON THAT COMES IN FLIPPING A MAGAZINE, I CALL IT THE MAGAZINE
SIGN. YOU KNOW, YOU HAVE TO FIND OUT IF THAT PERSON
IS INTERESTED. THE THIRD QUESTION IS WHO SHOULD PROVIDE THE
SERVICES THAT ARE NOT MEDICAL THAT ARE PROBABLY REALLY THE MOST IMPORTANT ELEMENT OF� I
THINK OF IT AS NOT LETTING�PREVENTING A NONMEDICAL PROBLEM FROM BECOMING A MEDICAL
PROBLEM. BY THE TIME YOU AND I SEE THEM THEY ARE MEDICAL
PROBLEMS BUT MIGHT HAVE STARTED AS LACK OF RESOURCES OR INABILITY TO GET MEDICATION PROPERLY. YOU DON’T NEED MEDICAL PEOPLE OR NURSES EVEN
TO TAKE CARE OF THEM. IN OUR EXPERIENCE WITH MIND AT HOME, WE DELIBERATELY
CHOSE NONCLINICAL PEOPLE WITH BACHELOR LEVEL EDUCATION, WE’VE TRAINED THEM TO RECOGNIZE,
TO ASSESS PEOPLE’S NEEDS WITH THE BACKUP OF CLINICIANS. AND THESE PEOPLE FORM� COORDINATORS FORM
RELATIONSHIPS WITH CAREGIVERS AND THEY PROVIDE SUPPORT AND PROBLEM SOLVING. WE’RE AT THE END OF THE PHONE, AVAILABLE. THEY CAN CALL US ANYTIME ABOUT ANYTHING THEY
THINK IS REMOTELY CLINICAL AND WE CONTRACT PRIMARY CARE DOCTORS TO WALK THEM THROUGH
THE PROBLEM. YOU CAN SET UP A SYSTEM WHERE YOU HAVE A NONCLINICAL
PERSON WHO IS AFFORDABLE GOING INTO THE HOME, TRAINED TO DO� TO ADDRESS� RECOGNIZE AND
ADDRESS PROBLEMS AND HELP CAREGIVERS. AND YOU DON’T HAVE TO HAVE A HUGE HEALTH CARE
WORKFORCE TO DO THAT BUT YOU HAVE TO HAVE A DIFFERENT TYPE OF WORKFORCE AND MAYBE NEW
CATEGORY OF WORKER.>>THANK YOU. I ECHO GARY’S COMMENTS THANKING EVERYONE. IT’S A THRILL TO HEAR THE DIFFERENT KINDS
OF INNOVATIVE PROGRAMMING GOING ON TO SUPPORT CAREGIVERS. SUZANNE, I WANTED TO MAKE A COMMENT, BECAUSE
YOU COMMENTED IN THE SELF DIRECTED PROGRAMS THAT THE ROLE OF THE REPRESENTATIVE OR THE
FAMILY CAREGIVER IS REALLY NOT TO TALK ABOUT WHAT THEY ARE INTERESTED IN THE KINDS OF SUPPORTS
BUT TO REPRESENT THE INDIVIDUAL WHO IS THE CARE RECIPIENT. I THINK THAT’S A STRONG TENSION IN ALL OF
THE WORK THAT WE DO WITH ALZHEIMER’S OR DEMENTIA. TO MAKE SURE THAT IN MANY CASES IT MAY BE
THIS INDIVIDUAL WITH DEMENTIA OR ALZHEIMER’S HAS A VERY DIFFERENT INTEREST AND NEEDS THAN
WHAT THE CAREGIVER HAS, SORE INTERESTED IN. AND I’M NOT SURE I HAVE A QUESTION. I JUST WANTED TO POINT THAT OUT THAT I THINK
IT’S STILL A TENSION IN OUR SERVICE DELIVERY SYSTEM ABOUT REALLY FOCUSING IN ON THE NEEDS
OF THE CARE RECIPIENT AND CAREGIVER IS THERE TO SUPPORT THE NEEDS BUT IN FACT THE CAREGIVER
HAS THEIR OWN NEEDS AND THEIR OWN INTEREST IN SUPPORTING THAT INDIVIDUAL IN WAYS THAT
WE CAN THROUGH POLICY AND DIFFERENT KINDS OF PROGRAMMING SUPPORT THEM AS A DYAD AND
NOT AS THE CARE RECIPIENT AND CAREGIVER. JUST AN OBSERVATION.>>IT GOES BACK TO THE MATERNALISTIC VIEW
THAT WE’VE TAKEN FOR HELPING PEOPLE THAT THE CAREGIVER KNOWS BEST WHAT THAT PERSON SHOULD
HAVE. AND IT’S AT THE CONVENIENCE OF THE CAREGIVER. WHAT WE TRY TO DO IS WE HAVE A DISCUSSION
WITH THE POTENTIAL REPRESENTATIVE, THEY HAVE A LIST OF RIGHTS AND RESPONSIBILITIES. WE DO TRY TO HONE IN ON THIS IS THE PERCEPTION
OF WHAT THE INDIVIDUAL WOULD HAVE PREFERRED HAD HE OR SHE BEEN ABLE TO EXPRESS THAT. WITH DEMENTIA OF COURSE WE KNOW PREFERENCES
CHANGE PERIODICALLY. AND THAT’S ONE THING WITH SELF DIRECTION,
THE FLEXIBILITY OF THAT. BUT WE REALLY DO TRY TO TEACH THE REPRESENTATIVE
WHAT THE PROPER ROLE IS THERE. SO, YOU KNOW, WHETHER THAT HAPPENS OR NOT,
OFTENTIMES CASE MANAGERS OR SUPPORT COORDINATORS CAN MAKE SURE THE REPRESENTATIVE UNDERSTANDS
THAT IT’S THE PERSON THAT IS THE CENTER OF THE PLANNING PROCESS AND NOT THE CAREGIVER. THANK YOU.>>ANGELA?>>MY QUESTION IS FOR DR. JACK. I’M CURIOUS HOW THE PREVALENCE OF MIXED DEMENTIA
PLAYS INTO THE DEFINITIONS THAT YOU’RE LOOKING TO, FOR BIOMARKERDRIVEN ALZHEIMER’S DISEASE
DIAGNOSES, AND THEN ALSO THE IMPLICATION THAT HAS FOR ENROLLMENT INTO CLINICAL TRIALS, AS
WE GET BETTER INTO DIAGNOSING� BIOMARKERDRIVEN DIAGNOSIS BECOMES MORE PREVALENT, WHAT’S THE
RIPPLE EFFECT EXPECTED TO BE AS WE GET INTO NOT JUST ALZHEIMER’S DISEASE BUT OTHER DISORDER
CLINICAL TRIALS?>>THIS IS AN IMPORTANT QUESTION. I MEAN, THE FACT IS THAT IN ALZHEIMER’S DISEASE
WHERE I WILL SAY BLESSED IN SOME SENSE, AND THAT IS THAT BIOMARKERS EXIST. THEY MAY BE EXPENSIVE AND INVASIVE BUT THEY
DO EXIST FOR THE TWO TWO PROTEINOPATHIES. WHAT IS A GAP FOR BIOMARKERS FOR OTHER CONDITIONS
THAT CONTRIBUTE TO DEMENTIA. CERTAINLY PEOPLE ARE WORKING VERY HARD ON
THIS BUT WHAT’S NEEDED IS A BIOMARKER FOR ALPHASYNUCLEIN FOR LEWY BODY, FOR TDP43, BIOMARKER
FOR THE KIND OF SMALL MICROINFARCTION, CEREBROVASCULAR, WE CAN’T SEE MICROSCOPIC STROKES, CLASSIC
BIOMARKERS ARE NEEDED THAT DON’T EXIST AND OBVIOUSLY THAT’S AN AREA WHERE ACTIVE RESEARCH
IS GOING ON. GETTING BACK TO WHAT YOU MENTIONED, WHAT DR. HODES MENTIONED BEFORE, IDEA OF FOCUSING ON
CHARACTERIZING PEOPLE AND IDENTIFYING PEOPLE WITH ALZHEIMER’S DISEASE AS ETIOLOGY MOVES
THE PEOPLE TOWARD THE FIELD OF PERSONALIZED MEDICAL CARE. SO IMAGINE SOMEONE WITH� IMAGINE SOMEONE
WITH HEART FAILURE. A LOT OF PEOPLE WITH HEART FAILURE HAVE DIABETES,
HYPERTENSION, SOME MIGHT HAVE HYPERTENSION AND HYPERLIPIDEMIA. YOU DON’T WANT TO GIVE SOMEONE WHO DOESN’T
HAVE DIABETES INSULIN, THERE’S NO NEED TO GIVE SOMEONE HOW THE HYPERLIPIDEMIA LIPIDLOWERING
DRUGS, ET CETERA. BUT BY FOCUSING DIAGNOSTIC EFFORTS ON DEVELOPING
TESTS THAT CAN DETECT IN A LIVING PERSON THE SPECIFIC ETIOLOGIES THAT CONTRIBUTE TO DEMENTIA,
THAT’S THE WAY FORWARD. AND I WOULD SAY ALZHEIMER’S DISEASE IS THE
FIRST STEP IN THAT DIRECTION BECAUSE BIOMARKERS DO EXIST, BUT AS YOU POINT OUT DEMENTIA IS
MOST OFTEN MULTIFACTORIAL. THE AGE OF AN INDIVIDUAL INCREASES, THE PROBABILITY
OR LIKELIHOOD THE PERSON IS MULTIFACTORIAL GO UP. DEVELOPING A DIAGNOSTIC PLATFORM FOR ALZHEIMER’S
DISEASE IS A FIRST STEP BUT BEGS THE NEXT STEPS, SPECIFIC BIOMARKERS FOR THESE OTHER
