Advisory Council on Alzheimer’s Research, Care, and Services Part 1

By | September 12, 2019


>>GOOD MORNING, EVERYBODY. WE’RE GOING TO CONVENE. MAGICALLY THE MUSIC STOPS. WELCOME TO THE ADVISORY COUNCIL
ON ALZHEIMER’S RESEARCH CARE AND SERVICES. WE HAVE AS ALWAYS A FASCINATING
AND JAM PACKED DAY SO WE’RE GOING TO GET RIGHT INTO IT BUT
AS ALWAYS WE’LL START WITH INTRODUCTIONS. MY NAME IS LAURA GITLIN, I’M
DEAN OF THE COLLEGE OF NURSING AND HEALTH PROFESSIONS AT DREXEL
UNIVERSITY AND ADJUNCT PROFESSOR AT JOHNS HOPKINS UNIVERSITY. AND I’M CHAIR OF THE COUNCIL,
THE PROUD CHAIR OF THE COUNCIL, THE HONORS CHAIR OF THE COUNCIL. AND I DO SIT ON THE RESEARCH
SUBCOMMITTEE AND THE LONG TERM SERVICES AND SUPPORTS COMMITTEE. I’M GOING TO START BY GOING THIS
WAY. EVERYBODY JUST INTRODUCE
YOURSELF AND IF YOU WOULD WHO YOU’RE REPRESENTING. I’M REPRESENTING RESEARCH
COMMUNITY AS NON-FEDERAL MEMBER AND THE COMMITTEE YOU WORK ON.>>GOOD MORNING, EVERYBODY. I’M DEBRA CHERRY FROM
ALZHEIMER’S LOS ANGELES, I’M CHAIR OF THE LONG TERM SERVICES
AND SUPPORTS COMMITTEE. I’M HERE AS AN ADVOCATE PATIENT
ADVOCATE.>>MICHELLE VAHALIK, I REPRESENT
ONE OF THE STATES, TEXAS HEALTH AND HUMAN SERVICES, I SIT THE
RESEARCH COMMITTEE AS WELL AS THE LONG TERM CARE SERVICES SUPPORTS COMMITTEE.>>GOOD MORNING, EVERYBODY. I’M ROHINI KHILLAN, DESIGNATED
FEDERAL OFFICER AND WORK ASSISTANT SECRETARY FOR PLANNING
EVALUATION FOR ASPE.>>I’M GAVIN KENNEDY, ACTING
DEPUTY ASSISTANT SECRETARY. AND ACTING ASSOCIATE DEPUTY
SECRETARY. HERE FOR KARA TOWNSEND AND FOR
MYSELF I SUPPOSE. AND ROHINI ASKED ME TO MENTION
WHICH I’M GLAD SHE DID THAT MY FATHER PASSED A COUPLE OF MONTHS
AGO FROM LOUIS BODY PARKINSON’S.>>(INDISCERNIBLE) I SERVE ON
THE LONG TERM SERVICES AND SUPPORT SUBCOMMITTEE. I’M A FORMER CAREGIVER FOR MY
MOM WHO PASSED AWAY FROM ALZHEIMER’S AND PRESENT
CAREGIVER FOR MY SON WHO HAS DOWN’S SYNDROME.>>I’M ERIN LONG, I REPRESENT
ADMINISTRATION FOR COMMUNITY LIVING ADMINISTRATION ON AGING
AND I AM WITH THE LONG TERM SERVICES AND SUPPORTS COMMITTEE.>>GOOD MORNING. I’M ANGELA TAYLOR. WITH THE LEWY BODY DEMENTIA
ASSOCIATION. I’M A PATIENT ADVOCATE AND CHAIR
THE RESEARCH SUBCOMMITTEE.>>GOOD MORNING. MY NAME IS LISA MACGUIRE, I’M
FROM THE CENTERS FOR DISEASE CONTROL AND PREVENTION IN
ATLANTA. AND ATLANTA I LEAD CDC
ALZHEIMER’S DISEASE HEALTHY AGING PROGRAM. I SERVE ON THE LONG TERM SERVICES SUPPORT COMMITTEE, THE
RESEARCH COMMITTEE, AND MY MOTHER ALSO HAS ALZHEIMER’S
DISEASE.>>GARY EPSTEIN, ADVISORY
COUNCIL MEMBER AND PSYCHIATRIST, I’M NON-FEDERAL CHAIR FOR THE
CLINICAL CARE SUBCOMMITTEE. I AM ALSO THE MEDICAL DIRECTOR
FOR THE CENTER FOR MEMORY HEALTH, NEW PROGRAM, AND MY
PRIMARY ACADEMIC APPOINTMENT IS BROWN WITH VISITING APPOINTMENT
AT HARVARD.>>ROD CORYVILLE REPRESENTING
NINDS REPRESENTING THE NIH AS THE NINDS LEAD FOR ALZHEIMER’S
DISEASE RELATED DEMENTIA AND TO REPORT ON NINDS ACTIVITIES UNDER
THE NATIONAL PLAN. AND ON OCCASION I WEAR MY
FATHER’S TIE. HE ACTUALLY DIED WITH DEMENTIA A
COUPLE OF YEARS AGO.>>BILL SPECTOR REPRESENTING
AHRQ AND MY FATHER ALSO DIED OF ALZHEIMER’S DISEASE.>>GOOD MORNING, I’M DEBRA
OLSTER REPRESENTING THE NATIONAL SCIENCE FOUNDATION I’M SENIOR
ADVISOR AND DIRECTOR FOR SOCIAL BEHAVIORAL ECONOMIC SCIENCES I’M
ON THE FEDERAL RESEARCH SUBGROUP.>>GOOD MORNING. MY NAME IS MARY ANN SHENNESEY,
ONE OF THE FEDERAL PARTNERS HERE FOR THE VA OFFICE OF
GERIATRICIAN AND EXTENDED CARE.>>GOOD MORNING. ROBERT WITH THE ALZHEIMER’S
ASSOCIATION I PARTICIPATED ON ALL THREE SUBCOMMITTEES.>>GOOD MORNING. I’M BRUCE FINK WITH INDIAN
HEALTH SERVICE. I PARTICIPATE ON THE CLINICAL
CARE AND LONG TERM SERVICES AND SUPPORT SUBCOMMITTEE.>>GOOD MORNING. JOAN WEISS, REPRESENTATIVE FROM
THE HEALTH RESOURCES AND SERVICES ADMINISTRATION. I’M SENIOR ADVISOR IN THE
DIVISION OF MEDICINE AND DENTISTRY AND THE AGENCY LEAD
FOR GERIATRICIAN WORK FORCE DEVELOPMENT AND ENHANCEMENT.>>GOOD MORNING, MY NAME IS
BECKY KURTS WITH THE ATLANTA REGIONAL COMMISSION I SERVE AS
AREA AGENCY ON AGING DIRECTOR FOR METROPOLITAN, ATLANTA. I SERVE ON THE LONG TERM
SERVICES AND SUPPORTS COMMITTEE AND I AM CAREGIVER FOR FAMILY
MEMBER LIVING WITH DEMENTIA.>>RICHARD HODES, NATIONAL
INSTITUTE ON AGING AND RESEARCH.>>GOOD MORNING, I’M CYNTHIA
HUMMEL, I REPRESENT THOSE LIVING WITH ALZHEIMER’S MORE THAN
5.7 MILLION AMERICANS AND RELATED DEMENTIAS AND I SERVE ON
ALL THREE SUBCOMMITTEES.>>I’M VERONICA COOL WITH COOL
ASSOCIATES AND I’M PARTICIPATING IN THE FIRST PANEL. THANK YOU FOR HAVING ME.>>GOOD MORNING. I’M JOHN COLLINGE, AND I’M
SPEAKING IN MY ROLE AS CAREGIVER ON BEHALF OF MY WIFE, ZONDRA AND
I’M ADVOCATE FOR MY SON SAM COLLINGE, AN AUTISM PATIENT.>>GOOD MORNING. MY NAME IS MARY HOGAN, I’M HERE
AS A FAMILY MEMBER AND ADVOCATE. I’M AFFILIATEDD WITH THE
NATIONAL TASK GROUP ON INTELLECTUAL DISABILITIES AND
DEMENTIA PRACTICE, HERE TO REPRESENT A NUMBER OF FAMILIES
WHO HAVE PREPARED ME FOR TODAY’S PANEL.>>GOOD MORNING MY NAME IS
DIANENA BLACKWELDER HERE FROM WASHINGTON D.C., VOLUNTEER
ADVOCATE FOR NATIONAL ALZHEIMER’S EARLY STAGE ADVISORY
GROUP. I’M CURRENTLY LIVING WITH
YOUNGER ONSET ALZHEIMER’S.>>WE HAVE SOME PARTICIPANTS ON
THE PHONE. I WILL CALL YOUR NAME, PLEASE
INTRODUCE YOURSELF. SUSAN COOLEY. ARE YOU ON THE PHONE? KATIE GRAND.>>GOOD MORNING THIS IS KATIE
BRAND. CAN YOU HEAR US?>>WE HEAR YOU.>>OKAY. GREAT. SO I KNOW SUSAN IS ON THE PHONE
AS WELL. WERE YOU ABLE TO HEAR HER
INTRODUCTION?>>NO, SHE MAY HAVE BEEN ON
MUTE. SO WE’LL GO BACK TO HER. WHY DON’T YOU INTRODUCE
YOURSELF, KATIE.>>MY NAME IS KATIE BRAND,
DIRECTOR OF CAREGIVER SUPPORT SERVICES FOR THE FRONTAL
TEMPORAL DISORDERS UNIT, MASSACHUSETTS GENERAL HOSPITAL,
I WILL BE INTRODUCING OUR FIRST PANEL THIS MORNING.>>EXCELLENT. I’M GOING TO TRY AGAIN, SUSAN.>>THIS IS SUSAN COOLEY, CAN YOU
HEAR ME NOW?>>YES WE CAN.>>GREAT. GOOD MORNING, I’M CHIEF OF
DEMENTIA INITIATIVES AND OFFICE OF GERIATRIC EXTENDED CARE
DEPARTMENT OF VETERANS AFFAIRS.>>THANK YOU.>>BRAD HIGH MAN?>>THIS IS BRAD HYMAN. GOOD MORNING, I’M SORRY I’M NOT
THERE WITH YOU. I’M HEAD OF THE ALZHEIMER’S
CENTER AT MASS GENERAL HOSPITAL IN BOSTON BUT RIGHT NOW I’M AT
THE ALZHEIMER’S MEETINGS IN ATLANTA.>>GREAT. THANK YOU. ALAN LEVY. ALLEN WAS STUCK IN A TRANSIT AND
INDICATED HE COULDN’T BE HERE BUT WOULD JOIN AT SOME POINT. WE ALSO HAVE OTHER PANELS ON THE
PHONE WE WILL BE INTRODUCING LATER. SO THANK YOU, EVERYONE. WELCOME TO OUR FIRST PANEL AND I
WAS JUST REFLECTING PARTICULARLY FOR THE MEMBERS OF THE ADVISORY
COUNCIL THAT WE REPRESENT SO MANY DIFFERENT HATS AND MORE SO
THAN EVER BEFORE WHICH SPEAKS TO THE ISSUE THAT WE HAVE AT HAND
IN TERMS OF MOVING FORWARD DEMENTIA RESEARCH AND CARE. SO IT WAS PRETTY ASTOUNDING TO
HEAR EVERYBODY’S INTRODUCTION. THANK YOU. WE’RE GOING TO FIRST DO A SERIES
OF UPDATES AND FOLLOW-UP, GOING TO BE EXTREMELY BRIEF. DEBRA CHERRY AND LONG TERM
SERVICES AND SUPPORTS COMMITTEE HAS A VERY ROBUST EXCITING DAY
SO WE WANT TO GIVE EVERYBODY THE TIME WE HAVE ALLOCATED. ROHINI.>>SO WE SURE. THESE ARE THE UPDATES THAT WE’RE
JUST GOING TO BRIEFLY TOUCH ON. LAURA AND I AND A LITTLE BIT
FROM ANGELA IN A BIT. SO I WILL START WITH THE
NATIONAL PLAN UPDATE. IT IS FINALLY DONE. YOU SHOULD HAVE ALL RECEIVED AN
EMAIL ON THE LIST SERVE WITH THE LINK TO THE NATIONAL UPDATES,
IT’S UP, IT’S OUT. THERE’S EVEN A VIDEO, VERY
EXCITING. SO THE FORMAT IS THE SAME AS IT
WAS IN EARLIER PLANS. WE WENT BACK TO ORGANIZING IT BY
GOALS, STRATEGIES AND ACTIONS AND ACTIONS ARE ALL MARKED AS
WHETHER THEY ARE COMPLETED, NEW, UPDATED, ET CETERA. BECAUSE OF THE TIMING WITH THE
RECOMMENDATIONS THOSE ARE NOT INCLUDED IN THIS YEAR’S UPDATE
AND LAURA AND I DISCUSSED THAT A LITTLE BIT, IT’S MORE THE WAY
TIMING OF THE FEDERAL GOVERNMENT WORKS, IT MAKES MORE SENSE THAT
THE RECOMMENDATIONS CAN INFLUENCE NEXT YEAR’S PLAN
BECAUSE NOW AS WE ARE ALL DOING RESEARCH PLANNING ACROSS THE
FEDERAL GOVERNMENT WE CAN LOOK AT THOSE RECOMMENDATIONS AS WE
DO THAT. SO TIMING WORKS BETTER AND
FUTURE MEETINGS THE FEDS CAN ADDRESS THOSE RECOMMENDATIONS AS
WE MOVE FORWARD. I ALSO WANTED TO TELL YOU ABOUT
A COOL NEW THING WE STARTED DOING ON THE NAPA WEBSITE P
BRENDAN WHO BRENDA WHO IS THE WIZARD BEHIND THE CURTAIN, SHE
STARTED DOING THIS REALLY AWESOME THING OF INDEXING THE
PLAN BY YEAR. SO YOU SHOULD BE ABLE TO CLICK
ON A STRATEGY AND SEE HOW THAT HAS CHANGED OVER TIME. WE ARE TRYING THAT OUT. THERE ARE KINKS, WE WELCOME
SUGGESTIONS OR IDEAS BUT IT WILL TRACK ACTIVITIES OVER TIME. THAT’S NATIONAL PLAN UPDATE. LAURA.>>I WANTED TO MENTION THAT
WE’RE BEGINNING TO SEE AT LEAST MANUSCRIPTS IN DEVELOPMENT AND
SOME IN PRESS THAT ARE DIRECT CONSEQUENCE OF THE FIRST
RESEARCH SUMMIT ON CARE AND SERVICES SO THAT’S VERY EXCITING
TO SEE. WE DO WANT TO ENCOURAGE ALL OF
PANELISTS WHO AND SPEAKERS OF THAT EVENT TO MOVE FORWARD WITH
THEIR PARTICULAR PAPERS FOR PRESENTATIONS. WE, MEANING KATIE ROHINI AND I,
WHEREVER SHE IS, WILL BE PUTTING FORWARD A PUBLICATION. THAT SUM RIDESES IN A DIFFERENT
WAY THE RECOMMENDATION SUM SUMMARIZES IN A WAY DIFFERENT
FORMAT WHAT’S AVAILABLE PUBLICLY SO THAT’S FORTHCOMING AND WE’LL
GIVE UPDATES ADS WE PROCEED. I THINK JOAN, YOUR GROUP IS ALSO
WORKING ON FROM THE STAKEHOLDER WORK GROUP FORCE IS
WORKING ON A PAPER AND I THINK GARY AND CYNTHIA, YOUR SUBGROUP
IS ALSO WORKING ON A PUBLICATION. THESE REALLY IMPORTANT SUMMATIONS. I ALSO WANTED TO MENTION THAT A
MEETING THAT OCCURRED BETWEEN THE ALZHEIMER’S ASSOCIATION AND
NATIONAL INSTITUTE ON AGING TO TAKE A LOOK AT THE RESEARCH
PRIORITIES AND TO FOR EACH GROUP TO UNDERSTAND THEIR AREAS
THEY WILL BE PURSUING AND I THOUGHT IT WAS A GREAT MEETING
AND WAY TO HELP THE ALZHEIMER’S ASSOCIATION DETERMINE BEST WAYS
OF LEVERAGING THEIR FUNDS IN TERMS OF CARE AND SERVICES. SO WE’RE BEGINNING TO SEE RIPPLE
AFFECTS IF YOU WILL, VERY IMPORTANT RIPPLE AFFECTS, IT’S
HARD TO CATALOG THESE IN ANY SYSTEMATIC WAY BUT WE’RE SEEING
THEM AND THAT’S VERY IMPORTANT. NEXT SLIDE.>>I’LL TAKE THE FIRST POINTS. ALSO WITH THE RELEASE OF THE
NATIONAL PLAN WE HAVE ALSO JUST POSTED THE RECOMMENDATIONS THE
FINAL RECOMMENDATIONS FROM THE ADVISORY COUNCIL. SO YOU SHOULD HAVE GOTTEN AN
EMAIL ABOUT THOSE TOO. I CAN ALSO JUST GIVE YOU A BRIEF
UPDATE ON THE DRIVER DIAGRAM, I AM GOING TO TRY TO COMPILE
EVERYONE’S DRIVER DIAGRAMS TOGETHER AS WE DISCUSSED SEVERAL
MEETINGS AGO. I DON’T REMEMBER HOW LONG BUT WE
HAD THREE DRIVER DIAGRAMS FROM EACH OF THE SUBCOMMITTEES AND I
WILL TRY TO RECONCILE THOSE IN THE COMING WEEK OR SO.>>SO AS YOU KNOW EACH MEETING
WE HAVE BEEN TOUCHING UPON HOW BEST THE NON-FEDERAL MEMBERS IN
PARTICULAR CAN HAVE IMPACT IN TERMS OF DISSEMINATION OF THE
RECOMMENDATIONS. SO WE DID HAVE A CALL AND ROB IS
HELPING CO-CHAIR THAT AND LEADING THIS EFFORT. WE HAVE A WORKING GROUP ALL
VOLUNTEER NON-FEDERAL MEMBERS, VERY COMMITTED TO FIGURING OUT
AT LOCAL STATE AND NATIONAL LEVEL HOW CAN HOW WE CAN
PACKAGE THE RECOMMENDATIONS IN A WAY THAT WE CAN HAVE IMPACT AT
EACH LEVEL. I WILL ASK ROB TO TALK A LITTLE
BIT ABOUT A TIME LINE AND FROM HIS VANTAGE POINT HOW HE SEES US
PROCEEDING.>>SURE, THANK YOU. AS WE DISCUSSED LAST TIME, ONCE
THE RECOMMENDATIONS THEY ARE FINAL, AND POSTED, SO A SIDE
POINT IS ANY GROUP OF COURSE CAN GO TO PUBLIC DOMAIN
RECOMMENDATIONS AND DESCRIBE THEM TO PEOPLE NEED TO TALK WITH
ABOUT THAT SO NOT INHIBITING THAT WORK TO HAPPEN AS
CIRCUMSTANCES DICTATE. BUT OUR PRIMARY TARGET THEN FOR
THIS IS NOT EITHER ADMINISTRATION MEMBERS BECAUSE
