>> ALRIGHTY. IF WE CAN REASSEMBLE HERE, WE'LL GET STARTED FOR THE AFTERNOON.
GOOD AFTERNOON. ARE OUR TELEPHONE COLLEAGUES BACK ABOARD? >> WE ARE BACK.
>> GOOD. THANK YOU.
NOW WE ARE GOING TO MOVE TO THE SECTION ON PUBLIC COMMENTS AND ROHINI IS GOING TO TAKE
IT FROM HERE, PERHAPS. WE MAY JUGGLE SOME THINGS ON THE PROGRAM AROUND
THIS AFTERNOON. THE HARD TIME THAT WE CANNOT VIOLATE IS DR.
KOROSHETZ CAN ONLY BE HERE AT 3:00 SO WE MAY JUGGLE SOME THINGS THAT WERE TO OCCUR AFTER
HIM BEFORE HIM, SO FAIR WARNING TO SAY THE FEDERAL WORK UPDATES MAY COME EARLIER, ALTHOUGH
SHARI WILL BE BACK. SHE HAD TO STEP OUT FOR A BIT AND WILL BE
BACK LATER. SO ROHINI
>> GREAT, THANK YOU. WE HAVE A FEW PUBLIC COMMENTS TODAY.
I'M GOING TO READ THE PERSON A NAME OUT LOUD AND THEN WE HAVE MATT UP NEXT.
THE FIRST PUBLIC COMMENT IS FROM MICHAEL. I SERVE ON MANY BOARDS, UNFORTUNATELY, I MISS
A LOT OF WHAT IS SAID WHEN PEOPLE ARE SPEAKING. IT'S HARD TO ADMIT THAT THAT IS THE TRUTH.
I HAVE SPOKEN TO OTHERS WHO HAVE DEMENTIA AND THEY TELL ME THE SAME STORY.
BECAUSE OF THAT REASON ALONE, I BELIEVE IT IS UNJUST TO HAVE ONLY ONE PERSON LIVING WITH
THE DISEASE ON ANY BOARD. IT PUTS THEM IN AN FAIR POSITION AND CONTRIBUTE
TO NOT GETTING THE PROPER FEEDBACK WHICH IS WHY YOU ASK US TO SERVE ON THE COMMIT ON THE
FIRST PLACE. I STRONGLY RECOMMEND YOU ADD AT LEAST ANOTHER
PERSON LIVING WITH DEMENTIA TO THE COUNCIL. YOU HAVE TWO REPRESENTATIVES FOR CAREGIVERS
ALTHOUGH I'M NOT SURE WHY YOU THINK THEY NEED A LARGER PRESENCE THAN THOSE YOU'RE TRYING
TO HELP. THEY DID HEAR MY REQUEST AT THE COUNCIL.
IF YOU'RE LOOKING TO FOLLOW THE BEST MODEL, LOOK AT DEMENTIA ACTION ALLIANCE.
IS THERE A NINE DESIST INDIVIDUALS LIVING WITH DEMENTIA.
SINCE I BELIEVE YOU'RE SUPPOSED TO BE THE LEADER IN THIS MISSION, SHOULDN'T YOU START
BY SETTING THE RIGHT EXAMPLE FOR OTHERS TO FOLLOW?
ON ANOTHER NOTE IT WOULD BE GREAT IF I COULD SPEAK ON THE PHONE OR INTERNET, INSTEAD I
NEED TO WORK COUNTLESS HOURS TO CREATE MY COMMENTS AS MY FAMILY IS NO LONGER READABLE.
SO YOU CAN FIX THE TRACK BEFORE THE NEXT MEETING. MATT?
AT THE PODIUM. >> NEXT MATH YOU SHARP.
>> GOOD AFTERNOON. NICE TO SPEAK AFTER LUNCH.
I'M THE CO-CHAIR OF THE NATIONAL TASK GROUP ON INTRECOLLECTUALS WITH DEMENTIA PRACTICES
AND I WANTED TO TAKE MY TIME. I STILL HAVE 2-3 MINUTES TO COVER THE AREAS.
THE FIRST AREA WE WANT TO COVER IS THE CMS RULES, THE ONES THAT DEAL WITH THE COMMUNITY
SETTINGS. WHAT WE ARE FINDING FROM OUR FOLKS IN THE
FIELD AND INTELLECTUALS PROVIDE WITH US DEALING WITH DEMENTIA, THE RULES ARE VERY VAGUE AND
SILENT ON THE ISSUES AND WHAT IS HAPPENING IS BECAUSE ONLY ONE STATE, TENNESSEE, THAT
HAS THE STATE PLAN APPROVED, THE OTHER IS A LITTLE ARE KIND OF DITHESHING IN TERMS OF
HOW TO PROVIDE GUIDERS TO PROVIDERS WHO ARE AFFECTED BY DEMENTIA.
