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GOOD MORNING, EVERYONE. IF WE CAN FIND OUR SEATS,
PLEASE. GOOD MORNING AND WELCOME TO THE
NEXT ADVISORY COUNCIL MEETING ON RESEARCH CARE AND SERVICES FOR
THE NATIONAL ALZHEIMER'S PROJECT ACT.
I WANT TO THANK ALL OF YOU FOR MAKING IT THROUGH THE RAIN
FOREST TO GET HERE AND SURVIVING.
IT'S INTENSE OUT THERE. HELEN WAS GOING TO TELL US TO
BRING RAFTS TODAY BECAUSE THE AIR CONDITIONING IS USUALLY
OVERWHELMING, BUT NOT TODAY. NOT WORKING QUITE AS WELL.
SO FEEL FREE TO GET UP, WALK AROUND, TAKE OFF JACKETS AND THE
LIKE. WE HAVE A FULL AGENDA TODAY.
A LOT OF INTERESTING TOPICS THAT WE ARE GOING TO EXPLORE.
WE HAVE A COUPLE OF GUESTS WHO ARE GOING TO ENLIGHTEN US ON
LONG TERM SERVICES AND THE DISCUSSION, SOME OF THE DEBATE
AROUND THAT ISSUE. I'VE ASKED HELEN TO TAKE US
THROUGH THE 2013 VERSION OF THE PLAN AND SORT OF WALK US THROUGH
WHAT'S NEW, WHAT'S BEEN REVISED, WHAT'S COMPLETED, WHERE WE ARE,
JUST TO BRING US ALL UP TO DATE ON HER WORK AND THE FEDERAL WORK
GROUPS AS WELL. THEN WE'RE GOING TO BREAK FOR
LUNCH, AND THIS AFTERNOON, WE'LL HAVE BRIEF UPDATES FROM OUR
FEDERAL WORK GROUPS, AND WE'LL DISCUSS A FEW OTHER HOUSEKEEPING
ITEMS GOING FORWARD WITH RESPECT TO COMPOSITION OF THE COMMITTEE
BECAUSE AS YOU KNOW, SOME INDIVIDUALS ARE TURNING OVER AS
REQUIRED, AND NEW PEOPLE WILL BE COMING ON BOARD TO DISCUSS THAT
PROCESS, AND THEN LAST MEETING, WE HAD DISCUSSED THE ISSUE OF
RESEARCH IN THE OTHER SUBCOMMITTEES.
NOT ONLY THE RESEARCH COMMITTEE, BUT RESEARCH QUESTIONS BY THE
CLINICAL COMMITTEE, BY LONG TERM SERVICES AND SUPPORT, AND DAVE'S
GROUP HAS MET ON THAT, HE'S GOING TO SAY A COUPLE WORDS ON
THAT, SO WE'RE ALSO GOING TO APPROACH HOW WE'RE -- DISCUSS
HOW WE'RE APPROACHING THAT FROM THE FEDERAL SIDE FIRST AND
BRINGING SUBCOMMITTEES ON BOARD. SO THAT'S WHERE WE'RE GOING, BUT
I THOUGHT I'D JUST ASK A COUPLE OF PEOPLE TO SAY A COUPLE OF
IMPROMPTU REMARKS ABOUT SOME THINGS THAT HAVE BEEN HAPPENING
IN THE FIELD. HARRY, I DON'T THINK I GAVE YOU
A WARNING BUT JUST HAVING COME FROM THE AAIC, THE ALZHEIMER'S
ASSOCIATION INTERNATIONAL CONFERENCE IN BOSTON, JUST
WRAPPED UP YESTERDAY, VERY SUCCESSFULLY, BUT COULD YOU
SHARE A COUPLE OF HIGHLIGHTS WITH US FOR THE GENERAL GROUP?
>> SURE! THANKS, RON.
WE HAD 5,000 PEOPLE IN BOSTON FOR AAIC.
LOTS OF GREAT SCIENCE PRESENTATION.
