Part 2 – Non Federal and Federal Updates

Part 2 –  Non Federal and Federal Updates


OKAY.
WE’RE GOING TO MOVE ON AS PART OF OUR MORNING OF NEW INITIATIVES AND WE THOUGHT WE WOULD
HAVE A NEW ADDITION TO WHAT WE DO TO GIVE NON-FEDERAL MEMBERS A CHANCE TO UPDATE THE
WORK THEY ARE INVOLVED IN. A CALL WAS PUT OUT TO NON-FEDERAL MEMBERS
TO PRODUCE ANY UPDATES THEY WISH TO SHARE IN THE FORM OF ONE SLIDE AND TO HAVE TWO MINUTES
TO DISCUSS THAT WORK, AND WE’LL HAVE ONE MINUTE OF QUESTIONS.
EACH PERSON WILL HAVE THREE MINUTES. ROHINI WILL BE TAKING CARE OF THE TIMING.
THIS IS WHAT WE OFTEN CALL A SLASH TALK. BUT IT IS A WAY TO SHOWCASE FOR US AND THOSE
WHO ARE VIEWING US AND WHO WILL BE REVIEWING WHAT OUR DELIBERATIONS ARE, WHAT OUR MEMBERS
ARE INVOLVED IN. SO THIS IS NOT IN ANY PARTICULAR ORDER, SO
YOU’LL BE SURPRISED. SO IS THIS THE ORDER?
>>THE ORDER ON THE SLIDE.>>OKAY, THE ORDER IS ON THE SLIDE.
[LAUGHTER]>>OKAY.
WELL, THANKS. I THINK IT’S A TIMELY TRANSITION.
I ALSO WANTED TO THANK SARAH AND WHAT AARP IS DOING.
THIS IS A GOOD SEGUE FROM THAT NEED THAT WAS JUST HIGHLIGHTED BY — IN THE LAST PRESENTATION.
AND SO OVER THE LAST YEAR THERE’S SOMETHING THAT THE STATE OF GEORGIA HAS INITIATED CALLED
THE GEORGIA MEMORY NET, WHICH IS REALLY MEANT TO DEAL WITH DIAGNOSIS AND CARE PART OF THE
MISSION. AND IT’S WITH THE RECOGNITION THAT CURRENTLY
THERE ARE SO MANY PEOPLE WITH SYMPTOMS OF MEMORY LOSS, CONCERNS THEY ARE NOT GETTING
ANY DIAGNOSIS AT ALL. THE NUMBERS UP THERE ARE 385,000 IN GEORGIA
WITH COGNITIVE IMPAIRMENT, 8 5% NOT TREATED, IN GEORGIA ALONE $2 BILLION IN COST, PEOPLE
LIVING WITH MEMORY LOSS AND RELATED CONDITIONS. OUR GOAL WAS TO PUT IN PLACE AN INFRASTRUCTURE
IN THE STATE OF GEORGIA TO IMPROVE THE TRAINING OF PRIMARY CARE PHYSICIANS, INCLUDING REACHING
ALL RESIDENTS IN THE STATE OF GEORGIA AND TRAINING THEM IN WELLNESS, MAKING SURE WE
DELIVER THE TOOLS TO THE PRIMARY CARE PHYSICIANS TO USE SCREENING TOOLS FOR MEMORY LOSS.
OUR GOAL IS ALSO TO SET UP MEMORY CLINICIAN, DIAGNOSTIC MEMORY CLINICS SO PRIMARY CARE
PHYSICIANS OR OTHERS WHO WOULD LIKE HELP, MORE CITIZENS WOULD LIKE HELP GETTING A DIAGNOSIS
IN 60 TO 90 MINUTES ANYWHERE IN GEORGIA WOULD HAVE DIAGNOSTIC MEMORY CLINICS IN PLACE.
MOST IMPORTANTLY TO HAVE A CONSISTENT PLATFORM FOR DELIVERING INFORMATION ABOUT CARE AND
MANAGING CARE, AND USING THE RESOURCES THAT ARE ALREADY AVAILABLE IN THE STATE OF GEORGIA
TO CONNECT THOSE TO INDIVIDUALS AND THEIR FAMILIES.
AND SO AT EACH DIAGNOSTIC MEMORY CLINIC, THERE ARE EMBEDDED SERVICES FROM STATE AGENCIES
TO HELP MAKE SURE EVERYBODY IS CONNECTED. I HEARD THAT BUZZER.
[LAUGHTER]>>THANK YOU SO MUCH.
(INAUDIBLE).>>ONE MINUTE OF QUESTIONS, COMMENTS.>>I’LL ASK A QUESTION.
THIS IS VERY EXCITING AND TO SEE A STATEWIDE INITIATIVE, IT HAS ME THINKING ABOUT SOME
OF THE ASPECTS THAT LED TO THERE BEING COHESION STATEWIDE.
COULD YOU EXPLAIN SOME STEPS THAT BROUGHT YOU TO THIS?
>>THANKS, GARY. SEVERAL OF US DID A LOT OF LOBBYING WITH OUR
STATE LEGISLATORS. WE HAD LEADERSHIP IN THE STATE GOVERNMENT
WHO EMBRACED THE NEED. WE HAVE A GOVERNOR WHO ALSO IS VERY COMMITTED
TO OLDER ADULTS AND HEALTHCARE ISSUES FOR OLDER ADULTS.
AND SO WORK, BASICALLY HELPED EDUCATE THE LEGISLATORS ABOUT A ONE TO TWO YEAR PERIOD,
LAST YEAR PASSED WITH A $4 MILLION A YEAR STATE LINE ITEM BUDGET TO LAUNCH THIS, WE
FINISHED OUR FIRST YEAR. THE FIVE SITES WHICH WERE LAUNCHED ACROSS
USING THE ACADEMIC MEDICAL CENTERS IN THE STATE OF GEORGIA AS PARTNERS TO LAUNCH THESE
CLINICS, USED AS A PILOT. IF SUCCESSFUL WE’LL EXPAND IT.
>>ALLAN, A QUICK QUESTION. DO YOU SEE THIS AS A POTENTIAL MODEL OTHER
STATES CAN REPLICATE AND HAVE YOU PUBLISHED IT YET?
>>WELL, THANKS FOR THE QUESTION. WE LEARN FROM OTHER STATES PUTTING THIS TOGETHER.
NOT THE ONLY INITIATIVE. WE TRY TO TAKE THE BEST PRACTICES AND ADD
TO THEM. AGAIN, WE VIEW THIS AS A NATIONAL MODEL THAT
I’M SURE WILL HAVE, YOU KNOW, SOME CHALLENGES AND WARTS.
WE’D LIKE TO WORK THROUGH THEM AND JUST OFFER BEST PRACTICES WHERE WE LEARN THEM TO OTHER
STATES.>>THANK YOU.
OKAY. NEXT UP OH, SORRY.
GARY.>>OKAY, GREAT.
THANKS. I
WILL HOPE THAT NEXT YEAR I OR ANOTHER MASSACHUSETTS PERSON WILL BE ABLE TO SPEAK ABOUT STATEWIDE
INITIATIVES THERE. THERE’S LEGISLATION THAT’S JUST LEFT THE SENATE
FOR AN OMNIBUS ALZHEIMER’S BILL, SO WE’RE IF THERE’S ANYONE THERE IN THE RECONCILIATION
COMMITTEE TODAY IN MASSACHUSETTS. YOU COULD MOVE THAT FORWARD, THERE’S A DEADLINE
OF A COUPLE DAYS FROM NOW. EYES ON THAT.
SO I’M SPEAKING ABOUT MY ROLE INDIVIDUALLY AT HEBREW SENIOR LIFE, I’M NOT IN THIS POSITION,
LESS THAN A YEAR. AND HEBREW SENIOR LIFE IS AN ENTITY THAT IS
UNIQUE, DOES BOTH HEALTH CARE AND HOUSING FOCUSED ON SENIORS.
THERE ARE TWO CONTINUING CARE RETIREMENT COMMUNITIES, SEVERAL OF THEIR HOUSING SITES, RESIDENTIAL
CARE, AND AS YOU SEE HERE, INTERNATIONALLY KNOWN INSTITUTE FOR AGING RESEARCH, IFAR,
WITH HARVARD MEDICAL SCHOOL ASSOCIATION. I WAS HIRED BY HEBREW SENIOR LIFE TO BEGIN
A CENTER FOR MEMORY HEALTH, WE WERE NAMED A COUPLE MONTHS AGO AFTER A NICE DUE DILIGENCE
PROCESS WHAT TO CALL OURSELVES. THE MISSION TO BE A TRUSTED SOURCE IN THE
REGION FOR CARE AND EDUCATION FOR PEOPLE WITH MEMORY CONCERN, AND OUR VISION IS TO CONTRIBUTE
TO LEADING MASSACHUSETTS AND THE NATION IN CREATING AND IMPLEMENTING MODELS OF EXCELLENCE.
AND WE HAVE FOUR PROGRAM GOAL AREAS, CARE AND SERVICES, RESEARCH, EDUCATION, AND POLICY.
AND FROM A PERSPECTIVE OF A START UP WE’RE HAVING TO BEGIN WITH CARE AND SERVICES, SO
THERE’S BEEN NO OUTPATIENT CLINIC FOOTPRINT THAT HEBREW SENIOR LIFE HAD.
YOU WOULD THINK THAT DOING THE HEALTH CARE AND HOUSING WORK THERE I WILL STOP.
THANK YOU.>>TWO MINUTES.
>>IT GOES FAST.>>GARY SHOULD GET FIVE EXTRA SECONDS SINCE
HE WAS TALKING ABOUT MASSACHUSETTS.>>THANK YOU.
>>DO YOU WANT TO FINISH THAT THOUGHT?>>FINISH YOUR THOUGHT.
>>WE’RE BEGINNING WITH EVIDENCE-BASED PRACTICES FOR CLINICAL CARE.
>>OKAY. GREAT.
>>SURE.>>GREAT.
THANK YOU. OKAY.
QUESTIONS? IF NO QUESTIONS, YOU CAN TAKE THE OTHER 30
SECONDS.>>SURE.
I’LL JUST SAY THAT WE NEED THE CLINIC PROGRAM OPERATING, AND THE COMPLEXITIES OF STARTING
NEW MEMORY CARE SERVICES ON THE CONTEXT OF NEW BILLABLE CODES AND TRYING TO MEET EXPECTATIONS
THAT WERE PUT FORTH FROM THE CARE AND SERVICES SUMMIT, IT’S A UNIQUE EXPERIENCE FOR ME TO
SEE WHAT IT’S LIKE TO IMPLEMENT NEW CLINICAL SERVICES THAT ARE EVIDENCE-BASED.
>>THE ATTEMPT IS TO HAVE ALL OF THEM REIMBURSABLE, DIFFERENT WAYS?
>>AND TO ADDRESS THE GAP BETWEEN CREATIVE WAYS TO ADDRESS THE GAP, WHAT IT COSTS TO
PROVIDE AND CODES PROVIDING REIMBURSEMENT, YES.
>>WHEN YOU FIGURE THAT OUT, THAT’S SOMETHING WE ALL NEED TO KNOW.
THANK YOU VERY MUCH. NEXT UP, ANGELA.