IT’S DESCRIBED THAT TAKES CARE OF ITSELF IN THE PROCESS ROHINI
BRIEFLY DESCRIBED. WHAT I KEEP IN MIND HERE IS
LARGELY CAPITOL HILL AND WE HAVE ALL NOTED THEY HAVE BEEN PRETTY
BUSY WITH NUMBER OF DIFFERENT ACTIVITIES AND LEAD UP TO AND
BEYOND AS THEY CLOSE OUT THE SESSION THOUGH WE COULD DO A
SERIES OF ACTIVITIES IN THE COMING MONTHS, UNTIL JANUARY, IT
WOULDN’T BE AN EFFECTIVE TIME TO DO SO S. SINCE WE HAVE IS THE
MOST IMPORTANT OPPORTUNITY WE HAVE AS GROUP FOR THESE
RECOMMENDATIONS TO USE THEM WELL, IS WITH THE NEW CONGRESS
SEATED IN JANUARY AND INTRODUCE THEM TO ISSUE OF ALZHEIMER’S AND
DEMENTIA AS WE SEE IT AND THE CONTEXT OF THE RECOMMENDATIONS, AND THAT’S WHAT WE WILL BE
WORKING TO DO WITH ALL OF YOU IS TO HAVE THAT EXECUTIVE SUMMARY
AND RECOMMENDATIONS BEHIND THEM PRESENT TO CONGRESS EARLY ON IN
NEW SESSION IN A WAY THAT INFORM THINKING ABOUT WHAT NEEDS TO BE
DONE.>>THANK YOU. THEN IN THE MEANTIME, EACH OF
THE CO-CHAIRS HAVE PROVIDED A BRIEF SUMMARY OF THEIR
PARTICULAR RECOMMENDATIONS, WE WILL USE THAT AS A DOCKERRING
DOCUMENT PRESENTED BACK TO THE DOCUMENT PRESENTED BACK TO
WORKING GROUP MAYBE AFTER THE FIRST OF THE YEAR. AND THEN HAVE SOME KIND OF PLAN
OF ACTION BASED ON EVERYBODY’S TIME AND WHAT PEOPLE CAN DO, SO
FORTH. THAT’S AN IMPORTANT OUTCOME OF
THIS YEAR’S RELEASE OF THE RECOMMENDATIONS. THANK YOU, EVERYBODY.>>WE DIDN’T PRACTICE. JUST A LITTLE BIT OUT OF THIS
RECOMMENDATIONS LAURA AND I WERE TALKING ONES GEARED TOWARDS
ADVISORY COUNCIL IN PARTICULAR. GEARED TOWARDS ADVISORY COUNCIL
IN PARTICULAR. ONE WAS PLANNING FOR THE NEXT
CARE SUMMIT. WHICH CAME OUT OF THE CLINICAL
CARE SUBCOMMITTEE’S RECOMMENDATIONS. AND TO THAT END ASBE AND
COLLEAGUES AT NIA ARE WORKING TOGETHER ON A PLAN FOR THAT, WE
WANT TO MAKE SURE WE BOTH TALK SCIENCE BUT ALSO MAINTAIN THAT
STAKEHOLDER GROUP ASPECT OF IT SO WE’RE WORKING OUT DETAILS WHO
WILL DO WHAT AS WE PLAN THAT AGENDA BUT WE HOPE TO HAVE
EVERYONE CONTINUE TO BE INVOLVED.>>SO I WANT TO EMPHASIZE WHAT
ROHINI STARTED TO SAY, CORRECT ME IF I’M WRONG BUT I’M NOT SURE
IF PREVIOUS RECOMMENDATIONS HAVE HAD RECOMMENDATIONS WITH THE
ADVISORY COUNCIL TO DO THINGS.>>THE FIRST ONE WE GOT WAS TO
HAVE A CARE SUMMIT. NOW WE HAVE ONE TO HAVE ANOTHER
ONE.>>THIS SAN INTERESTING WAY WE
CAN THINK THROUGH WHAT OUR ROLE AND RESPONSIBILITIES ARE. THESE ARE THE THREE
RECOMMENDATIONS FOR THIS SET OF RECOMMENDATIONS FOR US AS AN
ADVISORY COUNCIL. THE SECOND RECOMMENDATION WAS
FOR US TO IDENTIFY SOME KIND OF WORK GROUP OR AT LEAST AN
APPROACH WHERE WE CAN EVALUATE EXISTING I WOULD SAY QUALITY
INDICATOR WHICH GARY AND GROUP PRESENT LAST TIME, AND BEST
PRACTICES FOR COMPREHENSIVE DEMENTIA CARE PRESENTED TO THE
GROUP, THIS ADVISORY COUNCIL, AND TO HAVE DISCUSSION HOW TO
MOVE THIS FORWARD. SO YOU MAY NOT REMEMBER THIS BUT
AT THE TIME GARY AND HIS GROUP PRESENTED THERE WERE THREE
VOLUNTEERS, THAT WAS GARY, BRUCE AND MYSELF, AND SO IF ANYBODY
ELSE WOULD LIKE TO VOLUNTEER, SEND ME AN EMAIL AND WE WILL
ORGANIZE A TIME BEFORE THE END OF THE YEAR TO TALK ABOUT WHAT
DATA WE HAVE, A LOT OF DATA IN THE PRESENTATION YOU GAVE, HOW
WE WANT TO ORGANIZE IT AND HOW TO PROCEED AND WE’LL BRING IT
BACK TO ADVISORY COUNCIL IN JANUARY. THE THIRD RECOMMENDATION WAS TO
TACKLE THIS VERY CHALLENGING ISSUE OF NOMENCLATURE, TO THAT
END I’LL TURN IT TO ANGELA TO DISCUSS.>>GOOD MORNING, HERB. ONE OF THE THINGS I FORGOT TO
MENTION IN MY INTRODUCTION, I TOO LOST FAMILY MEMBERS TO
DEMENTIA, MY FATHER HAD LBD. YOU WILL REMEMBER BECAUSE WE
MADE RECOMMENDATIONS ON THIS ISSUE THE LAST TWO YEARS, THE
CHALLENGE AROUND THE NOMENCLATURE WE USE ON DEMENTIA
EVOLVED OVER TIME BASED ON EVOLUTION OF SCIENCE. HOWEVER, THAT ALSO CREATES AN
OVERLAPPING AND SOMETIMES CONFUSING BASIS OF TERMINOLOGY
WHEN PEOPLE ACROSS STAKEHOLDER GROUPS AND WITHIN STAKEHOLDER
GROUPS TRY TO COMMUNICATE SO ONE OF THE RECOMMENDATIONS WE HAVE
MADE IS IT’S TIME TO REVIEW THE TERMINOLOGY THAT WE USE TO SEE
WHAT OPPORTUNITIES THERE ARE TO IMPROVE THEM. SO TO THAT END I HAVE BEEN
WORKING WITH HANDFUL OF RESEARCHERS TO FORM A WORKING
GROUP AND YOU WILL SEE ON THE SLIDE HERE THIS IS CHAIRED BY
RON PETERSON MAYO CLINIC, FORMER CHAIR OF THIS COUNCIL. IT INCLUDES A NUMBER OF OTHER
RESEARCHERS ACROSS SPECTRUM OF DEMENTIA, WE HAVE A
REPRESENTATION TO MAKE SURE WE LOOK AT THIS THROUGH EVERY LENS. WE HAVE ONLY HAD TWO MEETINGS SO
FAR. BUT WE DEVELOPED PRELIMINARY
STRATEGY THAT WE WILL BEGIN PURSUING IN OUR NEXT MEETING,
TWO MORE CALLS BEFORE FIRST OF NOVEMBER. AT THE SAME TIME, RON AND I WERE
ASKED THE CHAIR A SESSION AT THE UPCOMING A DRD SUMMIT ON
DEMENTIA NOMENCLATURE AND WE’RE WORKING WITH PEOPLE AT NIH,
DEVELOPING A PANEL OF UP TO TEN SPEAKERS ON THE ISSUE. TO THAT END WHAT WE WOULD LIKE
TO DO IS, I WHETHER SHARE ONE OTHER THING, IN YOUR PACKET
TODAY WE HAVE PROVIDED A MORE IN DEPTH OVERVIEW ON THE ISSUE OF
DEMENTIA NOMENCLATURE TO GIVE THE OPPORTUNITY TO REFRESH IN
THEIR MIND HOW COMPLEX THIS ISSUE IS, AND SOME OF THE
CHALLENGES WE’RE FACING AND OPPORTUNITIES WE THINK WE CAN
MOVE FORWARD BY IMPROVING TERMINOLOGY USED BOTH WITHIN,
TALKING ABOUT BIOLOGY, WHEN WE TALK CLINICAL SYNDROMES AND
ACROSS EVEN CARE AND SERVICES REALM. SO WHAT WE ARE DOING TODAY, ONE
REASON WE BRING THIS TO YOU, WE FORM THIS WORKING GROUP BUT WE
DON’T HAVE ANY ENTITY, SAYING THIS IS AN IMPORTANT ISSUE AND
CHARGE YOU TO MOVE FORWARD WITH THIS. SO WHAT WE HAVE COME TO ASK THE
COUNCIL IS CONSIDER ASKING US TO TAKE THIS ISSUE ON BEHALF OF THE
COUNCIL AND MOVE IT FORWARD TO WHATEVER ULTIMATE CONCLUSION IS. TO DEVELOP STRATEGY, MAKE SURE
THERE’S BROAD INCLUSIVE PUBLIC COMMENT OPPORTUNITIES ALLOWED
AND THAT WE COME BACK WITH SOME FORMAL RECOMMENDATIONS. GO TO THE NEXT SLIDE. THIS IS WHAT WE ENVISION AS
POSSIBLE DELIVERABLES. THIS IS ARE NOT FORMALIZED BUT
ONE THING WE’RE GOING TO DO IN PREPARATION FOR THE SUMMIT IS TO
HAVE A HALF DAY VIRTUAL WORKSHOP WHEN WE BRING TOGETHER WIDER
GROUP OF STAKEHOLDERS TO SIT DOWN AND LOOK AT THIS ISSUE AND
BEGAN CREATING A PROCESS TO FORMALIZE RECOMMENDATIONS. THIS IS A MULTI-YEAR PROCESS, NOT SOMETHING WE’LL DO AND HAVE
DONE BY MARCH. WE WILL START THE PROCESS. AND HAVE SOME FRAMEWORK FOR
STRATEGY BY MARCH. SO THAT’S NEXT AND OVER TIME
BEGIN TO PRESENT FEEDBACK THAT WE RECEIVE ON FROM STAKEHOLDER
GROUPS, OPPORTUNITIES WE THINK WE COULD ADDRESS EARLIER VERSUS
SOME OF THE MORE CHALLENGING OPPORTUNITIES THAT WILL TAKE A
LONGER TIME TO WORK THROUGH. AND OVER TIME REFINE THESE AS WE
SOLICIT PUBLIC COMMENT AND ULTIMATELY TO PUBLISH FORMALIZED
RECOMMENDATION. THAT’S REQUEST OF THE COUNCIL
TODAY IS TO BASICALLY CHARGE US TO TAKE THIS ISSUE AND MOVE IT
FORWARD SO THAT WE ARE WORKING ON BEHALF OF ALL STAKEHOLDER
GROUPS, AND THIS IS NOT SOMETHING WE JUST DECIDED TO BE
DONE. THIS IS A RECOMMENDATION FROM
THE COUNCIL AND HAPPY TO MOVE IT FORWARD BUT FEEL THE COUNCIL
NEEDS TO BASICALLY MAKE THE FORMAL REQUEST OF US.>>THANK YOU, ANGELA. ANY QUESTIONS FOR ANGELA? DO YOU NEED A MOTION?>>YES. BEFORE MOTION I WAS GOING TO ASK
FOR QUESTIONS.>>I HAVE A QUESTION. THIS COULD BE PREMATURE. FEEL FREE TO SAY WE TALK LATER
BUT WONDERING IF YOUR GROUP LOOKED AT THE WORK THE
FRAMEWORKS INSTITUTE HAS BEEN DOING ON THE FRAMING OF AGING
AND THE FRAMING OF ELDER JUSTICE? I’M FULLY AWARE THAT NOT
EVERYONE LIVING WITH DEMENTIA IS AN OLDER ADULT BUT STIGMA
CHALLENGING ARE AROUND AGING AND ELDER JUSTICE ISSUES AND THERE’S
BEEN SO MUCH WORK GOING ON BY NATIONAL LEADERS HOW TO REFRAME
HOW WE TALK ABOUT AND CONCEIVE OF AGE AND THOSE IN THE SERVICE
PROVISION FIELD HAVE BEEN FOCUSING THE LANGUAGE WE USE
WITH THAT WORK, THAT EVIDENCE BASED WORK IN MIND. SO I THINK IF Y’ALL HAVEN’T BEEN
UNITING THOSE RESOURCES, THAT WOULD BE A GOOD THING TO PAY
ATTENTION TO AND UTILIZE APPROACHES. SO WANTED TO SEE IF THAT’S PART
OF THE CONVERSATION YET. IF NOT WE RECOMMEND THAT IT IS.>>THE ANSWER IS NO, IT’S NOT
PART OF THE CONVERSATION YET BUT I AM AWARE OF THAT WORK AND THAT
CAN INFORM WHAT WE DO SO I WOULD BE VERY INTERESTED IN GETTING
MORE INFORMATION ABOUT WHAT THE PROCESS LOOKED LIKE, WHERE YOUR
RECOMMENDATIONS CAME FROM AND HOW YOU’RE MOVING FORWARD WITH
THEM.>>I WANTED TO SECOND THAT
RECOMMENDATION BEFORE FORMAL MOTION. BECAUSE DOES ACTUALLY YOU JUST
SAID THAT, THE METHODOLOGY TOO THAT WAS USED BECAUSE IT
INVOLVED MULTIPLE STAKEHOLDERS. AND IT IS REALLY CHANGING THE
LANGUAGE AND APPROACH TO WHICH IS REALLY ALREADY I CAN SEE IN
GROUP WORK THAT BEING DONE AROUND THIS CHANGE STIGMA
LANGUAGE AMONG HEALTH PROVIDERS IN PARTICULAR. VERY GOOD METHODOLOGY. ANY OTHER QUESTIONS?>>COMBINATION QUESTION AND
COMMENT. QUESTION IS ABOUT THE EXTENT
WHICH PEOPLE LIVING WITH DEMENTIA WILL BE INVOLVED IN THE
PLANNING AND COMMENT WOULD BE TO CONSIDER INCLUDING SOMEONE OR
MORE THAN ONE PERSON IN THE WORKING GROUP WHO HAVE COGNITIVE
SYSTEM TIMES.>>WE SYMPTOMS.>>WE ARE IN 100% AGREEMENT AND
WILL BE DOING THAT FROM EARLY STAGE. ANY MORE QUESTIONS? SO MOTION ON THE TABLE IS TO
CHARGE ANGELA AND THE WORKING GROUP MEMBERS, YOU ARE NOT ALONE
IN THIS BUT DOING AN EXCELLENT JOB LEADING THE CHARGE. THANK YOU ANGELA. ALL IN FAVOR. ANY OPPOSITION? NO. YOU’RE CHARGED. I WANTED TO SAY I THINK I KNOW
YOU HAVE THOUGHT ABOUT THIS BUT THE OTHER PIECE OF THE PUZZLE OR
IF YOU WILL TO ADD TO THE SCIENCE IS MAYBE EACH SUMMIT
DOES ADDRESS THIS. SO THAT YOU HAVE WE HAD ONE IN
THE CARE UM SUMMIT, WE HAD ONE IN MARCH AND ONE AGAIN IN CARE
SUMMIT. SO THAT COULD BE THE STRING ALSO
TO HELP LOOK AT THESE TERMINOLOGY REFINE IT GET INPUT
FROM VARIOUS STAKEHOLDERS. THANK YOU VERY MUCH. WITHOUT FURTHER ADIEU I’M GOING
TO NOW TURN OVER THE DAY TO DEBRA CHERRY AND HER GROUP AND
SHE WILL BE INTRODUCING OUR SPEAKERS AND THE VARIOUS ISSUES
THAT WILL BE TACKLED TODAY.>>GOOD MORNING, EVERYONE. SO I WANTED TO SAY BY START BY
SAYING HOW WE SHOULD TAKE A MOMENT TO APPRECIATE AN
ESTABLISHMENT OF THIS COUNCIL. THIS YEAR WE HAVE SEEN A RECORD
HEIGHT TO FUNDING FOR ALZHEIMER’S RESEARCH. AND THAT IS REALLY THE SUCCESS
THERE IS IN PART DUE TO THE WORK AND THE RECOMMENDATIONS OF THIS
COUNCIL. YOU SHOULD FEEL GOOD ABOUT THAT
I BELIEVE. WHAT I ALSO THINK, EVEN IF WE
FIND AN EFFECTIVE TREATMENT FOR ALZHEIMER’S OR THE RELATED
DEMENTIAS WITHIN THE NEXT FEW YEARS, WE ARE STILL GOING TO
FACE DECADES WHERE INCREASING NUMBERS OF PEOPLE ARE GOING TO
BE LIVING WITH THESE CONDITIONS. AND FAMILIES WILL BE STRUGGLING
WITH TO CARE FOR THEM. THAT’S WHERE LONG TERM SERVICES
AND SUPPORTS COMES IN. WE ARE CHALLENGED AS A COUNCIL
TO IMPROVE THESE LONG TERM SERVICES AND TO INCREASE ACCESS
FOR OUR COUNTRY, FAMILIES AND OUR COUNTRY. THAT’S THE POINT OF THE
RECOMMENDATIONS FROM OUR LONG TERM SERVICES AND SUPPORTS
COMMITTEE WERE THIS YEAR. OUR SESSION LOOKS AT ADDRESSING
BARRIERS TO LONG TERM SERVICES AND SUPPORTS. OUR FIRST RECOMMENDATION NOTES
THAT WE RECOGNIZE THAT THE NUMBER AND THE DIVERSITY OF
PEOPLE LIVING WITH ALZHEIMER’S AND RELATED DEMENTIAS IS
GROWING. AND THAT THE BURR DON OF THIS
CARE FALLS ON FAMILY CAREGIVERS AND WHEN I SAY FAMILY CAREGIVERS
LOOKING FORWARD THINK FAMILIES THINK FRIENDS, THINK NEIGHBORS,
A BROADER DEFINITION OF THE CAREGIVER. WE NEED TO PUT IN PLACE GOOD
LONG TERM SERVICES AND SUPPORTS FOR THIS POPULATION. OUR RECOMMENDATION THIS YEAR WAS
IMPROVED A ACCESS TO LONG TERM SERVICES AND SUPPORTS INCLUDING
NURSING HOME CARE AND COMMUNITY BASED CARE AMONG PEOPLE AT RISK
FOR AND LIVING WITH ALZHEIMER’S DISEASE RELATED DEMENTIAS AND
FAMILY CAREGIVERS. SO WE WANT WHAT WE ARE HOPING