WE WOULD LIKE TO HAVE THE BREAKTHROUGH THAT CHANGES THE
VERY COURSE OF ALZHEIMER'S DISEASE BUT WHAT WE DID HAVE
THIS YEAR WAS A LOT OF SCIENCE GOING ON ACROSS THE SPECTRUM OF
ALZHEIMER'S THAT WILL ULTIMATELY, I BELIEVE,
CONTRIBUTE TO THAT OUTCOME. CERTAINLY THE CHAIRMAN IS
MODEST. HE MADE MANY PRESENTATIONS
THROUGHOUT THE CONFERENCE. MANY OF THE FOLKS SEATED AT THIS
TABLE WERE PRESENT, WHICH WE APPRECIATE FOR ALL OF YOUR
CONTRIBUTIONS TO THAT CONTENT. VERY EXCITING, HAD PEOPLE FROM
AROUND THE WORLD, I DON'T HAVE THE FINAL NUMBERS YET BEYOND THE
5,000, BUT TYPICALLY AT LEAST, I WOULD SAY, A THIRD OF THOSE
PEOPLE TEND TO BE FROM INTERNATIONAL LOCATIONS WHEN
WE'RE IN THE UNITED STATES FOR THE CONFERENCE, SO VERY
EXCITING, VERY GOOD MEDIA COVERAGE OF THE ISSUE, WHICH IS
ALSO, AS BASED UPON EVEN THE RECOMMENDATIONS THIS GROUP HAS
MADE IN THE PLAN ITSELF, VERY IMPORTANT TO THE PROCESS AS
WELL, SO ADVANCING THE SCIENCE BY HAVING PEOPLE TOGETHER ONCE A
YEAR TO SHARE AND COLLABORATE AND THEN ADVANCING THE CAUSE BY
CONTRIBUTING TO THE PUBLIC'S KNOWLEDGE OF WHAT'S HAPPENING IN
THE DISEASE. SO AGAIN, THANKS TO ALL WHO
PARTICIPATED IN THAT IN ONE WAY OR ANOTHER FOR YOUR
CONTRIBUTIONS. THANKS, HARRY.
SPEAKING OF THE INTERNATIONAL COMPONENT OF THAT, A BIG PART OF
OUR CHARGE IS INTERNATIONAL GLOBAL RELATIONS, GEORGE, YOU'VE
HAD CONVERSATION WITH FOLKS ABOUT THE UPCOMING G8 MEETING.
WONDERING IF YOU COULD SHARE SOME THOUGHTS ON THAT.
SURE. THANK YOU, RON.
AS MANY OF YOU KNOW, PRIME MINISTER CAMERON HAS DECIDED TO
MAKE ALZHEIMER'S AND DEMENTIA THE CRITICAL THEME OF HIS
PRESIDENCY OF THE G8, WHICH IS IN THE CALENDAR YEAR 2013, AND
TO THAT END, HE IS GOING TO HAVE A DEMENTIA -- ALZHEIMER'S AND
DEMENTIA SUMMIT IN LONDON NEAR THE END OF THE YEAR, DECEMBER 10
AND 11. AT WHICH POINT THE EIGHT HELP
MINISTERS -- HEALTH MINISTERS OF THE G8 WILL BE IN ATTENDANCE,
THE WHO AND THE WCD, TO BASICALLY FOR THE FIRST TIME
FRAME UP WHAT A GLOBAL RESPONSE TO THIS DISEASE MIGHT LOOK LIKE,
WHAT WE CAN DO MORE EFFECTIVELY TRANSNATIONALLY THAN NATIONALLY
BY ADDING TO THE WEIGHT OF WHAT'S HAPPENING.
PART OF IT IS GOING TO BE SCIENCE, PART REGULATION AND
POLICY, INTERESTINGLY PART IS GOING TO BE ABOUT CARE GIVING
AND CAREERS AND HOW WE CAN BE MORE EFFECTIVE AT DELIVERING
QUALITY CARE AT A LOWER COST, AND WE'RE ALSO GOING TO TALK
ABOUT SOCIAL FINANCE, SOCIAL IMPACT FINANCE, AND INVESTMENTS.