THINGS.>>A QUICK ONE.>>OKAY. MINE IS A TWOPART QUESTION, I GUESS, OR ASKING
FOR SOME COMMENTS. THE FIRST IS WITH THE BIOMARKERS, AS I’M UNDERSTANDING
IT, NOT A CLINICIAN, BUT UNDERSTANDING THERE’S A DISPARATE EFFECT OR IMPACT OF ALZHEIMER’S
DISEASE ON WOMEN VERSUS MEN, CURRENTLY, AND I’M ASSUMING THAT, TAKING THAT TO THE WAY
THAT’S BEING CURRENTLY DIAGNOSED, SO MY FIRST PART IS IF WE WERE TO MOVE THE BIOMARKERS
AS A FOCUS FOR THE DIAGNOSIS, AND OTHER RESEARCH THAT I UNDERSTAND IS HAPPENING SAYING THE
ACTIVE MECHANISM MAY BE DIFFERENT IN WOMEN THAN MEN IN ALZHEIMER’S, I WOULD JUST BE INTERESTED
IN HOW YOU SEE THE NUMBERS CHANGING IN TERMS OF TOTAL NUMBERS OF INDIVIDUALS THAT MIGHT
HAVE ALZHEIMER’S, BASED UPON THE BIOMARKERS, THAT’S THE FIRST PART. AND THE SECOND PART IS REALLY UNDERSCORING
THE IMPORTANCE OF THE COMMUNICATION OF THIS TO THE PUBLIC, AND WHERE IT DIFFERS FROM HEART
DISEASE AND DIABETES IS SO MUCH HAS HAPPENED AND DEVELOPED IN THOSE DISEASES THAT WHEN
YOU SAID YOU HAVE HEART DISEASE OR YOU HAVE DIABETES, PEOPLE SAY, WELL, I KNOW I CAN MANAGE
THIS. I KNOW THAT THERE’S A LOT OUT THERE TO MANAGE
IT. IF WE WERE TO MOVE TO A DIFFERENT KIND OF
DIAGNOSIS AND PEOPLE EARLY ON WHERE BECAUSE OF BIOMARKERS WERE IDENTIFIED AS HAVING SYMPTOMS
OF ALZHEIMER’S, THIS IS A DISEASE THAT IS SO FEARFUL IN FACT MORE PEOPLE ARE AFRAID
OF THE DIAGNOSIS OF ALZHEIMER’S NOW THAN MANY CANCERS, HOW DO WE MANAGE THAT WHEN WE DON’T
YET HAVE THE METHOD, CORRESPONDING METHOD THAT SAYS YOU CAN LIVE WELL WITH ALZHEIMER’S,
AND WE CAN HELP YOU DO THAT, AND YOUR FAMILY. BECAUSE THE DIAGNOSIS LIKE THIS GIVEN THE
CURRENT FEAR OF THIS COULD IN FACT FULLY AFFECT DYNAMICS OF A FAMILY, DYNAMICS OF A PERSON’S
NETWORK. SO I’M INTERESTED IN BOTH OF THOSE.>>YEAH, I MEAN, YOU’RE QUITE CORRECT MENTIONING
THERE’S A SLIGHT HIGHER INCIDENCE OF ALZHEIMER’S IN WOMEN COMPARED TO MEN.
AND THAT PROBABLY IS ALSO RELATED TO LONGEVITY IN WOMEN COMPARED TO MEN, ALTHOUGH THERE MIGHT
BE ALSO OTHER INHERITED FACTORS SUCH AS ESTROGEN AND SO ON. I MEAN, AT LEAST FOR THE PROJECTIONS WE’VE
SEEN, THE GROWTH APPEARS TO BE SOMEWHAT SIMILAR IN MEN AND WOMEN, ALTHOUGH AGAIN THERE MIGHT
BE A SLIGHT INCREASE IN THE NUMBERS. NOW, IN REGARD TO YOUR SECOND QUESTION, AS
TO HOW TO COMMUNICATE, REALLY IT’S A VERY TOUGH QUESTION. I MEAN, ONE OF THE THINGS WE HAVE LEARNED
ESPECIALLY� I MEAN THERE ARE, FOR EXAMPLE, INHERITED FORMS OF ALZHEIMER’S DISEASE WHERE
WE KNOW WITH A HIGH LEVEL OF CERTAINTY BECAUSE OF GENETIC COMPONENT THE PERSON WILL DEVELOP
THE DISEASE, AND THESE FAMILIES THEY DON’T WANT TO KNOW IF THEY HAVE THE GENE OR NOT. BUT WHEN YOU COMMUNICATE THAT THAT WILL HAVE
AN IMPORTANT CONSEQUENCE TO THEIR CHILDREN AND HOW THAT’S GOING TO HAPPEN TO THE FAMILY,
THERE’S A CHANGE OF MENTALITY. IF WE COMMUNICATE THIS IS IMPORTANT FOR YOUR
FAMILY, THIS IS IMPORTANT FOR THE COMMUNITY, AND THE IMPACT THAT IS GOING TO HAVE, PEOPLE’S
MENTALITY CHANGES, ALWAYS THERE’S A FEAR BUT I THINK WE CAN CHANGE THAT.>>TO ADD ONE COMMENT ALSO IF PEOPLE ARE IDENTIFIED
EARLIER IN LIFE WHEN THEY ARE CLINICAL NORMAL HAVING PERHAPS BIOLOGIC TENDENCY THAT MAY
MOTIVATE LIFESTYLE CHANGES AND SOME LIFESTYLE BEHAVIORS THAT COULD IN FACT IMPACT AND THIS
IS A SEGUE INTO THE NEXT SESSION, THAT MAY HAVE AN IMPACT ON MAYBE WE’RE NOT SO MUCH
WHETHER YOU’RE GOING TO GET IT OR NOT BUT WHEN YOU GET IT AND HOW YOU GET IT, JUST LIKE
WITH HEART DISEASE, PEOPLE FIND THEY HAVE TENDENCY TO HYPERLIPIDEMIA, PREDISPOSITION
TO HEART DISEASE BUT THEY ARE CLINICALLY FINE, EXERCISE, DIET ET CETERA, MAY POSTPONE THE
ONSET. IT’S A BIG EFFORT TO EDUCATE PEOPLE THAT THEY
CAN DO SOMETHING ABOUT THEIR BRAIN LIKE THEY CAN ABOUT THEIR HEART WITH LIFESTYLE BUT THAT
WOULD BE ONE MANIFESTATION.>>I THINK IT’S VERY IMPORTANT TO NOTE SCIENCE
DOESN’T HAVE US TO THAT POINT YET. NOW, THE� I THINK THAT’S CRITICAL BECAUSE
THIS IS A HUGE ISSUE THAT YOU’RE RAISING. I MEAN, IF YOU GO BACK EARLIER, CERTAINLY
CANCER MORE THAN HEART DISEASE BUT CARDIOVASCULAR DISEASE AS WELL, ALL KINDS OF ISSUES WITH
THE KNOWING, STIGMA ABOUT THE DISCUSSIONS, SO WE HAVE MANY ISSUES TO DEAL WITH HERE THAT
ARE GOING TO BE BEFORE US. YOU CAN SEE THE PATH. OUR SPECIAL REPORT IN FACTS AND FIGURES AIMED
AT PROGRESSION OF SCIENCE, NOT POINT WE NEED TO GO TO CONSUMER DISCUSSION BUT LET’S FACE
IT, EDUCATED CONSUMERS ARE GOING TO KNOW THE KINDS OF THINGS AVAILABLE IN THE SCIENTIFIC
COMMUNITY. SO THESE THINGS ARE BEFORE US. WE’RE NOT YET TO THE POINT SCIENCE HAS TAKEN
US A ALL THE WAY THERE. WE’LL ENVIRONMENTAL TO DO WORK COLLECTIVELY
TO HAVE CONVERSATIONS WITH THE PUBLIC WHICH WILL GET INTO THE NEXT TOPIC, BEYOND THAT
INTO WHAT DOES LOOK MORE LIKE THE CARDIOVASCULAR APPROACH TO THINGS WHICH DOES HAVE FURTHER
RAMIFICATION AS YOU RIGHTLY SUGGEST GIVEN HISTORIC STIGMA OF DEMENTIA ELEMENT THAT IS
NOT AND HAS NOT BEEN PRESENT IN OTHER DISEASES. SO LOTS OF WORK TO DO. I CAN GUARANTEE YOU WE’RE ALREADY STARTING
TO WORK ON THESE THINGS, EVEN IN TERMS OF CONSUMER SURVEYING, AND THAT SORT OF THING. IN ADDITION TO THE SCIENCE OF COURSE THERE
ARE MULTIPLE ASPECTS OF THIS THAT WILL ULTIMATELY ENGAGE PUBLIC HEALTH IN NEW WAYS, IN THIS
SPACE, THAT HAVEN’T REALLY BEEN DEPLOYED PREVIOUSLY BECAUSE WE HAVEN’T BEEN AT STEPS OR STAGES
TO TAKE THOSE STEPS.>>ROHINI?>>ONE FINAL POINT SINCE WE’RE RUNNING LATE. THE IDEA OF THE PANELS WAS TO BRING UP AREAS
THE COUNCIL CAN FOCUS ON. WE’VE FOUND A LOT OF THEMES THAT GO THROUGHOUT
THE AREA. I ALWAYS LIKE TO STRESS IT’S NOT A CLEAR TRICHOTOMY
THERE’S OVERLAP, I WOULD ENCOURAGE MEMBERS AS YOU’RE THINKING ABOUT YOUR RECOMMENDATIONS
IN THE FUTURE AS WELT TO CONSIDER THAT AND HOW YOUR RECOMMENDATIONS AFFECT THE OTHER
TWO GROUPS. I THINK WE HAVE A GREAT NUMBER OF PLACES TO
GO FROM HERE.>>I’D LIKE TO THANK OUR SPEAKERS, PANEL MEMBERS