>>ALL RIGHT. SO, THE LEWY BODY DEMENTIA LAUNCHED A PROGRAM
IN THE LAST YEAR, RESEARCH CENTERS OF EXCELLENCE PROGRAM, AND IT IS A NETWORK OF 24 ACADEMIC
CENTERS WHO HAVE BOTH EXPERTISE IN LEWY BODY DEMENTIA AND EXPERIENCE WITH NEURODEGENERATIVE
DISEASE CLINICAL TRIALS. OUR PRIMARY AIM FOR THIS PROGRAM IS TO INCREASE
ACCESS TO EXPERT CLINICAL CARE AND IMPROVE CLINICAL CARE THROUGH THINGS LIKE BEST PRACTICES.
WE ALSO OUR SECOND AIM TO BUILD A CLINICAL TRIAL READY NETWORK WITH READY ACCESS TO WELL
DIAGNOSED PATIENTS TO IMPROVE SPEED OF RECRUITMENT. THIS IS AN AREA THAT REALLY UP UNTIL THREE
YEARS AGO THERE WAS NO INTEREST BEING AT LEAST PUBLICLY DESCRIBED BY INDUSTRY TO DO CLINICAL
TRIALS IN LEWY BODY DEMENTIA. IN THE LAST TWO TO THREE YEARS WE’VE SEEN
UPWARDS OF 20 DIFFERENT COMPANIES WHO HAVE AN INTEREST IN THIS SPACE NOW.
SO WE’VE BUILT THIS NETWORK TO FACILITATE THE IMPLEMENTATION OF THOSE TRIALS.
SO WE LOOK TO REALLY THROUGH HERE, YOU CAN SEE WE HAVE SEVERAL ADDITIONAL AIMS, BUT THROUGH
THESE NETWORKS, INDIVIDUAL CENTERS, WE WANT TO INCREASE ACCESS TO SUPPORT.
WE’RE LOOKING TO COLLABORATE WITH CENTERS LAUNCHING SUPPORT GROUPS.
WE’RE LOOKING TO DO OUTREACH TO THE COMMUNITY, AND EDUCATION OF BOTH THE LAY PUBLIC AND HEALTHCARE
PROFESSIONALS, AND ALSO TO, LIKE I SAID, BUILD THIS INFRASTRUCTURE.
SO WE JUST ENCOURAGE YOU TO GO AHEAD AND LOOK UP WHERE THOSE SITES ARE.
THEY ARE ALL LEADING AND WE HAD OUR FIRST INVESTIGATOR MEETING AT THE END OF 2017.
AND ARE LOOKING FORWARD TO DOING THE NEXT ONE AND I JUST GIVE A PLUG HERE, AT THE NEXT
INTERNATIONAL LEWY BODY DEMENTIA CONFERENCE WHICH WE HOPE WILL BE IN JUNE OF 2019.>>THANK YOU FOR SHARING.
ANY QUESTIONS? WE’RE GOING TO MOVE ON TO THE NEXT PERSON.
>>SO I’M NOT SURE IF YOU’RE AWARE OF THIS BUT IN 13 DATES IN THE UNITED STATES THERE
ARE DUAL ELIGIBLE PILOT PROJECTS HAPPENING, BLENDING MEDICARE AND MEDICAID FUNDING TO
TRY TO IMPROVE SERVICES TO THIS POPULATION WHICH IS A HIGH MORBIDITY POPULATION.
IN CALIFORNIA, WITH FUNDING FROM THE ADMINISTRATION ON COMMUNITY LIVING, THAT FILTERS THROUGH
OUR STATE AND OUR ORGANIZATION ALZHEIMER’S GREATER LOS ANGELES IS A LEAD ORGANIZATION.
WE AND OTHER ALZHEIMER’S ORGANIZATIONS ARE WORKING WITH TEN HEALTH PLANS TO TRY TO IMPROVE
SYSTEMS OF CARE SUCH THAT THEY DO A BETTER JOB OF DETECTING PEOPLE WITH DEMENTIA, IDENTIFYING
AND WORKING WITH FAMILY CAREGIVERS, MAKING REFERRALS TO COMMUNITY BASED ORGANIZATIONS.
WE HAVE SOME OF THE PRELIMINARY RESULTS UP THERE, THOUGH THEY ARE BEING CONFIRMED AT
THIS TIME. AND YOU CAN SEE THAT WE’RE WE NOW THROUGH
OUR ADVOCACY IN CALIFORNIA, WE HAVE ALL TEN OF OUR HEALTH PLANS HAVE A TRIGGER QUESTION
FOR COGNITIVE IMPAIRMENT IN HEALTH ASSESSMENT. NINE REPORT THEY ARE DOCUMENTING THE CAREGIVER
WITH A NUMBER OF THEM IN FACT, TWO OF THEM, ADOPTING A VALIDATED CAREGIVER ASSESSMENT
TOOL BUILDING IT INTO THEIR I.T. SYSTEMS. AND FOUR PLANS HAVE FORMALLY ADOPTED AN EFFECTIVE
TOOL FOR MAKING A WARMER ALZHEIMER’S, EVERY SINGLE ONE OF THESE PLANS, ACTUALLY NINE OF
THE TEN, ARE MAKING THESE REFERRALS HAPPEN. AND THROUGH THE ADVOCACY OF THE PROJECT, CMS
AND THE STATE’S DEPARTMENT OF HEALTHCARE SERVICES ISSUED AN EDUCATIONAL BULLETIN ABOUT ALZHEIMER’S
AND ITS CARE, DEMENTIA, TO BE MORE SPECIFIC, AND CARE IN CALIFORNIA TALKING ABOUT RISKS,
QUALITY, PREVALENCE AND MAKING RECOMMENDATIONS TO OUR HEALTH PLANS ABOUT HOW THEY MIGHT IMPROVE
CARE. AND SO WE SEE THIS AS A PROMISING PRACTICE,
AND HOPE THAT IT GETS REPLICATED ELSEWHERE. AND IN FACT IT IS BEING REPLICATED IN TEXAS
CURRENTLY. AND THAT’S IT.
I ACTUALLY BEAT MY TWO MINUTES.>>EXCELLENT.
OKAY. AGAIN, ANOTHER VERY EXCITING INITIATIVE.
QUESTIONS?>>OR IF PEOPLE WANT A COPY OF THE EDUCATIONAL
BULLETIN, I BROUGHT SOME COPIES FOR FOLKS HERE.
>>DO YOU HAVE A QUESTION? OH, YOU WANT A COPY.
HEARING NO QUESTIONS, WE’LL MOVE FORWARD.>>WHEN PEOPLE DISCOVER THAT I’M A PASTOR
THEY WILL OFTEN ASK ME ABOUT MY CHURCH. THEY ARE SURPRISED WHEN I TELL THEM I’M AN
ITINERANT PASTOR AND SUBSTITUTE IN ITTY BITTY CONGREGATIONS AROUND THE FINGER LAKES, THINK
UNDER 30 PEOPLE. I LEFT FULL TIME PARISH IN 2011 BECAUSE OF
ALZHEIMER’S. I’M GRATEFUL TO HAVE A MEANINGFUL MINISTRY
WITH AND TO PERSONS LIVING WITH ALZHEIMER’S OR OTHER DEMENTIAS, AND TO THOSE WHO ARE OUR
CARE PARTNERS AND OUR FRIENDS. I’VE BEEN FACILITATING A SUPPORT GROUP FOR
PLWDs FOR SEVERAL YEARS AND I SERVE AS EARLY STAGE ADVISER LOCALLY AND NATIONALLY, CHAIR
A COMMITTEE THAT PLANS AND HOSTS SOCIAL EVENTS AND OUTINGS, SERVE ON THE TRICOUNTY RESPITE
CARE COUNCIL, CERTIFIED AS RESPITE CARE COMPANION SO I COULD HELP PROVIDE CARE TO THOSE WHOM
I’VE COME TO KNOW AND LOVE. MY FRIEND AND I ARE STARTING A FAITH BASED
RESPITE CARE MINISTRY, FAITHFUL FRIENDS. ON THE LONGEST DAY OUR TEAM, FORGET ME NOT,
KAYAKED AND WALKED OUR WAY INTO RAISING AWARENESS AND NEARLY A THOUSAND DOLLARS FOR THE ALZHEIMER’S
ASSOCIATION. I RECENTLY PUBLISHED A BOOK CALLED UNMASKING
ALZHEIMER’S, THAT DESCRIBES MY PERSPECTIVE ON LIVING WITH ALZHEIMER’S DISEASE, THROUGH
THE 30 MASKS THAT I CREATED. AND IT PROVIDES AN OPPORTUNITY FOR OTHERS
TO DISCUSS THE CHANGES AND CHALLENGES THAT COME WITH THIS DIAGNOSIS.
I’M ALSO A MEMBER OF THE FAITH UNITED AGAINST ALZHEIMER’S COALITION, A NETWORK OF CLERGY,
LAITY AND FAITH ORGANIZATIONS, I WROTE SEVERAL CHAPTERS FOR AN UPCOMING BOOK ON SERVING THE
SPIRITUAL AND WORSHIP NEEDS OF PERSONS WITH DEMENTIA.
I NEVER PLANNED AN ALZHEIMER’S MINISTRY. BUT IN AN UNEXPECTED WAY IT’S BEEN A TRUE
BLESSING THAT HAS GIVEN ME A NEW PURPOSE AND NEW RESOLVE.
SO I THANK GOD FOR THIS JOURNEY AND FOR THE FRIENDS I’VE MET ALONG THE WAY.
AS WE LOOK AT OUR NATIONAL ALZHEIMER’S PLAN, WE NEED TO LOOK FOR ADDITIONAL WAYS TO ENGAGE
FAITH COMMUNITIES AND FAITH LEADERS IN OUR NATION AND BEYOND OUR BORDERS TO ADVANCE OUR
SHARED GOALS OF BETTER CARE, PREVENTION, AND ULTIMATELY A CURE FOR ADRD WITH FAITH, HOPE
AND LOVE. THANK YOU.
>>GREAT. THANK YOU.
YOUR INITIATIVES AND EVERYTHING YOU’RE DOING FILLS INCREDIBLE GAPS NO ONE IS ADDRESSING.
SO THANK YOU. DO WE HAVE TIME FOR QUESTIONS?
>>QUESTIONS? OKAY, THANK YOU.
>>CYNTHIA, I JUST WANT TO SAY THANK YOU FOR THE ADVOCACY WORK YOU’RE DOING AND RESILIENCY
THAT YOU’RE SHOWING TO ALL OF US IN THE FACE OF THIS UNEXPECTED LIFE JOURNEY.
>>OKAY, GREAT. OKAY, THANK YOU.
NEXT UP.>>TWO OF OUR TWO LARGE EXTERNAL MEETINGS
THAT WE HOLD EACH YEAR, THIS YEAR CLOSE TOGETHER, FIRST IS ADVOCACY FORUM, A 30th ANNUAL ADVOCACY
FORUM THIS YEAR WITH 1200 ATTENDEES, WE’RE HOLD IT’S THE LARGEST DISEASE ADVOCACY MEETING
IN WASHINGTON AT THIS POINT. THE ENTHUSIASM WITH WHICH OUR ADVOCATES BROUGHT
TO CAPITOL HILL THREE PRIORITIES, RESEARCH FUNDING, PALLIATIVE CARE AND WE’RE HOPING
FOR PROGRESS WITH CAPITOL HILL ON THOSE INITIATIVES THIS YEAR.
LAST WEEK AAIC WAS HELD, WITH ALMOST 6000 ATTENDEES IN CHICAGO.