WILL HAPPEN THIS YEAR IS THAT FEDERAL PROGRAMS THAT PROVIDE
HOME AND COMMUNITY BASED SERVICES, WE HOPE THIS IS THE
BEGINNING AND KEEPS GOING FOR FUTURE YEARS, PROGRAMS OFFERED
BY NUMBER OF FEDERAL ORGANIZATIONS HERE BUT ALSO BY
OTHER PARTIES WHO ARE PARTICIPATING ON THE PHONES,
NATIONAL ORGANIZATIONS STATE COMMUNITY GROUPS, WILL
PRIORITIZE HOME AND COMMUNITY BASED SERVICES AND WILL LOOK TO
INCREASE AVAILABILITY FOR THE AMERICAN POPULATION BY
INCREASING THE AMOUNT WE CAN OFFER AND THE QUALITY OF WE’RE
OFFERING. SECONDLY, WE NOTE MANY PEOPLE
WHO GET A DIAGNOSIS OF ALZHEIMER’S OR RELATED DEMENTIA
GET THAT DIAGNOSIS AND GET NOTHING ELSE. IF YOU WERE DIAGNOSED WITH
DIABETES CHANCES WOULD BE THAT YOU WOULD BE REFERRED TO A
DIABETES HEALTH EDUCATOR. BUT IF YOU GET DIAGNOSED WITH
ALZHEIMER’S DISEASE THAT’S STILL NOT THE CASE. YOU DON’T GET ANYTHING ELSE. SO SO WE AS A COMMITTEE WANT
EVERYONE WHO GETS DIAGNOSED TO GET DISEASE EDUCATION, WE WANT
THEIR CAREGIVER IF APPROPRIATE IDENTIFIED. WE WANT BOTH PERSON WITH THE
DISEASE AND THEIR FAMILY, THEIR CAREGIVER TO GET INFORMATION TO GET CARE PLANNING TO GET
SUPPORT, GET A FULL ASSESSMENT SO THEY GET SUPPORTS THEY NEED
IN ORDER TO FACE THIS DEVASTATING DIAGNOSIS. AND THIS RECOMMENDATION BUILD
MORE EFFECTIVE INTEGRATION BETWEEN CLINICAL CARE AND HOME
AND COMMUNITY BASED SERVICES ACROSS THE DISEASE TRAJECTORY IS
AN ATTEMPT TO ADDRESS WHAT IS MISSING WHEN A PERSON GETS A
DIAGNOSIS. WITH ALZHEIMER’S DISEASE OR
RELATED DEMENTIA. THIRD, ONE OF THE REASONS PEOPLE
DON’T GET HIGH QUALITY LONG TERM SERVICES AND SUPPORTS IS THAT
MANY PEOPLE WHO ARE LIVING WITH ALZHEIMER’S OR RELATED DEMENTIA
HAVE BEHAVIORAL SYMPTOMS AND THOSE ARE DIFFICULT FOR PEOPLE
TO UNDERSTAND, THEY ARE DIFFICULT FOR PEOPLE WHO ARE
TRYING TO DELIVER LONG TERM SERVICES AND SUPPORTS TO MANAGE. RECOGNIZING THAT THIS IS AN
INTEGRAL PART OF THE DEMENTIA SYNDROME AND IT HAS IMPACT ON
QUALITY OF LIFE AND ON BURDEN AND HOW WELL PEOPLE CAN ACCESS
LONG TERM SERVICES AND SUPPORTS, WE RECOMMEND WE IDENTIFY AND
ADDRESS BEHAVIORAL SYMPTOMS ACROSS THE DISEASE TRAJECTORY
AND ALL SETTINGS. TODAY’S PANELS ARE RESPONDING
AND SPEAKING TO ONE PANEL TODAY TO EACH OF THESE RECOMMENDATIONS
AND WE’LL START WITH WHEN DEMENTIA IS DIFFERENT, MEANING
LONG TERM SERVICES AND SUPPORT NEEDS OF A HETEROGENEOUS
POPULATION AND I WANT TO THANK OUR WONDERFUL ORGANIZERS,
CYNTHIA HUMMEL AND KATIE BRANDT. I WON’T INTRODUCE PEARS BECAUSE
THEY WILL BE INTRODUCED SEPARATELY. SESSION 2, MANAGING ALZHEIMER’S DISEASE, THANK YOU TO LAURA
GITLIN AND MICHELLE VALUE LICK FOR VAHALIK. WE WILL HEAR FROM DR. HELEN
KALES AND ELLEN MCCREEDY ABOUT EVIDENCE BASED APPROACHES TO
MANAGING BEHAVIORS WE SEE IN DEMENTIA AND THIS AFTERNOON
WE’LL HAVE A SESSION ON INTEGRATING COMMUNITY CARE WITH
HOME AND COMMUNITY BASED CARE ORGANIZED BY BETSY KERTZ AND
MYSELF. I WOULD SAY A CHALLENGE TO YOU
FROM OUR COMMITTEE IS TO NOT BE A PASSIVE LISTENER BUT TO LISTEN
ACTIVELY AND TO BE THINKING, THOSE FROM FEDERAL ORGANIZATIONS
HOW CAN OUR ORGANIZATION BE RESPONSIVE TO THESE
RECOMMENDATIONS. FOR THOSE OF YOU WHO ARE
WATCHING OR LISTENING BY PHONE, HOW CAN OUR STATE, HOW CAN OUR
COMMUNITY ORGANIZATION BE RESPONSIVE, HOW CAN WE BE
RESPONSIVE TO THE INCREASINGLY HETEROGENEOUS POPULATION,
STRUGGLING WITH THIS CONDITION, HOW ARE WE RESPONSIVE TO THE
BEHAVIORAL SYMPTOMS THAT ARE SO MUCH PART OF THE CONDITIONS, AND
HOW CAN WE DO A BETTER JOB OF INTEGRATING WHAT WE DO AT HOME
AND IN THE COMMUNITY. AND SOMETIMES IN NURSING HOME
SETTINGS. WITH HEALTHCARE. WITH THAT I’LL TURN IT OVER THE
CYNTHIA AND KATIE, KATIE ON THE PHONE WILL START.>>I’M VERY EXCITED TOE START. OKAY. FOR THOSE IN THE AUDIENCE, THANK
YOU FOR BARING WITH ME ON THE PHONE, CAN EVERYONE HEAR ME?>>THIS IS ROHINI. LET ME KNOW WHEN YOU WOULD LIKE ME TO CHANGE THE SLIDE.>>THANK YOU. IF YOU’LL HAVE THE FIRST SLIDE
UP. GOOD MORNING, EVERYONE. WELCOME. WELCOME TO THIS SPECIAL PANEL
PRESENTATION LONG TERM SERVICES AND SUPPORTS SUBCOMMITTEE. WHEN DEMENTIA IS DIFFERENT,
MEETING THE NEEDS, MEETING THE LONG TERM SERVICES AND SUPPORTS
NEEDS OF A HETEROGENEOUS POPULATION. MY NAME IS KATIE BRANDT,
DIRECTOR OF CAREGIVER SUPPORT SERVICES AND PUBLIC RELATIONS
FOR THE MASSACHUSETTS GENERAL HOSPITAL DISORDERS UNIT AND
COUNCIL MEMBER REPRESENTING THE CAREGIVER. I’M PROUD TO INTRODUCE THE
MORNING PANEL ALONGSIDE MY PANEL PLANNING CO-CHAIR DR. CYNTHIA
HULING HUMMEL AND MEMBERS OF THE SUBCOMMITTEE. NEXT SLIDE. WE ARE GRATEFUL TO SHINE A LIGHT
ON UNIQUE DIFFERENCES BETWEEN ALZHEIMER’S AND RELATED DEMENTIA
COMMUNITY. WE’RE THANKFUL TO DR. LAUREN
GITLIN AND FELLOW COUNCIL LAURA GITLIN FOR FOCUS ON TOPIC
OF HETEROGENEITY THIS MORNING TO THE CHAIR OF LPSS SUBCOMMITTEE
DEBRA CHERRY FOR HER LEADERSHIP PROMOTING THIS PANEL AND TO
ROHINI FOR HER ORGANIZATIONING COORDINATION AND ORGANIZATION TO
BRING US ALL TOGETHER TODAY. NEXT SLIDE. WE HAVE OUTLINED FOUR GOALS FOR
OUR PANEL THIS MORNING. ALZHEIMER’S DISEASE AND RELATED
DEMENTIAS AFFECT INDIVIDUALS AT MANY STAGES OF LIFE. WITH CULTURAL LIFESTYLE AND
SOCIOECONOMIC BACKGROUNDS. THEY MAY BE LIVING WITH THEIR
FAMILIES, WITH PARTNERS, OR LIVING INDEPENDENTLY. THEIR SYMPTOMS MAY BEGIN WITH
MEMORY LOSS, SPEECH ISSUES OR CHANGES IN PERSONALITY. WHETHER IT IS A DIAGNOSIS OF
YOUNG ONSET ALZHEIMER’S DISEASE, PRIMARY PROGRESSIVE APHASIA OR
POSTERIOR CORTICAL ATROPHY, UNDERSTANDING WHAT MAKES EACH
ASPECT OF THE POPULATION UNIQUE WILL EMPOWER US WITH AN
UNDERSTANDING OF THE NEEDS OF OUR ENTIRE ALZHEIMER’S DISEASE
AND RELATED DEMENTIA COMMUNITY. THIS WILL PROMOTE INCLUSION AND
ACCESS FOR ALL PATIENTS AND FAMILIES. AND WE HOPE THAT THE AWARENESS
WE RAISE TODAY WILL INDUCE ACTION. AFTER LISTENING TO OUR PANEL
MEMBERS THIS MORNING WE ASK YOU EACH THINK ABOUT THE ROLE YOU
PLAY AS A PROGRAM LEADER, POLICY MAKER OR CHANGE AGENT AND HOW
YOU CAN INCORPORATE NEEDS OF OUR HETEROGENEOUS POPULATION MEMBERS
INTO YOUR WORK. NEXT SLIDE, ROHINI. WE WERE ASKED TO SPEAK ABOUT OUR
PASSION. WHY ARE WE HERE TODAY? I’M HERE BECAUSE MY HUSBAND MIKE
WAS DIAGNOSED WITH BEHAVIORAL VARIANT FRONTAL TEMPORAL
DEMENTIA AT AGE 29. MIKE AND I EXPERIENCED A
CHALLENGE OF FINDING APPROPRIATE PROGRAMS TO MEET HIS NEEDS AT
EVERY STAGE OF HIS DISEASE. MIKE PASSED AWAY ON APRIL 19,
2012, JUST OVER THREE YEARS FROM HIS DIAGNOSIS, 21 DAYS AFTER OUR
SON NOAH TURNED FOUR AND ONLY MONTHS BEFORE HE MIGHT HAVE
CELEBRATED A DECADE OF MARRIAGE. MIKE LEFT THE ABILITY TO SPEAK
WALK AND SWALLOW BUT HE NEVER LOST HIS VOICE. AS MIKE’S WIFE I WAS HIS BIGGEST
ADVOCATE AND I AM DETERMINED THAT FTD WILL NOT HAVE THE FINAL
WORD IN MIKE’S LIFE OR IN OUR FAMILY STORY. NEXT SLIDE PLEASE. AND BRINGS ME TO MY PASSION
TODAY. THE COMMUNITY OF PATIENTS AND
CAREGIVERS THAT I HAVE THE PRIVILEGE OF WORKING WITH EVERY
DAY THROUGH MY ROLE IN THE MGH FRONTAL TEMPORAL DISORDERS UNIT. WE DON’T YET HAVE A CURE FOR
THESE DEVASTATING DISEASES BUT WE DO HAVE A CURE FOR THE
ISOLATION AND LONELINESS THAT MAY COME WITH A DIAGNOSIS. BY
BRINGING TOGETHER EVERYONE IN OUR POPULATION, WE WILL BETTER
UNDERSTAND THE NEEDS OF ALL. NEXT SLIDE PLEASE. IT IS NOW MY JOY TO INTRODUCE
YOU TO OUR FOUR PANEL MEMBERS. DIANENA BLACKWELDER LIVES IN
WASHINGTON D.C., SEVERAL YEARS AGO AFTER WORKING FOR DECADES IN
THE FIELDS OF ELECTRICAL AND COMPUTER ENGINEERING, DIANE
BEGAN TO NOTICE CHANGES IN HER THINKING AND MEMORY. THESE CHANGES RANGED FROM HER
ABILITY TO READ AND PRACTICE ETHICAL JARGON AT WORK TO HER
MEMORY OF WHAT SHE DISCUSSED WITH HER FRIENDS DURING WEEKLY
HIKES. WHEN DIANA APPROACHED HER DOCTOR
WITH THESE CONCERNS IT PROMPTED A NEARLY TWO YEAR PROCESS OF
ATTEMPTING TO IDENTIFY THE ISSUE. MARKED WITH MISDIAGNOSES AND
INEFFECTIVE TREATMENT. A GERIATRICIAN DIAGNOSED HER
WITH YOUNG ONSET ALZHEIMER’S AT AGE 56. SHE NOW FOCUSES ON MAXIMIZING
HER ABILITY AND FINDING TECHNOLOGY AND TOOLS THAT HELP
HER CONTINUE TO LIVE INDEPENDENTLY. MARY HOGAN IS A LONG TIME
ATTENDEE OF THE NAPA ADVISORY COUNCIL MEETING AND SINCE 2011
HAS ADVOCATEDDED FOR THE INCLUSION OF INDIVIDUALS WITH
DOWN’S SYNDROME INTO THE NATIONAL PLAN TO ADDRESS
ALZHEIMER’S DISEASE. SHE’S A MEMBER OF THE STEERING
COMMITTEE OF THE NATIONAL TASK GROUP ON INTELLECTUAL
DISABILITIES AND DEMENTIA PRACTICES AND JOINS US TO SHARE
INSIGHT INTO THE CHALLENGE FACED BY INDIVIDUALS WITH DOWN’S
SYNDROME, THEIR FAMILIES AND OTHER CAREGIVERS. JOHN COLLINGE IS MARRIED WHO
HAS FRONTAL TEMPORAL DEGENERATION FORM OF DEMENTIA. HE WAS HER CAREGIVER PRIOR TO
LONG TERM CARE IN JULY OF 2015. THEY HAVE BEEN MARRIED 37 YEARS
AND HAVE A SON SAM. JOHN IS HERE TODAY TO SHARE HIS
PERSONAL EXPERIENCE AS A CAREGIVER. VERONICA COOL BORN AND RAISED IN
THE DOMINICAN REPUBLIC, WAS EDUCATED IN THE UNITED STATES,
AFTER EARNING A MASTERS IN FINANCE LAUNCHED CONSULTING FIRM
TO ADDRESS THE TREMENDOUS GAPS BETWEEN MAINSTREAM AND HISPANIC
IMMUNITY. SHE AND HER TEAM FOCUSED ON
BRIDGING CULTURES THROUGH STRATEGY, TRAINING AND
PROFESSIONAL DEVELOPMENT, LANGUAGE SERVICES, SPECIALIZING
AND SERVING AS A SPANISH VOICE TO MANY ORGANIZATIONS INCLUDING
ALZHEIMER’S ASSOCIATION OF GREATER NOT ONLY IS VERONICA
AN AWARD WINNING ENTREPRENEUR WITH INTERNATIONAL EXPERTISE
SHE’S ALSO PERSONALLY TOUCHED BY RAVAGES OF ALZHEIMER’S AS SHE
EXPERIENCED HER FATHER’S DECLINING HEALTH OVER THE LAST
DECADE. AND SADLY, HIS ULTIMATE PASSING
IN AUGUST OF THIS YEAR. SHE IS HERE TODAY SHARING HER
PERSPECTIVE AS AN END USER CAREGIVER BUT ALSO AS SOMEONE
THAT HAS FUND RAISED FOR ALZHEIMER’S. SHE WAS A DANCING STAR AND SHE
KNOWS WHAT UNDERSERVED POPULATIONS NEED TO BE ENGAGE. WE ARE AWARE THAT THERE ARE
PEOPLE MISSING FROM THE TABLE. AND WE WANT YOU TO KNOW THAT WE
WISH WE HAD AN ENTIRE DAY, MAYBE EVEN A WEEK TO TALK ABOUT OUR
HETEROGENEOUS POPULATION. BUT WE KNOW THAT THIS PANEL WILL
BE A LOVELY REPRESENTATION OF WHAT WE NEED TO DO TO THINK
ABOUT THE DIFFERENCES AND UNIQUE NEEDS AND VARIED NEEDS IN OUR
POPULATION. NEXT SLIDE LASTLY, I HAD THE
PRIVILEGE OF INTRODUCING MY PANEL CO-CHAIR AND YOUR
MODERATOR. THE REVEREND DR. CYNTHIA HULING
HUMMEL JOINED OUR COUNSEL IN THE FALL OF 2017. SHE SERVES ON ALL THEE COUNCIL
SUBCOMMITTEES ADVOCATING FOR THOSE WHO ARE LIVING WITH A
DEMENTIA DIAGNOSIS. IN 2015 SHE SERVED AS THE
NATIONAL EARLY STAGE ADVISOR FOR THE ALZHEIMER’S ASSOCIATION. AND FACILITATES MONTHLY EARLY
STAGE SUPPORT GROUP WITH EIGHT MEN. SHE IS PASSIONATE ABOUT RESEARCH
AND BEGINNING HER NINTH YEAR. SHE’S WRITER AND CONTRIBUTED
SEVERAL CHAPTERS TO THE STEERING COMMITTEE PUBLISHED BOOK
DEMENTIA FRIENDLY WORSHIP, A MULTI-PHASE HANDBOOK FOR CHAPLAIN AND FAITH COMMUNITIES. I’M SO HAPPY TO TURN IT TO YOU
THIS MORNING.>>THANK YOU, KATIE. WISH YOU WERE HERE WITH US BUT
WE KNOW YOU’RE HERE WITH US IN SPIRIT. I STARTED EXPERIENCING MEMORY
PROBLEMS BACK IN 2003 WHEN I WAS JUST 49 YEARS OLD, IT WASN’T
UNTIL THE SPRING OF 2011 WHEN I RECEIVEDDED THE DIAGNOSIS OF AM
DOMESTIC MILD COGNITIVE IMPAIRMENT LIKELY DUE TO
ALZHEIMER’S. IT WAS 8 YEARS. 8 YEARS. A LONG TIME TO BE WONDERING
WHAT’S GOING ON. IN FAIRNESS TO MY DOCTORS WHO
EXAMINE ME WHO RAN TESTS, IT WASN’T AS IF THEY WERE WEREN’T
TRYING TO FIGURE OUT WHAT WAS GOING ON WITH MY MEMORY, THEY
TRULY WERE. BUT I BELIEVE THAT ONE OF THE
OBSTACLES TO MY GETTING A TIMELY DIAGNOSIS WAS I DIDN’T FIT THE
STEREOTYPE OF A PERSON IN THE EARLY STAGES OF ALZHEIMER’S. AND BY THE WAY, THAT DIAGNOSIS
CAME IN IN 2016. I HAVE BEEN TOLD I LOOK TOO
GOOD. THANK YOU VERY MUCH. THAT I’M FUNCTIONING TOO WELL. AGAIN, THANK YOU.
