>> GREAT.
THANK YOU.
WE HAVE THREE TOTAL TODAY, TWO PEOPLE IN THE AUDIENCE, AND I WILL READ ONE OUT LOUD.
FIRST UP THOMAS BUCKLEY, THERE'S A MICROPHONE LOCATED RIGHT UP HERE IN THE FRONT.
>> FIRST TIME I HAVE TO RAISE A MICROPHONE.
[LAUGHTER] FIRST AND FOREMOST, THANK YOU VERY MUCH FOR
EACH AND EVERY ONE OF YOU AND WHAT YOU'RE SAYING TODAY.
I KNOW SO FREQUENTLY IN LIFE WE WONDER HAVE WE REALLY MADE A DIFFERENCE.
AT THE END OF THE DAY, WHAT'S THE BOTTOM LINE?
THE BOTTOM LINE TODAY IS IF YOU HAVE AN INTELLECTUAL DEVELOPMENTAL DISABILITY IN THE UNITED STATES
OR IN EUROPE OVER 50% OF FEMALES DIE 23 YEARS EARLY PREMATURE DUE TO AVOIDABLE CONDITIONS.
MALES 18 YEARS EARLY.
TODAY, THE ALZHEIMER'S ASSOCIATION, YOUR PRACTICE RECOMMENDATIONS ARE INCREDIBLE.
I'M NOT A RESEARCHER.
I'M THE MAYOR OF BUMPKINVILLE, I'M NOT NUMBER ONE.
BUT I CAN UNDERSTAND THOSE PRACTICE RECOMMENDATIONS.
I CAN READ THEM.
WHEN I READ THE HEALTH DEMENTIA COMPONENTS, THERE'S 14 COMPONENTS, I CAN UNDERSTAND THAT.
FOR THE LAST YEAR AND A HALF I TOOK THOSE 14 COMPONENTS AND EVERY GUIDELINE AND CONVERTED
IT OVER TO AN INTELLECTUAL AND DEVELOPMENTAL DISABILITY GUIDELINE FOR OUR FAMILIES.
PERSON CENTERED DEMENTIA CARE BEGINS AND ENDS IN THE FAMILY'S HOME.
WE AS BEST LIFE CAREGIVER GROUPS, THE CAREGIVERS FOR PEOPLE WITH DOWN SYNDROME AND DEVELOPMENTAL
DISABILITY, AVERAGE AGE 79.5.
THEY SAID DR.
BUCKLEY, COME TO MY HOME WHERE THE PROBLEMS ARE.
WHEN WE WENT THERE, DO YOU KNOW THAT OVER 50% OF THE AGING CAREGIVERS HAD MORE COMORBID
CONDITIONS AND WE AVERAGE 5.4 PER PERSON, MORE COMORBID CONDITIONS, 48% HAD DEMENTIA.
WHO WAS CARING FOR WHO?
SO WE REALIZE WHEN THEY FELL ON THE FLOOR, WHEN THEY LOOK AT TODAY, THEY DIDN'T ARTICULATE
ANY OF THESE ISSUES IN A SUPPORT PLAN BUT IN THE DEVELOPMENTAL DISABILITIES WORLD YOU
WOULD NEVER THINK THEY HAVE ALZHEIMER'S DISEASE.
YOU WOULD THINK EVERYTHING'S PERFECT.
UNTIL YOU GO TO THE FAMILY'S HOME.
THEN YOU'RE WRITING A COMPLETELY DIFFERENT DEMENTIA CARE PLAN.
AND IF THERE'S ONE THING THAT I WANT TO LEAVE YOU WITH TODAY IT'S THIS.
THE NEW PARADIGM NEEDS TO BE DEMENTIA, HEALTH CARE ACCOUNTABILITY.
WHO IS ACCOUNTABLE?
SO EVEN THOUGH YOU HAVE THE GUIDELINES AND WE CAN READ THEM, THE MORE THINGS CHANGE,
THE MORE THINGS STAY THE SAME.
UNTIL YOU HOLD SOMEBODY ACCOUNTABLE, NOTHING'S GOING TO CHANGE.
AND I HAVE AS ERIN LONG KNOWS, I WORSHIP ERIN IS MY MENTOR, ERIN POUNDS PEOPLE TO UNDERSTAND
TO CHANGE AND CHALLENGE YOURSELF EVERY DAY, BUT I PROMISE YOU AS YOU TRY TO EDUCATE WITH
BPSD, NUMBER TEN, PEOPLE THAT ARE NOT WILLING TO LEARN AND CHANGE ARE GOING TO PUSH BACK
AS HARD AS YOU PUSH, AND TODAY I KNOW TWO STATES I'M VERY INTIMATE CLOSE WORK WITH,
YOU WON'T FIND YOUNG ONSET ALZHEIMER'S DISEASE ON THE WEBSITE, YOU WON'T FIND DEVELOPMENTAL
DISABILITIES, YOU'RE NOT GOING TO FIND BPSD, AND WE JUST DID, I'LL CLOSE WITH THIS, WE
JUST LOOKED AT 30 PEOPLE RANDOM WITH DOWN SYNDROME, DO YOU KNOW PRIOR TO ALZHEIMER'S
THEY WERE ON FOUR TO FIVE MEDICATIONS, AFTER ALZHEIMER'S DISEASE IT ROSE TO 16 MEDICATIONS,
THE LOWEST ON ANTIPSYCHOTIC WAS THREE, THE HIGHEST WAS FIVE.