AND OUR ROLE BASICALLY IN OUR PURPOSE TO TRY TO CREATE COMMUNITY INTEGRATED PROGRAMS, SERVICES
FOR PEOPLE WITH DIMAINTENANCIA. AND THE RULES, BECAUSE THE WAY THEY ARE STRUCTURED,
THEY THEN PROVIDER SECTOR IN TERMS OF HOW TO INTERPRET THEM SO THAT THEY CAN PROVIDE
SERVICES IN THE COMMUNITY AND MEET THE OBLIGATIONS OF THE RULES WITHOUT BEING CONSTRAINED BY
SOME OF THESE THINGS. SO WHAT WE ARE ASKING FOR, IF YOU BEAR WITH
ME, IS TO HAVE SOME TYPE OF A MEETING WHERE WE MIGHT BE MEET WITH CMS AND THE TRY TO COME
UP WITH AN INTERPRETIVE GUIDELINES AND RECOGNIZE THE FOCUS OF THE RULE IN TERMS OF THE AVENUE
FOR DEALING WITH THIS ISSUE IS AROUND THE PROGRAM PLANNINGS OF INDIVIDUAL PROGRAM PLANNING.
AND IF WE COULD COME UP WITH A LETTER, FOR EXAMPLE, ON HOW THE STATES MIGHT GUIDE THE
WORK IN THE STATE PLAN, IN TERMS OF HOW PROVIDERS MIGHT DELIVER SERVICES IN DEMENTIA AND DO
A WORK AROUND USING THE PROGRAM PLAN, CONCEPT, IT WOULD BE VERY USEFUL.
SO WE ARE HOPE -- AND I NOTICE WHEN I WAS LOOKING AT THE LONG TERM LTSS RECOMMENDATIONS
NUMBER 3, TALKS ABOUT EVALUATING THAT WHOLE IMPACT.
BUT WE ARE ASKING FOR RELIEF BEFORE YOU GOAT THAT POINT BECAUSE THAT'S GOING TO HAPPEN
FOR A WHILE AND THE STATES ARE WRESTLING WITH DOING STATE PLANS.
SO IF THEY COULD HAVE SOMETHING TO GUIDE THEM THAT WOULD BE VERY USEFUL.
THAT IS ONE THING. I ALSO WANTED TO POINT OUT OUR NATIONAL TASK
GROUP HAS BEEN VERY ACT ENOUGH TRYING TO COMPLY WITH RECOMMENDATIONS IN TERMS OF ENHANCING
THE WORKFORCE AND WE I HAVE NATIONAL CURRICULUM IN PLACE.
AND WE HAVE BEEN ASKED TO DO WORKSHOPS AND USING THE INITIAL CURRICULUM ACROSS THE COUNTRY
AND BEEN VERY SUCCESSFUL IN DOING THAT. AND WE HAD AT THIS THE POINT 570 WORKERS WHO
ATTENDED A NUMBER OF THE WORKSHOPS AND WE HAVE GOT A NUMBER OF SCHEDULED FOR THIS YEAR.
SO WE ARE VERY PLEASED TO DO THAT AND IT IS FILLING A VOID FOR THE AGENCIES OF US SERVING
PEOPLE WITH DEMENTIA AND HAVE INTELLECTUAL DISABILITIES.
THE OTHER PART I WANTED TO MENTION IS THAT WE HAVE BEEN VERY PLEASED TO WORK WITH ACL
IN TERMS OF THE GRANTEES THAT THEY HAVE GOTTEN THROUGH THE A DI PROGRAM, ALZHEIMER'S DISEASE
INITIATIVE AND SEVERAL FOCUSING ON INTELLECTUAL DISABILITIES TO PROVIDE THEM WITH INFORMATION,
GUIDANCE AND USE THE MATERIALS, INCLUDING OUR SCREENING INSTRUMENT WHICH WE HAVE.
SO THAT IS A PLUS AND WE ARE VERY PLEASED THAT THIS PROGRAM IS COMING TO US FOR THAT.