AND I’M NOT SICK ENOUGH TO HAVE ALZHEIMER’S. AND THAT I’M JUST LOOKING FOR
ATTENTION. REALLY? ONE REASON I OFFERED TO MODERATE
THIS PANEL THIS MORNING WAS TO HELP RAISE AWARENESS OF THE
CHALLENGES THAT PEOPLE FACE WHEN DEMENTIA IS DIFFERENT. IN JUST A FEW MOMENTS YOU WILL
HEAR FROM OUR WONDERFUL PANEL AS THEY SPEAK ABOUT THE CHALLENGES
THAT THEY HAVE FACED. SECONDLY, I ALSO HOPE TO RAISE
AWARENESS THAT MANY OF US WHO ARE LIVING WITH MEMORY DISORDER
ARE STILL CAPABLE. IT’S TRUE, WE MAY NEED
ASSISTANCE WITH DIFFERENT TASKS AT TIMES BUT WE WANT TO HELP. AND WE WANT TO PARTICIPATE IN
DISCUSSIONS SUCH AS THIS. WE WANT TO ADVOCATE FOR WHAT WE
NEED AND TO EDUCATE THE MEDICAL COMMUNITY. AND OTHERS ABOUT WHAT IT’S LIKE
TO LIVE WITH A DEMENTIA DIAGNOSIS. AND SO I THANK YOU, NOT JUST FOR
MYSELF BUT ON BEHALF OF MY BROTHERS AND SISTERS WHO LIVING
WITH A DEMENTIA DIAGNOSIS AND FOR THIS WONDERFUL OPPORTUNITY
TO MODERATE THIS PANEL AND FOR A SEAT AT THE TABLE. ON A PERSONAL NOTE, FORWARD THE
SLIDE. MY MOTHER DIED OF ALZHEIMER’S,
HER ONLY BROTHER DID AS WELL. THEIR MOTHER, MY MATERNAL
GRANDMOTHER HAD SENILITY OR HARDENING OF THE ARTERIES. I CARRIED TWO COPIES OF THE APOE
4 GENE, IT IS WHAT IT IS. KATIE AND I ASKED TO SHOW
EVERYBODY THE SLIDE AND TALK ABOUT WHY THEY’RE PASSIONATE
ABOUT THE TOPIC OF THIS PANEL DISCUSSION. WHAT FUELS ME IN MY FIGHT
AGAINST ALZHEIMER’S? MY FAMILY AND FRIENDS FOR SURE. BUT I’M ALSO FUELED BY MY FAITH,
BY HOPE AND BY LOVE, THESE THREE. THESE ARE NOT PASSIVE IDEAS. THEY NUDGE ME, THEY PUSH ME THEY
COMPEL ME TO TAKE ACTION. IT’S NOT ENOUGH FOR ME TO SIT
BACK AND WAIT PATIENTLY AND TO PRAY FOR A CURE. BUT TO HELP WORK TOWARD A CURE. AND TO DO WHAT I CAN FOR ADS
LONG AS I CAN, TO MAKE A DIFFERENCE. I BELIEVE THAT I’M CALLED TO
PARTICIPATE, TO EDUCATE AND TO ADVOCATE ON BEHALF OF THOSE
LIVING WITH A DEMENTIA DIAGNOSIS. AND I’M HONORED TO BE HERE. WE’RE GOING TO HEAR FROM OUR
PANELIST NOW SO I WOULD LIKE TO TURN THE MICROPHONE OVER TO OUR
FIRST PANELIST, DIANA BLACKWELDER.>>GOOD MORNING, AGAIN,
EVERYONE. THANK YOU. GOOD MORNING, AGAIN, EVERYONE. CAN YOU HEAR ME NOW? GOOD. HI.
AND THANK YOU SO MUCH FOR THIS OPPORTUNITY TO TELL YOU LITTLE
BIT ABOUT MY EXPERIENCE LIVING WITH YOUNGER ONSET ALZHEIMER’S. BEFORE ALZHEIMER’S I WAS A
SUCCESSFUL IT SOFTWARE SYSTEMS INTEGRATION AND SECURITY
ENGINEER AND LEAN SIX SIGMA BLACK BELT WITH ADVANCED DEGREES
IN ELECTRICAL ENGINEERING COMPUTER SCIENCE AND SYSTEMS
ENGINEERING. I WAS KNOWN AS THE CLOSER AT
WORK. FREQUENTLY ASSIGNED TO THOSE
PROJECTS THAT WERE FAILING OR HAD FAILED AND TURNING THEM
AROUND ABLE TO CUT THROUGH THE CHAFF TO DRIVE SUCCESS IN A
HIGHLY DYNAMIC AND COMPLICATED TECHNICAL FIELD. I’M CURRENTLY 57 YEARS OLD. SINGLE, I HAVE NO CHILDREN AND I
HAVE LIVE ALONE WITH MY TWO PET CATS BUT I’M NOT A CRAZY CAT
LADY. HOWEVER, I AM FERVENTLY INDEPENDENT, WELL EDUCATED AND
INTELLIGENT AND I LIKE TO THANK UNFLAPPABLE. I WANT TO CONTINUE LIVE AS FULL
A LIFE AS POSSIBLE, I WANT TO BE A CONTRIBUTING MEMBER OF SOCIETY
TO CONTINUE TO HAVE SHARED RICH EXPERIENCES AND MAKE MEMORY FOR
ADS LONG AS I’M ABLE. I THINK THAT IS WHAT MOST OF US
WANT, WHETHER OR NOT WE HAVE ALZHEIMER’S DISEASE. IT HAS BEEN A YEAR SINCE MY
DIAGNOSIS. BUT I HAVE BEEN LIVING WITH THE
SYMPTOMS OF ALZHEIMER’S FOR SEVERAL YEARS. I REALLY EMPATHIZE WITH CYNTHIA. THERE WAS AT LEAST A YEAR OF MY
SYMPTOMS PROGRESSIVELY WORSENING WHILE I DEBATED WHETHER IT WAS
NECESSARY TO SEEK MEDICAL HELP. I QUESTIONED MYSELF. THEN ONCE I DID APPROACH MY
DOCTOR WITH MY CONCERNS, THE DIAGNOSTIC PROCESS TOOK OVER TWO
MORE YEARS. I EXPERIENCE VERY LITTLE SENSE
OF URGENCY. MY PRIMARY CARE DOCTOR WHILE
ATTENTIVE AND SYMPATHETIC DISMISSED DEMENTIA AS A
POSSIBILITY. I ENDURED MISDIAGNOSIS INCLUDING
ADHD, DESPITE MY BEST EFFORTS, EACH SPECIALIST APPOINTMENT AND
EACH DIAGNOSTIC TEST REQUIRED MONTHS OF WAITING. TWO YEARS OF OFFICE VISITS TEST
MISDIAGNOSIS AND FAILED TREATMENTS, AT TIMES I WANTED TO
STICK MY HEAD IN THE SAND AND WISH IT ALL AWAY. HOW MANY OTHERS DO JUST THAT? THE GERIATRICIAN WHO DIAGNOSED
ME WAS COMPASSIONATE AND TOOK ALMOST AN HOUR TO SORT THROUGH
THE DIAGNOSIS AND WROTE A SHORT LIST OF NEXT STEPS. HOWEVER I WAS SENT HOME ALONE WITH THIS LIST IN HAND. I WAS EXPECTED TO DO IT ALL ON
MY OWN. WITH AN ALZHEIMER’S DIAGNOSIS AT
56 WHILE UNABLE TO WORK AND WITH PETS TOTALLY DEPENDENT ON ME. NO ONE FOLLOWED UP WITH ME. I HAD A NOTABLE ENCOUNTER WITH
THE MEDICAL ESTABLISHMENT SHORTLY AFTER MY DIAGNOSIS
DURING EMERGENCY FIVE DAY HOSPITAL STAY FOR UNPLANNED
SURGERY. DURING MY STAY THE LEAD RESIDENT
FOR MY CASE INFORMED ME THAT I COULDN’T POSSIBLY HAVE
ALZHEIMER’S AND HE PUT IT, SINCE I WAS ABLE TO REMEMBER HAVING
SEEN HIM THE DAY BEFORE, AND COULD SPEAK COHERENTLY EACH DAY,
THIS DIAGNOSIS COULDN’T BE ACCURATE. HE DID NOT HAVE ACCESS TO MY
PRIOR MEMORY RELATED TEST, HE HAD NOT SPOKEN WITH ANY OF THOSE
SPECIALISTS AND HAD NOT PERFORMED ANY COGNITIVE
NEUROLOGICAL TESTS ON ME. HOWEVER, HE WAS ABSOLUTELY
CERTAIN I DID NOT HAVE ALZHEIMER’S. THERE WERE FURTHER COMELYCATIONS
IN THE HOSPITAL SETTING. THERE WERE NO SPECIAL PROCEDURES
FOR DEMENTIA PATIENTS, AND STAFF WAS UNABLE TO MINIMIZE
UNNECESSARY NOISE, COMMOTION AND OTHER DISTURBANCES. THAT CAN IMPACT SLEEP AND A
PERSON WITH ALZHEIMER’S ABILITY TO COMMUNICATE. DISTRACTIONSES INCLUDING FILLING
A ROOM TO CAPACITY WITH RESIDENTS DURING ROUNDS,
SURROUNDED THE FLEETING PATIENT DOCTOR INTERACTION. I HAD NO ASSISTANCE MAKING SURE
PROVIDERS NEW ABOUT ANY DIAGNOSIS, IT WAS UP TO ME TO
COMMUNICATE CLEARLY WITH EVERYBODY INCLUDING THE SURGICAL
ANESTHESIOLOGIST THAT I HAD ALZHEIMER’S. DESPITE MY CONCERNS ABOUT
PERFORMING SELF-CARE AFTER SURGERY WHILE LIVING ALONE, I
WAS SENT HOME. I HAD TO SECURE AN UBER TO TAKE
MY OFFICE AND ANOTHER TO TAKE MYSELF HOME. LESS THAN 36 HOURS LATER MY
PRIMARY CARE PHYSICIAN HAD ME TAKEN BY AMBULANCE BACK TO THE
EMERGENCY ROOM WHERE I WAS READMITTED FOR ACUTE KIDNEY
INJURY. FINDING SUPPORT ALSO POSTS
CHALLENGES, AS IS TYPICAL FOR ME I RESEARCH ADS MUCH AS I COULD
ABOUT THE DISEASE TO EDUCATE MYSELF ON WHAT WAS AHEAD SO I
COULD PREPARE. I BEGAN LOOKING FOR ANY KIND OF
SPECIALIST COUNSELOR OR SUPPORT GROUP TO HELP ME NAVIGATE THIS
NEW LEARNING EXPERIENCE. AND ALSO TO HELP ME DEAL WITH
THE EMOTIONAL ROLLER COASTER THAT I WAS ON. HOW SHOULD I PLAN FOR MY MY
FUTURE? WHAT WOULD HAPPEN TO MY PETS IF
I EXPERIENCE MORE SYMPTOM? I HAD SO MANY QUESTIONS AND
WORRIES. AND OUTRIGHT FIERCE. I THOUGHT AT LEAST I’M LUCKY, I
LIVE IN A LARGE METROPOLITAN CITY FULL OF RESOURCES. HOWEVER, MANY OF THE POTENTIAL
SUPPORT GROUPS AND COUNSELING SERVICES I WAS DIRECTED TO HAD A
MINIMUM AGE OF 65 YEARS AND OLDER. THE ONE MEMORY CAFE THAT CAN
ACCOMMODATE SOMEONE LIKE ME IN THE EARLY STAGE WHO DOESN’T HAVE
A FULL TIME CAREGIVER, IS A FOUR HOUR ROUND TRIP AWAY IN
MARYLAND. I DID FIND A PRIVATE SUPPORT
GROUP FOR THOSE WITH EARLY STAGE MEMORY LOSS IN D.C. BUT THEY
WERE FULL. WHEN THEY OPENED A SECOND GROUP,
IT WAS ONCE AGAIN GEARED TOWARD CAREGIVERS. THERE WAS A DAY LONG ALZHEIMER’S
SEMINAR IN D.C. RESEASONLY, IT WOULD PROVIDE ACCESS TO EXPERTS
IN THE FIELD. UNFORTUNATELY AGAIN IT WAS FOR
CAREGIVERS ONLY. LET ME SEE IF I CAN GET THE NEXT
SLIDE. THERE WE GO. I CAN STILL DO TECHNOLOGY. THESE EXPERIENCES LED ME TO
WONDER WHAT ABOUT ME. THE PERSON WITH THE DISEASE. RIGHT NOW I AM MY OWN CAREGIVER. HELPING ME FACILITATE MY
INDEPENDENCE SHOULD BE A PRIORITY. SHOULD BE A PRIORITY FOR
EVERYONE BECAUSE THAT HELPS ALLEVIATE THE DEMANDS ON THE
CAREGIVERS. THE MEDICAL ESTABLISHMENT AND
COMMUNITY SERVICE PROVIDERS NEED TO HAVE GREATER AWARENESS OF
EARLY STAGE AND YOUNGER ONSET ALZHEIMER’S. I BELIEVE THIS AWARENESS WOULD
LEAD TO IMPLEMENTATION OF STANDARDIZED PROCEDURES IN
MEDICAL SETTINGS THAT WOULD ADDRESS CARING FOR PATIENTS WITH
DEMENTIA ACROSS DIFFERENT DISEASE STAGES AND LEVELS OF
INDEPENDENCE. I BELIEVE IT WOULD HELP
COMMUNITY SERVICE PROVIDERS OFFER MORE INCLUSIVE AND
TARGETED SUPPORT OPTIONS FOR PEOPLE JUST LIKE ME. MY HOPE IS TO BE TREATED NOT
JUST AS SOMEONE DYING WITH ALZHEIMER’S DISEASE, BUT RATHER
AS DIANA BLACKWELDER, A PERSON LIVING WITH ALZHEIMER’S. DISEASE. THANK YOU SO MUCH TO YOUR TIME
TODAY. I REALLY DO APPRECIATE IT AND
GOOD LUCK TO Y’ALL. [APPLAUSE]>>THANK YOU SO MUCH DIANA FOR
YOUR INSPIRATIONAL WORDS AND SHARING YOUR STORY. WE’RE GOING TO HOLD ALL
QUESTIONS TO THE END BUT WE’LL THEN HEAR FROM MARY HOGAN, MARY
IS OUR NEXT ADVOCATE TO SPEAK.>>HAVING TO DO TWO THINGS AT
ONCE IS OFTEN MORE THAN I CAN COPE WITH. THANK YOU FOR THE OPPORTUNITY TO
BE HERE TODAY. I’M BEGINNING MY PRESENTATION
WITH SLIDES THAT INCLUDE PHOTOS OF MANY INDIVIDUALS THAT I HAVE
MET IN THE PAST SEVEN YEARS. WHO HAVE ON THIS SLIDE ACTUALLY
PASSED AWAY AS A RESULT OF COMPLICATIONS OF ALZHEIMER’S
DISEASE. THE GENTLEMEN WITH THE
SWEATSHIRT ON IS RICHARD, I SPOKE REPEATEDLY FOR THREE OR
FOUR YEARS TO THE PREVIOUS COUNCIL, HE WAS 51 YEARS OLD
WHEN HE DIED. I THINK WHAT IS IMPORTANT FOR
YOU TO THINK ABOUT WHEN YOU LOOK AT THE SLIDE IS THE CONTEXT
WHICH OF TIME WHICH THESE FOLKS WERE BORN, MANY OF THESE
PEOPLE WERE BORN IN THE ’50s AND ’60s. A TIME AT WHICH MOST PEOPLE WERE
ENCOURAGED TO PLACE FAMILY MEMBER IN AN INSTITUTIONAL
SETTING. SO THESE ARE REPRESENTATION
THIS IS A REPRESENTATION OF PEOPLE WHOSE FAMILIES REFUSE TO
DO THAT, WHO WERE DEMANDING THEIR FAMILY MEMBERS BE INCLUDED
IN THEIR COMMUNITIES AND IN THEIR SCHOOLS. THESE WERE THE PEOPLE THAT LED
THE CHARGE TO MAKE CHANGE THE TERMS OF EDUCATION TODAY. WE’RE HERE HAVING GONE FULL
CYCLE, WE’RE AT THE END OF LIFE AND WE ARE HAVING TO FACE THE
SAME CHALLENGES OF BEING INCLUDED IN CARE FOR END OF LIFE
ISSUES RELATED TO ALZHEIMER’S AND OTHER DEMENTIAS. SO IF YOU CAN PUT THAT IN
CONTEXT IN TERMS OF WHERE THESE FOLKS BEGAN, FIGHTING A FIGHT. THEIR FAMILY FIGHTING THE FIGHT
AND HERE WE ARE FAST FORWARD 50 YEARS OR 60 YEARS LATER HAVING
TO FIGHT. A NEW FIGHT AROUND INCLUSION AND
CARE. MOST PEOPLE ON THIS SLIDE ARE 50
YEARS OLD, WITH THE EXCEPTION OF ONE OR TWO PEOPLE WHO ARE IN
THEIR EARLY ’60s WHEN THEY PASSED AWAY. SO AS I SPEAK IF YOU CAN LOOK AT
THAT SLIDE, I THINK IT WILL MAKE THESE WHAT I SAY A BIT MORE
MEANINGFUL TO YOU. I WILL SPEAK SPECIFICALLY MOST