MY OWN OBSERVATION WAS THE ENTHUSIASM OF THE RESEARCH COMMUNITY IN TERMS OF THE SCIENCE
UNDERWAY AND ALSO REALIZATION HOW MUCH MORE NEEDS TO BE DONE ACROSS BASIC SCIENCE TO CARE
AND SUPPORT RESEARCH. SO EXTREMELY PRODUCTIVE MEETING.
FOR THOSE INTERESTED IN HEARING MORE ABOUT THAT, IF YOU TYPE IN IN A SEARCH ENGINE AAIC
NEWS FOR INSTANCE YOU’D SEE DISTILLATION OF THE NEWS THAT CAME OUT LAST WEEK ON MANY DIFFERENT
FRONTS.>>GREAT.
THANK YOU. QUESTIONS?
OKAY. THANK YOU, ROBERT.
>>GOOD MORNING. I WANT TO SHARE SOME OF THE WORK THAT TEXAS
HAS BEEN DOING FOR THE LAST COUPLE YEARS, WE’VE BEEN FOCUSED ON TRAINING MANY OF OUR
CAREGIVERS FROM LICENSED INDIVIDUALS AS WELL AS NON LICENSED INDIVIDUALS.
WE HAVE PROBABLY TRAINED TENS OF THOUSANDS OF PEOPLE, MOST INITIATIVES ARE ALL FREE.
IT’S VERY EXCITING AS A STATE AGENCY TO BE ABLE TO OFFER THESE THINGS AROUND THE STATE.
WE HAVE THREE MAJOR DEMENTIA CARE TRAINING ACADEMIES.
ONE FOCUSES ON NURSING FACILITY. THE OTHER FOCUSES ON EVERY OTHER PROVIDER
THAT PROVIDES COMMUNITY BASED SERVICES. WE WILL BE LAUNCHING FORUMS ONLINE AS WELL
TO CONTINUE THEIR EFFORTS FOR SUSTAINABILITY.
IN ADDITION, THE THIRD ANNUAL SYMPOSIUM. CENTER FOR EXCELLENCE, IN 2016, FOUR PHASES
INCLUDING ANTIPSYCHOTIC USAGE, GERIATRIC NURSING, MODELS ON DEMENTIA CARE, TRANSITION TO PRACTICE
FOR NURSES. THERE ARE MODULES AS WELL FOCUSING ON DEMENTIA
CARE. THE OTHER BIG INITIATIVES THAT WE’VE BEEN
FOCUSING ON IS INTERGENERATIONAL PROGRAMMING. WE’VE LAUNCHED A LOT OF THINGS TO INSPIRE
OUR YOUTH TO POSSIBLY CHOOSE A CAREER IN WORKING WITH THOSE THAT HAVE ALZHEIMER’S AND DEMENTIA,
AND WE’VE MOBILIZED WHAT’S CALLED HOSA IN OUR STATE, HEALTH OCCUPATION STUDENTS OF AMERICA
THROUGH OUR HIGH SCHOOLS. WE’VE DONE A LOT OF WORK WITH THEM GETTING
THEM INTO LONG TERM CARE FACILITIES AND EDUCATING THEM.
WE ALSO HAVE A HIGH SCHOOL CURRICULUM CALLED A SNAPSHOT IN AGING WHICH WE’RE PROUD OF AS
WELL. AND IT IS ONLINE.
THAT’S IT.>>THAT’S A LOT.
THANK YOU. THAT’S GREAT.
QUESTIONS?>>DO YOU FIND THAT HIGH SCHOOL STUDENTS WHO
SUPPRESS AN INTEREST HAVE FAMILY MEMBERS WITH ALZHEIMER’S?
ARE THERE ANY THAT DON’T? I’M CURIOUS, WHAT WOULD INTEREST THEM IN IT.
>>WE’VE SEEN BOTH. ONE OF THE BIGGEST MOTIVATORS FOR HIGH SCHOOL
STUDENTS THAT WE’RE SEEING IS THE MUSIC AND MEMORY PROGRAM.
GETTING THEM INVOLVED IN MUSIC, HAVING THEM VOLUNTEER AND WORKING WITH FOLKS.
SEVERAL STORIES FROM HIGH SCHOOL STUDENTS OF STUDENTS THAT HAVE A GRANDPARENT, HELPING
THEM CONNECT OR UNDERSTAND THE GRANDPARENT, OR STUDENTS THAT DON’T HAVE A FAMILY MEMBER
BATTLING THE DISEASE ALSO INSPIRED, TOUCHING STORIES. WE HAVE A COUPLE VIDEOS ONLINE OF STUDENTS
WORKING WITH DEMENTIA.>>WE SPOKE ON THE PROJECT IN TEXTS WITH DUAL
ELIGIBLES. HAVE YOU BEEN ABLE TO CONNECT WITH TEXAS TAKES
ON DEMENTIA?>>YES, I SIT THAT STEERING COMMITTEE.
THEY ARE DOING A LOT OF WORK. IT’S EXCITING TO SEE THE PROGRAMMING IN THE
STATE OF TEXAS.>>MICHELLE, SEND ME THE LINKS AND I CAN SHARE
WITH THE COUNCIL.>>ABSOLUTELY.
>>GREAT. NEXT UP IS KATE.
>>GOOD MORNING. THE MASSACHUSETTS GENERAL HOSPITAL FRONTOTEMPORAL
DISORDERS UNIT IS A CLINICAL UNIT FOCUSED ON CUESING CORTICAL BASAL DEGENERATION, PROGRESSES
SUPERNUCLEAR PALSY, POSTERIOR CORTICAL ATROPHY AND RELATED DISORDERS.
THE INDIVIDUALS WHO MAKE UP THE COMMUNITY HAVE RARE ATYPICAL AND UNEXPECTED EXPERIENCES
AS THEY NAVIGATE LIFE WITH A DIAGNOSIS. THIS MEANS THEIR CLINICAL PRESENTATION MAY
INCLUDE SYMPTOMS, BEHAVIORS, COMMUNICATION CHALLENGES THAT OUR CURRENT WORKFORCE OF AIDES
ARE NOT FAMILIAR WITH. THIS INEXPERIENCE CAN LEAD TO HESITATION TO
INCLUDE AND EVEN EXCLUSION OF OUR NEEDIEST PATIENTS FROM ESSENTIAL PROGRAMMING AND SERVICES.
WE’RE COMMITTED TO PROVIDING HIGHEST QUALITY OF CARE TO PATIENT AND THIS FAMILIES, THIS
MUST INCLUDE CONNECTIONS WITH COMMUNITY BASED AGENCIES, TO PROMOTE ACCESS AND ENHANCE QUALITY
OF LIFE WE’VE DEVELOPED A PROTOTYPE INFORMAL PARTNERSHIP WITH THE LOCAL ASSISTED LIVING
FACILITY PROVIDING CLINICAL SUPPORT, EDUCATIONAL OPPORTUNITIES AND ENGAGEMENT AT COMMUNITY
BASED EVENTS. THIS IS A WORKING PARTNERSHIP BUT EARLY REPORTS
FROM MEMORY CARE STAFF STATE THEY ARE MORE PREPARED TO HANDLE UNIQUE AND OFTEN CHALLENGING
NEEDS OF OUR PATIENT POPULATION. FAMILIES REPORT A RELIEF AT HAVING A PLACE
TO GO WHERE THEIR LOVED ONES ARE UNDERSTOOD, AND THIS PARTNERSHIP COULD BE A PROTOTYPE
FOR INSTITUTIONS TO INTEGRATE CARE BETWEEN MEDICAL CENTERS AND RESIDENTIAL FACILITIES.
IMPROVING CONNECTIONS AND QUALITY OF CARE FOR PATIENTS AND FAMILIES.
>>GREAT. THANK YOU.
VERY GOOD. ANY QUESTIONS?
YES, GARY?>>KATIE, VERY EXCITING.
CAN YOU SAY A LITTLE BIT MORE ABOUT THE CONTENT OF THE MONTHLY CALL?
>>YEAH, SO THE CONTENT OF THE MONTHLY CALL BEGINS BETWEEN THE NURSE PRACTITIONER IN THE
MEMORY UNIT WITH OUR MOST CHALLENGING PATIENTS AND THE NURSE IN OUR FTD UNIT.
SO THE NURSE TRIAGES, IF THERE ARE MEDICATION ISSUES THAT NEED TO BE REVIEWED BY THE PHYSICIAN,
PREVENTING THE CRISIS CALL, HELPING THE FACILITY, THE FAMILY AND OUR UNIT FEEL LIKE WE’RE ALL
ON THE SAME PAGE WHEN IT COMES TO MEDICATION WHICH CAN REDUCE ALSO AMBULANCE RIDES TO THE
EMERGENCY ROOM AS WELL.>>ANY OTHER QUESTIONS?
THANK YOU. WONDERFUL.
THANK YOU. WONDERFUL WORK.
OKAY. I THINK NEXT IS ME.
SO I REPRESENT THE NON FEDERAL MEMBER REPRESENTING THE RESEARCH COMMUNITY, I WANTED TO SHARE
SOME OF THE WORK THAT I’VE BEEN DOING WITH MY TEAMS IN TERMS OF THE INTERVENTIONS THAT
WE’VE BEEN DEVELOPING THAT WE REALLY HOPE GETS IN EACH OF OUR STATES AT SOME LEVEL.
SO, I’VE BEEN WORKING WITH MY COLLEAGUES, OCCUPATIONAL THERAPISTS, GERIATRIC WORKERS,
SOCIAL WORKERS, FROM A FRAMEWORK WHICH UNDERSTANDS INDIVIDUALS IN LIVING ENVIRONMENTS, TAKES
A VERY FAMILY DIRECTED APPROACH WORKING ON WHAT ARE THE CARE CHALLENGES OF PEOPLE LIVING
WITH DEMENTIA AT THEIR HOME AS WELL AS THEIR CAREGIVERS.
AND CONSIDERING BOTH WHAT’S HAPPENING TO THE PERSON INTERNALLY FROM A BIOMEDICAL PERSPECTIVE
AS WELL AS SOCIAL PSYCHOLOGICAL PERSPECTIVE AS WELL AS WHAT’S IN THEIR ENVIRONMENT.
THIS HAS BEEN A VERY SUCCESSFUL APPROACH, I WANT TO HIGHLIGHT SOME OF THE STUDIES THAT
WE’RE INVOLVED IN CURRENTLY, AND VERY INDEBTED TO THE NATIONAL INSTITUTE ON AGING FOR THE
STUDY THAT I AM DOING IN PARTNERSHIP WITH DR. JOE GOLGER AT UNIVERSITY OF MINNESOTA.
WE HAVE 30 ADULT DAY SERVICES THAT HAD BEEN RANDOMIZED TO PROVIDE USUAL CARE, OR AUGMENTED
CARE, WHICH IS THE ADULT DAY SERVICE PLUS PROGRAM WHICH TAKES ELEMENTS FROM REACH AND
OTHER KINDS OF PROVEN INTERVENTIONS BUT PUTS IT TOGETHER IN A UNIQUE WAY AND TRAINS STAFF
THEMSELVES TO DELIVER THAT KIND OF APPROACH ON SITE WITH FAMILY WHO IS ARE USING ADULT
DAY SERVICES. AND THIS SERVES IN A WAY AS A MODEL OF HOW
DO WE EMBED DIFFERENT KINDS OF SUPPORTIVE PROGRAMS FOR CAREGIVERS IN EXISTING HEALTHCARE
AND FUNDED SETTINGS. I’M RUNNING OUT OF TIME.