THE OTHER THING I WANTED TO MENTION IS THAT REVERSE SUPPORT OF THE PROPOSAL FOR THE RESEARCH
SUMMIT ON CARE AND SERVICES. WE WANTED TO STRESS THE FACT THAT THERE ARE
-- SOME OF THE FOLKS THAT ARE PROVIDING HOME BASED CARE FOR PEOPLE WITH DISABILITIES ARE
LONG-TERM CARE GIVERS AND THEY HAVE A LOT OF EXPERIENCE IN TERMS OF PROVIDING CARE GIVING
UNDER CERTAIN CIRCUMSTANCES AND WE WOULD LIKE TO SEE THAT CONSTITUENT INCLUDED IN THE SUMMIT
AND RESEARCH ON THE SUMMIT BECAUSE THERE WAS A LOT OF RESEARCH THAT HAS BEEN DONE AROUND
CARE GIVING OVER A LIFESPAN AND A LOT OF CONTRIBUTIONS TO THAT TO PROVIDE TO THE DEBATE GOING ON
IN TERMS OF THE GOOD MOD TOLLS USE FOR CARE GIVING.
AND LASTLY, I WANTED TO MENTION, I WAS PLEASED TO SEE DR. PETERSEN'S PRESENTATION THIS MORNING
ON NOMENCLATURE. WE HAVE WORKING WITH ALZHEIMER'S SCOTLAND
AND UNIVERSITY OF THE WEST OF SCOTLAND, TO HOLD A SUMMIT ON INTELLECTUAL DISABILITIES
AND DEMENTIA IN OCTOBER IN GLASGOW WHERE WE WILL COVER A NUMBER OF ISSUES AS A NEED TO
HAVE CONSISTENT LANGUAGE IN THE USAGE OF TERMS IN THAT FIELD.
SO LOOKING AT ADVANCED DEMENTIA AND END OF LIFE PRACTICES AND FAMILY CAREGIVERS SUPPORTS
AND ALSO FOCUSING ON HOW ADVOCACY WILL BE TAKING PLACE OR COULD TAKE PLACE IN THE VARIOUS
COUNTRIES IN THE WORLD THAT WOULD INCLUDE INTELLECTUAL PLAYERS.
THAT'S OUR SUMMIT GOAL AND WE ARE HOPING TO HAVE A WHITE PAPER THAT COMES OUT OF THAT
AND THE PROCESS TO ADI AND W.H.O. AND -- OTHER VEHICLES WE HAVE.
SO THAT IS AN INTERNATIONAL EFFORT AND THE WE HAVE A BENEFIT FOR THE STATES OUT OF THAT.
SO THOSE ARE MY POINTS. WE HAVE A HANDOUT IN YOUR PACKET WHICH COVERS
MORE DETAIL PROBABLY MORE ELOQUENTLY THAN I HAVE BEEN TALKING FAST TO THE GET MY TWO
CENTS IN. THANK YOU VERY MUCH.
>> THANK YOU, MATT. MATT SHARP.
ERIC HOPKINS? >> HELLO.
MY NAME IS MATT SHARP PROGRAM MOTHER-IN-LAW FOR THE ASSOCIATION FOR FRONTO TEMPO DEGENERATION.
THANK YOU FOR AN OPPORTUNITY TO COMMENT ON BEHALF OF OUR RELATED DEMENTIA.
I WANT TO PREVIOUSLY JUST MENTION THE HIGHLIGHTS FROM THE ADRD SUMMIT FROM THE PERSPECTIVE
OF OUR ORGANIZATION AND FIRST I WANTED TO SAY AS A LONG TIME OBSERVER OF THESE MEETINGS,
IT SEEMED THE PRESENTATION TODAY SOMEHOW MORE ORGANIZED OR EASIER TO FOLLOW.
I DON'T WANT KNOW WHAT IT WAS EXACTLY AND I'M SURE IT WASN'T FOR THE AUDIENCE'S BENEFIT
BUT I APPRECIATED IT AS WELL. SO, FIRST OUR DIRECTOR WAS HONORED TO CO-CHAIR
THE NEW SESSION ON GOVERNMENTAL ORGANIZATION AND WANTED ME TO EXPRESS OUR GRATITUDE FOR
THE OPPORTUNITY TO DEVELOP RECOMMENDATIONS TO PROMOTE BIOMEDICAL RESEARCH AND FACILITATE
RELATIONSHIPS BETWEEN FEDERAL FUNDERS AND THE FAMILIES LIVING WITH OTHER TYPES OF DEMENTIA.