THIS MORNING, AS OUR WEATHER ALERT GOES OFF, AND I THINK AS ROHINI SAID THE PRIMARY PURPOSE
WAS TO OPEN AN UMBRELLA, WAS TO REALLY FOCUS THE ADVISORY COULDN’T ON WHERE WE NEED TO
GO, THE GAPS, NOTIONS. HOPEFULLY I WANT TO THANK EVERYBODY FOR HIGHLIGHTING
THESE ISSUES AND WE’LL TAKE THEM INTO ACCOUNT GOING FORWARD. ALL RIGHT. THANKS. LET’S TRANSITION THEN, STORY, IF YOU WANT
TO COME UP. THE NEXT ITEM ON THE AGENDA IS THE NATIONAL
ACADEMY OF SCIENCE, ENGINEERING AND MEDICINE REPORT ON PREVENTING COGNITIVE DECLINE IN
DEMENTIA, A WAY FORWARD. THIS IN PARTICULAR HAS TO DO WITH ARE THERE
ANY INTERVENTIONS THAT MIGHT BE SUCCESSFUL, MIGHT BE USEFUL IN PREVENTING COGNITIVE IMPAIRMENT,
MILD COGNITIVE IMPAIRMENT OR DEMENTIA. ON THE PHONE I THINK WE HAVE MARY BUTLER AND
HOWARD FINK, MARY AND HOWARD, ARE YOU THERE?>>I’M ON THE PHONE.>>YES, I AM AS WELL.>>VERY GOOD. THANK YOU.>>MARY AND HOWARD, LET ME KNOW WHEN YOU WANT
ME TO MOVE FORWARD WITH THE SLIDES.>>OKAY. TO LET YOU KNOW IT’S ALMOST 15SECOND DELAY
BETWEEN WHAT’S VISUAL ON THE SCREEN SO IF WE KIND OF STUTTERSTEP HERE AND THERE IT’S
JUST THE TIME LAG. SO ARE THE SLIDES UP AND AVAILABLE?>>YES, THEY ARE.>>OKAY. AND I’M NOT SEEING THEM. THERE WE GO. OKAY, GREAT. SO WE’RE JUST GOING TO GO VERY BRIEFLY THROUGH
SYSTEMATIC REVIEW THAT WAS COMMISSIONED TO SUPPORT THE WORK THAT THE NATIONAL ACADEMY’S
WORK GROUP WAS CHARGED WITH. AND THERE WAS A VERY LARGE GROUP OF FOLKS
THAT WERE INVOLVED INNED THIS, HOWARD AND I ARE JUST MERELY THEIR VOICES FOR YOU TODAY. ROHINI, PLEASE ADVANCE. QUICK DISCLOSURES, THAT WE HAVE NO CONFLICTS
OF INTEREST ON� FROM ANYONE ON THE TEAM AND PLEASE NOTE THERE WERE� NONE OF THE
INTERVENTION WERE FDA APPROVED FOR PREVENTING OR SLOWING COGNITIVE DECLINE IN PATIENTS. OUR OBJECTIVE FOR THIS WAS TO REVIEW EVIDENCE
FOR EFFICACY AND HARMS FOR ANY INTERVENTIONS TO PREVENT OR DELAY COGNITIVE DECLINE, MCI
OR DEMENTIA, USING A BROAD BRUSH TO LOOK ACROSS INTERVENTIONS. YOU CAN SEE THE LIST HERE FOR NONPHARMACOLOGICAL
TREATMENTS EVALUATED. WE WERE OPEN TO MORE. THIS IS WHAT WE WERE ABLE TO FIND. WE DID ALSO NOTE THAT WE WERE YOU AN ABLE
TO FIND ANY EVIDENCE FOR DEPRESSION TREATMENT, SMOKING CESSATION OR INTERVENTIONS THAT WERE
AT THE COMMUNITY LEVEL THAT MET THE INCLUSION CRITERIA THAT WERE EMPLOYED WHICH WERE QUITE
RIGOROUS FOR THE REPORT, WE WERE REALLY INTERESTED IN BEING ABLE TO EVALUATE SPECIFICALLY TESTS
OF INTERVENTIONS, NOT RISK FACTORS. NEXT SLIDE PLEASE. AGAIN, FOR THE PHARMACOLOGICAL TREATMENTS
THAT WERE EVALUATED, THERE WAS A WIDE RANGE OF STUDIES THAT WERE EXAMINED AND INTERVENTIONS
THAT WERE EXAMINED. WE’RE NOT GOING TO GIVE DEEP, JUST A BRIEF
OVERLOOK OF FINDINGS. NOTE WE ONLY ASKED OUTCOMES FOR STUDIES THAT
MET A LOW OTHER MODERATE RISK OF BIAS. IF THERE WAS HIGH RISK OF BIAS WE DID NOT
EVALUATE OUTCOMES. NEXT SLIDE PLEASE. SO FOR TREATMENTS THAT WERE EXAMINING COGNITIVE
TRAINING, WE REALLY WERE UNABLE TO FIND ANY INFORMATION TO SUPPORT ANYTHING FOR INDIVIDUALS
WITH MCI, IN STUDIES THAT ENROLLED PATIENTS OR RATHER ADULTS WITH PRESUMABLY NORMAL COGNITION
THERE WAS SOME MODERATE EVIDENCE THAT COGNITIVE PERFORMANCE IMPROVED IN THE AREAS THAT THE
PARTICIPANTS WERE TRAINED IN, SO IMPROVEMENTS IN THE DOMAIN THAT WAS TRAINED BUT THERE WASN’T
NECESSARILY EVIDENCE AVAILABLE TO US THAT SHOWED THAT THAT TRAINING TRANSFERRED TO OTHER
DOMAINS. THERE WAS MODERATE STRENGTH OF EVIDENCE AT
2 YEARS BUT DROP TO LOW STRENGTH OF EVIDENCE AT 5 TO 10 YEARS AND WE DID NOTE THERE WAS
SOME PROCESSING SPEED TRAINING MAY HAVE BEEN ASSOCIATED WITH LOWER DECLINES IN IADLs BUT
THERE WASN’T ANY EVIDENCE TO SHOW ANY COMMERCIAL BRAIN TRAINING PROGRAMS WERE EFFECTIVE, VAST
NUMBER OF STUDIES NOT INCLUDED BECAUSE THEY ARE FAR TOO SHORT A PERIOD TO SPEAK TO COGNITIVE
DECLINE OR DEMENTIA. PHYSICAL ACTIVITY WAS ANOTHER AREA, NO INFORMATION
FOR INDIVIDUALS WITH MCI AND THERE WAS SUGGESTION OF PATTERNS ACROSS DIFFERENT FORMS OF PHYSICAL
ACTIVITY THAT THERE MAY BE IMPROVEMENTS IN COGNITIVE PERFORMANCE. WE SAW THAT IN PARTICULAR FOR RESISTANCE TRAINING
AND AEROBIC TRAINING. THERE REALLY ISN’T AN ABILITY TO GRADE THESE
OUTCOMES USING NORMAL GRADE TIMES OF TECHNIQUES SO THE BEST WE CAN SAY IS THERE APPEARED TO
BE A SIGNAL. NEXT SLIDE PLEASE. FOR MULTIMODAL INTERVENTIONS, PEOPLE ARE PROBABLY
FAMILIAR WITH THE FINGER AND DIVA STUDY, NO EVIDENCE AVAILABLE FOR FOLKS WITH MCI, FOR
PEOPLE WITH NORMAL COGNITION. IT APPEARED THAT LIFESTYLEBASED BEHAVIORAL
INTERVENTIONS DID SHOW SOME IMPROVEMENT IN COGNITIVE PERFORMANCE BUT LIFESTYLE ADVICE
PLUS DRUG MANAGEMENT, WHICH IS LESS ACTUAL BEHAVIORAL CHANGE APPROACH SHOWED NO DIFFERENCE. NEXT SLIDE PLEASE. FOR DIET, THERE WAS NO EVIDENCE FOR MCI, AND
NO DIFFERENCES FOR FOLKS WITH NORMAL COGNITION. AND AGAIN THAT WAS ONLY� THAT WAS ESSENTIALLY
INSUFFICIENT STRENGTH MUCH EVIDENCE, MEDITERRANEAN DIETS WERE RATED HIGH RISK OF BIAS AND NOT
EVALUATED FURTHER. NEXT SLIDE PLEASE. NEUTRICEUTICALS FOR INDIVIDUALS WITH MCI,
ESSENTIALLY INSUFFICIENT EVIDENCE FOR ANY TYPE OF TREATMENT FOR FOLKS WITH NORMAL COGNITION,
THE EVIDENCE EITHER SHOWED NO DIFFERENCE FOR OMEGA 3s OR GINKO BILOBO VERSUS PLACEBO, LOW
STRENGTH OF EVIDENCE. INSUFFICIENT EVIDENCE FOR OTHER TYPES OF TREATMENT
SUCH AS RESVERATROL AND SO ON. NEXT WE HAVE VITAMINS, INDIVIDUALS WITH MCI,
NO DIFFERENCE BETWEEN GROUPS FOR VITAMIN E. AND FOR INDIVIDUALS WITH NORMAL COGNITION,
AGAIN, IT WAS ALL ESSENTIALLY A MESSAGE OF NO DIFFERENCE WITH MAYBE A SLIGHT SIGNAL FOR
B2 PLUS FOLIC ACID, FOR FOLKS WITH NORMAL COGNITION. NOW I’LL HAND IT OVER TO HOWARD TO TAKE US
THROUGH THE PHARMACEUTICALS.>>THANK YOU. OKAY. SO NEXT SLIDE WITH DEMENTIA MEDICATIONS, WE
CONSIDERED CHOLINESTERASE INHIBITORS AND OTHERS, LOOKING AT EVIDENCE FOR PREVENTION, AND DELAY