SPECIFICALLY ABOUT DOWN’S SYNDROME BUT I WANT YOU THE KEEP
IN MIND PEOPLE WITH OTHER INTELLECTUAL DISABILITIES ARE
LIVING LONGER LIVES AS WELL. AND THEY AT THIS POINT THERE’S
LITTLE INFORMATION THEY SUGGEST EXPERIENCE ALZHEIMER’S DISEASE
AT A GREATER RATE THAN THE GENERAL POPULATION. SO BECAUSE THEY SEEM TO BE MORE
CONSISTENT WITH THE GENERAL POPULATION, I WILL FOCUS ON
DOWN’S SYNDROME. I THINK LITTLE IS KNOWN ABOUT
PEOPLE ON THE AUTISM SPECTRUM DISORDERS IN TERMS OF WHAT WILL
HAPPEN TO THAT LARGE COHORT OF PEOPLE AS THEY ADVANCE IN AGE. QUICKLY FOR BACKGROUND, I SAID
I WOULD TIME MYSELF, PEOPLE WITH DOWN’S SYNDROME HAS THE MOST
COMMON CHROMOSOMAL CONDITION THAT RESULTS IN AN INTELLECTUAL
DISABILITY AND NOW LIVING TO AGE 60 AND SOME LIVING TO BE 70. YOU WILL SEE A PERSON WELL INTO
THEIR 70s ON THE NEXT SLIDE. THEIR AT INCREASE RISK OF
DEVELOPING ALZHEIMER’S DISEASE AT MUCH EARLIER AGE THAN THE
GENERAL POPULATION DUE TO CHROMOSOME 21 WITH THE EXTRA
COPY. AND THAT’S THE CHROMOSOME THAT
CARRIES THE APP GENE. THERE’S INTERESTING DIFFERENCES
ON THE NIH WEBSITE, THERE’S ONE WEBSITE THAT SAYS 50% MORE THAN
50% OF PEOPLE WILL DEVELOP ALZHEIMER’S DISEASE AND IN THE
NEW INCLUDE INITIATIVE IT REFERS TO 75% OF PEOPLE WILL DEVELOP
ALZHEIMER’S DISEASE. BUT NONETHELESS WE ARE A
COMMUNITY OF PEOPLE THAT ARE AT RISK FOR MAJOR CHANGES AT MUCH
EARLIER POINT IN OUR LIVES. 40s, 50s AND I THINK THAT IS
A DRAMATIC CHALLENGE WE FACE. MOST LIVE WITH FAMILIES, SOME
LIVE IN GROUP HOMES AND SOME INDEPENDENTLY. BOTTOM LINE, WHEREVER PEOPLE
LIVE, THE FAMILY MEMBERS LIVE IN DREAD OF THIS VERY THIS
DIAGNOSIS THAT WE ALL WORRY ABOUT FACING. PEOPLE DOWN’S SYNDROME AND OTHER
INTELLECTUAL DISABILITIES HAVE COMPLEX HEALTH ISSUES AND HAVE
POOR HEALTH OUTCOMINGS, AND THEY HAVE DOCUMENTED HISTORY OF LONG
HEALTHCARE DISPARITIES. WITH THAT IN MIND WITH AN
OVERLAY OF ALZHEIMER’S DISEASE, HEALTHCARE DISPARITIES BECOME
MORE EVIDENT ESPECIALLY WITH A DIAGNOSIS AND PROGRESSION OF THE
DISEASE. OUR FAMILY MEMBERS AREN’T AS
ABLE TO SELF-REPORT COGNITIVE CHANGES WE OFTEN WONDER IF THERE
WAS A MISSED OPPORTUNITY WHEN MY BROTHER SAID I WOULD BE AN OLD
MAN. WE ASSUME HE MEANT ONE THING AND
NOT SURE WE’LL NEVER BE SURE WE ACTUALLY KNOW WHETHER THAT WAS
HIS QUEUE TO US THAT HE WAS EXPERIENCING COGNITIVE CHANGES. WE’RE ALL DEPENDENT ON THOSE
AROUND THE PERSON TO NOTE CHANGES, SUBTLE CHANGES AND NOT
SO SUBTLE CHANGES AND OFTENTIMES BEHAVIORS ARE MISINTERPRETED AS
BEING OBSTINATE AND BEING OBSTINATE, ATTENTION GETTING
BEHAVIOR AND WE FORGET TO FOCUS ON CHANGES OR SUBTLE CHANGES OF
LONG STANDING LEVELS OF ABILITY BECAUSE THAT’S WHAT’S GOING TO
BE THE CRITICAL FACTOR IN TERMS OF HELPING TO MAKE A DIAGNOSIS. FOLKS HERE AT THE TABLE TALKED
ABOUT THE LENGTH OF TIME IT TAKES TO MAKE A DIAGNOSIS FOR
THEM FROM TWO YEARS TO EIGHT YEARS TO HOW MANY YEARS. OVER TWO. OFTEN TIMES WHAT HAPPENS IN THE
ID COMMUNITY, ESPECIALLY BE A PERSON WITH DOWN’S SYNDROME, IS
IF YOU SHOW UP AT THE DOOR, DOCTOR’S DOOR AND YOU ARE 42
YEARS OLD, WITHIN A VERY SHORT PERIOD OF TIME IT’S DETERMINED
THAT YOU HAVE ALZHEIMER’S DISEASE. WITH LITTLE OR NO DIFFERENTIAL
DIAGNOSIS. SO WHAT WE ARE SUGGESTING WE
NEED AS WE COME TO THIS TABLE IS WE NEED TO REALLY RETHINK HOW
PHYSICIANS ARE TRAINED AROUND AGING, INTELLECTUAL DISABILITIES AND AGING WITH INCREASE
AWARENESS THAT THERE IS A POSSIBLE DEVELOPMENT OF
ALZHEIMER’S DISEASE. MOST PHYSICIANS HAVE A SMALL BIT
OF INFORMATION AND ACT ON IT THINKING YOU’RE 42, YOU HAVE TO
HAVE ALZHEIMER’S DISEASE. WITHOUT LOOKING TO SEE LOOK AT
ALL THE CO-OKAY OCCUR CONDITIONS THE PERSON COMES TO THE TABLE
WITH, AND SAYING COULD THIS BE A THYROID CONDITION, COULD IT BE
SOMETHING THAT IS MIMICKING ALZHEIMER’S DISEASE AND WHAT CAN
WE DO TO MAKE A DIFFERENTIAL DIAGNOSIS. SO WE NEED TO HAVE PHYSICIANS
WHO ARE REALLY SENSITIVE TO US AND CAN PROBLEM SOLVE AND TAKE
THE TIME TO MAKE A REASONABLE DIAGNOSIS RATHER THAN RUSHING TO
A DIAGNOSIS WITH THIS POPULATION. THAT IS AN EXAMPLE OF HEALTHCARE
DISPARITY THAT CAUSES US UNDUE CHALLENGES OVER TIME. THE OTHER THING PEOPLE FAIL TO
RECOGNIZE, THESE ARE FAMILIES THAT LIVE WITH A LIFETIME OF
DOSIMETRY WITH LIFETIME OF CHALLENGES WITH A LIFETIME OF
HAVING TO FIGHT FOR EVERY SINGLE THING AWE LONG THE WAY.
AND IT’S REALLY DIFFICULT FOR YOU TO UNDERSTAND THE
SIGNIFICANCE OF THIS DIAGNOSIS AFTER A LIFETIME OF CARE GIVING. IT’S KIND OF LIKE ONE OF
NATURE’S CRUELEST THINGS TO US TO HAVE THIS ADDED DIAGNOSIS. CAN YOU ADVANCE? I CAN DO TWO THINGS AT ONCE. SO THESE ARE FOLKS THAT ARE
CURRENTLY LIVING WITH A DIAGNOSIS OF ALZHEIMER’S DISEASE
AND YOU CAN SEE FROM THIS SLIDE, THEY RANGE FROM VERY YOUNG TO
VERY OLD. SOME OF THE YOUNGER PEOPLE I BELIEVE ARE BEING MISDIAGNOSED
IN AGE 20 AND EARLY 30s AND YOUNG WOMAN WITH THE FOOTBALL
SHIRT DOESN’T HAVE DOWN’S SYNDROME BUT ANOTHER RARE
NEURODEGENERATIVE CONDITION AND SHE IS IN HER EARLY 30s AND
DIAGNOSIS HAS BEEN MADE. I THINK WE HAVE A LOT OF
MISINFORMATION THAT FOLLOWS US WHEN WE HAVE THESE KINDS OF
COGNITIVE CHANGES. WHEN A DIAGNOSIS IS MADE, THE
BURDEN OF CARE REALLY FALLS ON OUR FAMILY MEMBERS. AND FAMILY MEMBERS ARE REALLY
VERY MOST OFTEN LEFT TO THEIR OWN DEVICES TO PROBLEM SOLVE. AS I MENTIONED TO SOMEONE, IN
THIS DAY OF NO WRONG DOOR, WE CANNOT SEEM TO BE ABLE TO EVEN
FIND THE FIRST DOOR. SO AGAIN, THAT LEAVES US WITH NO
SUPPORT. WE STRUGGLE TO MAKE CONNECTIONS
WITH OTHER FAMILIES AND WE’RE GRATEFUL THE NTG AND THERE’S
SOME FACEBOOK PAGESES THAT MADE IT EASIER FOR US TO BE IN TOUCH
WITH ONE ANOTHER ACROSS THE COUNTRY. THE NTG DOES HAVE AN ONLINE
SUPPORT GROUP THAT MEETS MONTHLY, AND WE HAVE PEOPLE FROM
ALL OVER THE COUNTRY THAT ARE PARTICIPATING WITH US. ICS TELL YOU FROM MY EXPERIENCE
WITH MY BROTHER, IT’S A DESPERATE LONELINESS THAT YOU
EXPERIENCE WITH THIS DIAGNOSE KNOW LONELINESS WITH THIS
DIAGNOSIS AND WITH ADVANCEMENT OF THE DISEASE. ALL TOO OFTEN THE FAMILY MEMBERS
BECOME THE DIAGNOSIS ONCE THAT’S RECEIVED. EVERY BEHAVIOR IS ATTRIBUTED TO
ALZHEIMER’S DISEASE, THERE’S NO ATTEMPT TO LOOK AT THE OTHER
CO-OCCURRING CONDITIONS AND WHAT RESULTS IS I THINK FRUSTRATION,
INCREASE BEHAVIORS, SUFFERING UNTREATED CONDITIONS AND OVERUSE
OF PSYCH TROPIC DRUGS ARE NOT UNCOMMON IN THIS POPULATION OF
PEOPLE. WE WORRY ABOUT SUPPORT SERVICES
WE CAN FIND DEPENDENT ON IMPROVED SKILLS WHEN FACING A
SITUATION WHEN OUR FAMILY MEMBER WILL NO LONGER BE ABLE TO
IMPROVE SKILLS. OUR GREATEST FEAR IS TO HAVE
ACCESS WE WILL NOT BE ABLE TO HAVE ACCESS TO A KNOWLEDGEABLE
WORK FORCE THAT WILL ACT IN OUR FAMILY MEMBERS’ BEHALF AND
SUPPORT THEM AS PEOPLE. THEY ARE PEOPLE ARE A LIFE STORY
AND THEY ARE PEOPLE WITH A LIFE STORY THAT SHOULD SHAPE THE KIND
OF CARE THEY GET. MEDICARE MAKES IT VERY DIFFICULT
FOR US TO MOVE TO A NEW STATE BECAUSE MEDICARE FUNDING DOESN’T
FOLLOW US THEREFORE IF WE MOVE SOMEPLACE ELSE WE LOSE OUR
FUNDING. I WAS SENT HERE BY IN FAMILY
MEMBERS TO TELL YOU RESPITE CARE ELUDES US AND WE ARE IN NEED OF
CONNECTIONS WITH REPIT CARE OPPORTUNITIES THAT WE CAN’T
ACCESS IN OUR COMMUNITIES. SO IF YOU LOOK AT THESE FACES
YOU CAN UNDERSTAND THESE ARE INTEGRAL PART OF OUR
COMMUNITIES, INTEGRAL PART OF OUR FAMILY AND WE HAVE GREAT
VALUE IN OUR COMMUNITIES AND WE ARE OVERLOOKED AND I THINK THAT
OUR GOAL HERE IS TO MAKE NOT JUST A DEMENTIA FRIENDLY WORLD
BUT DEMENTIA INCLUSIVE WORLD. I THINK THAT’S THE JOB WE HAVE
THAT FACES US TODAY. THIS IS MY BROTHER BILL. HE DIED WHEN HE WAS 49 YEARS OLD
OF COMPLICATIONS OF ALZHEIMER’S DISEASE. ONE POINT IN HIS LIFE HE MADE
THE COMMENT THAT I AM A PERSON TOO, IT’S A POINT I FELT HE WAS
DISENFRANCHISED, AND HIS PERSON HOOD WASN’T BEING ACKNOWLEDGED
AND HE HAD GREAT WISDOM WHEN HE MADE THAT COMMENT AND I REGRET
WE NEVER FOLLOWED THAT OR ABLE TO BE AS ARTICULATE WITH THE
FACT HE WAS A PERSON TOO AS HE DECLINED OVER THE COURSE OF HIS
DISEASE. I LEAVE YOU THREE COMMENTS FROM
OUR THE VARIOUS FAMILY ABOUT PERSON CENTERED CARE NOT BEING
PERSON CENTERED. AND THAT WE LACK CARING AND
HEALTHCARE AND WE REALLY NEED TO LOOKED AT OUR SOCIETY AND REALLY
REFLECT AND SAY HOW ARE WE TREATING THE PEOPLE MOST
VULNERABLE AND HOW DO WE INCLUDE THIS, MAKE THEM INCLUDED IN OUR
DEMENTIA CARE. I HOPE THAT WHEN YOU LEAVE THIS
TABLE, THAT YOU WILL GO HOME WITH THESE IMAGES AND BE ABLE TO
THINK ABOUT WHAT YOU CAN DO IN YOUR VARIOUS ORGANIZATIONS TO
IMPROVE THE POINT WE FACE. THANK YOU.>>THANK YOU, MARY. [APPLAUSE]>>WE’RE GOING TO MOVE ON AND
HEAR FROM JOHN COLLINGE, CAREGIVER FOR WIFE SONDRA.>>THANK YOU FOR THIS
OPPORTUNITY. JOHN COLLINGE. I AM HERE FOR TWO REASONS. I WANT TO HONOR THE REMARKABLE
WOMAN MY WIFE WAS AND IS AND I ALSO WANT TO DO WHAT I CAN TO
HELP PEOPLE AVOID BUMBLING AND STUMBLING AND GROPING THAT WE
BOTH WENT THROUGH. MY WIFE IS 14 YEARS IN THE
VISIBLE SIGNS OF FRONTAL TEMPORAL DEGENERATION. NOT THAT WE RECOGNIZE THEM THAT
EARLY. BEFORE DEMENTIA OVERWHELMED HER,
SHE WAS AN ACCOMPLISHED SENIOR FOREIGN SERVICE OFFICER. EARLIER SHE WAS THE FIRST
AFRICAN AMERICAN WOMAN HIRED AS SECRET SERVICE SPECIAL AGENT. ONCE RESPONSIBLE FOR PROTECTING
SUSAN FORD AND AMY CARTER. NOW SHE IS 40 MONTHS LONG TERM
CARE AND REMEMBERS NONE OF THAT. BUT NOR DOES SHE KNOW SHE’S ILL. SOME SPECULATE LIFESTYLE CHOICES
TRIGGER DEMENTIA. THAT’S NOT TRUE FOR HER AND
SHE’S PART OF MY LIFE FOR 40 YEARS. SHE IS A VIGOROUS WALKER, SHE
MAINTAINED HER WEIGHT AND A SENSIBLE DIET. NEVER SMOKED. NEVER DID DRUGS, DRANK SPARINGLY
BUT SHE LED A HIGH STRESS LIFE, SUFFERED TERRIBLE SIDE EFFECTS
OF FIBROIDS AND SURGERIES, HAD SEVERE CONCUSSION AT 24. AND WAS ON ESTROGEN FOR FAR TOO
MANY YEARS AFTER THE FIBROIDS FORCED HYSTERECTOMY. WERE THESE THINGS TRIGGERS? WE DON’T KNOW. BUT OTHER RESEARCH DOES
SUGGESTED THE POSSIBILITY OF A CONVERGENCE. SHE FIRST NOTICED SHORT TERM
MEMORY LOSS AROUND 2004, 2005. BUT IT COULD HAVE BEGUN BY 1998,
1999 WHEN SHE STRUGGLED TO MASTER KOREAN FOR AN ASSIGNMENT
INZOAL. WE THOUGHT IT WAS STRESS. SO DID THE DOCTOR WE CONSULTED. WE DIDN’T THINK TO SEEK REFERRAL
TO NEUROLOGIST UNTIL EARLY 2009. BY THEN ZONDRA COULDN’T DENY
MEMORY AND PROFESSIONAL SKILLS WERE DETERIORATING. NOT THAT SHE DIDN’T TRY TO COPE
BY MANAGEMENT BY STICKING. THE DIAGNOSIS WAS PROGRESSIVE
IRREVERSIBLE MEMORY LOSS. .