A LOT HAS ALREADY BEEN SAID ABOUT THE NOMENCLATURE WORKING GROUP BUT I WANT TO SAY HOW HAPPY
WE ARE TO SEE THAT COME OUT OF THE ADR SUMMIT AS WELL AS BEING INCORPORATED IN THE RECOMMENDATIONS
TODAY. AND I'LL ADD THAT IN ADDITION TO BEING AN
IMPORTANT EXERCISE FOR RESEARCHERS TO CLARIFY THE NOMENCLATURE, THAT WORKING GROUP HAS POTENTIAL
TO ACTUALLY MAKE REAL IMPROVEMENTS TO PEOPLE'S LIVES BECAUSE ONE OF THE ISSUES RELATED TO
LANGUAGE FOR PEOPLE WITH OTHER TYPES OF DEMENTIA THAT DID NOT INVOLVE MEMORY LOSS IS THEY DON'T
KNOW HOW TO FIND THE RESOURCES AND HELP THAT IS OUT THERE FOR THEM.
SO BY CLARIFYING LANGUAGE, THERE IS A POTENTIAL TO MAKE A DIFFERENCE IN PEOPLE'S LIVES.
AND FINALLY TOO CONVEY HOW EXCITING THAT RESEARCH SUMMIT WAS, BECAUSE SO MUCH PROGRESS BEING
MADE AND ESPECIALLY FTDS. ONE OF THE THINGS THAT THE ADR SUMMIT MADE
CLEAR TO ME THIS YEAR IN PART BAUDS OF THE MIXED ETIOLOGIES IS THAT RESEARCH AND RELATED
DEMENTIAS REALLY OFFERS OR IS CRITICAL FOR FINDING TREATMENT CENTERS FOR ALL TYPES OF
DEMENTIA, INCLUDING ALZHEIMER'S. EVEN THOUGH WE CATEGORIZED IT, IT REALLY BENEFITS
ALL TYPES OF DEMENTIA AND IS AN IMPORTANT PART OF ACCOMPLISHING THIS.
THANK YOU. >> THANK YOU.
ERIC? >> I'M BOB POPS, BOARD MEMBER WITH THE ASSOCIATION
OF FRONTO TEMPORAL DEGENERATION STRAIGHT OUTSIDE OF PHILADELPHIA.
FRONTAL TEMPORAL DEGENERATION IS EARLY-ONSET DEMENTIA, SEX, BEHAVIOR AND LANGUAGE AND SPEECH.
I'M PLEASED TO ANNOUNCE THAT IN MID-MAY, WE WILL HAVE OUR NATIONAL EDUCATION CONFERENCE
IN MINNEAPOLIS AND OUR KEYNOTE SPEAKERS WILL BE BRAD AND DAVE, ASSOCIATES OF RON PETERSEN'S
AT THE MYOCLINIC. AND FT DOES. VERY PERSONAL TO ME.
MY FATHER HAD FTD. I WAS A CAREGIVER.
MY MOM WAS A FOUNDING BOARD MEMBER OF THE ORGANIZATION AND NOW I'M ONBOARD AS WELL.
BUT AS MUCH AS I'M HERE TO SNEAK ON BEHALF OF FTD AND AFTD, AS FAR AS I'M CONCERNED,
WORKING HAND-IN-HAND WITH ALZHEIMER'S ASSOCIATION AND ALL RELATED DEMENTIAS AND WORKING TOGETHER
AS A TEAM AND LOOK FORWARD TO GET TO A CURE AS QUICKLY AS HUMANLY POSSIBLE.
I WAS ON THE FRONT LIONS AS A CAREGIVER FOR MY FATHER AND I'M VERY UNDERSTANDING OF WHAT
THE PATIENT GOES THROUGH AND WHAT THE FAMILIES AND CAREGIVERS GO THROUGH AS WELL.
SO, I JUST AM HERE TO SPEAK ON BEHALF OF EVERYONE HERE IN THIS ROOM AND I JUST WANT TO GREATLY
THANK THE COUNCIL FOR ALL THE WONDERFUL WORK THAT THEY ARE DOING.
THANK YOU VERY MUCH. >> THANK YOU.
ERIC? >> GOOD AFTERNOON.
MY NAME IS ERIC SO COWITH THE ALZHEIMER'S FOUNDATION OF AMERICA.