I WANTED TO TELL YOU ABOUT THE WE CARE ADVISORY, OUT OF FUNDING FROM NINR, IN REVIEW IN NIA
FOR LARGER RANDOMIZED TRIAL, I’LL GO FAST.>>CHAIR PREROGATIVE.
>>YES. TAKES FAMILIES THROUGH A SERIES OF QUESTIONS
TO SPIT OUT A TARGETED WE CARE ADVISER PRESCRIPTION TO HELP, WHICH PROVIDES STRATEGIES FOR MANAGING
COMPLEX BEHAVIORS. SO IT GIVES FAMILIES ONLINE ACCESS ANYTIME
THAT THEY NEED IT TO SOLVE COMPLEX BEHAVIORAL CHALLENGES THEY HAVE IN THE HOME.
ANOTHER IS TAILORED ACTIVITY PROGRAM. I FORGOT WHO SAID PURPOSE.
CYNTHIA SAID PURPOSE, THAT’S THE HEART OF THIS, GIVING PROVIDING PEOPLE AT WHATEVER
LEVEL OF THE DISEASE THEY ARE AT A SENSE OF PURPOSE THROUGH ACTIVITIES TAILORED TO THEIR
ABILITIES. WE’VE HAD FIVE DIFFERENT RANDOMIZED TRIALS,
WE’RE FINISHING A TRIAL IN BALTIMORE FUNDED BY THE NIA.
THIS PROGRAM IS IN NINE COUNTRIES NOW, ADOPTED BY SCOTLAND’S ALZHEIMER’S PLAN, AND IT GOES
BACK TO SARAH’S COMMENT, SARAH LOCK’S COMMENT, ABOUT HOW OTHER COUNTRIES HAVE BEEN ABLE TO
PICK UP THE EVIDENCE AND DELIVER IT. BUT WE’RE HAVING A LOT OF PROBLEMS DOING THAT.
ONE OTHER IS PROJECT COPE FOR DR. FORTONSKI, USING THE ADS MODEL, ADULT DAY PLUS MODEL,
EMBEDDING A NURSE AND O.T. APPROACH TO HELP FAMILIES WHO ARE RECEIVING SERVICES THROUGH
MEDICAID WAIVER. SO IF WE CAN SHOW EFFECTIVENESS AS WE HAVE
IN OTHER TRIALS, WITH PROJECT COPE AND REDUCING FUNCTIONAL DISABILITY, AND ADDRESSING BEHAVIORAL
SYMPTOMS, AND IMPROVING CAREGIVER EFFICACY, WE HAVE A STRUCTURE BY WHICH THIS PROGRAM
COULD BE ROLLED OUT. JUST WANT TO SAY WE’VE BEEN WORKING, SARAH
SAID, WE HAVE TO DEVELOP ALL DIFFERENT KINDS OF TOOLS.
THAT’S WHAT WE’VE BEEN DOING, WORKING AND DEVELOPING TOOLS FOR FAMILIES AND PROVIDERS.
THIS IS BASICALLY A CHECKLIST OF ALL THE DIFFERENT STRATEGIES WE’VE USED IN OUR STUDIES AND I
JUST WANTED TO SAY THAT WE HAVE A NEW BOOK WITH MY COLLEAGUE NANCY BETTER LIVING WITH
DEMENTIA, FAMILY CAREGIVERS, COMMUNITY AND SOCIETY, IT REALLY IS AN ATTEMPT TO DO WHAT
SARAH HAD SAID, CHANGE THE CONVERSATION. WE TALK ABOUT THIS IN TERMS OF THIS IS ABOUT
WHAT WE KNOW WE CAN DO NOW TO CHANGE A CYCLE OF DESPAIR WHICH IS CREATED BY HEALTH PROVIDERS
SAYING THERE’S NOTHING THAT CAN BE DONE TO A CYCLE OF HOPE, THAT THERE ARE THINGS THAT
CAN BE DONE TO ASSURE QUALITY OF LIFE AND WE’RE, AGAIN, ON THE LEFT HAND SIDE TRYING
TO GENERATE THOSE KINDS OF INTERVENTIONS USING THE BEST SCIENCE AND RANDOMIZED TRIALS TO
DO SO. OKAY.
I THINK THAT’S IT.>>QUESTIONS?
>>I SAID ALL THE SLIDES ARE AVAILABLE ONLINE SO PEOPLE CAN ACCESS THEM.
>>THEY ARE IN THE FOLDER.>>FOR ANYONE ELSE WHO WANTS TO SEE THIS VALUABLE
INFORMATION, YEAH.>>JUST ONE OTHER RESOURCE WE STILL CONTINUE
WITH OUR ONLINE FREE COURSE, OVER 70,000 VISITORS FROM AROUND 170 COUNTRIES HAVE SEEN THE APPROACH,
WITH THE BOOK, BETTER LIVING, ABOUT WHAT CAN YOU DO NOW TO MAKE A DIFFERENCE AND UNDERSTANDING
THE DISEASE PROCESS.>>QUESTIONS?
OKAY. THANK YOU.
SO WE’RE GOING TO NOW MOVE ON TO FEDERAL WORK GROUP UPDATES.
ERIN WE’LL START WITH YOU.>>LET ME KNOW WHEN TO CHANGE THE SLIDES.
>>SOUNDS GOOD. SO I’M ERIN LONG WITH THE ADMINISTRATION FOR
COMMUNITY LIVING, I’M GOING TO FIRST GIVE THE REPORT FOR THE ADMINISTRATION FOR COMMUNITY
LIVING AND THEN I’LL PASS IT TO LISA MCGUIRE TO HEAR FROM CDC.
WE HAVE A SMALL REPORT THIS MONTH, OR THIS QUARTER, FIRST I WANT TO TELL YOU A LITTLE
BIT ABOUT A COUPLE WEBINARS WE’VE HAD. WE WERE VERY PLEASED WE HAD A WEBINAR ON FINDING
BALANCE, ENHANCING SELF EFFICACY IN PERSONS ON JUNE 26 WITH DR. SUSAN WEARY, PLEASED WITH
THE OUTCOME OF 814 PEOPLE IN ATTENDANCE. IT WAS VERY WELL RECEIVED.
WE’RE IN THE PROCESS OF GETTING IT ONTO OUR WEBSITE, IF ANYBODY HASN’T SEEN IT I ENCOURAGE
YOU TO CHECK IT OUT BECAUSE IT WAS A REALLY GREAT WEBINAR.
WE ALSO HAD ANOTHER VERY GOOD WEBINAR ON DISASTER PREPAREDNESS FOR COMMUNITY DWELLING OLDER
ADULTS WITH DEMENTIA AND CAREGIVERS. IT HIGHLIGHTED SOME WORK HAPPENING IN CALIFORNIA
WITH THE V.A., AND HEALTH SYSTEM PILOT ON JULY 10.
DR. NANCY OLIVA AND BETTY WEXLER WERE OUR PRESENTERS, THERE WERE 554 PEOPLE IN ATTENDANCE.
THIS IS PART OF AN ANNUAL WEBINAR SERIES, TEN PER YEAR ON A BROAD RANGE OF TOPICS, AND
WE CONTINUE TO INCREASE THE PARTICIPATION OF THE COMMUNITY.
ROHINI, THE NEXT SLIDE. THEN I WANTED TO TELL YOU ABOUT A COUPLE THINGS
COMING UP. WE HAVE A WEBINAR SCHEDULED FOR TOMORROW,
AND IT IS ON ADDRESSING HEALTH DISPARITIES WITH PEOPLE LIVING WITH AND AT RISK FOR DEMENTIA,
DR. LISA BARNES AND ANDREA GARR TALKING ABOUT SOME WORK THAT’S TAKING PLACE IN WISCONSIN.
WE VERY MUCH LOOKING FORWARD TO IT. AND ASSUME WE WILL HAVE A GOOD CROWD, ONE
OF THE HIGHLIGHTS OF OUR SESSIONS IN ADDITION TO ALL THE INFORMATION IS THAT WE ARE ABLE
TO WE ALWAYS SET ASIDE TIME AT THE END SO THOSE IN ATTENDANCE CAN ENGAGE WITH OUR PRESENTERS
AND WE ALWAYS HAVE VERY LIVELY INTERACTIONS AT THE END WITH SOLID INFORMATION PROVIDED.
AGAIN ON AUGUST 7 WE HAVE A WEBINAR ON FIRST RESPONDER TRAINING AND PROGRAMS TO SUPPORT
PEOPLE WITH DEMENTIA. I’M SURE IT’S NO SURPRISE TO MOST PEOPLE THAT
FIRST RESPONDER TRAININGS ARE TAKING PLACE ALL ACROSS THE COUNTRY AND WE HAVE SOME UNIQUE
INITIATIVES THAT ARE TAKING PLACE THROUGH ACLs,’S A DISEASE INITIATIVE PROGRAM, AND
THESE ARE ACTUALLY TWO OF OUR GRANTEES THAT ARE WORKING ON PROJECTS WITH FIRST RESPONDERS,
SO I ENCOURAGE YOU ALSO TO CHECK THIS ONE OUT TOMORROW.
THE NEXT SLIDE, I JUST WANTED TO GIVE YOU A QUICK UPDATE ON ACL’S ALZHEIMER’S ACTUALLY
GRANT PROGRAMS, IN 2018 ACL COMBINED ITS ADSSP, ALZHEIMER’S DISEASE SUPPORTIVE SERVICES PROGRAM,
AND OUR WHICH IS OUR GRANT PROGRAM TO STATES WITH OUR GRANT PROGRAM TO THE COMMUNITY, ALZHEIMER’S
DISEASE INITIATIVE, WE HAVE A NEW PROGRAM THAT IS MOST OF THE SAME COMPONENTS, STATES
AND COMMUNITIES, IT’S JUST ONE GRANT FUNDING OPPORTUNITY FOR STATES AND COMMUNITIES AND
APPLY UNDER THE SAME OPPORTUNITY. AND THAT WAS THE APPLICATIONS WERE RECEIVED
ON JULY 16. WE ARE IN THE PROCESS OF OUR PANEL REVIEWS,
AND WE HOPE THAT THE GRANTS WILL BE AWARDED AND START SOMETIME IN SEPTEMBER, NOT EXACTLY
SURE. WE ALSO IN JULY, ON JULY 16, WE RECEIVED APPLICATIONS
FOR FUNDING OF OUR FUNDING OPPORTUNITY ANNOUNCEMENTS FOR ALZHEIMER’S CALL CENTER COOPERATIVE AGREEMENT.
AND THAT TOO IS UNDERGOING THE OUR INDEPENDENT REVIEW PROCESS AND I BELIEVE THEY EXPECT FOR
THAT TO BE AWARDED, THAT’S ONE GRANT FOR THE CALL CENTER, IT WILL BE AROUND 20 GRANTS FOR
STATE AND COMMUNITY PROGRAMS, BUT BOTH OF THEM SHOULD BE AWARDED AND LAUNCHED IN SEPTEMBER.
AND FOR THE MOMENT THAT’S ALL WE HAVE FROM THE ADMINISTRATION FOR COMMUNITY LIVING.
SO WE’RE GOING TO PASS IT ON OVER TO DR. MAGUIRE.>>THANK YOU VERY MUCH, ERIN.
AND SO THE FIRST THING I WANT TO TALK ABOUT TODAY IS SOME OF CDC’S EFFORTS ON DATA FOR
ACTION. SO CDC HAS A NATIONAL LEVEL SURVEILLANCE SYSTEM
CALLED BEHAVIORAL RISK FACTOR SURVEILLANCE SYSTEM, AND ONE OF THE THINGS THAT OUR PROGRAM
DOES IS SUPPORT MODULES ON BOTH COGNITIVE DECLINE AND ALSO CAREGIVING.