SO WE'RE TALKING ABOUT RESOURCE, SCIENCE, REGULATION AND POLICY,
AND CAREGIVING. THERE WILL BE AFTER -- AFTER
THAT SUMMIT, THERE WILL BE FOUR INTERNATIONAL WORKSHOPS HELD IN
2014, ONE AROUND EACH OF THOSE THEMES.
FINANCE AND INVESTMENT, CAREGIVING, REGULATION AND
POLICY, AND I'M LEAVING ONE -- AND SCIENCE OBVIOUSLY.
SO IT PROMISES IF, IN FACT, WE CAN TAKE ADVANTAGE OF THIS
OPPORTUNITY TO POUR SOME REALLY INTERESTED AND ACTION-ORIENTED
AND PRACTICAL AND REALISTIC CONTENT INTO THIS LEADERSHIP BY
CAMERON THAT WE CAN ADD SOME RESOURCE AND SOME MOMENTUM OF
THOSE THINGS THAT CAN BE DONE ACROSS NATIONAL LINES AND NOT
JUST INSIDE OUR RESPECTIVE NATIONAL BOUNDARIES.
VERY GOOD. THANKS, GEORGE.
I WAS REMISS, AS ALWAYS, WE ALL KNOW EACH OTHER PRETTY WELL NOW,
BUT I THINK WE SHOULD GO AROUND THE TABLE BUT I FIRST WANT TO
INTRODUCE NICK KOZAUER FROM THE FDA.
AS YOU REMEMBER FROM THE LAST MEETING, RUSTY KATZ WAS RETIRING
SO NICK, THE HEIR-APPARENT THERE.
SO I'LL START WITH NICK AND MAYBE YOU CAN GIVE US JUST A
LITTLE BIT OF YOUR BACKGROUND, THEN WE'LL GO AROUND THE TABLE,
WHO WE ARE. THANK YOU VERY MUCH.
MY NAME IS NICK FROM THE FOOD AND DRUG ADMINISTRATION.
I AM THE CLINICAL TEAM LEAD IN THE DIVISION OF NEUROLOGY
PRODUCTS AT FDA THAT DEALS WITH ALZHEIMER'S DRUGS.
AND SO I'M THRILLED TO AB PART OF THE COMMITTEE AND I WILL DO
MY BEST TO FILL THE MASSIVE SHOES THAT RUSTY KATZ HAD IN
REPRESENTING THE FDA HERE.
HI, I'M AMBER STORY. I'M THE DEPUTY DIVISION DIRECTOR
FOR BEHAVIORAL AND COGNITIVE SCIENCES AT THE NATIONAL SCIENCE
FOUNDATION. GOOD MORNING.
THIS IS SHARI LING, DEPUTY CHIEF MEDICAL OFFICER AT THE CENTERS
FOR MEDICARE MEDICAID SERVICES AND ALSO LEAD FOR THE GOVERNMENT
SUBWORK GROUP ON CLINICAL SERVICES.
HARRY JOHNS, PRESIDENT OF THE ALZHEIMER'S ASSOCIATION IN MY
DAY JOB AND A MEMBER OF THE RESEARCH SUBCOMMITTEE AS PART OF
THIS GROUP. MORNING.
I'M CHIEF OF THE GERIATRICS AND ALLIED HEALTH BRANCH AT THE
HEALTH SERVICES ADMINISTRATION. ROLLS RIGHT OFF THE TONGUE.
HI, I'M LAUREL COLEMAN. FROM MAINE AND I SERVE ON THE
CLINICAL CARE SUBCOMMITTEE.
GOOD MORNING. I'M GERI WOOLFOLK, AND I AM ON
THE LONG TERM SUPPORT SERVICES SUBCOMMITTEE.
GOOD MORNING, HELEN MATHENY WITH THE NEUROSCIENCES
INSTITUTE, AND I SERVE ON THE CLINICAL CARE COMMITTEE.
RON PETERSEN, NEUROLOGIST FROM THE MAYO CLINIC AND I'M ON
THE RESEARCH SUBCOMMITTEE. MY NAME IS HELEN LAMONT.