LATER THIS AFTERNOON, THE ADVISORY BOARD WILL HEAR ABOUT A PROPOSAL TO HOLD A RESEARCH SUMMIT
ON CAREGIVER SERVICES. AFA SUPPORTS THE IDEA OF A CAREGIVER SUMMIT
AND TO BE TRULY SUCCESSFUL, THE DEPARTMENT OF HEALTH AND HUMAN SERVICES NEEDS TO BE GAUGED
FULLY PARTICIPATE IN THE PLANNING AND EXECUTION OF THIS EVENT.
INNOVATIVE CARE MODELS THAT INCORPORATE SPECIALIZED DEMENTIA TRAINING AND SUPPORTS HAVE THE POTENTIAL
TO SAVORY SOURCES BY LOWERING HOSPITAL ADMISSIONS, REHOSPITALIZATIONS, AND EMERGENCY ROOM VISITS
AS WELL AS GOING PLACE INDEPENDENT MORE COASTALLY INSTITUTIONAL SETTINGS.
FOR EXAMPLE, EMPOWERING CAREGIVERS TO CONDUCT ENVIRONMENTAL ASSESSMENTS WILL LOWER INCIDENTS
OF ALL PRESCRIPTION ADHERENCE TECHNIQUES WILL ENSURE BETTER MANAGEMENT OF CO-MORBIDITIES.
CAREGIVER TRAINING HELPS TO DIFFUSE CONINUTION A PERSON WITH DEMENTIA.
IN ADDITION, THERE ARE OPPORTUNITIES FOR COST SAVINGS.
INDEPENDENT STUDY OF THE MIN SEAT DEMENTIA CAREGIVER PROGRAM PROVIDED TRAINING AND SUPPORT
FOUND THAT IF FULLY IMPLEMENTED ACROSS THE STATE, THE PROGRAM WOULD SAVE NEARLY A BILLION
DOLLARS OVER 15 YEARS. I'M SURE THIS CAN BE ATTESTED TO FOR THAT
PROGRAM. AS ILLUSTRATED IN MINNESOTA, SMALL INVESTMENTS
AND SUPPORTS THAT PROVIDE CAREGIVER TOOLS AND STRATEGIES YIELD MAJOR SAVINGS AND BETTER
OUTCOMES. NOW, THIS IS AN IMPORTANT POINT BECAUSE THE
FINANCE COMMITTEE CONVENED A BIPARTISAN CHRONIC CARE WORKING GROUP LOOKING AT PROPOSALS THAT
SEEK TO INCREASE CARE EFFICIENCIES, PROVIDE BETTER OUTCOMES, HEALTH OUTCOMES, AND LOWER
HOWEVER ALL CARE COSTS FOR MEDICARE BENEFICIARIES WITH CHRONIC CONDITIONS INCLUDING THOSE PEOPLE
LIVING WITH DEMENTIA. GIVEN THIS UPTICK IN INTEREST, NOW IS THE
TIME TO HOLD A CAREGIVER SUMMIT THAT CAN EXAMINE MODELS TO SEE WHAT WORKS BEST, HOW THEY CAN
BE SCALABLE AND IDENTIFY WHERE THERE ARE POLICY GAPS AND I WANTEDDED TO THANK DR. LANE FOR
GOING THROUGH AND TELLING US THIS MORNING WHAT ARE THE REAL BARRIERS OF GETTING THESE
MODELS IMPLEMENTED. AND IF A CAREGIVER SUMMIT CAN GO OUT AND IDENTIFY
THESE MODELS AND IF WE CAN GET PEOPLE FROM THE SENATE FINANCE COMMITTEE TO LISTEN, THEY
ARE INTERESTED OR IN A PLACE TO MAKE LEGISLATIVE CHANGES TO GET US TO WHERE WE WANT TO BE AS
FAR AS ADOPTING MODELS ON A LARGER SCALE. SO WITH THAT, I WANT TO THANK YOU FOR YOUR
TIME AND THE OPPORTUNITY TO PRESENT THESE COMMENTS.
>> THANK YOU. >> ALL RIGHT.
THANK YOU AGAIN TO THE PUBLIC. WE REALLY APPRECIATE THE INSIGHTS AND AS YOU
CAN HEAR FROM THIS MORNING, THAT YOUR COMMENTS OVER THE YEARS REALLY HAVE INFLUENCED THE
BEHAVIOR AND THE JUDGMENTS OF THIS BODY AND HAVE INCORPORATED INTO THE RECOMMENDATIONS
THAT HAVE BEEN MADE. SO THANK YOU AGAIN VERY MUCH.