THE NEUROLOGIST SAID THAT SHE TREAT HER AS SHE WOULD AN
ALZHEIMER’S PATIENT BUT SHE COULD ONLY HOLD OFF HOPE OF
SLOWING HER DECLINE. NOTHING SORT OF COGNITIVE LOSS
AND WE DIDN’T THINK PERHAPS WANT TO ASK, A BIG MISTAKE. ESPECIALLY WHEN HER EMPATHY
STARTED TO GO AND I DIDN’T UNDERSTAND THAT IT WASN’T
REJECTION. HER CAREER EFFECTIVELY ENDED IN
2010 THOUGH SHE DIDN’T RETIRE UNTIL EARLY 2011. INITIALLY SHE COPED FAIRLY WELL. BUT HER WORLD STEADILY
CONSTRICTED BY 2012 TRAVEL INDUCED PANIC ATTACKS AND A LADY
WHO LOVED TO EXPLORE THE WORLD. IN 2014, SHE NO LONGER
REMEMBERED THAT SHE HAD A SON. SHE GOT LOST RETURNING FROM
CHURCH AND GAVE UP DRIVING. BY THEN I WAS MANAGING HER
AFFAIRS. THAT FALL I PERSUADED HER TO
ENTER IONA WELLNESS AND ARTS PROGRAM, A WONDERFUL ADULT DAY
SERVICES DEVELOPED FOR ADULTS SUFFERING COGNITIVE DECLINE. SHE TOOK OUT A SUPERB LONG TERM
CARE POLICY IN 2000. 2014, SHE GOT AN EARLY ONSET
ALZHEIMER’S DIAGNOSIS, WHEN I FILED FOR HER INSURANCE
BENEFITS. ALSO THAT YEAR I REALIZED ZONDA
WOULD SOON NEED LONG TERM CARE. THE PREVIOUS YEAR I ACCEPTED MY
NEED TO REACH OUT TO SUPPORT GROUPS. FIRST AT WORK THEN THROUGH IONA. MY FRIENDS COULD SEE BETTER THE STRESS THAT I WAS UNDER AND WHAT
IT WAS DOING TO ME. HER DECLINE WAS GRADUAL BUT
REMORSE WAS THROUGH 2014, IT BECAME PRECIPITOUS IN 2015, AS
DID MY RISING STRESS LEVEL AND DECLINING QUALITY AS A
CAREGIVER. I KNEW THAT HAVE THAT COULD BE
THE YEAR FOR LONG TERM CARE. BUT UNDERESTIMATED HOW SOON. I WAS FORTUNATE THROUGH IONA TO
LOCATE FORTUNATE TO LOCATE KINSINGTON DEMENTIA FACILITY,
SHE ENTERED THAT JULY. HER ADJUSTMENT WAS REMARKABLY
SMOOTH BUT SHOCKING WHEN I FIRST VISITED HER TO REALIZE SHE HAD
ALREADY DETACHED FROM HER EARLIER LIFE. IF ONLY THROUGH THE ARDENT
COURSE MEDICAL STAFF DID I BECOME AWARE OF THE NTD FORM OF
DEMENTIA. I BELIEVE THAT AS THE RIGHT
DIAGNOSIS THOUGH I WILL PROBABLY NEVER KNOW. WHAT DID I LEARN? WE DON’T KNOW ABOUT DEMENTIA,
WHITE IT OCCURS AND HOW THE TREAT IT. MUCH MORE IS NEEDED. SECOND, THERE’S PLAIN BRAIN
BOOSTER SOLUTIONS OUT THERE. THERE’S SILVER BULLETS, SILVER
BULLETS DON’T WORK IN REAL LIFE. THIRD, EVERYONE NEEDS LONG TERM
CARE INSURANCE, THESE CAN BE MADE AVAILABLE AND AFFORDABLE. FOURTH, IF YOU WERE A FAMILY
MEMBER, SEEM TO BE SLIPPING INTO SUSTAINED MEMORY LOSS, SEE A
NEUROLOGIST. DON’T DELAY. FIFTH, PRESS THE NEUROLOGIST TO
BE THOROUGH AND CANDID, EVEN BLUNT WITH THE DIAGNOSIS MEANS
FOR THE PATIENT AND THE FAMILY. SIX, BE HONEST WITH YOURSELF,
WHAT YOU SEE AND FEELING. GUARD AGAINST BURN OUT AND
DEPRESSION. 7TH, TURN TO YOUR FRIENDS AND
ASK THEM TO BE BLUNT IF THEY SEE YOU WEARING DOWN AND NEEDING
HELP. 8, NO CAREGIVER CAN DO IT ALONE. SUPPORT GROUPS PROFESSIONALS
ANDS OTHER RESOURCES. FINALLY, ACCEPT THAT THE DAY
WILL COME WHEN YOU HAVE DONE ALL THAT YOU CAN AND YOU MUST HANDLE
CARE GIVING. YOU ARE MAKING A GIFT OF LOVE. THANK YOU ALL. [APPLAUSE]>>THANK YOU SO MUCH, JOHN. NOW WE WILL HEAR FROM VERONICA
COOL AND HER EXPERIENCES AND HER WONDERFUL KNOWLEDGE THAT BRINGS
HER TO THE TABLE.>>THANK YOU FOR HAVING ME,
LISTENING TO EVERYBODY I’M GOING I’M NOT GOING TO CRY, I’M NOT
GOING TO CRY AND OF COURSE I’M CRYING. SO THANKS, GUYS. APPRECIATE THAT. SO FIRST OF ALL I’M NOT
MEDICINE, NOT INTO SCIENCES, I’M NOT IN GOVERNMENT. SO EVERYTHING I’M SHARING WITH
YOU COMES EXACTLY FROM AN END USER PERSPECTIVE. I’M DOMINICAN BORN AND BREAD,
BEAUTIFUL ISLAND IN THE CARIBBEAN SHARED WITH HAITI,
CAME TO THIS COUNTRY AT AGE TEN, EDUCATED HERE AND UNDERSTOOD
GRAD AND MASTERS IN FINANCE, 20 YEARS IN CORPORATE BANKING. I FEEL I’M RATHER WELL PREPARED
FOR LIFE. YET WE DIDN’T KNOW MY FATHER HAD
ALZHEIMER’S. SO I LAUNCHED MY COMPANY FIVE YEARS AGO. BECAUSE IN CORPORATE BANKING I
WOULD DO A LOT OF THIS NON-PROFIT WORK. I’M THE ONLY LATINA, THE ONLY
WOMAN LATINA IN SIGHT. SO OFTEN I GOT TAPPED TO BE
THETRY IF HE CAN TA. GET HER ON THE BOARD WE CAN GET
THREE FOR ONE WITH HER. SO I GOT ON MULTIPLE BOARDS, I’M
OOH COMMUNITY PERSON, A SERVANT LEADER AND I WOULD DO THOSE
THINGS AND FOLKS WOULD WHISPER AT ME AT EVERY FUNCTION, HEY,
WHERE DO WE GET LATINO? HOW DO WE HIRE THEM? IS THAT A GOOD EVENT TO GO TO? IS THIS A GOOD TRANSLATION? SO THERE’S A FUNCTION GOING ON
AND I’M GOING NO, JOHN, THAT’S NOT GOOD. AND IT WAS PERPETUAL. I REALIZE I HAVE TO DO
SOMETHING, I CREATED MY COMPANY AND I HAD THIS GRANDIOSE IDEA OF
TELLING PEOPLE WHAT TO DO. YOU’RE IN THAT ROLE, FIX IT. SHORTLY I DISCOVERED I DIDN’T
KNOW HOW SO WE IMPLEMENTED THE THINGS WE RECOMMENDED. SO THIS IS ALWAYS HAPPENING, I
HAD THE PLEASURE OF WORKING WITH IN MARYLAND WITH ALZHEIMER’S. I STARTED WORKING, SHE ASKED ME
TO DANCE IN THE MEMORY VAULT. I DID IT BECAUSE I THINK I’M
DOMINICAN AND I THINK I CAN DANCE. AND APPARENTLY THERE’S A
DIFFERENCE BETWEEN PROFESSIONAL DANCING AND SOCIAL DANCING SO
THAT WAS A NICE LESSON. BUT I DANCED NUMBER ONE BECAUSE
MY FATHER HAS DEMENTIA AND ALZHEIMER’S. THE MORE I TALK TO MY COMMUNITY
THE MORE I TALK TO MY PARENTS, MY MOM, FAMILY, RELATIVES THEY
SIMPLY GO NO, HE’S OLD. YOU KNOW HOW PEOPLE GET OLD. EVERY DAY MOM WOULD TELL ME, YOU
LEFT THE COFFEE ON. YOU LEFT THE KEYS IN THE DOOR. I’M LIKE JUST REMIND HIM, HE
WALKED OUTSIDE AND FORGOT TO HOW TO GET HOME. SO WE DIDN’T KNOW WHAT
ALZHEIMER’S WAS, SIMPLY OLD AGE. PUT ON YOUR SPANISH HAT, PUT ON
YOUR CULTURE HAT. EVERYONE OF THESE FOLKS SHARE
REAL TRAGIC STORIES, EVERYONE WAS SUPER ARTICULATE, EVERY ONE
OF YOU HALF OF YOUR INTRODUCTION I DIDN’T UNDERSTAND THE TERMS. THESE ARE INTELLIGENT EDUCATED
PEOPLE HERE. YOU ARE HAVING A STRUGGLE
GETTING THE ACCESS YOU NEED. GO BACKWARDS. WE DON’T UNDERSTAND YOUR
CULTURE. AND WE DON’T SPEAK YOUR
LANGUAGE. WE DIDN’T GET CARE. MY FATHER WAS ALMOST KILL IN A
HOSPITAL BECAUSE THEY DIDN’T UNDERSTAND WHAT HE WAS SAYING
AND MY MOTHER WHO SPEAKS ENGLISH COULDN’T CONVEY, WITH HER LEVEL
OF STRESS, WHAT THEY NEEDED. SO I DANCED WITH THE HOPE OF
SHOWING THE MAINSTREAM COMMUNITY, HEY, HISPANICS ARE
HERE, WE’RE 34% MORE LIKELY TO BE UNDIAGNOSED WHEN ONE AND A
HALF TIMES MORE LIKELY TO HAVE THIS DISEASE AND YOU ARE NOT
TALKING TO US. ALZHEIMER’S ASSOCIATION HAS
RESOURCES SO THEY’RE BEAUTIFUL, APPROPRIATE, THEY’RE
COMPASSIONATE BUT THEY ARE SITTING HERE IN A BEAUTIFUL
BOOKCASE AND SHELF, THAT’S NOT COMING TO US. MY NOTHER NEVER WENT TO A
SUPPORT GROUP, SHE STILL HASN’T GONE TO ANYTHING LIKE THAT, WE DON’T KNOW THESE THINGS ARE FOR
US. SO I DANCED. THINKING THAT I CAN USE THE SHOW
AND TELL. I CAN SHOW THE AMERICAN WORLD
WE’RE HERE AND SHOW LATINO COMMUNITY, (SPEAKING FOREIGN
LANGUAGE) SO I DID A MEDIA CAMPAIGN IN MARYLAND, AND I’M
EXPLAINING TO THE LATINO COMMUNITY WHAT THIS IS AND THEY
ARE LOOKING AT ME GOING HUH? NO HE’S OLD. NO IT’S A DISEASE. NO, HE’S JUST OLD. WHAT ARE YOU TALKING ABOUT? THEY COULDN’T UNDERSTAND THE
ISSUE. NUMBER TWO, THAT I COULDN’T FUND
RAISE WITH ME. THEY WEREN’T GIVING ME MONEY, I
THOUGHT THE MONEY WAS ME. I’M DANCING SO I CAN GET MONEY
TO DO MORE FOR US SO THE QUESTIONS ON FACEBOOK AND MEDIA
WOULD BE ALL ABOUT WHY DOES SHE NEED THE MONEY? SHE LOOKS OKAY. IT’S NOT FOR ME. I HAD A HURDLE IN PHILANTHROPY
AND FUNDRAISING. THAT WAS A LESSON LEARNED. SO THE GAP IS HUGE. WITH THE CULTURE AND THE
LANGUAGE. SO WHY I AGREED TO DO THIS
PANEL, WAS A CALL TO ACTION TO SHOW UP AND SHOW YOU THAT YOU’RE
NOT TALKING TO US. YOUR RESEARCH I APOLOGIZE
EVERYONE WAS TALKING AND FLIPPING THE PAGES, IT’S
BEAUTIFUL. ONLY FIVE TO SEVEN PERCENT OF
YOUR CONTENT TALKS ABOUT LANGUAGE AND CULTURE. SO I HAVEN’T DUG INTO IT SO I
APOLOGIZE IF IT’S MORE. BUT I’M GOING WE OTHER NOT HERE. YOUR ROAD MAP IS GLORIOUS AND
THERE’S NOTHING ABOUT US. I’M SURE IT’S IN THERE, A LITTLE
BIT BUT AS I’M LOOKING AT IT, IT’S NOT ENOUGH. YOU ARE NOT COMING TO US. YOU ARE NOT IN MY NEIGHBORHOOD,
NOT HAVE A SYMPATHETIC COMPASSIONATE CULTURAL PLACE TO
UNDERSTAND THAT WE’RE NOT GOING TO PUT OUR FAMILIES IN A HOME. YOU DON’T KNOW WHAT WE LIKE TO
EAT. YOU DON’T KNOW THAT OUR FOOD IS
SEASONED A CERTAIN WAY. YOU DON’T UNDERSTAND THAT A MAN
ISN’T GOING TO BE TOUCHED BY ANYONE OTHER THAN HIS WIFE. WE DON’T HAVE PATIENCE FOR THAT. I DON’T KNOW WHY THERE IS NONE
YET. AND I KNOW IT’S A TIMING PIECE. I KNOW THAT’S WHY WE’RE HERE TO
HAVE THESE CONVERSATIONS SO I’M GOING TO URGE YOU TO THINK ABOUT
YOUR POLICY, THINK ABOUT YOUR GRANT WRITING. THINK ABOUT YOUR STAFF YOUR
TEAM, AT THE TABLE, DO YOU HAVE PEOPLE LIKE ME GOING TO
THERE’S NO FUNDING FOR TRANSLATION. HELLO. EXCUSE ME. THERE’S NO FUNDING FOR SOCIAL
MEDIA. WE LAUGH ABOUT SOCIAL MEDIA. 65 TO 80% ARE ON SOCIAL MEDIA,
ACTIVELY ON SOCIAL MEDIA TO NETWORK. IT’S NOT LOOK AT MY LULU LEMON
PANTS, NO WE ARE THERE TALKING ABOUT SCHOOL IS CLOSED BECAUSE
OF THE SNOW TOMORROW, IF I DON’T GO TO WORK I GET FIRED WHERE DO
I GO? AND THEY CHIME IN, THE CHURCH
DOWN THE STREET IS BRINGING ANOTHER LADY YOU CAN BRING THE
KIDS THERE. THAT’S WHY WE’RE ON THE
FACEBOOK. SO WHEN WE TALK ABOUT DAD IS
ACTING WEIRD WE DON’T HAVE A RESOURCE TO GO NO HE’S NOT. HE HAS A CONDITION HERE IS SOME
HELP. SO MY DAD DIED. I KNOW, RIGHT? SO HE’S 91. AND HE PASSED AWAY. HE’S FIRST PERSON CLOSE TO ME
THAT PASSED. SO EVERYBODY IS BEING VERY KIND
AND GENEROUS AND SUPPORTIVE. AND THEY EXPLAIN TO ME THAT WITH
ALZHEIMER’S YOU LOSE THEM TWICE. AND I DIDN’T KNOW THAT. SO IN THE DOMINICAN REPUBLIC HE
STOOD UP AGAINST A DICTATOR TO GET A FIRE ENGINE FOR HIS
HOMETOWN AND THEY ALMOST KILLED HIM FOR THAT. SO HE DID GET THE FIRE TRUCK. SO WHEN HE PASSED AWAY AND