I THEN TOTALED THAT FOR 30 PEOPLE, WE SPENT $426,000 ON MEDICATIONS THEY SHOULD HAVE NEVER
BEEN PUT ON.
SO, AGAIN, DEMENTIA HEALTH CARE ACCOUNTABILITY, LET'S START HOLDING PEOPLE ACCOUNTABLE AND
THEN WE'LL START CHANGING LIVES.
>> THANK YOU VERY MUCH.
MATT SHARPE?
>> HELLO, I'M MATT SHARPE WITH THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION.
I WANT TO TRY TO RESPOND TO SOME DISCUSSION THIS MORNING.
IT'S BEEN REALLY FASCINATING BUT FIRST I WANT TO SAY THANK YOU TO THE COUNCIL ONE MORE TIME
FOR TAKING ON THIS ISSUE.
AND FOR MAKING THE CARE AND SERVICES SUMMIT A REALITY AND FOR GIVING THE RECOMMENDATIONS
A HOME.
WELL, I RECOGNIZE THE VALUE OF BIOMEDICAL RESEARCH, I'M ALSO AWARE OF HOW DESPERATE
THE IMMEDIATE NEED FOR BETTER TOOLS AND STRATEGIES FOR CARE IS.
ONE OF THE THINGS I DO A LOT, MOST OF MY TIME DOING IS RESPONDING TO QUESTIONS FROM FAMILIES
AND PEOPLE WITH FTD THROUGH OUR HELP LINE.
ONE OF THE MORE FREQUENT CALLS I GUESS IS FROM PEOPLE LOOKING FOR A DAY PROGRAM, LONG
TERM CARE FACILITY, ASSISTED LIVING, AND IT'S ONE OF MY LEAST FAVORITE QUESTIONS BECAUSE
THERE ARE NO GOOD ANSWERS.
AND I THINK IT'S SAFE TO SAY THAT FOR THE MOST PART, EXISTING CARE AND SERVICES JUST
DON'T WORK FOR FTD AND MOST FAMILIES ARE LEFT TO FIGURE IT OUT ON THEIR OWN.
SO, I WANT TO REITERATE SOMETHING THAT LAURA SAID AT THE BEGINNING OF THIS SESSION THAT
THERE REALLY HAS TO BE MANY BEST PRACTICES.
THERE CAN'T BE ONE BEST PRACTICE FOR ALL TIMES OF DEMENTIA.
AND THAT IS NOWHERE MORE TRUE THAN WITH FTD.
I ALSO MAKE A BRIEF COMMENT ABOUT SOME MEASUREMENTS.
I SAW IN ONE OF THE MODELS THAT INCLUDED A MEASURE OF SOCIAL FUNCTIONING.
I THINK THAT WOULD BE REALLY APPLICABLE TO FTD BECAUSE OF THE AGE OF ONSET PEOPLE FUNCTIONING
IN RAISING CHILDREN, MOST PEOPLE, MOST PEOPLE WITH ALZHEIMER'S MAY NOT BE IN.
ALSO I'M GLAD TO HEAR EVERYBODY TALK ABOUT PERSON CENTERED CARE, AS THE FUNDAMENTAL SORT
OF CORE OF THIS APPROACH.
BECAUSE THAT OF COURSE WOULD MEAN THAT ANYBODY WITH FTD WOULD HAVE THEIR NEED HEARD AND MET.
THE ONE CAVEAT IS THAT ANY BEST PRACTICES REALLY HAVE TO BE EXTENDED TO PEOPLE UNDER
65.
AGAIN, BECAUSE EARLY AGE OF ONSET IN FTD, PROBABLY CLOSE TO MAJORITY OF PEOPLE ARE STILL
WORKING AND UNDER THE AGE OF RETIREMENT.
AGAIN, THANK YOU SO MUCH FOR TAKING THIS ON.
IT REALLY IS AN EXCITING DISCUSSION TODAY.
>> THANKS, MATT.
FINALLY WE HAVE A COMMENT FROM MARY HOGAN WHO UNFORTUNATELY COULD NOT BE WITH US TODAY.
SO I'LL READ IT ON HER BEHALF.
THANK YOU FOR THE OPPORTUNITY TO MAKE A BRIEF PUBLIC STATEMENT TODAY.
I WISH TO REFLECT ON THE PRESENTATION MADE BY DR.
RANDY BATEMAN REGARDING DOMINANT INHERITED ALZHEIMER'S NETWORK DURING THE JANUARY 2018
ADVISORY COUNCIL MEETING.