SO THIS MORNING I PASSED AROUND ONE OF OUR INFOGRAPHICS, AND THOSE IN THE BACK SHOULD
HAVE IT. IF NOT, THEY ARE OUTSIDE ON THE TABLE.
BUT OUR WEBSITE, WE HAVE THESE AVAILABLE FOR THIS IS THE NATIONAL LEVEL DATA FOR SUBJECTIVE
COGNITIVE DECLINE. SO THIS IS SHOWING US THAT ONE IN NINE PEOPLE
HAVE REPORTED THAT IN THE PAST YEAR THEIR MEMORY IS GETTING WORSE.
SO, WE DO HAVE THESE AVAILABLE FOR 49 STATES, D.C. AND PUERTO RICO.
AND THEY ARE AVAILABLE ON OUR WEBSITE, AND OUR WEBSITE IS ON THE OTHER POSTAL SIZE CARD
I PASSED AROUND THIS MORNING. SO IN ADDITION, THIS DATA IS UPDATED ANNUALLY.
SO IT’S NATIONAL LEVEL AND ALSO STATE SPECIFIC. WE DO HAVE INFOGRAPHICS THAT ARE IN DEVELOPMENT
NOW FOR CAREGIVING, AND WE WILL PRESENT THOSE AT THE FALL MEETING, AND SHARE THOSE WITH
YOU. ALSO WE HAVE A DATA PORTAL WHICH IS IDENTIFIED
ON THE NOTE CARD AS WELL. AND IT SHOWS DATA FOR SPECIFIC INDICATORS
RELATED TO COGNITION, CAREGIVING AND OTHER ASPECTS OF OLDER ADULT HEALTH, AND YOU CAN
DEVELOP FACTSHEETS FOR YOUR STATE OR YOU CAN DEVELOP A FACT SHEET FOR THE NATION ON A SPECIFIC
INDICATOR, SO THIS IS DATA, FREE, AVAILABLE, PLEASE CHECK IT OUT.
THE NEXT SLIDE SHOWS SOME INITIATIVES GOING ON AT THE NATIONAL LEVEL.
ACL, NIA AND CDC CO LEAD A HEALTHY PEOPLE 2030 WORK GROUP DEVELOPING OBJECTIVES FOR
2030, IN PROCESS, UNDERGOING AGENCY CLEARANCE, HAVE BEEN CLEARED BY MOST AGENCIES, PRESENTED
TO THE FEDERAL INTERAGENCY WORK GROUP FOR APPROVAL AND CONSIDERATION OF MOVING FORWARD
TO 2030 IN MID AUGUST. THE COMMITTEES HAVE PROPOSED MOVING FORWARD
WITH EXISTING DIA OBJECTIVE NUMBER 1 AND 2. ONCE AGAIN WE WANT TO CONTINUE TO INCREASE
AWARENESS OF INDIVIDUALS DIAGNOSED FOR THEMSELVES AND ALSO CAREGIVERS.
WE ALSO ARE SUPPORTING AND REDUCING PROPORTION OF PREVENTABLE HOSPITALIZATIONS FOR PERSONS
WITH DEMENTIA. AND THEN WE’RE PROPOSING A THIRD OBJECTIVE
UTILIZING REPORTED DECLINE IN MEMORY PERFORMANCE. WE WANT TO TRY TO INCREASE THE NUMBER OF INDIVIDUALS
WITH REPORTED MEMORY DECLINE WHO DISCUSSED WITH THEIR HEALTH CARE PROVIDER.
SO YOUR INFOGRAPHIC SHOWS YOU AND OTHER DATA THAT CDC HAS PUBLISHED RECENTLY SHOWS US THAT
MORE THAN HALF OF PEOPLE WHO SAY THEIR MEMORY HAS GOTTEN WORSE IN THE PAST YEAR HAVE ACTUALLY
DISCUSSED THOSE CONCERNS WITH A HEALTHCARE PROVIDER.
SO THAT’S ONE OF THE THINGS THAT WE’RE HOPING WE CAN MODIFY, WITH ALL OF YOU US WORKING
TOGETHER IN THIS GROUP AND WATCHING ON LIVE STREAM TO TRY TO IMPROVE AND INCREASE PEOPLE
DISCUSSING THEIR MEMORY CONCERNS WITH THEIR HEALTH CARE PROVIDER.
SO NEXT SLIDE PLEASE. OKAY.
SO I WANT TO SHARE WITH YOU A RECENT PUBLICATION WHICH PROVIDES MORE INFORMATION ON DISCUSSING
YOUR SUBJECTIVE COGNITIVE DECLINE OR MEMORY CONCERNS WITH HEALTH CARE PROVIDER BUT ALSO
PROVIDES SOME STATE LEVEL DATA. SO MY COLLEAGUE, DR. CHRISTOPHER TAYLOR, AND
I ALONG WITH ERIN BEAUDION FROM APPALACHIAN STATE RELEASED THIS, IT HAS RECEIVED MEDIA
ATTENTION AND DOWNLOADS TOO. PLEASE CHECK OUT THE PUBLICATION.
IT IS FREE. IT’S DOWNLOADABLE AS WELL AS THE INFOGRAPHIC.
IT DOES GIVE STATE SPECIFIC DATA AS WELL. AND IT GIVES NICE EXPLANATIONS FOR WHY WE
MIGHT BE SEEING THESE THINGS OCCURRING IN SPACE AND LOCALITY AS WELL AS IMPLICATIONS
MOVING FORWARD. THE NEXT SLIDE PLEASE.
AND THE NEXT SLIDE JUST HIGHLIGHTS SOME OF CDC’S RECENT EFFORTS TO TRY TO INCREASE AWARENESS
OF CAREGIVING ISSUES AND ALSO COGNITIVE DECLINE. FIRST ON THE LEFT CDC’S WEBSITE FEATURES A
DISEASE OF THE WEEK, AND IN JUNE ALZHEIMER’S DISEASE WAS THE DISEASE OF THE WEEK.
THE SECOND WAS A PIECE THAT WE DEVELOPED FOR OLDER AMERICANS MONTH ON PREPAREDNESS.
THEY LOOK BLURRY BUT YOU CAN SEE LINKS FROM SLIDES AND THEY ARE AVAILABLE ON THE WEBSITE.
IT’S EMERGENCY PREPAREDNESS FOR OLDER ADULTS, BUT IT HAS AN EMPHASIS FOR INDIVIDUALS WHO
DO HAVE A COGNITIVE IMPAIRMENT AND ALSO SOME INFORMATION FOR THEIR CAREGIVERS AS WELL MOVING
FORWARD, AND THE LAST IS DANCING YOUR WAY TO BRAIN HEALTH.
SO FOR JUNE WE WERE EMPHASIZING THE IMPORTANCE OF EXERCISE, AND HOW EXERCISE IS GOOD FOR
YOUR HEALTH. AND FEATURED ONE OF OUR HEALTHY BRAIN RESEARCH
NETWORKS, UNIVERSITY OF ILLINOIS AT CHICAGO, AND THEIR LATINO DANCE PROGRAM.
SO THANK YOU VERY MUCH.>>TERRI, WOULD YOU LIKE TO USE THE CLICKER
OR DO YOU WANT ME TO DO IT?>>ONE LESS THING FOR ME TO NAVIGATE.
THANKS. HI, EVERYBODY.
I’M TERRI POSTMA, SENIOR MEDICAL CENTER TRAINED IN NEUROLOGY FOR SHARI LING TODAY.
HAPPY TO GIVE YOU AN UPDATE ON WHAT CMS IS DOING AND THEN I’LL PASS IT OVER TO REPRESENTATIVES
FROM THE V.A. AND THE INDIAN HEALTH SERVICES. YOU’RE FAMILIAR WITH ONGOING ACTIVITIES OF
THE PARTNERSHIP, WHICH IS COMMITTED TO IMPROVING CARE QUALITY FOR INDIVIDUALS WITH PEOPLE LIVING
WITH DEMENTIA LIVING IN NURSING HOMES. CMS IS TRACKING THE PARTNERSHIP’S PROGRESS
BY REVISING PUBLICLY REPORTED MEASURES RELATED TO ANTIPSYCHOTIC MEDICATION USE.
NEXT SLIDE. IN THE FOURTH QUARTER OF 2011, 23.9% OF LONG
STAY NURSING HOME RESIDENTS WERE RECEIVING AN ANTIPSYCHOTIC MEDICATION, BUT SINCE THEN
THERE’S BEEN A PRETTY STEADY DECLINE IN THE NATIONAL PREVALENCE TO 15.1% BY THE END OF
2017, THE MOST RECENTLY TRACKED QUARTER. AND THIS REPRESENTS AN OVERALL DECREASE OF
OVER 35%. NEXT.
THIS IS THE SAME DATA BUT IT’S BROKEN OUT BY REGION, SO YOU CAN SEE THAT ALL TEN REGIONS
HAVE HAD THE SAME STEADY DECLINE. NOW TO SHIFT OVER TO THE INNOVATION CENTER
COMPREHENSIVE MODEL, SEEKS TO IMPROVE EFFICIENCY OF PRIMARY CARE, PRACTICES IN THE MODEL, MAKE
CHANGES IN THE WAY THEY DELIVER CARE CENTERED ON KEY FUNCTIONS FOR PEOPLE WITH CHRONIC DISEASE
INCLUDING ACCESS AND CONTINUITY, CARE MANAGEMENT, COMPREHENSIVENESS AND COORDINATION, PATIENT/CAREGIVER
ENGAGEMENT AND PLANNED CARE AND POPULATION HEALTH.
THERE ARE JUST UNDER 3,000 PRACTICES PARTICIPATING IN 18 DIFFERENT REGIONS AROUND THE COUNTRY.
AND IN MAY THIS YEAR CMS RELEASED FINAL INDEPENDENT EVALUATION REPORT OF THE DEMONSTRATION.
THE RESULTS INDICATED THAT THE PRACTICES REALLY PROACTIVELY ENGAGED IN SUBSTANTIAL CARE DELIVERY
TRANSFORMATION. HOWEVER, THE SAVINGS TO MEDICARE DID NOT OFFSET
THE TOTAL CARE MANAGEMENT FEE PAYMENTS MADE TO THE PRACTICES.
YOU CAN ACCESS THE HIGHLIGHTS AND SUMMARIES OF THE INITIATIVE BY FOLLOWING THAT LINK THAT’S
ON THE SLIDE, IF YOU WANT MORE INFORMATION. OKAY.
AND NOW I’D LIKE TO TURN TO AN UPDATE TO THE PROPOSED PAYMENT AND POLICY CHANGES FOR NURSING
HOMES. AS WE KNOW, MANY PEOPLE LIVING WITH DEMENTIA
HAVE BOTH SHORT AND LONG TERM STAYS IN NURSING HOMES AND POLICY THAT SEEK TO LOWER PROVIDER
BURDEN MAY CONTRIBUTE TO IMPROVED QUALITY OF CARE.