I AM IN THE OFFICE OF THE ASSISTANT SECRETARY FOR PLANNING
AND EVALUATION AND THE OFFICE OF DISABILITY AGING AND LONG-TERM
CARE POLICY, DESIGNATED FEDERAL OFFICER FOR THE ADVISORY PANEL.
DON MOULDS, ACTING ASSISTANT SECRETARY FOR PLANNING AND
EVALUATION HERE AT HHS. I'M JULIE MCMAHON FROM IOWA
DEPARTMENT OF PUBLIC HEALTH AND SERVING ON THE CLINICAL CARE.
I'M DAVE HOFFMAN, BUREAU DIRECTOR WITH THE NEW YORK STATE
DEPARTMENT OF HEALTH AND CLINICAL ASSOCIATE PROFESSOR AT
THE UNIVERSITY AT ALBANY. GEORGE VRADENBURG.
JANE TILLY WITH THE ADMINISTRATION FOR COMMUNITY
LIVING, AND WITHIN THAT, I'M WITH THE ADMINISTRATION ON AGING
AND I LEAD THEIR DEMENTIA AND COGNITIVE HEALTH PROGRAMMING.
JENNIFER MANLY. I'M A NEUROPSYCHOLOGIST AND
ASSOCIATE PROFESSOR AT COLUMBIA UNIVERSITY AND I'M THE CHAIR OF
THE RESEARCH SUBCOMMITTEE. RON BRUCE FINKE WITH THE
INDIAN HEALTH SERVICE, CLINICAL LEAD FOR GERIATRICS AND
LONG-TERM CARE. ANAND PAREKH HERE AT HHS.
I AM BILL SPECTOR AT ARC, HEALTH SERVICES RESEARCHER
SPECIALIZING IN LONG-TERM CARE.
THOSE INDIVIDUALS ON THE PHONE, PLEASE INTRODUCE
YOURSELF.
HELLO, CDC, SITTING IN FOR LYNDA ANDERSON WHO SENDS HER
REGRETS THAT SHE COULDN'T MAKE IT TODAY.
OKAY.
DAVID HYDE PIERCE, I'M ON THE LONG TERM SERVICES AND SUPPORT
SUBCOMMITTEE.
VERY GOOD. THANK YOU.
THIS IS ELEANOR MCCONNELL. I'M SITTING IN FOR CHRISTA
HOJLO. I'M AN ASSOCIATE PROFESSOR AT
DUKE UNIVERSITY AND ALSO WORK WITH THE OFFICE OF GERIATRICS
AND EXTENDED CARE AT THE V.A.
VERY GOOD. THANK YOU.
ANYONE ELSE ON THE PHONE? GOOD.
THANKS. AS I HOPE IS NOT GOING TO BE A
REGULAR OCCURRENCE IN OUR AGENDA, SOMEONE ELSE WHO MAY BE
RETIRING AND LEAVING US, JULIE HAS INDICATED THAT THIS MAY BE
HER LAST MEETING AS WELL, SO WE WANT TO THANK YOU FOR YOUR INPUT
AND WISH YOU WELL GOING FORWARD.
I'M RETIRING FROM 45 YEARS IN PUBLIC HEALTH, AND I WANT TO
JUST THANK THIS COMMITTEE BECAUSE ALZHEIMER'S HAS ALWAYS
BEEN A CONCERN THAT TRULY, SERVING AS LITTLE TIME AS I HAD
ON THIS COMMITTEE, I WANT TO GET INVOLVED VERY MUCH AND WILL GET
INVOLVED AND HAVE SHARED THAT WITH ALZHEIMER'S ASSOCIATION IN
IOWA AND EXPECT TO CONTINUE MY PUBLIC HEALTH ROLE IN THAT
CAPACITY.
OKAY. THEN LET'S TURN TO THE FIRST
MAJOR AGENDA ITEM. THIS WILL BE HELEN TAKING US
THROUGH THE 2013 PLAN. I'VE ALSO ASKED HELEN TO COMMENT
ON WHERE OUR RECOMMENDATIONS THAT WE MADE AT THE JANUARY
MEETING THIS YEAR, WHERE THEY HAVE BEEN INCORPORATED INTO THE
PLAN BECAUSE THAT WILL HELP US AS WE GO FORWARD REVISE OUR SET
OF RECOMMENDATIONS TO KNOW WHAT HAS, IN FACT, BEEN IMPLEMENTED.