IN PATIENTS WITHOUT DEMENTIA, INDIVIDUALS WITH MCI ONE TRIAL WAS NOT A HIGH RISK OF
BIAS TRIAL SHOWING CHOLINESTERASE DID NOT REDUCE RISK OF DEMENTIA PLUS PLACEBO AT 3
YEARS, WITH NORMAL COGNITION WE FOUND NO EVIDENCE, NO STUDIES THAT REPORTED DATA ON COGNITIVE
OUTCOMES. NEXT SLIDE FOR ANTIHYPERTENSIVE MEDICATIONS,
WITHIN INDIVIDUALS WITH MCI, THERE WAS INSUFFICIENT EVIDENCE ABOUT WHETHER ANTIHYPERTENSIVE TREATMENT
WAS BETTER THAN PLACEBO FOR PREVENTION OF DEMENTIA OR COGNITIVE PERFORMANCE TESTS. IN INDIVIDUALS WITH NORMAL COGNITION, WE FOUND
THAT ANTIHYPERTENSIVE REDUCED RISK OF DEMENTIA IN ONE OUT OF FOUR. WE FOUND FOR COGNITIVE TEST PERFORMANCE OR
COMPOSITE OUTCOME OF INCIDENT COGNITIVE IMPAIRMENT THERE WAS NO DIFFERENCE BETWEEN ANTIHYPERTENSIVE
TREATMENT AND PLACEBO. AND WE FOUND NO DIFFERENCE BETWEEN INTENSIVE
VERSUS STANDARD ANTIHYPERTENSIVE TREATMENTS, AS WELL. THERE WERE A FEW COGNITIVE TESTS FOR WHICH
ANTIHYPERTENSIVE TREATMENT LOOKED BETTER THAN PLACEBO BUT FOR LARGE MAJORITY OF TESTS THERE
WAS NO DIFFERENCE. LOOKING AT THE DIFFERENT CATEGORIES OF COGNITIVE
TESTS, STRENGTH OF EVIDENCE FOR THESE RESULTS RANGED FROM LOW TO MODERATE. NEXT SLIDE. FOR DIABETES MEDICATIONS, WE FOUND WITHIN
INDIVIDUALS WITH MCI INSUFFICIENT EVIDENCE FOR WHETHER DIABETES MEDICATION TREATMENT
IMPROVED COGNITIVE TESTS, COMPARED TO PLACEBO. AND THEN WITHIN INDIVIDUALS WITH NORMAL COGNITION,
WHO EITHER WERE DIABETIC OR AT RISK FOR DIABETES, WE FOUND NO DIFFERENCE BETWEEN INTENSIVE GLYCEMIC
CONTROL AND STANDARD CONTROL FOR THE OUTCOMES WITH INCIDENT COGNITIVE IMPAIRMENT OR FOR
COGNITIVE TEST PERFORMANCE, NONE OF THESE STUDIES REPORTED ON DEMENTIA OUTCOME. LIPID LOWERING MEDICATIONS WE FOUND NO EVIDENCE
FOR THEIR EFFECT IN INDIVIDUALS WITH MILD COGNITIVE IMPAIRMENT. WITHIN INDIVIDUALS WITH NORMAL COGNITION,
WE FOUND INSUFFICIENT EVIDENCE FROM ONE STUDY ABOUT THEIR EFFECT ON RISK OF RISK OF DEMENTIA,
AND THEN LOW STRENGTH OF EVIDENCE THAT THEY WERE NO DIFFERENT FROM PLACEBO FOR COGNITIVE
TEST OVERALL, THERE WAS SOME HETEROGENEITY WITHIN THAT THESE COGNITIVE TESTS WITH A COUPLE
STUDIES SUGGESTING POSSIBILITY THAT STATINS WERE WORSE FOR SOME TESTS AT SIX MONTHS, A
COUPLE STUDIES SHOWING NO DIFFERENCE. FOR NONSTEROIDAL ANTIINFLAMMATORY DRUGS AND
ASPIRIN WE FOUND NO EVIDENCE ABOUT THEIR EFFECTIVENESS VERSUS PLACEBO IN INDIVIDUALS WITH MILD COGNITIVE
IMPAIRMENT AND WITHIN INDIVIDUALS WITH NORMAL COGNITION, ONE TRIAL COMPARED TWO NONSTEROIDALS
VERSUS PLACEBO AND FOUND NO DIFFERENCE IN RISK OF DEMENTIA. BOTH ASPIRIN AND NONSTEROIDALS WERE COMPARED
TO PLACEBO FOR COGNITIVE TEST PERFORMANCE, AND THEY� WE FOUND NO DIFFERENCE, LOW STRENGTH
FOR THESE FINDINGS. FOR HORMONES WITHIN INDIVIDUALS WITH MILD
COGNITIVE IMPAIRMENT WE FOUND INSUFFICIENT EVIDENCE ABOUT THEIR EFFECT ON COGNITIVE TESTS,
AND THEN INDIVIDUALS WITH NORMAL COGNITION WE FOUND LOW STRENGTH EVIDENCE ESTROGEN ALONE
AND PLUS PROGESTIN INCREASED RISK OF MILD COGNITIVE IMPAIR. RALOXIFENE REDUCED COGNITIVE IMPAIRMENT BUT
NOT DEMENTIA, IN HIGH DOSE BUT NOT LOW DOSE, SO POTENTIALLY AN ISOLATED FINDING THAT WASN’T
SUPPORTED BY RESULTS FOR DIFFERENT DOSE OR OUTCOME. WE FOUND THAT NO HORMONE TREATMENTS, THE ESTROGEN
PLUS PROGESTIN, IMPROVED COGNITIVE TEST, ONE SMALL TRIAL TESTOSTERONE SHOWED NO IMPROVEMENT,
SIGNIFICANT SIDE EFFECTS FROM INVASIVE BREAST CANCER, DEEP VENOUS THROMBOSIS. SO IN SUMMARY, COGNITIVE TRAINING IMPROVED
COGNITIVE TESTS WITHIN DOMAIN TRAINED BUT NOT OTHER DOMAINS AND FOUND NO EVIDENCE ABOUT
EFFECTIVENESS OF COMMERCIAL BRAIN TRAINING PROGRAMS. WE FOUND A SIGNAL THAT AEROBIC AND RESISTANCE
EXERCISE MIGHT HAVE SOME BENEFITS, MORE OF THE RESULTS SHOWED NO DIFFERENCE THAN BENEFITS
BUT THERE WAS A SUGGESTION AT LEAST THAT THERE MIGHT BE SOME BENEFIT FROM PHYSICAL ACTIVITY. MULTIMODAL, MIXED RESULTS WITH BEHAVIORAL
INTERVENTIONS, MULTIPLE, SUGGESTING BENEFIT AND ADVICE PLUS DRUG TREATMENT SHOWING NO
BENEFIT ON COGNITIVE TESTS. FOR THE OTHER NONPHARMACOLOGICAL TREATMENTS
WE FOUND LITTLE TO NO BENEFIT FOR COGNITIVE DECLINE, IMPAIRMENT OR DEMENTIA. NEXT SLIDE. PHARMACOLOGICAL TREATMENTS, WE FOUND ESTROGEN
ALONE OR COMBINED WITH PROGESTIN SIGNIFICANTLY INCREASED RISK OF DEMENTIA OR MILD COGNITIVE
IMPAIRMENT. WE FOUND OTHER PHARMACOLOGICAL TREATMENTS
APPEARED TO HAVE LITTLE TO NO BENEFIT FOR PREVENTING OR DELAYING COGNITIVE DECLINE,
MILD COGNITIVE IMPAIRMENT OR DEMENTIA, IN INDIVIDUALS WITHOUT DEMENTIA, WE FOUND EVIDENCE
FOR DEMENTIA MEDICATIONS, HYPERINTENSIVE, DIABETES AND LIPPED LOWER EDUCATIONS. SIGNIFICANT LIMITATIONS, PRIMARY STUDIES,
MANY OF THEM WERE NOT DESIGNED, MOST I WOULD SAY, WERE NOT DESIGNED PRIMARILY TO ASSESS
COGNITIVE OUTCOMES. THESE WERE ADDED OFTENTIMES TO STUDIES THAT
HAD A CARDIOVASCULAR PRIMARY ENDPOINT. THIS POSSIBLY INTRODUCES REPORTING BIAS, SINCE
THE STUDIES THAT REPORTED COGNITIVE OUTCOMES REPRESENT MAY� MINORITY OF TRIALS OF THESE
INTERVENTIONS. MANY OF THESE TRIALS WERE TOO SHORT TO SHOW
MEANINGFUL COGNITIVE CHANGE IN THE MOSTLY NORMAL OR COGNITIVELY NORMAL PARTICIPANTS. THERE WAS A HIGH ATTRITION RATE FOR MANY STUDIES. THIS RESULTED IN A LOT OF STUDIES BEING CONSIDERED
HIGH RISK BIAS AND EXCLUDED, AND NEXT SLIDE, COGNITIVE OUTCOMES REPORTED HETEROGENEOUS
BETWEEN TRIALS WHICH MADE IT DIFFICULT TO SYNTHESIZE RESULTS FROM DIFFERENT TRIALS,
AND GET A BIG PICTURE� AS CLEAR A BIG PICTURE OF THE EFFECTS OF INTERVENTIONS. FEW OF THE TRIALS REPORTED ON THE OUTCOMES
OF INCIDENT MILD COGNITIVE IMPAIRMENT OR DEMENTIA. THERE WAS VERY LIMITED SUBGROUP DATA REPORTED
AND ADVERSE EVENTS WERE POORLY REPORTED. THAT’S THE LAST SLIDE.>>THANKS VERY MUCH. MARY AND HOWARD. NOW STORY IS GOING TO TELL US WHAT ALL THIS
MEANS.>>THANKS. SO THAT REPORT WAS HANDED OVER TO A COMMITTEE