CMS IS SEEKING TO REDUCE PROVIDER BURDEN BY PROPOSING TO USE MORE STANDARDIZED ITEMS FOR
PAYMENT CALCULATIONS, THAT’S EXPECTED TO GREATLY SIMPLIFY THE PAPERWORK THAT PROVIDERS HAVE
TO DO. THE PROPOSAL IS ALSO SEEKING TO REMOVE SOME
SORT OF SOME OF THE ADMISSION DOCUMENTATION REQUIREMENTS WHICH WOULD ALSO HAVE THE END
EFFECT OF SIMPLIFYING PROVIDER PAPERWORK. THE COMMENT PERIOD FOR THIS PROPOSED RULE
CLOSED IN JUNE AND WE’RE REVIEWING THOSE CURRENTLY. ADDITIONALLY CMS PROPOSED A NUMBER OF CHANGES
THROUGH THE PHYSICIAN FEE SCHEDULE RULE WITH THE SAME GOAL IN MIND TO REDUCE EMPHASIS ON
PAPERWORK SO PRACTITIONERS CAN FOCUS MORE OF THEIR TIME ON PATIENTS.
SPECIFICALLY, CMS HAS PROPOSED CHANGES TO THE DOCUMENTATION REQUIREMENTS FOR PAYMENT
FOR OFFICE VISITS OR ALSO KNOWN AS EVALUATION AND MANAGEMENT OR E&M VISITS.
WE’RE ALSO PROPOSING TO ADVANCE VIRTUAL CARE IN RESPONSE TO COMMENTS THAT WE RECEIVED IN
LAST YEAR’S RULE, SUPPORTING ACCESS TO SERVICES SUPPORTING TECHNOLOGICAL DEVELOPMENT IN HEALTH
CARE. TO SUPPORT ACCESS TO CARE USING COMMUNICATION
TECHNOLOGY WE’RE PROPOSING TO FIRST PAY CLINICIANS FOR VIRTUAL CHECK INS, VIRTUAL CHECK INS ARE
BRIEF NON FACE TO FACE ASSESSMENT USING COMMUNICATION TECHNOLOGY.
SECOND, TO PAY FOR RURAL HEALTH CLINICS AND FEDERALLY QUALIFIED HEALTH CENTERS FOR USING
COMMUNICATION TECHNOLOGY BASED SERVICES AND REMOTE EVALUATION SERVICES WHEN THERE’S NO
ASSOCIATED BILLABLE VISIT. THIRD, TO PAY CLINICIANS WHEN THEY REVIEW
AND EVALUATE PATIENT SUBMITTED PHOTOS OR RECORDED VIDEO.
AND FOURTH, TO EXPAND MEDICARE COVERED TELEHEALTH SERVICES TO INCLUDE WHAT ARE CALLED PROLONGED
PREVENTIVE SERVICES. THE COMMENT PERIOD FOR THIS PROPOSED RULE
CLOSES IN SEPTEMBER, AND WE INVITE YOUR COMMENTS. IN APRIL, CMS RELEASED GUIDANCE FOR MEDICARE
ADVANCE PLANS TO EXPAND AND PARTNER WITH COMMUNITY BASED ORGANIZATIONS TO OFFER SUPPLEMENTAL
BENEFITS, MAY INCLUDE ADULT DAY CARE SERVICE, IN HOME SUPPORT SERVICES, OR RESPITE FOR CAREGIVERS.
WE PLAN TO RELEASE ADDITIONAL GUIDANCE ASSOCIATED WITH THE CHRONIC CARE ACT, I THINK I BELIEVE
IT’S LATER THIS YEAR. OOPS, SORRY.
AND ANOTHER PROPOSED RULE IS OUT, WE PROPOSED UPDATES AND QUALITY REPORTING CHANGES FOR
HOME HEALTH AGENCIES. THESE NEW FLEXIBILITIES MAY ALSO BENEFIT PEOPLE
LIVING WITH DEMENTIA WHO ARE LIVING AT HOME, THE COMMENT PERIOD FOR THESE PROPOSALS CLOSES
ON AUGUST 31 AND AGAIN WE INVITE YOUR COMMENTS ON THAT RULE.
ALL RIGHT. I’D LIKE TO TURN IT OVER TO OTHER REPRESENTATIVES
FROM THE V.A. PLEASE.>>GOOD MORNING.
THANK YOU VERY MUCH. I’D LIKE TO START WITH JUST A QUICK UPDATE
OF OUR V.A. GERIATRIC SCHOLARS PROGRAM. THIS PROGRAM IS UNIQUE IN THAT IT’S PROBABLY
ONE OF THE ONLY FOCUSED PROGRAMS THAT IS DEDICATED TO TAKING HEALTH CARE PROFESSIONALS AND PROVIDING
THEM WITH TRAINING IN GERIATRICS. WE’VE ALL SEEN AS THE MEDICAL AND NURSING
SCHOOLS CLOSED GERIATRICS, THE V.A., THIS IS ONE OF OUR LARGEST PROGRAMS, WORKFORCE
DEVELOPMENT PROGRAM. WE HAVE A FOCUS ON RULE V.A. CLINICS TO REACH
OUR POPULATION NOT EASY TO REACH. WE HAVE WE HAVE A PARTNERSHIP WITH THE INDIAN
HEALTH SERVICE, TO DO THAT. IT’S A COLLABORATION OF 12 V.A. RESEARCH EDUCATION
AND CLINICAL CENTERS, AND PARTNERSHIP WITH V.A. EMPLOYEE EDUCATION AS WELL AS HRSA FUNDED
PROGRAMS. A COUPLE UPDATES ON THE PROGRAM.
WE’VE GOT SEVERAL OF OUR SITES HAVE CLINICAL PRACTICE SPECIFIC TO DEMENTIA, MADISON, NEW
ENGLAND, PALO ALTO, PUGET SOUND. WE’VE DONE, AS WE DO EVERY QUARTER, SEVERAL
OF OUR WEBINARS ARE FOCUSED ON DEMENTIA AND YOU CAN READ THE TITLES OF THOSE.
GO AHEAD. WE ALSO HAVE A GERIATRIC SCHOLARS RURAL INTERDISCIPLINARY
TEAM TRAINING PROGRAM MODELED ON THE OLD TEAM TRAINING, IN THE CARE OF OLDER VETERANS, AND
WE HAVE SELECTED SITES FOR THAT IN SALISBURY, WILMINGTON, NORTH CAROLINA, SOUTH NEW MEXICO,
HOT SPRINGS ARKANSAS AND CONNELLLY ARKANSAS AND IN ROSE BUD, SOUTH DAKOTA, PARTNERSHIP
WITH IHS, AND WE’RE DOING A CONFERENCE IN CALIFORNIA ON BEST PRACTICES THAT WAS HELD
ON MAY 23. AND FINALLY WE HAVE EXTENDED OUR REACH PROGRAM
INTO INDIAN COUNTRY. THE PROGRAM HAS BEEN EXTENDED THROUGH JANUARY
2019, WE IMPLEMENTED IN FEBRUARY 2015 WITH 47 COMMUNITIES.
THEY HAVE A WEBSITE. THEY HAVE A BROCHURE AVAILABLE FOR DOWNLOAD,
AND THE TARGET WE HAD WAS WE MET THIS TARGET OF 50 TRIBAL COMMUNITIES BY FEBRUARY.
AND HRSA FUNDED WEB PROGRAMS FORMED A COALITION THAT IS GOING TO PROVIDE TRAINING FOR IHS
AND TRIBAL HEALTH PROGRAMS SERVING AMERICAN INDIANS AND ALASKA NATIVES REGARDING DEMENTIA
USING THE BANNER ALZHEIMER’S INSTITUTE TRAINING MATERIALS.
AND THAT’S OUR UPDATE. ANY QUESTIONS?
WE’RE WORKING HARD ON TRAINING.>>THANK YOU.
ONE QUICK QUESTION, AND THAT IS DO YOU KNOW THE NUMBER OF FAMILY CAREGIVERS THAT HAVE
ACTUALLY RECEIVED THE REACH PROGRAM THROUGH THIS INITIATIVE?
>>I DON’T HAVE THIS ENOUGH AT THE TIP OF MY FINGERS BUT CAN GET IT FOR YOU TO ENTER
INTO THE MINUTES.>>THANK YOU.>>THANK YOU.
HAPPY TO REPORT PROGRESS THROUGH THE RESEARCH COMMITTEE AND FOLKS TRYING SOME INITIATIVES,
ALZHEIMER’S AND ALZHEIMER’S RELATED TO MILESTONES AND ALONG THE WAY TO COMMUNICATE TO YOU THE
LATEST BYPASS BUDGET RELEASE. SO, TO REMIND YOU, THE BYPASS BUDGET, LEGISLATION
FOR WHICH WE’LL COMMENT ON IN A MOMENT, IS CONSTRUCTED BASED UPON EXTENSIVE INPUT FROM
RESEARCH COMMUNITIES AND OTHER ADVOCATE POPULATIONS. THEY HAVE PARTICULAR FOCUS IN SUMMITS HELD
ANNUALLY. SINCE THE LAST WE’VE HAD THE BENEFIT OF TWO,
FALL OF 2017 CARE AND SERVICES SUMMIT, MARCH OF THIS YEAR THE ALZHEIMER’S SUMMIT.
REMINDING YOU AGAIN THAT THE RESEARCH THAT COUNTS IN THE BYPASS BUDGET IS THAT WHICH
IS CONSISTENT WITH THE NAPA DEFINITION SO ALZHEIMER’S DISEASE AS WELL AS LEWY BODY,
FRONTOTEMPORAL, VASCULAR AND COGNITIVE IMPAIRMENT. THE PROCESS INVOLVES INPUT FROM VARIOUS CONSTITUENCY
ADVOCATE AND PROFESSIONAL GROUPS THROUGH SUMMITS AND THROUGH MEETINGS BETWEEN, ON THE BASIS
OF THESE RECOMMENDATIONS ARE ISSUED AND PUBLICIZED SO YOU’VE SEEN THOSE COMING FROM THE CARE
SUMMIT, MOST RECENT ALZHEIMER’S DISEASE SUMMIT. MILESTONES ARE GENERATED WHICH ARE MILESTONES
LINKED TO THE IMPLEMENTATION OF THOSE RESEARCH PRIORITIES.
IN TURN THEN STAFF LOOK AT THE MILESTONES AND ATTACH ESTIMATES OF COST NECESSARY TO
ENACT THOSE MILESTONES, AND THAT’S WHAT’S USED TO GENERATE THE BYPASS BUDGET.
AGAIN TO EMPHASIZE THE BYPASS BUDGET IS NOT SIMPLY A GLOBAL GENERALIZED ESTIMATE.
IT HAS WORKED WELL I THINK IN SUPPORTING OUR PROCESS, AND PUBLIC RESPONSE TO IT THAT IT’S
BUILT UPON SPECIFIC PRIORITIES AND RECOMMENDATIONS. SO THERE ARE BYPASS BUDGET LANGUAGE, REQUIRES
THE NIH DIRECTOR TO PREPARE AND TRANSMIT TO CONGRESS AFTER OPPORTUNITY FOR COMMENT BUT
NO CHANGE BY THE PRESIDENT, BY THIS COMMITTEE AS WELL AS HHS, THE ANNUAL BUDGET ESTIMATE
NEEDED INDEPENDENT OF PRESUMPTION ABOUT CONSTRAINTS ON RESOURCES IN ORDER TO MAXIMIZE PROGRESS
TOWARDS THE GOALS OF THE NATIONAL PLAN. THIS YEAR WE NOTE AGAIN AT NIH, EXERCISE WHICH
MULTIPLE INSTITUTES TAKE PART, NIA, NINDS, LEADERSHIP ROLE, ALL INSTITUTES HERE, ALL
OF WHOM ARE INTERESTED IN SUPPORTING RESEARCH GERMANE TO THE MISSION OF THIS COUNCIL.