FOUNDING MEMBER OF THE FIRE DEPARTMENT, THE FIRE DEPARTMENT
WANTED TO SEND HIM OFF PROPERLY. SO WE WERE THERE FROM DOMINICAN
REPUBLIC TO SEND HIM OFF. THAT’S A LEGACY, RIGHT? SO EYE I’MNYING IT, HE’S IN
THE FIRE TRUCK AND THE WINDSHIELD IS MISSING, DOESN’T
HAVE A HOSE OR LADDER. WE’RE LIKE HOLD UP A SECOND. IS THIS HOW YOU PROTECT YOUR
TOWN? MY FATHER RISKED HIS LIFE FOR
YOU TO HAVE THAT? SO SHORT OF IT WE’RE HONORING
HIS LEGACY BY GETTING A FIRE TRUCK IN THE DOMINICAN REPUBLIC. I OWN A FIRE TRUCK BY THE WAY. THAT’S GOING TO BE THERE BY THE
END OF THE YEAR, ANOTHER GREAT STORY. SHORT OF IT TO CLOSE, THANK YOU
FOR HAVING ME AND ALLOWING OUR VOICE A YOUR TABLE. I WOULD URGE YOU TO REMEMBER
THAT EDUCATED ARTICULATE PEOPLE HAVE A HECK OF A TIME GETTING
YOUR SERVICES. ADD THE LAYER OF CULTURE AND
LAYER OF LANGUAGE ACCESS, WE HAVE NO CLUE THAT YOU HAVE THESE
RESOURCES THAT ARE MAGNIFICENT. SO WE’RE MISSING THE CONNECTION
BETWEEN THOSE RESOURCES, BEING TAILORED TO OUR COMMUNITY AND
RESOURCES BEING DELIVERED TO US. SO I BROUGHT SOME PRESENTS. WE HAVE SOME TOOLS WE USE THAT
CAN BE MULTI- CAN BE ADJUSTED TO REACH THE HISPANIC COMMUNITY. WELCOME FOR YOU GUYS TO HAVE
THEM. THANK YOU. [APPLAUSE]>>WHAT AN INCREDIBLE PANEL WE
HAVE. [APPLAUSE]
SO IF WE TALK ABOUT HOW THIS UNFOLDS I SAID I WOULD KICK OFF
SOME QUESTIONS AFTERWARDS AND THEN I’LL INVITED YOU TO OFFER
SOME QUESTIONS. I’M GOING THE DIRECT MY FIRST
QUESTION TO DIANA. DIANA, COULD YOU SHARE WITH US
THE COMMON MISPERCEPTION THAT PEOPLE HAVE REGARDING A PERSON
WHO HAS ALZHEIMER’S AND WHO LIVES ALONE?>>THERE’S SO MANY
PEOPLE LOOK HOW ARE YOU COOING THIS WHY ARE
YOU DOING THIS, IT’S SO WRONG. IT MAKES PERFECT SENSE TO ME. I’M SAFE. WHEN I STARTED LEAVING STOVE ON
AND FORGETTING IT AND I DON’T HAVE GAS, I JUST HAVE ELECTRIC. I CREATED A ROUTINE WHERE STOVE DOESN’T GO ON UNTIL THE TIMER
GOES ON FIRST. AND WHEN THAT NO LONGER WORKS,
OF COURSE I DON’T COOK VERY MUCH ANY MORE BECAUSE IT’S TOO HARD. MAKING OAT MEAL HAS GOTTEN TO BE
COMPLEX. WHEN THAT GETS TO BE TOO MUCH IF
I’M STILL COOKING ANYTHING I FOUND THERE’S AN IT TOOL THAT
YOU CAN HOOK UP TO YOUR STOVE THAT HAS A MOTION SENSOR ON IT. I THINK NORMAL PEOPLE NEED
THOSE. I LIKE TO THINK I’M NORMAL OR
THAT I BELONG IN NURSING HOME, THIS IS THE ULTIMATE INSULT I
THINK. I COULDN’T POSSIBLY HAVE
ALZHEIMER’S IF I LIVE ALONE. I HAVE FRIENDS IN IN ALZHEIMER’S
SUPPORT GROUPS THAT LAS VEGAS ALONE, THEY HAVE FAMILY THAT
LOOK IN ON THEM BUT I THEY LIVE ALONE. SO I’M NOT UNIQUE. THEN I WONDER HOW I GET AROUND
OR EVEN DRIVE. YEAH, I CAN STILL DRIVE, I
HAVEN’T DRIVEN VERY MUCH SINCE I MOVED TO WASHINGTON D.C. BECAUSE
I CONSTANTLY LIVE THE PEDESTRIAN LIFESTYLE, I CAN STILL DRIVE AND
TAKE THE METRO, JUST TAKES A LITTLE EXTRA PLANNING, DON’T
DRIVE AT NIGHT OR IN STRANGE SITUATIONS. IT GOOGLE MAPS AND GOOGLE
DIRECTIONS WHEN YOU ARE WALKING IS AMAZINGLY GOOD. IT’S AMAZING HOW MUCH BETTER IT
IS THAN IT WAS FOUR YEARS AGO. SO IT IS ABOUT ACCOMMODATIONS,
MITIGATION, AND ADJUSTING THOSE AS THE DISEASE PROGRESSES.>>THANKS, DIANA. MARY. WHAT SUGGESTIONS DO YOU HAVE TO
IMPROVE THE OUTCOME FOR PEOPLE WITH DOWN’S SYNDROME AND OTHER
INTELLECTUAL DISABILITIES?>>THANKS, CYNTHIA. DURING MY PRESENTATION, I
MENTIONED WE HAVE ISSUES RELATED TO HEALTHCARE DISPARITIES AND I
THINK THAT IT’S A REALLY IMPORTANT THING FOR US TO LOOK
AT HEALTHCARE DISPARITIES AND ASKING OURSELVES HOW DO WE
MINIMIZE THIS OVER TIME. HEALTHCARE DISPARITIES FROM HAVE
A LONG HISTORY IN THIS COMMUNITY AND OTHER MINORITY COMMUNITIES. PEOPLE TRAINED TO BE PHYSICIAN
THERE’S LITTLE INFORMATION PROVIDED CULTURALLY RELATED I
SEE IT AS A CULTURE, THERE’S A LITTLE INFORMATION IN OUR
MEDICAL SCHOOLS. A FABULOUS THINGS HAPPENED
RECENTLY, A YOUNG WOMAN MEDICAL STUDENT AT OHIO STATE UNIVERSITY
HAS A BROTHER WITH DOWN’S SYNDROME, SHE’S BEEN
INSTRUMENTAL HAVING OHIO STATE UNIVERSITY INTEGRATE TO
CURRICULUM FROM BEGINNING OF MEDICAL SCHOOL ON THE ID
POPULATION. HOWEVER OLDER PEOPLE WEREN’T
INCLUDED IN THE POPULATION. I THINK WE NODE TO ACKNOWLEDGE
ISSUES WITH AGEISM AND AGEISM WITH A DISABILITY, AND WE’RE
NEVER GOING TO GET ANYWHERE. WE RECOGNIZE THAT OUR HEALTHCARE
PROVIDERS DO THE BEST THEY CAN, I THINK THERE ARE THINGS WE CAN
HELP THEM WITH. I THINK WHETHER IT’S CMS OR
WHATEVER OTHER AGENCY THAT SITS AT THE TABLE, EVEN THE NTG
CREATED TOOLS FOR DOCTORS TO USE AND WE HAVE A LIMITED IMPACT IN
TERMS HOW TO GET THEM OUT THERE. WE HAVE TOOLS THAT ESTABLISH A
BASELINE. WE HAVE SOMETHING THAT WAS PUBLISHED IN MAYO CLINIC
PROCEEDINGS HOW TO MAKE A DIAGNOSIS WITH THIS GROUP OF
PEOPLE. WE HAVE TOOLS FOR YOU TO CREATE
A TOOLBOX. WE HAVE COME HERE SEVEN YEARS
TELLING YOU ABOUT OURSELVES, ABOUT OURSELVES, IT’S TIME TO
STEP BACK TO THINK WHAT WE BROUGHT TO THIS TABLE THAT COULD
BE VERY USEFUL FOR YOU IN TERMS OF HELPING PRIMARY CARE
PHYSICIANS ACCURATELY MAKE A DIAGNOSIS OR ACCURATELY AS
POSSIBLE WITH THIS GROUP OF PEOPLE. WE HAVE BEEN VERY DEPENDENT ON
PHILANTHROPY FOR INFORMATION COUPLE OF YEARS AGO DOWN
SYNDROME SOCIETY WAS ABLE TO PUBLISH A BROCHURE ON AGING,
VERY WELL RECEIVED, BUT AGAIN, NOT WELL DISSEMINATED, OTHER
THAN OUTSIDE OUR SPECIFIC SPHERE. WE HAVE JUST PUT TOGETHER WITH
THE ALZHEIMER’S ASSOCIATION AND THE NTG PUBLICATION ON CAREGIVER
GUIDE TO DOWN SYNDROME AND ALZHEIMER’S DISEASE. THIS DOESN’T DO US ANY GOOD
UNLESS YOU PUT IT IN THE HANDS OF A PHYSICIAN SO THAT THEY KNOW
IT’S A RESOURCE, THEY CAN PASS ALONG TO THEIR FAMILY MEMBERS AS
THEY COME TO THE OFFICE. THERE IS NOTHING MORE
DEVASTATING THAN RECEIVING A DIAGNOSIS AND THEN YOU’RE GIVEN
THE DOOR. WE NEED TO DO SOMETHING TO
IMPROVE THE CARE AT THE DIAGNOSTIC POINT AND POST
DIAGNOSIS TO MAKE SURE THAT PEOPLE FEEL LIKE THEY HAVE SOME
KIND OF SUPPORT NETWORK. I WANT TO MENTION IN THE MAYO
CLINIC PROCEEDINGS, I DID BRING ALONG THIS DOCUMENT BY THE NATIONAL TASK GROUP HOW TO MAKE
EVALUATION AND MANAGEMENT OF DEMENTIA IN ADULTS WITH
INTELLECTUAL DISABILITIES. WE HAVE RESOURCES AND IT IS TIME
TO USE THEM, WE LOOK FOR YOU TO PUT THEM TOGETHER IN A TOOLBOX
SO THEY’RE OUT THERE.>>THANK YOU, MARY. JOHN. YOU TALKED ABOUT A SUPPORT GROUP
BEING HELPFUL TO YOU. I’M WONDERING IF YOU HAD ANY
OTHER THOUGHTS ABOUT WHAT OTHER SUPPORTS MIGHT HAVE HELPED HAD
YOU KNOWN ABOUT THEM OR LOOKING BACK OVER YOUR SHOULDER WHAT YOU
MIGHT HAVE WISHED FOR.>>DEBRA CHERRY MADE AN
EXCELLENT POINT EARLY ON. WE WERE ESSENTIALLY GIVEN NO
GUIDANCE SO WE GROUPED OUR WAY THROUGH. THE ONLY GUIDANCE I CAN THINK OF
THAT WE EVER GOT WAS A RECOMMENDATION AROUND 2012 THAT
ZONDRA MIGHT BE INTERESTED IN JOINING A STUDY THAT WAS BEING
CONDUCTED BY GEORGETOWN. IS TO LOOK INTO THE
EFFECTIVENESS OF WHAT I WOULD CALL BRAIN GAMES AND OTHER
INTELLECTUAL STIMULANTS. SO WE SIGNED UP FOR THAT OR SHE
SIGNED UP FOR THAT. MY EXPERIENCE WITH SUPPORT
GROUPS WAS THAT I THOUGHT THAT I COULD DO IT ALONE. WHICH WAS A MISTAKE IN
RETROSPECT. BUT I WAS STUBBORN I HAD FRIENDS
PUSHING ME TO THINK ABOUT SUPPORT GROUPS SO FIRST THING I
DID IS REACH OUT TO EMPLOYEE SUPPORT NETWORK, AT MY EMPLOYER,
I WAS NOT DRAGGED TO THE CIA. THEY DIRECTED ME TO A SUPPORT
GROUP BUT IT TURNED OUT IT WAS ORIENTED TOWARD ELDER CARE
ISSUES, NOT DEMENTIA ISSUES. BUT AT LEAST IT BROKE THE ICE
FOR ME. NEXT STEP, A YEAR LATER NOW UP
TO 2014, VERY GOOD FRIEND OF MINE, PERSON WHOM I HAD KNOWN
THROUGH THE FOREIGN SERVICE COMMUNITY, HAD A FRIEND WHO WAS
ON THE BOARD AT IONA SENIOR SERVICES WHO SAID WHY DON’T YOU
CHECK OUT IONA SENIOR SERVICES? SO I DID IT INITIALLY, AND I
SIGNED ON FOR AN ALZHEIMER’S SUPPORT GROUP FACILITATED BY A
PERSON FROM IONA SENIOR SERVICES AND ALSO IN ASSOCIATION WITH THE
ALZHEIMER’S ASSOCIATION. I REALIZED THROUGH THAT THAT
IONA PROVIDED SERVICES CAN BE APPLICABLE TO MY WIFE’S NEEDS,
SO THE NEXT THING WE DID IS I USED MY EXPERIENCE TO PERSUADE
HER THAT IT WOULD BE USEFUL FOR BOTH OF US TO JOIN A PARTNER
CAREGIVER AND PATIENT, SUPPORT GROUP WHICH WAS HELD BY IONA HOW
THAT WORKS AND STILL DOES IS THAT YOU HAVE A JOINT SESSION
WITH A LITTLE BIT OF AN ICE BREAKER, THEN YOU BREAK INTO TWO
GROUPS. YOU HAVE THE PERSON WITH
DEMENTIA IN ONE GROUP DOING ESSENTIALLY I GUESS GENTLE
MEMORY GAMES, THEN THE OTHER GROUP SUBPOENA THE CAREGIVER AND
THAT’S AN OPPORTUNITY TO BOTH NETWORK AND DECOMPRESS. THROUGH THAT, THAT’S THE POINT
WHICH I DISCOVERED THE WELLNESS AND ARTS CENTER. SIDE OF IONA SENIOR SERVICES. I SEGUED MY WIFE FROM THE JOINT
SUPPORT GROUP INTO THE WELLNESS AND ARTS CENTER WHICH WAS
TERRIFIC FOR HER, SHE WEPT IN LATE 2014, LEFT IN JULY OF 2015
WHEN SHE WENT INTO LONG TERM CARE. YOU’RE WELCOME.>>I WANT TO MAKE SURE WE HAVE A
CHANCE TO HEAR FROM VERONICA. HOW DO WE ENGAGE AND IMPROVE
SERVICING IN CONNECTING WITH LATINOS? IF IT’S DIFFERENT, AND IT IS,
HOW IS THAT DIFFERENT WITH THE MAINSTREAM COMMUNITY? HOW DO WE MAKE THAT TRANSITION?>>I’LL MAKE IT BRIEF BECAUSE
SOMEBODY MENTIONED SOME OF THESE TOPICS CAN BE A FULL DAY
CONFERENCE. WEEK LONG CONFERENCE. FIRST THING IS LANGUAGE ACCESS. IF THE MATERIAL NOT IN SPANISH,
PLEASE ALLOCATE RESOURCES TO HAVE THE MATERIALS IN SPANISH. PLEASE DO NOT USE MACHINE
TRANSLATION. GOOGLE TRANSLATE IS AMAZING BUT
THE CULTURAL NUANCE IS MISSING. DON’T ASK YOUR RECEPTIONIST,
HOUSEKEEPER OR CLEANING CREW TO TRANSLATE IT BECAUSE THEY’RE
BILINGUAL THEY DO NOT SPEAK SUFFICIENT SPANISH LET ALONE