OF THE NATIONAL ACADEMIES OF SCIENCE, ENGINEERING AND MEDICINE, FOR A STUDY THAT WAS FUNDED
BY THE AGING INSTITUTE. THE REPORT OF THAT COMMITTEE’S ASSESSMENT
OF WHAT YOU JUST HEARD HAS BEEN PUBLISHED IN THIS REPORT PREVENTING COGNITIVE DECLINE
AND DEMENTIA WITH HOPEFUL SEMICOLON A WAY FORWARD. THE COMMITTEE THAT LOOKED AT THIS REPORT YOU
HEARD WAS A PRETTY DISTINGUISHED COMMITTEE. THE CHAIR WAS ALAN LESHMAN WHO IS IN AFRICA
SHOWING LIONS AND LEOPARDS TO HIS GRANDSON. AND I WAS THE COCHAIR. BUT IT INCLUDED NEUROLOGISTS, COMMUNICATION
EXPERTS, STATISTICIANS. I WOULD SAY THE COMMITTEE WORKED VERY HARD
TO ASSESS THE REPORT AND TO COME UP WITH FULFILLMENT OF THE TASK. NOW, THE TASK WAS TO ACTUALLY EXAMINE THE
EVIDENCE THAT YOU’VE JUST HEARD ON INTERVENTIONS FOR DELAYING OR SLOWING ARCD, PREVENTING,
DELAYING OR SLOWING MILD COGNITIVE IMPAIRMENT AND CLINICAL ALZHEIMER’S TYPE DEMENTIA AND
RECOMMEND INTERVENTION SUPPORTED BY SUFFICIENT EVIDENCE TO BE INTEGRATED INTO HEALTH STRATEGY
AND MESSAGES AND THINK ABOUT AREAS FOR FUTURE RESEARCH. NOW, THE STUDY MODEL IS ACTUALLY NOVEL FOR
THE NATIONAL ACADEMIES BECAUSE IT INVOLVED TWO PHASES. THE FIRST PHASE WAS ACTUALLY TO HAVE THE COMMITTEE
MEET WITH THE AhRQ SYSTEMATIC REVIEW GROUP AND TALK TO THEM ABOUT WHAT THEY WERE GOING
TO LOOK AT AND WHAT THE DEFINITIONS WERE AND WHAT KINDS OF STUDIES THEY COULD WORK ON. IT WAS EDUCATIONAL FOR EPC AND FOR THE COMMITTEE. WE MET WITH THEM, AND THEN THEY CHANGED THE
SEARCH THEY WERE GOING TO DO AND THEY DID THE STUDY AND THAT WAS ACTUALLY PUBLISHED
IN JANUARY OF 2017. AND THEN THE SECOND PHASE WAS THAT THE COMMITTEE
DREW FROM THAT REPORT AND OTHER EVIDENCE SOURCES AND OTHER EVIDENCE SOURCES THAT WE USED WERE
A TESTIMONY AT A PUBLIC MEETING WORKSHOP AND THEN ALSO OBSERVATIONAL STUDIES. AND YOU MIGHT ASK, WELL, IF YOU PAID FOR THAT
AHRQ REPORT WHY DID YOU WANT SUPPLEMENTAL SOURCES? AND I THINK THAT THE COMPELLING REASON TO
US WAS THAT THE AHRQ REPORT FOCUSED ON ONLY RANDOMIZED CONTROL TRIAL DATA. AND AS YOU’VE JUST HEARD, MANY OF THE POTENTIAL
RISK FACTORS THAT HAVE BEEN DESCRIBED HAVE NOT BEEN TESTED IN GOOD RANDOMIZED CONTROL
TRIALS AND THAT’S BECAUSE THOSE TRIALS ARE CHALLENGING. TO DO THE STUDY RIGHT THERE NEEDS TO BE LONG
FOLLOWUP REQUIREMENT. THERE ARE COMORBID CONDITIONS WHICH HAVE TO
BE ASSESSED. AND THERE’S ALSO THE NOTION THAT SECULAR DIMENSIONAL
TRENDS WITH CHANGING. FINALLY THERE ARE SOME CLINICAL TRIALS YOU
WOULD LIKE TO MAYBE HAVE SEEN DONE, UNETHICAL, SO SMOKING IS CLEARLY IDENTIFIED AS A RISK
FACTOR BUT YOU COULD NEVER RUN A CLINICAL TRIAL THAT WOULD TEST CESSATION OF SMOKING. THAT JUST WOULDN’T GO. KINDS OF EVIDENCE WERE TESTIMONY FROM PUBLIC
WORKSHOP, COHORT STUDIES, NEUROBIOLOGICAL STUDIES, MECHANISTIC BRAIN IMAGING STUDIES
AND KNOWLEDGE OF BENEFITS, HARMS AND COSTS OF DIFFERENT INTERVENTIONS. TO SUMMARIZE THE OUTCOME OF OUR STUDY IS THAT
THERE’S INSUFFICIENT EVIDENCE TO JUSTIFY AN AGGRESSIVE PUBLIC HEALTH INFORMATION CAMPAIGN
TO ENCOURAGE THE ADOPTION OF ANY SPECIFIC INTERVENTIONS. HOWEVER, THE COMMITTEE FELT AND HAS REPORTED
THAT THREE INTERVENTIONS WERE ACTUALLY SUPPORTED BY ENCOURAGING BUT INCONCLUSIVE EVIDENCE. THERE WAS A LOT OF DISCUSSION ABOUT THAT WORDING. THOSE THREE WITH COGNITIVE TRAINING, BLOOD
PRESSURE MANAGEMENT FOR PEOPLE WITH HYPERTENSION, AND INCREASED PHYSICAL ACTIVITY. AND A PIECE OF THE REASON FOR SUPPORTING THOSE
IS THAT ALL HAVE MINIMAL RISK OF HARM AND TWO ARE KNOWN TO BE BENEFICIAL FOR OTHER CONDITIONS. NOW, I’M GOING TO GO THROUGH THE KIND OF REASONING
THAT THE COMMITTEE USED FOR TWO OF THOSE INTERVENTIONS, COGNITIVE TRAINING AND FOR THE BLOOD PRESSURE
MANAGEMENT, I’M NOT GOING TO DISCUSS PHYSICAL EVIDENCE FOR REASONS OF TIME AND THE KINDS
OF REASONING ARE VERY SIMILAR. SO THE COGNITIVE TRAINING, SUPPLEMENTAL EVIDENCE
THERE ARE NO OBSERVATIONAL STUDIES HAVE HAVE BEEN IDENTIFIED. WE DIDN’T IDENTIFY AND FOR COGNITIVE TRAINING. AND HOWEVER OBSERVATIONAL STUDIES HAVE SUGGESTED
PARTICIPATING IN COGNITIVELY STIMULATING ACTIVITIES, READING, GAMES, LEARNING A NEW LANGUAGE, LEARNING
TO PLAY A MUSICAL INSTRUMENT, MAY LOWER RISK OF COGNITIVE IMPAIRMENT AND LOWER EDUCATIONAL
ATTAINMENT IS KNOWN TO BE A MODIFIABLE RISK FACTOR FOR DEMENTIA. SO THE CONCLUSIONS WE DREW OR THE DESPITE
LIMITATIONS OF THE ONE TRIAL THAT THE EPC GROUP IDENTIFIED, THE ACTIVE TRIAL, THAT TRIAL
PROVIDED MODERATE STRENGTH RCT EVIDENCE SUGGESTING COGNITIVE TRAINING CAN ACTUALLY MAKE A DIFFERENCE,
IN PARTICULAR THERE WERE PROMISING RESULTS WITH RESPECT TO ACTIVITIES OF DAILY LIVING. I WANT TO EMPHASIZE AHRQ REVIEW DID, THERE
IS NO EVIDENCE WHATSOEVER THAT COGNITIVE TRAINING BRAIN GAMES WORK, AND I WOULD SAY ONE OF THE
UNFORTUNATE ASPECTS OF THIS REPORT WAS ALMOST IMMEDIATELY ONE OF THOSE COMPANY PUT OUT AN
ANNOUNCEMENT SAYING THAT THIS PROVIDES EVIDENCE FOR OUR BRAIN TRAINING PROGRAMS. ARCD, THERE’S NO EVIDENCE COGNITIVE TRAINING
SLOWS OR DELAYS MILD COGNITIVE IMPAIRMENT OR CLINICAL TYPE ALZHEIMER’S DEMENTIA. NOW, THE PART THAT THE COMMITTEE STRUGGLED
WITH THE MOST WAS THE ISSUE OF BLOOD PRESSURE MANAGEMENT, AND THAT’S BECAUSE AS YOU’VE HEARD
SEVERAL TIMES CEREBROVASCULAR DISEASE IS LINKED, INCREASINGLY RECOGNIZED, IF YOU LOOK YOU KNOW
THAT ANTIHYPERTENSIVES ARE KNOWN TO REDUCE STROKE RISK AND SUBCLINICAL CEREBROVASCULAR
DISEASE AND MORE ASSOCIATIONS BETWEEN BLOOD PRESSURE LOWERING AND IMPROVED COGNITIVE PERFORMANCE,
OUTCOMES, DEMENTIA AND COGNITIVE PERFORMANCE. SO THE CONCLUSIONS OF OUR GROUP WERE THAT
RCT DATA DO NOT OFFER STRONG SUPPORT FOR PATIENTS, FOR DELAYING OR SLOWING ARCD OR PREVENTING,
DELAYING OR SLOWING MILD COGNITIVE IMPAIRMENT OR CLINICAL ALZHEIMER’SDEMENTIA. ONE TRIAL PROVIDE EVIDENCE OF IMPACT ON THE
RISK OF CLINICAL ALZHEIMER’S TYPE DEMENTIA. WE ALSO RECOGNIZED AS DID THE ETC GROUP ADD