AS A FRAMEWORK, RESEARCH ONTOLOGY IS USED, CADRO AS A NAME HAS BEEN AMENDED, WE WON’T
CHANGE THE ACRONYM, AND THE FRAMEWORK FOR IADRP, IT’S AN ALZHEIMER’S DISEASE RESEARCH
PORTFOLIO DATABASE THAT ALLOWS YOU TO ENTER, TO SEARCH BY DISEASE, BY CONDITION, BY AGENCY,
AS AN INDEX OF MOST OF THE RULES NOW INVESTMENT IN RESEARCH RELEVANT TO ALZHEIMER’S DISEASE
AND BYPASS BUDGET, EXERCISE TO TRACK PROGRESS TO MEETING MILESTONES PRESENTED THERE.
SO THIS IMPORTANT BRIEF IS A LISTING BY CATEGORIES OF THE FY 20, AGAIN EMPHASIZE FOR FY 20 FISCAL
YEAR, OF ADDITIONAL FUNDS REQUIRED, REQUESTED IN ORDER TO MEET THE MILESTONES.
I’LL DO A LITTLE ELABORATING UPON WHAT THESE ADD UP TO.
YOU CAN SEE THE TOTAL HERE, BOTTOM LINE, 4 7 $477.7 MILLION, THE REQUEST IS COMPLICATED
BECAUSE AS NECESSITY WE BUILD $477 MILLION INCREASE UPON ASSUMPTION OF WHAT THE BASE
WOULD BE IN FY19. ALL CALCULATIONS WE PRESUME ARE CONSERVATIVE
BASED ON FY19 FLAT TO THE YEAR FY 18. HOWEVER, THE ONLY BUDGET THAT WE CAN ACT UPON
AS A BASE IN OUR DISCUSSIONS HERE IS THE PRESIDENT’S BUDGET WHICH IN FACT CALLS FOR REDUCTION OR
LEVEL OF FUNDING FOR ALZHEIMER’S DISEASE APPROXIMATELY $400 MILLION LESS THAN THAT IN FY 18.
SO IN ORDER TO ACTUALLY MEET THE TARGETED INCREASE OF $477.7 MILLION ABOVE THE FY 18
LEVEL WE NEED THAT AMOUNT BUT AN ADDITIONAL $400 MILLION EQUIVALENT TO DIFFERENCE BETWEEN
THE PRESIDENT’S BUDGET AND OUR CURRENT BUDGET LEVEL, ALL INTENDED, PERHAPS IF THERE’S A
MOST IMPORTANT BOTTOM LINE, TO MEET A PROPOSED TOTAL RESEARCH LEVEL IN FY 20 OF APPROXIMATELY
$2.4 BILLION, AD/ADRD RESEARCH LEVEL. TO REMIND YOU OF THE HISTORY IN THE WAY THIS
HAPPENED OVER TIME, THE FIRST BYPASS BUDGET WAS RELEASED IN 2015, FY17 BYPASS BUDGET,
WHICH AS WE RELEASED TO THE COUNCIL AT THAT TIME REQUESTED $323 MILLION INCREASE.
IN THE FY16 APPROPRIATIONS, $350 MILLION INCREASE WAS PROVIDED WHICH ALLOWED US TO ACCELERATE
FY17 MILESTONES SO THAT IN FY 18 BYPASS BUDGET, RELEASED IN FY16, INDICATED REQUEST FOR $414
MILLION ADDITIONAL, IN THE FY17 APPROPRIATION INCREASE OF $400 MILLION WAS PROVIDED.
BYPASS BUDGET REQUEST FOR FY19 WAS $597 MILLION. AND IN FY 18, $414 MILLION PROVIDED, NOW THIS
YEAR WITH THE FY 20 AD BYPASS BUDGET REQUEST, ADDITIONAL $478 MILLION.
SO HISTORICALLY THE RELEASE AND REQUEST FOR ADDITIONAL FUNDS HAVE BEEN RESPONDED TO IN
CONTEXT BY PROGRESSIVE INCREASES OVER THE YEARS IN THE APPROPRIATIONS.
I WANT TO EMPHASIZE THIS YEAR IN PARTICULAR THE BYPASS BUDGET IN ADDITION TO THE IMPORTANT
CALCULATION OF ADDITIONAL FUNDS NEEDED TO SUPPORT RESEARCH IS A NARRATIVE THAT INCLUDES
MANY SCIENCE ADVANCES AS WELL AS PRIORITIES, AND I RECOMMEND THEM TO YOU AND ALL OTHERS
TO HAVE A SENSE OF THE RESEARCH SPECTRUM BEING SUPPORTED FROM BASIC TO CLINICAL TO CARE AND
CAREGIVING, ACCOMPLISHMENTS IN THE PAST AND IDENTIFICATION OF PRIORITIES FOR THE FUTURE.
I MENTIONED IADRP, THE PORTFOLIO DATABASE THAT ILLUSTRATES THE RESEARCH FUNDED.
THIS IS THE LINK TO IT. IT WILL CONTINUE TO OFFER TRACKING AND MILESTONES.
SIMILARLY YOU’LL HAVE A CHANCE TO EXAMINE MILESTONES AND LINKS TO PROGRESS THROUGH BYPASS
REQUESTS OVER THE YEARS AT THE LINK HERE. THE CONSIDERATIONS IN ISSUING BYPASS BUDGET
EACH YEAR INCLUDING THIS YEAR ARE COMPLEX. THAT IS, IT IS DEPENDENT UPON APPROPRIATIONS
OF PREVIOUS YEAR, THE WAY AS A RESULT OF THOSE APPROPRIATIONS ACCELERATE PROGRESS TOWARDS
GOALS WHICH MEANS WE CAN IN MANY CASES MOVE TO GOALS FOR SUBSEQUENT YEARS AND ACCELERATE
THOSE INTO THE YEAR IN QUESTION. FOR MILESTONES YOU’LL SEE WHAT WE ACCOMPLISHED,
WHAT NEW MILESTONES ARE EMERGING. IT’S AN NIH BYPASS BUDGET, I WANT TO EMPHASIZE
THAT’S BY LEGISLATION, SO THAT IT INVOLVES A CONTEXT IN WHICH THE ROLES OF MANY AGENCIES
AND ORGANIZATIONS BEYOND NIH ARE IMPORTANT TO US.
AND THEN THE LAST BULLET NOTE AS WE’VE HAD THIS EXTRAORDINARY INCREASE IN RESOURCES FOR
WHICH WE’RE ALL MOST GRATEFUL TO POLICYMAKERS AND APPROPRIATORS, IT’S BEEN CRITICAL, NOT
SIMPLY TO INCREASE RESEARCH FUNDING, BUT TO INCREASE THE RESEARCH SCIENTIFIC COMMUNITY
AND WE’RE GRATIFIED THAT AS WE TRACK THIS WE HAVE FOUND THAT FY17, FOR EXAMPLE, LAST
YEAR THE LAST FULL YEAR FOR WHICH WE HAVE INFORMATION, 39% OF THE GRANTS AWARDED WERE
TO INVESTIGATORS WHO HAD NEVER HAD IN FACT NEVER HAD APPLIED FOR RESEARCH SUPPORT FOR
ALZHEIMER’S RELATED DEMENTIAS, PRECISELY WHAT WE NEED TO CONTINUE PERPETUATE, TO BRING MORE
PEOPLE TO BRING TO BEAR UPON THE PROBLEMS WE FACE IN ALZHEIMER’S RESEARCH.
SOME OTHER UPDATES, THE FY19 BUDGET STATUS AS YOU KNOW IS STILL IN PROCESS, BUT JUST
TO RECOUNT FOR YOU THE SENATE PROPOSED AN APPROPRIATION FOR NIA WHICH WOULD HAVE INCLUDED
INCREASE IN ALZHEIMER’S, RELATED DEMENTIAS, BRINGING TOTAL TO $2.34 BILLION, SIMILAR TO
$2.5 BILLION, REMAINS TO BE SEEN HOW THE FY19 APPROPRIATION PROCESS WILL COMPLETE ITSELF.
YOU’LL REMEMBER A COUPLE YEARS AGO IN THE IMPORTANT CONTEXT OF MAKING RECOMMENDATIONS
FOR INTERVENTIONS THAT MIGHT BE EFFECTIVE IN PREVENTING OR SLOWING PROGRESSION OF AGE
RELATED COGNITIVE DECLINE OR DEMENTIA WE EMBARKED ON A PROCESS INVOLVING TWO ARMS, FIRST THROUGH
AHRQ, COMMISSION TO EVIDENCE BASED PRACTICE CENTER FOR ANALYSIS OF PEER REVIEWS DATA TO
RECOGNIZE LEVEL OF EVIDENCE, IN PARTNERSHIP WITH NATIONAL ACADEMY OF MEDICINE WHICH WAS
ASKED THEN TO PUT TOGETHER AN EXPERT PANEL, EXPERT IN THE SUBJECT MATTER AREAS, AND AS
A RESULT OF THESE TWO, BIPARTISAN BICAMERAL APPROACH, WE CAME WITH RECOMMENDATIONS THAT
MANY OF YOU WILL HAVE SEEN. WHAT SEE SEE AS ANOTHER CRITICAL NEED RIGHT
NOW TO HAVE ASSESSMENT OF THOSE AREAS OF RESEARCH AROUND CARE AND INTERVENTIONS FOR INDIVIDUALS
WITH DEMENTIA AND CAREGIVERS TO AGAIN IN TWO PHASES REVIEW PUBLISH RESEARCH TO ASSESS LEVEL
OF EVIDENCE, SUPPORT RECOMMENDATIONS, WITH THE ACADEMY OF MEDICINE TO MAKE ANALYSIS,
IMPORTANTLY OF WHAT IS IMPORTANT FOR TRANSLATION AND AREAS WHICH FURTHER RESEARCH IS NECESSARY
TO INCREASE LEVEL OF CERTAINLY ABOUT WHAT WORKS AND WHAT WORKS BEST.
ANOTHER MECHANISM OPEN TO US, AND ONE IN FACT THE 21ST CENTURY CURES ACT DIRECTED NIH TO
USE WAS THAT OF A PRIZE AUTHORITY. IN ADDITION TO USUAL GRANT MECHANISMS WE CAN
ISSUE A PRIZE FOR ACCOMPLISHMENT OF A PARTICULAR ACT.
AFTER A PROCESS INTERNAL AND THEN THROUGH SOLICITATION OF A GREAT DEAL OF INPUT NATIONALLY,
WE DETERMINED THAT THE PRIZE NIA WOULD OFFER WOULD BE ONE TARGETED TO TECHNICAL INNOVATION
IN CARE COORDINATION AND NAVIGATION, STILL BEING REFINED BUT WILL BE RELEASED FOR COMPETITION
FOR THE PRIZE OFFERED FOR SUCCESSFUL ACCOMPLISHMENT OF IDENTIFYING SUCH A TECHNOLOGIC INNOVATION.
ALSO I WANT TO ACKNOWLEDGE THAT IN JUNE CONVENED BY NINDS WITH PARTICIPATION, NGO ROUNDTABLE,
ORGANIZATIONS HERE PARTICIPATING, WHICH WAS AN EXTRAORDINARY CIRCUMSTANCE FOR US TO MEET
AND INTERACT WITH NIH STAFF WITH ADVOCACY GROUPS, POINTED TO REMINDER OF THE NEXT AD/ADRD
SUMMIT IN 2019 TO BE HELD IN THE NIH CAMPUS AS WELL.