MEDICAL SPANISH DO IT APPROPRIATELY. IT HAPPENS. EVERY DAY. WE’RE BROUGHT TO FIX TRANSLATION
DONE THAT WAY. NUMBER ONE, LANGUAGE ACCESS,
NUMBER TWO CULTURALLY COMPETENT CARE. WHAT THAT MEANS IS WE DO NOT
QUESTION DOCTORS. WE ARE RAISED TO ACCEPT DOCTORS
AS GOD LIKE. SO IT TAKES US A LONG TIME TO
QUESTION THEM. WERE YOU AS AN AMERICAN WHAT
DOES THAT MEAN? WHAT IS NEXT STEP? WHAT CAN I DO NEXT? HISPANICS ARE TAUGHT TO BE RESPECTFUL SO THE DOCTOR WILL
SAY WE’RE DIAGNOSING YOUR MOTHER, YOUR GRANDMOTHER WITH
ALZHEIMER’S OR WHATEVER TERMINOLOGY YOU USE, DO YOU HAVE
ANY QUESTIONS? WE’RE GOING TO STAIR AT THEM WE
WILL NOD AND WALKING OUT SO CULTURALLY COMPETENT CARE, MARY
YOU SAID I’M CARING, THREE PART HEALTHCARE. THAT HAS TO BE PART OF THE IT,
THAT IS NOT BEING ADDRESSED. LASTLY THE TRAUMA TIED TO
CURRENT ENVIRONMENT, WE ARE VILIFY IN THE MEDIA AND IN THE
PRESS, HISPANICS ARE BEING TARGETED. NOT A POLITICAL STATEMENT AT
ALL. MEANING OUR COMMUNITY IS HEARING
THIS MESSAGE. SO WE DO NOT COME OUT. I CAN’T SAY THIS ENOUGH. YOU WILL HAVE A BEAUTIFUL
SUMMIT, BEAUTIFUL AFFAIR, BEAUTIFUL WORKSHOP, YOU HAVE
SPANISH AND SPANISH MATERIALS AND BECAUSE WE DON’T KNOW WHO
YOU ARE WE DON’T TRUST YOU. WE’RE NOT GOING TO COME. SO THIS INFORMATION IS MISSING
FOR THE UNACCULTURATED HISPANIC. SO RAISE YOUR ARMS FAR AND WIDE,
ACCULTURATION IS A SPECTRUM, I UNDERSTAND AMERICANS PROCESSES
CULTURE, YOU CAN SEEK SPEAK TO ME LIKE I SPEAK TO YOU, I’M GOOD
BUT WE’RE TAKING LATINOS FIVE TO SEVEN YEARS INTO MIGRATION IN
THE UNITED STATES. THEY ARE UNACCULTURATED, THAT
HAS TO BE SPANISH DOCUMENT INNOCENT, HAS TO BE MORE
GRASSROOTS, A LOT MORE HANDS ON. THERE’S A LOT MORE WE CAN TALK
ABOUT BUT I KNOW WE’RE OUT OF TIME. THANK YOU.>>AND I AM CHECKING IN ON THE
TIME. IT’S 10:45 AND I’M NOT SURE HOW
MUCH MORE TIME OUR PANEL HAS.>>WE HAVE ABOUT TEN MORE
MINUTES.>>WONDERFUL SO I’M GOING TO
INVITE YOU THE FOLKS WHO HAVE BEEN LISTENING IN FROM THE
COUNCIL TO ADDRESS OUR PANEL, IF YOU HAVE IN ANY QUESTIONS ABOUT
WHAT THEY HAVE SHARED THIS MORNING OR ANY COMMENTS.>>IN MY PERSONAL EXPERIENCE
DEALING WITH MY MOM, I HAD A UNIQUE CHALLENGE BECAUSE THEY
WERE MARRIED FOR 55 YEARS BEFORE MY MOM PASSED. AND THEY I’M ONLY CHILD. SO CULTURE PIECE E VERONICA, IS
VERY,VERY IMPORTANT. THEY DIDN’T QUESTION DOCTORS
EITHER. ESPECIALLY MY DAD. HE WAS JUST A SOUTHERN BOY FROM
NORTH CAROLINA. BUT THAT’S A SHARED DYNAMIC. I THINK THAT I CAN’T
OVEREMPHASIZE THE IMPORTANCE OF GETTING THE INFORMATION TO THAT
FIRST LINE OF HEALTHCARE THE GERONTOLOGIST, YOU GOT TO BE
EDUCATED ON SO MANY LEVELS, CULTURALLY, ET CETERA. BECAUSE THERE’S THERE’S REALLY
NO UNIFORM APPROACH BECAUSE OF THE DIFFERENT NUANCES, BECAUSE
OF PEOPLE’S PERSONAL CONDITIONS BUT THERE HAS TO BE SOME
STANDARD THAT ALL PHYSICIANS USE TO ADDRESS THIS. THIS IS MY FOURTH YEAR. I’M HEARING THE SAME THING FOUR
YEARS LATER.>>SOMETHING NEEDING TO BE
CLARIFIED IS CULTURE AND DIVERSITY IS NOT ETHNICITY. IT’S RELIGION, IT’S GEOGRAPHICAL
UPBRING, FARM VERSUS URBAN. ALL THESE LAYERS OF DIVERSITY
IMPACT HOW WE ABSORB INFORMATION. WE THINK IF SOMEONE, A
PHYSICIAN, A HEALTHCARE PROVIDER GOES THROUGH DIVERSITY TRAINING,
THOSE 30 MINUTE LINE COURSES THAT YOU CLICK THROUGH WHILE
DOING 47 OTHER THINGS, THAT’S INSUFFICIENT. IT ABSOLUTELY IS INSUFFICIENT. I WOULD LIKE TO FOLLOW-UP ON
THAT. WHEN WE PUT TOGETHER ONE OUR
PUBLICATIONS, WE NOTED THAT THERE WERE VERY DIVERSE PHOTOS
IN THE PUBLICATION. MY RESPONSE WAS THIS DOES NOT
EQUATE TO CULTURAL COMPETENCY. WE HAVE LOTS OF CULTURES
REPRESENTED IN HERE. BUT UNLESS WE DO SOMETHING TO
MAKE SURE THAT THIS INFORMATION WE ARE PRODUCING IS CULTURALLY
RICH PEOPLE DOWN’S SYNDROME ARE NOT ONLY WHITE PEOPLE, PEOPLE
WITH DOWN SYNDROME ARE THERE’S HIGH INCIDENCE IN THE HISPANIC
AND ASIAN POPULATION. SO WE HAVE TO BE ABLE TO SPEAK
TO A VARIETY OF CULTURES AND IT NEEDS TO BE MORE THAN JUST
PUTTING A PICTURE IN A BOOK TO INDICATE THAT WE UNDERSTAND
THAT. IF I CAN JUST JUMP IN QUICKLY,
ANGELA, NOT TO PUT TOO MUCH ON YOUR SHOULDERS BUT THIS IS
ANOTHER ASPECT OF THE NOMENCLATURE QUESTION THAT I
THINK IS DEFINITELY ACROSS THE THREE SUMMITS. THE NEXT ONE.>>AGREE.>>AS Y’ALL HAVE BEEN SPEAKING, I’M WRITING NOTES RELATED TO
THAT, AS WE’RE PREPARING FOR THIS DECEMBER WORKSHOP. WE HAVE GOT TO BE ABLE TO LOOK
THROUGH THE LENS OF CLINICIAN, RESEARCHERS, CARE PROVIDERS, THE
FAMILIES THAT ARE LIVING WITH DEMENTIA AND ALL OF
HETEROGENEITY THAT WAS EXPRESSED EARLIER TODAY.>>I JUST WANTED TO SAY TOO, I
WAS GRATEFUL FOR THE COMMENT A FEW MOMENTS AGO ABOUT THE
COMMONALITY OF AMONG DIFFERENT CULTURES, OF NOT PROBABLY
RELUCTANCE TO SEE CAREGIVERS AND ALSO NOT QUESTIONING CAREGIVERS,
IN THE CULTURE THAT I COME FROM. WHICH ISN’T ANYTHING THAT ANYONE
IS GOING TO NOTICE WHEN I WALK INTO THE ROOM, THERE’S ABSOLUTE
RELUCTANCE, AND QUESTIONING THE DOCTOR DEFINITELY NOT.
AND ON TOP OF THAT, THE DOCTOR THEMSELVES LIVE IN THAT CULTURE
AND THAT IMPACTS HOW THEY ARE HANDLING THINGS. I THINK SOME OF THESE THINGS
AREN’T NECESSARILY VISIBLE OR EVEN CAPTURABLE IN PICTURES.>>I ALSO WOULD LIKE TO DOVE
TAIL ON THAT BY SAYING I THINK AGE IS A FACTOR TOO IN TERMS OF
THIS WHOLE CULTURAL ISSUE. RICHARD, THE GENTLEMAN FROM
MYIER SLIDE THAT DIED AT AGE 51 LIVED WITH PARENTS IN THEIR’
90s AND RICH BECAME AND JOINED THEIR FAMILY WHEN HE WAS FIVE
YEARS OLD AND THEY TOOK CARE OF THEIR BIOLOGICAL CHILD. RICHARD’S PARENTS FOUND IT HARD
TO QUESTION PHYSICIAN, I THINK THAT’S AGE RELATED AS WELL. SO THEY HAD A VERY HARD TIME
SPEAKING UP ABOUT MEDICATION WHEN HE WAS TREATED FOR SEIZURES
AND THEY FOUND IT REALLY DIFFICULT, THEY DIDN’T WANT THE
DOCTOR TO BE JUDGING THEM OR PUNISH RICHARD FOR THEIR VOCAL
EXPRESSION OF CONCERN. THIS TAKES ON VERY MANY FORMS.>>THANK YOU. DO I HAVE TIME FOR ONE MORE
QUESTION? LAURA.>>THANK YOU. FIRST I WANT TO THANK ALL
PANELISTS AS VERONICA SAID THE END USER PERSPECTIVE EXPERIENCE
AS PART OF WHAT WE HAVE TO REALLY LISTEN CAREFULLY TO AND
IT ABSOLUTELY INFORMS THE RESEARCH DIRECTIONS AND POLICY
AS IT DOES INFORM OUR DISCUSSIONS HERE. SO I WANT TO THANK YOU FOR BEING
WILLING TO SHARE YOUR PERSONAL EXPERIENCES WITH VERY PROFOUND. I WANTED TO MAKE TWO COMMENTS,
ONE, I WAS STRUCK BY THE THEMES THAT EMERGED FROM ALL OF YOUR
DISCUSSIONS THAT DID RESONATE WITH OUR CARE SUMMIT THAT WE HAD
IN OCTOBER. AND IN THAT CARE SUMMIT WE DID
TALK ABOUT THE NEED FOR RESEARCH ON NAMING AND FRAMING
NOMENCLATURE BUT ALSO STIGMA ADAPTATION PROCESSES. THESE WERE AREAS IN CONSTRUCTS
THAT WERE RAISED IN PARTICULAR BY THE STAKEHOLDER GROUP PEOPLE
LIVING WITH DEMENTIA. SO WE’RE HOPING FOR THE NEXT
CARE SUMMIT WHO HAVE STARTED A SCIENTIFIC TRAJECTORY ON SOME OF
THESE CONCEPTS AND CONSTRUCTS AND TO SEE WHERE WE ARE AT. I’M ALSO STRUCK THAT WE HAVE
NUMBER OF THEMES THAT EMERGE, NEED TO INFORM NEXT CARE SUMMIT. WE WERE UNABLE TO ADDRESS I
THINK IN DEPTH LIVING ALONE, WE PURPOSEFULLY DECIDED TO TAKE THE ISSUE OF DIAGNOSIS AND THAT
EXPERIENCE THAT EACH OF YOU SHARED WE FELT REQUIRED A WHOLE
SUMMIT IN ITSELF AND SO WE HAVE TO AS A COUNCIL REVISIT HOW TO
TACKLE THIS, IT IS ONE OF THE GOALS OF THE PLAN AND WE JUST
DIDN’T FEEL WE COULD DO JUSTICE ON THIS ISSUE IN TERMS OF ALL
ISSUES YOU RAISE AND THEN THE RESEARCH TRAJECTORY THAT NEEDS
TO PROCEED RAPIDLY. THE OTHER THING IS AS A COUNCIL
IN TERMS OF THE DIAGNOSTIC EXPERIENCE, I WANT TO REVISIT
THIS WHEN WE TALK RECOMMENDATIONS BECAUSE I’M NOT
SURE WE HAVE HAD METRICS AND HOW WE WOULD EVALUATE THOSE METRICS
IN TERMS OF REDUCING THE BURDEN OF GETTING THE DIAGNOSIS FOR
DIFFERENT GROUPS AS WELL AS INCREASING THE POSSIBILITY OF
HAVING ACCESS TO DIAGNOSIS. SO I THINK THIS IS A VERY BIG
ISSUE. THEN MY LAST COMMENT HAS TO DO
WITH THE STRONG THEME OF WORK FORCE PREPARATION. SO WE NEED THAT PAPER. TO HELP MOVE FIELD FORWARD. ONCE AGAIN I WOULD ENCOURAGE ALL
OF US TO CONSIDER NOT CONTINUING EDUCATION AFTER THE FACT. BUT HOW ARE WE GOING TO EDUCATE
THE WORK FORCE RIGHT NOW WHO ARE IN OUR MEDICAL SCHOOLS, WHO ARE
IN OUR NURSING PROGRAMS, WHO ARE IN OUR OCCUPATIONAL THERAPY
PROGRAMS, IN OUR PHYSICAL THERAPY PROGRAMS, PHYSICIAN
ASSISTANTS AND SO FORTH, THEY CAN PLAY A CRITICAL ROLE AND
THEY ARE NOT ACTUALLY HAVE ALL THE INFORMATION THAT THEY NEED
AND THE MATERIALS THEY NEED SO EDUCATION HAS TO CHANGE AT
GROUND LEVEL AS SOON AS POSSIBLE. HOW WE THINK ABOUT THAT AS A
COUNCIL IS VERY IMPORTANT. WE MAY WANT TO CONSIDER HAVING
SOME OF THE PROFESSIONAL GROUPS COME IN TO TALK ABOUT THEIR
COMPETENCIES AND ACCREDITATION REQUIREMENTS AND HOW CULTURAL
COMPETENCE AND DIVERSITY AND DEMENTIA IN PARTICULAR FIT SO
FORTH. THAT WOULD BE IMPORTANT. THE OTHER SO THAT WAS NOW I
WILL SAY ONE OTHER THING. I THINK I WOULD LIKE TO DISCUSS
WITH THE COUNCIL ACTUALLY HAVING THE FRAMEWORK INSTITUTE COME IN,
BECAUSE THAT HAS BEEN WHAT WE HAVE BEEN TALKING ABOUT, NAMING
AND FRAMING ALL DIFFERENT WAYS.>>LAURA CAN WE GIVE KATIE THE
FINAL WORD?>>I’M HERE CYNTHIA. MY FINAL WORD IS THANK YOU. THANK YOU FOR TO ALL OF OUR
PANEL MEMBERS, FOR HIGHLIGHTING THE DIFFERENCES BUT ALSO
BRINGING FORTH WHAT WE KNOW TO BE THE SAME, THROUGH EVERYONE’S
SPEECHES THROUGH THEIR TALKS, WHAT I CAN HEAR IS WE NEED TO
FOR DIGNITY, FOR RESPECT, FOR THE OPPORTUNITY FOR LOVE AND
CONNECTION. TO KNOW THEY WILL BE INCLUDED,
THERE’S PLACE FOR THEM. SO THANK YOU ALL FOR THAT.>>THANK YOU, KATIE. THANK YOU, EVERYBODY. [APPLAUSE]>>THANK YOU CYNTHIA AND
PANELISTS AGAIN.

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