ON TRIALS WITH CARDIOVASCULAR ENDPOINTS MAY NOT HAVE� MAY NOT HAVE BEEN OPTIMALLY DESIGNED
TO DETECT IMPACT ON COGNITIVE OUTCOMES. AND WHAT WE DID THEN WAS WE TOOK ADVANTAGE
OF SOMETHING CALLED THE HILL CRITERIA FOR CAUSAL INFERENCE. SO WHEN EXPERIMENTAL EVIDENCE IS LACKING,
EPIDEMIOLOGICAL EVIDENCE SUGGESTS AN ASSOCIATION HILL CRITERIA CAN BE USED TO DETERMINE IF
CAUSAL INFERENCE CAN BE DRAWN AND STRENGTH, PLAUSIBILITY AND COHERENCE, SO BASED ON OUR
ASSESSMENT OF THE VARIOUS STUDIES THAT HAVE BEEN SHOWN, WE FELT THAT DATA FROM NONRANDOMIZED
STUDIES SUGGESTED EFFECT OF BLOOD PRESSURE MANAGEMENT ON INCIDENT, CLINICAL ALZHEIMER’STYPE
DEMENTIA, CATD, WE MADE IT A LITTLE BIGGER THAN JUST STRAIGHT A.D. BECAUSE YOU HEARD ABOUT DIFFICULTY OF IDENTIFYING
STRAIGHT A.D., IF YOU DO THAT IN HYPERTENSIVE IT’S CONSISTENT WITH CAUSAL RELATIONSHIP. NOW, WHEN YOU PUT ALL OF IT TOGETHER, OUR
FIRST RECOMMENDATION WAS THAT NIH, CDC AND OTHER ORGANIZATIONS INCLUDING FOR EXAMPLE
THE ALZHEIMER’S ASSOCIATION SHOULD MAKE CLEAR POSITIVE EFFECTS OF FOLLOWING INTERVENTIONS
ARE SUPPORTED BY ENCOURAGING BUT INCONCLUSIVE EVIDENCE, COGNITIVE TRAINING, BLOOD PRESSURE
MANAGEMENT AND INCREASED PHYSICAL ACTIVITY. HOW MIGHT THE PUBLIC BE INFORMED ABOUT THIS? NIH AND OTHERS SHOULD PROVIDE ACCURATE INFORMATION
ABOUT POTENTIAL IMPACTS OF THESE THREE INTERVENTION CLASSES ON COGNITIVE OUTCOMES IN PLACES WHERE
PEOPLE CAN ACCESS IT LIKE THE WEBSITES, AND ALSO THAT PUBLIC HEALTH PRACTITIONERS AND
HEALTH CARE PROVIDERS SHOULD INCLUDE MENTION OF THE POTENTIAL COGNITIVE BENEFITS WHEN PROMOTING
INTERVENTION ADOPTION FOR THE PREVENTION OR CONTROL OF OTHER DISEASES AND CONDITIONS. AND WE’VE HEARD SEVERAL TIMES TODAY THE NOTION
OF DEMENTIA IS SCARIER NOW, HAS MORE IMPACT ON PEOPLE THAN FOR EXAMPLE HEART ATTACK OR
CANCER. SO THAT WAS OUR FIRST RECOMMENDATION. WE ALSO AS WE ASSESS THE STUDIES AND IN AGREEMENT
WITH WHAT THE EPC GROUP DID SAID THERE WERE COMMON METHODOLOGICAL LIMITATIONS TO THE STUDIES. THE INITIATION OF INTERVENTIONS WAS AT LATER
LIFE STAGES THAN MAY BE NECESSARY TO HAVE IMPACT. YOU MAY PASS OPTIMAL WINDOW. STUDIES WEREN’T LONG ENOUGH. HETEROGENEOUS OUTCOME MEASURES, FAILURE TO
COLLECT DATA, SMALL SIZE, UNDERPOWERED SIZES, ATTRITION, HOMOGENOUS STUDY POPULATION AND
SUBOPTIMAL STUDIES GROUPS. IT’S NOT SURPRISING THERE WERE METHODOLOGICAL
RECOMMENDATIONS. SECOND RECOMMENDATION WAS THAT TO THE EXTENT
POSSIBLE, IN CONDUCTING FUTURE TRIALS, PEOPLE SHOULD SUPPORT STUDIES THAT IDENTIFY INDIVIDUALS
AT HIGHER RISK OF COGNITIVE DECLINE AND WE HEARD ABOUT SOME BIOMARKERS, TAILOR INTERVENTIONS
ACCORDINGLY, DON’T TRY TO TREAT SOMEBODY WITH VASCULAR DEMENTIA FOR ALZHEIMER’S. INCREASE PARTICIPATION OF UNDERREPRESENTED
POPULATION, USE CONSISTENT MEASURES, START INTERVENTIONS EARLIER WITH LONGER FOLLOWUP,
AND INTEGRATE COGNITIVE OUTCOME MEASURES INTO TRIALS WITH OTHER PRIMARY PURPOSES BUT DO
IT FROM THE BEGINNING, NOT HALFWAY THROUGH. AND THEN OPTIMALLY CONDUCT LARGE TRIALS IN
LARGE ROUTINE CLINICAL SETTINGS. NOW, THE THIRD RECOMMENDATION AND WE WEREN’T
REALLY ASKED TO SAY ANYTHING ABOUT THE METHODOLOGICAL LIMITATIONS BUT WE WEIGHED IN ANYWAY. THE THIRD WAS THE HIGHEST PRIORITY FOR FUTURE
RESEARCH. AND I TOLD YOU IT WAS ENCOURAGING BUT NOT
DEFINITIVE EVIDENCE FOR THOSE THREE INTERVENTIONS, AND SO LOOKING AT OR LOOKING TO CONDUCT, IF
POSSIBLE, TRIALS THAT WOULD STRENGTHEN EVIDENCE FOR THOSE THREE INTERVENTIONS, COGNITIVE TRAINING,
BLOOD PRESSURE MANAGEMENT, AND INCREASED PHYSICAL ACTIVITY, WOULD BE GOOD AND OF PARTICULAR
INTEREST IS WHAT WERE THE CRITICAL PARTS OF THE ACTIVE TRIAL, WHICH DID HAVE THE MOST
POSITIVE FINDINGS OF ALL THOSE TRIALS. AND WE ALSO RECOGNIZE THAT THERE WAS THIS
DEPRESSING LIST, YOU HEARD NO EVIDENCE FOR DIABETES, NO EVIDENCE FOR THIS, NO EVIDENCE
FOR THAT, AND THESE ARE KNOWN RISK FACTORS FOR DEMENTIA AND SO IF POSSIBLE ONE MIGHT
THINK ABOUT TRYING TO DESIGN COMPELLING CLINICAL TRIALS THAT WOULD SHED LIGHT ON THIS AS WELL. NOW, THERE WERE SOME CROSSCUTTING CONSIDERATIONS. SO WE HEARD FROM THE PREVIOUS PRESENTATION
ABOUT MULTIMODAL APPROACHES, AND WE’VE HEARD ALSO THAT IT’S UNLIKELY THAT ONE INTERVENTION
IS GOING TO BE EFFECTIVE IF THESE ARE MULTIDIMENSIONAL DISEASES. SO THINKING ABOUT HOW YOU WOULD TEST MULTIMODAL
APPROACHES, AND IN NONE OF THE STUDIES YOU’VE HEARD ABOUT HAVE THERE BEEN DATA, I SHOULDN’T
SAY HAVEN’T BEEN EFFORT, HAVEN’T BEEN DATA TO OPTIMIZE DELIVERY SCHEDULE AND DURATION. IT MAKES SENSE YOU WOULDN’T ASSUME THAT A
YEAR OF PHYSICAL ACTIVITY IF YOU THEN STOPPED AND DIDN’T CONTINUE WOULD HAVE AN IMPACT ON
DEMENTIA, BUT THAT’S� I MEAN THAT’S COMMON SENSE. THAT’S NOT DATA. THOSE AREN’T DATA. AND HOW COULD YOU GET PEOPLE TO ADHERE TO
THE INTERVENTIONS? WE KNOW IN CLINICAL TRIALS A MAJOR CONSIDERATION
IS PEOPLE START OFF BUT IF YOU TEST WHETHER OR NOT THEY HAVE TAKEN THE MEDS MANY PEOPLE
WHO SAY THEY HAVE BEEN ADHERENT HAVEN’T BEEN ADHERENT. IT’S NOT A VALID TEST IF PEOPLE DON’T ADHERE
TO INTERVENTION. ALSO THINKING ABOUT STRATEGIES TO DO CLINICAL
TRIALS IN NEW AND INNOVATIVE FASHIONS. WHICH MIGHT MAKE THEM SMALLER TRIALS, AND
WE’D HAVE RESULTS SOONER. SO WHILE I THINK EVERYBODY ON THE COMMITTEE
STARTED WITH A HOPE THAT WE WOULD BE ABLE TO MAKE A RECOMMENDATION FOR AN AGGRESSIVE
PUBLIC HEALTH CAMPAIGN ON AT LEAST ONE OR MORE OF THESE INTERVENTIONS, THAT DIDN’T TURN
OUT. BUT I THINK WHAT YOU’VE HEARD TODAY AND SINCE
YOU ALL KNOW A LOT ABOUT DEMENTIAS, THIS IS A VERY RAPIDLY MOVING FIELD. I MEAN, WE NOW KNOW DEMENTIA DOESN’T DEVELOP
OVERNIGHT. YOU JUST DON’T START WITH BRAIN CHANGES THE
YEAR BEFORE YOU HAVE SYMPTOMS. IT’S A LONG PROCESS. AND WE ALSO KNOW THAT MIXED DEMENTIAS, IT’S
UNUSUAL THAT IT’S A PURE CAUSE OF DEMENTIA. SO LOTS OF IMPORTANT INFORMATION THAT WILL