AND FOR THOSE OF YOU WHO HAVE LONG TERM CALENDARS AND DON’T WANT TO FORGET IMPORTANT EVENTS,
PLEASE NOTE IN MARCH 24 AND 25 OF 2020 WILL BE THE AD/ADRD CARE AND SERVICES SUMMIT, THE
SECOND IN THAT SERIES. AGAIN, WE’RE COMMITTED TO A SUMMIT EVERY YEAR,
WHICH IN ROTATION I THINK AT A VERY APPROPRIATE PERIODICITY ACROSS THE SPECTRUM OF ALZHEIMER’S
AND RELATED DEMENTIA CONFERENCE RESEARCH.>>THANK YOU VERY MUCH.
WE’LL OPEN IT UP FOR QUESTIONS. ROB?
>>SO ONCE AGAIN, THANK YOU FOR ALL THE WORK THAT GOES INTO THIS.
I’M SURE IT’S QUITE A TASK TO DO THIS EACH YEAR.
JUST TO PUT TWO THINGS TOGETHER IN YOUR PRESENTATION, YOU’VE NOTED IN THE PAST WHEN CONGRESS HAS
PROVIDED FUNDING, YOU’VE BEEN ABLE TO OFTEN BRING THINGS FORWARD, DO THEM EARLIER THAN
YOU OTHERWISE WOULD HAVE. AND AS YOU NOTED, THE HOUSE AND SENATE IS
ON TRACK TO PERHAPS DO SO AGAIN FOR THIS FISCAL YEAR.
SO AS YOU LOOK FORWARD IN YOUR PROFESSIONAL JUDGMENT IF CONGRESS WERE TO PROVIDE ADDITIONAL
FUNDING DO YOU SEE THE OPPORTUNITY AS YOU HAVE IN PAST YEARS TO ACCELERATE PROGRESS
ON MILESTONES?>>ABSOLUTELY.
A COUPLE POINTS ABOUT THE BYPASS BUDGET, I THINK IT’S BEEN EFFECTIVE AS A TOOL IN COMMUNICATION
REFLECTED IN MANY WAYS BUT AMONG THEM HAS BEEN APPROPRIATIONS HEARINGS, WHEN WE’VE HEARD
DURING FORMAL HEARINGS AND CONVERSATIONS WITH APPROPRIATORS, DEGREE TO WHICH THEY HAVE CONFIDENCE
BECAUSE ARE LINKED TO CONCRETE GOALS AND NOT ABSTRACT.
WHEN THE FUNDING COMES THEY UNDERSTAND THAT ALLOWS US TO ACCELERATE RESEARCH THAT WE MIGHT
HAVE BEEN PROPOSING FOR AN OUT YEAR, DOES THAT MEAN YOU DON’T NEED FUNDING, NO, IT ALLOWS
US TO TAKE RESEARCH A YEAR FURTHER OUT AND ACCELERATE INTO THE YEAR OF REQUEST.
IT’S A CONSTANT TARGETING. THIS YEAR THE SAME WOULD BE TRUE I THINK.
>>I HAVE AN IN THE WEEDS QUESTION AND GENERAL QUESTION.
I’M WONDER FIGURE WE COULD QUICKLY GO BACK TO THE SLIDE THAT YOU SHOW THE DISTRIBUTION
OF I GUESS THE MONIES TO DIFFERENT CATEGORIES, CARE, TRANSLATION AND SO FORTH.
I’M SORRY. MY QUESTION IS REALLY DEFINITIONAL, MAYBE
THIS IS TOO MUCH IN THE WEEDS. SO BUT I THINK IT’S
>>MAYBE IT’S EASIER TO SEE.>>THANK OF YOU.
TRANSLATIONAL RESEARCH AND CLINICAL INTERVENTION, WOULDN’T THAT OVERLAP WITH CARE?
>>YES, IT’S A IMPORTANT QUESTION. THESE ARE CATEGORIES IN WHICH INDIVIDUAL RESEARCH
AREAS CAN CROSS CATEGORIES. WE WANT THE NUMBERS TO ADD TO THE BYPASS BUDGET,
WE HAVE TO MAKE IT ADDITIVE BUT THEY OVERLAP. VERY PERCEPTIVE.
SOME OF THE MOST IMPORTANT ACCELERATED RESEARCH IN CAREGIVER SUPPORT HAS BEEN THROUGH CLINICAL
TRIALS AND INTERVENTIONS, AND MUCH OF THAT APPEARS IN THE CATEGORY.
TO GET A FULL AND DETAILED PICTURE I THINK ONE CAN BEAR DOWN THROUGH THE VARIOUS LEVELS
OF CADRO AND CATEGORIES AND SEE HOW THIS APPEARS AND MAYBE TAKING YOUR QUESTION AND ROB’S TOGETHER,
THE WAY ACCELERATION OF PROGRESS WORKS AND FEEDS INTO ON A BYPASS BUDGET, FROM THE FY17
CARE AND SERVICES SUMMIT INVOLVED MEETINGS AND PRE MEETINGS.
WHEN NIA AND THE REST OF NIH SAW THE RECOMMENDATIONS COMING, WE DID NOT WAIT UNTIL THE ISSUANCE
OF THE 2020 BYPASS BUDGET TO BEGIN IMPLEMENTING. WE ACCELERATED BEFORE THE FORMAL RELEASE OF
THE RECOMMENDATIONS, IN FY 18 AND FY19, A LARGE NUMBER OF INITIATIVES IN THAT CATEGORY,
THAT ACCELERATED PROGRESS INTO ALREADY FUNDED RESEARCH THAT NO LONGER NEEDED TO BE PART
OF THE REQUEST FOR FY 20, FY 20 REQUEST TAKING THINGS FURTHER DOWN THE LINE.
SOME SPECIFICS CAN MAP WELL AND TRACK AS WE LINK MILESTONES TO FUNDED RESEARCH.
>>THAT’S VERY, VERY HELPFUL. THANK YOU.
THIS MAY NOT REALLY WORK FOR THE PURPOSES OF BYPASS BUT I WAS THINKING OF THE CATEGORIES
FROM SARAH’S PRESENTATION IN TERMS OF RISK, PREVENTION, YOU KNOW, CARE AND CURE.
AND HOW THE NUMBERS LINE UP THAT WAY AS WELL. THERE MAY BE TOO MUCH OVERLAP.
DO YOU SEE IN TERMS OF>>IT WOULD BE A CHALLENGE.
>>IT WOULD BE A CHALLENGE, YEAH, YEAH. I THINK IF WE’RE SERIOUS ABOUT THINKING THROUGH
THAT THESE ARE THREE LET’S SAY EQUAL BUCKETS, WHAT DOES THAT REALLY LOOK LIKE PLAYING OUT
IN TERMS OF OUR DEDICATION, YOU KNOW, OUR ALLOCATION?
>>YEAH, I WON’T HAVE TO ASK, FOR EXAMPLE, LOOKING AT CLINICAL INTERVENTIONS AND TRANSLATION
HOW MUCH OF THAT IS TREATMENT OF EXISTING SYMPTOMATIC DISEASE AND HOW MUCH IS PREVENTION.
AS YOU KNOW IN THAT AREA AS ONE EXAMPLE THERE’S BEEN A MOVE TO EARLY INTERVENTION WHICH BECOME
PREVENTION, AND SIMILARLY EPIDEMIOLOGY DIRECTED AT TREATMENT OR PREVENTION.
>>RIGHT.>>OR CARE AND SERVICES.
THEY CROSS OVER.>>THAT’S RIGHT.
>>AND I THINK IT’S A USEFUL THOUGHT EXERCISE BUT NOT A SIMPLE ONE.
>>YEAH, I WOULD AGREE WITH THAT. HERE IS MY GENERAL QUESTION.
IT HAS TO DO WITH ACTUALLY LISA AND RICHARD, WE HAVE TWO DIFFERENT INFOGRAPHICS, IF YOU
WILL, AND THEY HAVE TWO DIFFERENT NUMBERS ON THEM.
AND DIFFERENT WAYS OF REFERRING TO DEMENTIA. I FIND THAT KIND OF CURIOUS.
I WAS WONDERING, FOR EXAMPLE, IT SAYS TODAY NEARLY 6 MILLION AMERICANS ARE LIVING WITH
ALZHEIMER’S DISEASE, HERE IT SAYS IT’S NOT THAT FAR OFF, 5.5 MILLION OLDER ADULTS, THERE
SEEMS TO BE DIFFERENT NUMBERS BY DIFFERENT AGENCIES, AND ALSO JUST WHAT’S CITED IN THE
ALZHEIMER’S ANNUAL REPORTS AND SO FORTH AND WHETHER WE PERCEIVE THIS AS AN ISSUE AND WHETHER
IT NEEDS TO BE SORTED OUT, ALONG WITH TERMINOLOGY. THERE’S DIFFERENT TERMS BEING USED IN ALL
OF OUR DOCUMENTATION AND I THINK THAT COULD BE VERY CONFUSING.
YOU KNOW, WE SORT OF GO WITH IT BECAUSE WE’RE LOOKING AT THE PUNCH, BUT I THINK IT COULD
POTENTIALLY BE CONFUSING.>>RIGHT.
THE NUMBER WE’RE USING REALLY IS THE 5.7 MILLION THAT THE ALZHEIMER’S ASSOCIATION REPORTED
IN THEIR ANNUAL FACT AND FIGURES THIS YEAR. TO MAKE OUR DOCUMENT MORE EVERGREEN WE DID
NEARLY 6 MILLION BECAUSE THAT NUMBER AS WE KNOW IS GROWING AND GROWING FAST, AND OUR
DOCUMENT THAT WE’LL TALK ABOUT IN A COUPLE MINUTES IS MEANT TO BE A FIVE YEAR DOCUMENT.
>>OKAY.>>JUST A GENERAL POINT THAT WE MAY NEED TO
PAY A LITTLE BIT MORE ATTENTION. I DON’T KNOW IF THAT’S SOMETHING ASPE MIGHT
WANT TO THINK ABOUT. BUT WHERE DO FIGURES COME FROM AND WHAT ARE
WE PUTTING OUT THERE. I’LL LEAVE THAT OUT THERE.
IT COULD BE A WHOLE DAY’S DISCUSSION.>>THAT’S ALSO REALLY IMPORTANT WHEN WE PUT
OUT THE PLAN AS WELL BECAUSE WE ALSO HAVE TO USE A PHRASE THAT IS, YOU KNOW, SOFT ENOUGH
THAT IT COVERS BUT ALSO WE’RE TALKING ABOUT MORE THAN JUST ALZHEIMER’S DISEASE AND IT
GETS A LITTLE BIT SQUISHY THERE ABOUT THE OTHER DEMENTIAS, AND HOW TO COUNT THOSE.
SO I THINK THAT’S AN IMPORTANT ISSUE.>>ALSO HOW WE REFER, IN OTHER WORDS, YOU
KNOW, ON RICHARD’S SLIDES, AD/ADRD, YOU KNOW, MAYBE THAT’S WHAT WE’RE GOING TO USE.
DO YOU SEE WHAT I MEAN, THROUGH THE REPORT AND SO FORTH IT GETS TO ANGELA YOU KNOW, THE
POINTS YOU RAISED PREVIOUSLY WITHOUT HAVING THAT COMMITTEE WORK GO INTO DEPTH, MAYBE WE
NEED TO COME UP WITH SOME DECISION AS TO WHAT THE COMMON LANGUAGE WILL BE.

Author: Kevin Mason

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