I WAS TOUCHED BY DR.
BATEMAN'S PRESENTATION.
THE RICH SCIENTIFIC RESEARCH THAT IS FOCUSING ON THIS RARE CONDITION IS PROMISING AND STORY
TOLD OF FAMILIES MOST COMPELLING.
IN PREPARATION FOR THIS STATEMENT I WENT BACK AND LISTENED TO THE JANUARY PRESENTATION.
DR.
BATEMAN REFLECTED ON DESPERATION FAMILIES FEEL AS THEY FACE HIGH PROBABILITY OF DIAGNOSIS.
HE SPOKE OF THE CONCERN INDIVIDUALS IDENTIFIED HAD FOR THEIR CHILDREN AND MOTIVATION TO PARTICIPATION
IN CLINICAL TRIALS BASED ON INCREDIBLY HIGH RISK THAT FUTURE GENERATIONS FACED.
HE NOTED FAMILIES ARE AN ESSENTIAL PART OF THIS RESEARCH AND CONVEYED DEEP RESPECT AND
AUTHENTIC CONCERN FOR COMMUNITY FOR WHOM HE WORKED.
IN HIS PRESENTATION DR.
BATEMAN NOTED THE POSITIVE OUTCOME OF BRINGING FAMILIES TOGETHER TO SHARE INCREASE AT FAMILY
CONFERENCES.
NOTED IMPORTANCE OF CONVERGENCE OF FAMILIES, RESEARCHERS, DOCTORS, GOVERNMENT REGULATORY
REPRESENTATIVES, AND THE PHARMA GUYS.
THE VIDEO FOCUSING ON THE MAN HELPING CHANGE THE FUTURE OUTCOME FOR CHILDREN WAS WINDOW
INTO REALITY.
I EXPERIENCED A BROAD RANGE OF EMOTIONS THAT FLUCTUATED
WITH SADNESS AND CONSTERNATION.
IN THE BRIEF CONVERSATION THAT I HAD WITH DR.
BATEMAN AFTER THE PRESENTATION HE ACKNOWLEDGED THE SIMILARITIES AND EFFORTS THEY HAD MADE
TO SHARE INFORMATION AND PROTOCOLS WITH THOSE DOING RESEARCH ON DOWN SYNDROME.
DR.
HODES REFERRED TO THE TOUCHING CONSORTIUM AND COLLECTION OF HUMAN BEINGS IMPACTED BY
THE RARE FORM OF ALZHEIMER'S DISEASE.
PEOPLE WITH DOWN SYNDROME ARE NOT MOTHERS AND FATHERS, THEY ARE CHILDREN, BROTHERS,
SISTERS, AUNTS, UNCLES, COUSINS AND BEYOND.
THEY ARE A VERY SIMILARLY SMALL GROUP OF PEOPLE DISPROPORTIONATELY IMPACTED BY A DEVASTATING
FORM OF ALZHEIMER'S AT EARLY AGE.
OUR FAMILY'S FEAR AND DESPERATION WITH EACH PASSING YEAR AND CHANGE IN BEHAVIOR, WE'RE
GRATEFUL TO THE COMMUNITY OF RESEARCHERS FOCUSED ON LEARNING MORE ABOUT THE ONSET OF ALZHEIMER'S
DISEASE IN THIS POPULATION AND HOPE THAT ONE DAY THEY WILL DISCOVER OPTIMAL TIME TO INTERVENE
BEFORE BRAIN DAMAGE AND LOSS OCCURS.
RECENTLY THE NATIONAL DOWN SYNDROME SOCIETY HOSTED AN ADULT DOWN SYNDROME SUMMIT IN WASHINGTON,
D.C., THEY INCLUDED MANY SESSIONS DEDICATED TO ALZHEIMER'S DISEASE AND DOWN SYNDROME POPULATION.
THIS IS A VERY IMPORTANT STEP IN BRINGING INDIVIDUALS AND FAMILIES TOGETHER TO SHARE
THEIR STORIES, CHALLENGES AND REALITY.
WE'RE MOST GRATEFUL FOR NDSS FOR HOSTING THIS EVENT, IT WOULD BE SIGNIFICANT TO BRING TOGETHER
FAMILIES, RESEARCHERS, DOCTORS, REGULATORS AND PHARMA GUYS.
I CLOSED BY SAYING INDIVIDUALS WITH DOWN SYNDROME ARE A TOUCHING CONSORTIUM ABOUT WHOM I ONE
DAY HOPE TO HEAR IN THIS SETTING.
>> THANK YOU.
THANK YOU FOR THE PUBLIC COMMENTS.
OKAY.
WE'RE GOING TO BREAK NOW FOR LUNCH.
WE JUST GOT AN EXTRA 15 MINUTES.
AND WE WILL RETURN SHARPLY AT 1:00.
SO FOR THOSE ON THE PHONE PLEASE JOIN US BACK AT 1:00.
THANK YOU.
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