INFORM HOW TRIALS ARE DONE. AND I THINK THE NIA, YOU SET A VERY HIGH BAR
FOR WHAT COULD BE RECOMMENDED FOR PUBLIC HEALTH MESSAGING AS AN INTERVENTION, AND IS IT POSSIBLE
THAT RANDOMIZED CONTROL TRIALS MAY NOT ALWAYS BE THE BEST POSSIBLE OR ABLE TO YIELD THE
NEEDED EVIDENCE? I GAVE AN EXAMPLE. WE CAN’T RUN A TRIAL ON SMOKING CESSATION. SO LOTS OF ENCOURAGING DATA FOR SOME INTERVENTIONS,
AND THE PUBLIC SHOULD HAVE ACCESS TO THAT INFORMATION. BUT THE COMMITTEE IS INCREDIBLY OPTIMISTIC,
VERY OPTIMISTIC, THAT WE’RE GOING TO LEARN MUCH MORE IN THE COMING YEARS, AND THAT IT
WILL BE REALLY IMPORTANT FOR WHAT IS NOW THE OUTCOME OF THIS REPORT TO BE UPDATED AS WE
LEARN THAT. SO THANK YOU VERY MUCH.>>THANK YOU, STORY. AND HOWARD AND MARY. AND RICHARD.>>LET ME FIRST ON BEHALF OF ALL OF US AND
THE WORLD, THANK YOU ALL FOR THE GREAT EFFORTS PUT FORWARD HERE. IT WAS TWO YEARS AGO WE STARTED TO THINK ABOUT
THIS, THE BACKGROUND OF SEVERAL PREVIOUS STUDIES, NOTABLY IN 2010, ACTIVITY THAT WAS VERY MUCH
LIKE THE EVIDENCEBASED PRACTICE CENTER AHRQ FIRST FORMED WHICH SAID THERE’S NO EVIDENCE
FOR ANYTHING. TIME PASSED. THERE WERE NEW RESEARCH FINDINGS BUT THE STRENGTH
OF THE 2010 EFFORT FOR EXAMPLE AS WITH THE AHRQ EPC COMPONENT HERE WAS SO PEOPLE UNDERSTOOD. IT TOOK PEOPLE HIGHLY EXPERT IN EVALUATING
RESEARCH AND EVIDENCE BY DESIGN DID NOT HAVE BACKGROUND AND THERE ARE NO STATED BIAS OR
EXPERIENCE IN THE AREA OF DEMENTIA. RECOGNIZING THAT THIS WAS A CONCERN AFTER
THE 2010 STUDIES AND NOT THE WHOLE PICTURE IN SUCH AN EVALUATION WE COUPLE THAT WITH
QUESTION TO NATIONAL ACADEMIES TO TAKE THE DATA THAT CAME FROM THE EVIDENCEBASED EXERCISE
AND THEN GO FURTHER, EVALUATED WITH PEOPLE HIGHLY EXPERT AND I WOULD SAY SOME OF WHOM
ACTUALLY PUBLISHED WRITTEN BOOKS, WHICH WERE VERY ENTHUSIASTIC ABOUT CERTAIN OF THESE INTERVENTIONS
AND THEY WERE THEY WERE GIVEN THE VERY IMPRESSIVE CHALLENGING TASK OF ALL WORKING TOGETHER WITH
WHAT OTHERS HAD SAID WAS QUALITY OF EVIDENCE AND DOING THEIR VERY BEST, EXTRAORDINARY GROUP
OF PEOPLE TO COME UP WITH RECOMMENDATIONS AND YOU’VE SEEN THEM. WE APPRECIATE IT. IT’S QUITE TRUE, A HIGH BAR. ENCOURAGING BUT NOT CONCLUSIVE IS TERM OF
ART. FOR OTHER IT’S SIMPLER. HERE ARE THINGS THAT MIGHT WORK, NOT DISCORDANT
CONCLUSIONS. WE FELT ON BEHALF OF ALL OF US, CERTAIN NIH,
NO ONE WAS GOING TO SET A BAR HIGH AND ASK PEOPLE TO EVALUATE AND THEN RECOGNIZING THE
LIMITATIONS, THE FACT THAT WITH IMPERFECT INFORMATION WE HAVE TO DRAW CONCLUSIONS, CAN’T
SAY NOBODY DO ANYTHING, DON’T FOLLOW ANY RECOMMENDATIONS BECAUSE NONE OF THEM ARE PERFECT, THEN IT
WAS FOR US, FOR POLICYMAKERS TO TAKE THAT EVIDENCE WITH A CLEAR STATEMENT OF WHAT ITS
QUALITY WAS AND IMPORTANTLY WHAT DO WE DO NEXT. A LARGE PART OF WHAT WE’RE HERE TO CONSIDER. JUST TO SAY I THINK THE RECOMMENDATIONS THAT
HAVE BEEN MADE HERE ARE IN PART IN PROCESS BEING ACTIVATED NOW AND WILL DRIVE STILL FURTHER
STUDIES, SO FOR EXAMPLE ACTIVE, THE ONE STUDY THAT IMPRESSED PEOPLE PERHAPS MOST OF ALL
OF THEM WAS BEGUN MORE THAN A DECADE AGO WITH A SPECIFIC NOTION THAT IT SHOULDN’T BE POWERED
FOR DEMENTIA, NOT LIKELY TO AFFECT DEMENTIA AND WE SHOULDN’T GO. THERE IT’S POSSIBLE TO DO A STUDY LIKE THAT
AGAIN. IT TAKES YEARS, LONG STUDIES, LOOKING SERIOUSLY
AT MAKING THAT PRIORITY. HYPERTENSION, WE CAN’T DO A STUDY IN WHICH
WE DON’T CONTROL HIGH BLOOD PRESSURE BUT WE HAVE THE SPRINT TRIAL, UNDERTAKEN TO SEE WHAT
THE LEVEL OF APPROPRIATE CONTROL OF BLOOD PRESSURE WAS, AND HERE IS ONE WHERE AT LEAST
IT WAS RECENT ENOUGH WE WERE SMART ENOUGH TO DO WHAT STORY AND THE COMMITTEE RECOMMENDED
SUPPLEMENTED WITH SPRINT MINDS. IT WAS STARTED IN PEOPLE WHO WERE OLDER ADULTHOOD
AND NOT MIDDLE AGE, ANOTHER CHALLENGE, BUT WE’RE LEARNING IN INCREMENTS HERE, THAT STUDY
WAS TERMINATED BECAUSE THE AGGRESSIVE CONTROL, BLOOD PRESSURE, SUPERIOR FOR OTHER OUTCOMES
BUT WE’RE CONTINUING TO FOLLOW FOLKS WITH NEUROIMAGING, BIOMARKERS TO SEE IF EXPOSURE
MADE A DIFFERENCE. THAT’S A STUDY BETTER EQUIPPED TO ANSWER THE
QUESTION THAN ANYTHING BEFORE. EXERCISE, THERE ARE RANDOMIZED PROSPECTIVE
CLINICAL TRIALS WE’VE BEGUN USING COGNITIVE TESTING, NEURO IMAGING, BIOMARKERS, LOOKING
IT’S A PROPOSALS FOR WELLDESIGNED STUDIES TO PROSPECTIVELY ADDRESS THESE. THANKS FOR THIS EXPLANATION OF WHERE WE ARE,
ENORMOUSLY HELP, WHAT WE NEED TO DO IN THE FUTURE.>>RON WAS A MEMBER OF THE COMMITTEE. I DON’T KNOW IF YOU’D LIKE TO COMMENT.>>NO, YOU’VE BOTH CAPTURED IT VERY WELL. I MEAN, I THINK THE COMMITTEE DID LABOR LONG
AND HARD ON HOW TO INTERPRET BECAUSE IT DIDN’T WANT TO COME OUT WITH NOTHING FOR NOTHING
AND THE CONCERNS RICHARD RAISED ABOUT THE 2010 EXERCISE I THINK WERE PARTIALLY COMPENSATED
BY THIS APPROACH, THE TWOLEVEL APPROACH. SO I THINK THE DATA ARE ENCOURAGING, AND I
THINK THAT PEOPLE SHOULD TAKE MESSAGES AWAY TO THINK ABOUT SOME OF THESE THINGS ESPECIALLY
IF THEY ARE NOT DAMAGING TO ANY OTHER PURPOSE. SO I THINK IT’S A GOOD EXERCISE. AND RICHARD AND I WERE INVOLVED WITH AT THE
MEETING THE LANCET COMMISSION CAME OUT, JUST A FEW DAYS AFTER OUR PRESENTATION IN LONDON. AND MUCH MORE POSITIVE. RICHARD, YOUR TAKE? HAVE YOU HAD A CHANCE TO LOOK AT THAT?>>WELL, YES, FIRST, I MEAN, IT WAS NOT�
WE COULDN’T TELL FROM THE READ OF THE REPORT THE METHODOLOGIES. SO WHAT THEY DID TO INCLUDE OR EXCLUDE STUDIES
IN METAANALYSIS WASN’T CLEAR. WE DON’T KNOW THAT. I WOULD SAY THEY FOUND SOME OF THE MORE ENCOURAGING
OR PROMISING TO THEIR MIND RECOMMENDATIONS, TO BE CONSISTENT WITH WHAT THIS GROUP THOUGHT
TO BE MOST PROMISING. I ALLUDED TO THIS CRYPTICALLY. THEY SAID IF WE DO ALL THE FOLLOWING IT MIGHT
DECREASE BY 30%. “MIGHT” COVERS A LOT OF CONTINGENCIES. IF YOU WANT TO SAY ENCOURAGING BUT NOT CONCLUSIVE,
IT’S THE SAME AS MIGHT THERE YOU HAVE MAYBE THE MOST GENEROUS COMPATIBILITY
OF THE TWO REPORTS. BUT I DON’T KNOW IF YOU WANT TO ELABORATE
FURTHER.>>NO, I THINK THAT’S THE WAY. WE WERE ASKED ABOUT THAT AFTERWARD. THERE WAS MORE CONCORDANCE THAN NOT. IT WAS TERMINOLOGY, WITH ALL DUE RESPECT THE
LANCET FOLKS SPUN IT A BIT. THEY ARE SAYING MANY OF THE SAME MESSAGES,
LOOKING AT HEARING, DIDN’T LOOK AT OTHER ISSUES THEY D YOU’RE BEING POLITE WHEN THEY SAID
THEY USED EVIDENCEBASED MEDICINE CRITERIA, THAT REMAINS TO BE SEEN WHAT THOSE WERE. NEVERTHELESS I THINK IT WAS MORE CONCORDANT.>>THE LAST POINT IN THE LIST OF THINGS NOT
STUDIED, WE’RE BEGINNING PROSPECTIVE RANDOMIZED TRIAL LOOKING AT CORRECTION OF HEARING AND
RANDOM IMPACT, SO MANY RISK FACTORS WE CAN ADDRESS PROSPECTIVELY. THERE MAY BE SUBSETS OF WHAT WE CALL DEMENTIA
WITH DIFFERENTIAL CAUSES AND WE ARE TO BLAME IF WE DON’T THINK THIS WAY, ALL THESE PROSPECTIVE
STUDIES TOO. NOT THAT INTERVENTION WILL BE TARGETED FOR
ALL CAUSES. WE’LL HAVE TO PAY SPECIAL ATTENTION THE BEST
WE CAN, PROSPECTIVELY, RETROSPECTIVELY.>>THE COMMITTEE WORRIED ABOUT THAT LONG LIST
OF THINGS THAT COULD BE STUDIED BECAUSE WE COULD IMAGINE THAT EATING THE WHOLE DEMENTIA
BUDGET AT NIA AND LEAVING NOT ENOUGH RESOURCES FOR THE KINDS OF STUDIES THAT YOU HEARD ABOUT
EARLIER. BUT WE DECIDED IT WAS NOT FOR US TO CROSS
THINGS OFF THE LIST. BUT BECAUSE THERE WOULD HAVE BEEN DIFFICULTY,
THERE WERE PEOPLE WHO HAD FAVORITES ON THAT LIST. BUT TO LEAVE THAT TO THE INSTITUTE AND OTHER
PLANNING EFFORTS BECAUSE THERE ARE EVERY OTHER YEAR PLANNING EFFORTS AT THE NIH ON ALZHEIMER’S
RESEARCH AND RELATED DEMENTIA.>>I WOULD JUST ON THE POINT THAT RICHARD
MADE, COMPARED TO THE PRIOR GROUP PUT TOGETHER, I GIVE CREDIT TO THOSE WHO CONCEIVED AND POPULATED
THE GROUP TO HAVE EXPERTS THERE. CERTAINLY THE REACTION GENERALLY I THINK HAS
BEEN DIFFERENT IN NO SMALL PART BECAUSE OF THAT. CERTAINLY IT WAS A DISTINGUISHED GROUP, AS
YOU SAID, STORY. IT’S REALLY THE ASSOCIATION, WE’RE NOT PREPARED
TO GO FURTHER ON PROMOTION. WE BELIEVED IN WHERE THE SCIENCE IS, WE’VE
CHANGED OUR POSITION TO BEING PROMOTING THE IDEA YOU COULD POTENTIALLY REDUCE RISK OF
COGNITIVE DECLINE BUT NOT YOUR RISK OF DEMENTIA, AND THAT GOES BACK TO A YEAR OR MORE AGO. BUT IT’S CERTAINLY ALSO WHY WE ANNOUNCED THE
POINTER STUDY IN OUR COORDINATION OF THE FINGER STUDIES WORLDWIDE, TO GET AT WHAT ALREADY
MORE DATA WHICH ARE CLEARLY NEEDED. IN THAT REGARD FOR THOSE OF US WHO FIT THE
DESCRIPTION THAT THE SECRETARY GAVE THIS MORNING OF BEING A BOOMER, OR WHATEVER OTHER AGE GROUP
THAT FITS INTO THAT REALM, WHO HAVE BEEN AT THIS FOR A WHILE, ACROSS OTHER DISEASES AS
WELL, THE ENCOURAGING PART I THINK AS YOU DESCRIBED IT, STORY, WITH THE ENCOURAGEMENT
THAT IS PRESENT, WITHOUT THE DEFINITIVE ANSWERS, IS THE PATH THAT’S REALLY OCCURRED IN DIABETES,
IN CARDIOVASCULAR DISEASE, IN CANCER. THE ACCUMULATION OVER TIME, AS THE MUTUAL
FUND PEOPLE WOULD SAY, YOU KNOW, PRIOR RESULTS ARE NO INDICATION OF FUTURE RESULTS. BUT IT DOES APPEAR AT LEAST TO THE LAYPERSON
JUDGING FROM EVEN THE REPORT OF ALL THESE DISTINGUISHED SCIENTISTS, THAT THERE IS AN
UPBEAT SIDE TO THIS IN SEEING WHAT IS THE PROGRESS THUS FAR IF YOU COMPARE TO THOSE
OTHER CIRCUMSTANCES OF THE PAST THAT HAVE NOW DEMONSTRATED WHAT THE POSSIBILITIES CAN
BE. SO THE SCIENCE IS THERE YET TO BE DETERMINED,
BUT WE’RE CERTAINLY EAGER TO PARTICIPATE IN AND INVEST IN THOSE KINDS OF THINGS, AND I
THINK WHILE IT SHOULDN’T TAKE UP THE WHOLE BUDGET, STORY, I CERTAINLY APPRECIATE, RICHARD,
THE IDEA YOU’RE WILLING AND EAGER TO FUND MORE OF THAT SORT OF THING.>>WE’LL BE DISCUSSING THAT BYPASS BUDGET
PROPOSAL LATER IN THE DAY.>>ALL RIGHT. YES, MARY?>>I WOULD LIKE TO ADD TO THE STATEMENT AND
THANK YOU FOR INCLUDING HEARING. AS I WORK WITH THE AGING POPULATION, THE TWO
SENSORY DISABILITIES ARE OFTEN OVERLOOKED, WHEN YOU TALK ABOUT AGING AND FUNCTIONAL AND
COGNITIVE DISABILITIES, AND QUITE FRANKLY, YOU KNOW, BOTH OF THOSE COMMUNITIES WILL IDENTIFY
THAT THEY HAVE BEEN WAITING FOR US TO COME TO THEM RATHER THAN THEM COMING TO US. BUT VERY IMPORTANT. AND SO I THINK IT’S REALLY� IT’S A WAY THAT
WE MIGHT HELP BRING THEM ALONG, BECAUSE THE TOPIC ITSELF, IN PART BECAUSE MEDICARE DOESN’T
REIMBURSE, FOR GLASSES OR HEARING AIDS, THE COMMUNITIES THINK THEY ARE DEAD IN THE WATER. YOU HAVE A CHANCE TO KIND OF REVIVE THAT AND
I THINK IT’S A REALLY IMPORTANT ACTION THAT SHOULDN’T BE OVERLOOKED.>>IT TIES INTO THE ISSUE OF SOCIAL ISOLATION. YOU’RE DEAF. YOU CAN BE IN A GROUP OF PEOPLE BUT NOT ABLE.>>THAT’S CORRECT.>>TO BE PART OF THE SOCIAL INTERACTIONS.>>RIGHT.>>AND I THINK AND BLINDNESS.>>WHEN YOU’RE LOOKING AT THOSE TWO DISABILITIES
THAT AFFECT OVER 50% OF THE PEOPLE WHO ARE OVER AGE 65, I MEAN, STARTING WITH A DIMINISHMENT
BUT TO SEVERE. COULD I ASK WHY VISION IS NOT INCLUDED IN
THAT? IT’S A DIFFERENT KIND OF SOCIAL ISOLATION
BUT CERTAINLY IS EQUALLY IMPACTFUL FOR THE ADULT.>>THERE WAS A DISCUSSION ABOUT GOING BEYOND
WHAT WE DID, AND WHAT WE ENDED UP RESTRICTING OUR FUTURE RESEARCH RECOMMENDATIONS TO WERE
THINGS THAT HAD BEEN LOOKED AT IN THE AHRQ EPC REPORT. SO WE DIDN’T GO BEYOND THAT.>>TAKING AREAS WHERE THERE’S BEEN SOME EVIDENCE
TO REVIEW, USING THAT AS STARTING POINT, WAS BEHIND THIS EXERCISE. YOU’RE POINTING OUT SOMETHING VERY IMPORTANT
TOO. POTENTIAL FACTORS THAT HAVEN’T EVEN GOTTEN
TO THE STAGE OF EARLIEST RISK ASSESSMENT, WE DON’T WANT TO AND WON’T IGNORE. THEY ARE A STEP EARLIER IN THE PROCESS BUT
I HOPE WILL BE JUST AS COMPREHENSIVE.>>ALL RIGHTY. I THINK WE’RE A LITTLE BEHIND SO WE BETTER
MOVE ON. I WANT TO THANK STORY, HOWARD, MARY. THANKS VERY MUCH FOR CONTRIBUTING ON THE PHONE. AND I THINK WE’LL TAKE A BREAK NOW FOR LUNCH. MAYBE WE CAN CUT IT SHORT, HOW ABOUT COMING
BACK AT 1:20 OR SO? OKAY? THANK YOU. (LUNCH RECESS)

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