THANK YOU, EVERYONE. THANK YOU, RON.
SO RON REMINDED ME THAT I AM INTIMATELY FAMILIAR WITH THE
NATIONAL PLAN AND THE 2013 UPDATE, AND MOST PEOPLE ARE
PROBABLY NOT. SO I'M GOING TO DO MY BEST TO
GIVE YOU AN OVERVIEW OF WHAT'S NEW IN THE PLAN AND ALSO JUST TO
POINT OUT ALL THE THINGS THAT ARE CONTINUING AND THAT HAVE
ALREADY OCCURRED BECAUSE I THINK WE'D BE REMISS TO ONLY FOCUS ON
THE NEW THINGS AND NOT PAY ATTENTION TO ALL OF THE WORK
THAT STARTED LAST YEAR AND HAPPENS TO BE CONTINUING SO IT
ISN'T HIGHLIGHTED IN THE 2013 UPDATE.
SO I THINK WE'VE TALKED BEFORE ABOUT HOW ASBI HAS THE LEAD FOR
HHS IN PLANNING AND PROMULGATING STRATEGIC PLANS AND NATIONAL
PLANS, SO I WENT TO OUR STRATEGIC PLANNER AND I SAID,
OKAY, HOW DO WE DO THIS? HOW DO WE UPDATE A PLAN
ANNUALLY? THERE WERE NO OTHER EXAMPLES OF
HOW TO DO THIS. SO WE WERE SORT OF OUT ON OUR
OWN TRYING TO FIGURE OUT WHAT WOULD MAKE THE MOST SENSE AND BE
USEFUL ON AN ANNUAL BASIS, SO WE STARTED WITH A COUPLE OF GOALS.
THE FIRST THINGS THAT WE HEARD FROM YOU GUYS WAS THAT WE WANTED
TO GET A REPORT ON PROGRESS. SO WE SHOWED YOU OUR TABLE AND
WE'VE HAD THESE MEETS, BUT EVERYONE EXPRESSED AN INTEREST
IN HAVING SOMETHING -- SOME TEXT ABOUT THE WORK THAT HAD BEEN
ACCOMPLISHED THAT YOU COULD POINT TO AND SAY THIS IS REALLY
WHAT'S BEEN DONE, SO WE INCLUDE THAT IN THE UPDATE.
WE ALSO WANTED TO INCORPORATE AS MANY OF THE RECOMMENDATIONS THAT
WE RECEIVED FROM THE ADVISORY COUNCIL AS POSSIBLE, TO THE
EXTENT POSSIBLE, SO WE LOOK TO THOSE FIRST IN OUR DETERMINATION
IN WHAT SHOULD GO IN THE UPDATE. WE MET WITH THE FEDERAL AGENCIES
AND OUR FEDERAL PARTNERS TO IDENTIFY NEXT STEPS IN THE
ACTION PLAN, SO IF WE HAD ITEMS THAT WERE COMPLETED, WHAT MADE
SENSE AS FOLLOW-UP OR WHILE THEY WERE OUT THERE DOING WORK, WHAT
DID THEY IDENTIFY AS THINGS THAT NEEDED MORE STEPS.
AND I REALLY HAVE TO THANK MY FEDERAL COLLEAGUES HERE BECAUSE
THIS WAS NOT HEAVY LIFT. THE FOLKS WHO HAVE BEEN WORKING
ON THIS NOT ONLY AT THIS TABLE BUT AROUND THE DEPARTMENT WERE
VERY EAGER TO OFFER NEW ACTION ITEMS, I'VE GOT A LONG LIST OF
NEW THINGS THAT THEY WANTED IN THE PLAN AND I REALLY THINK IT
SPEAKS TO FOLKS' COMMITMENT TO THIS ISSUE THAT THEY WERE ABLE
TO IDENTIFY WITH LIMITED RESOURCES WHAT THEY WOULD BE
WILLING TO DO AND COMMIT TO FOR THE NEXT YEAR.
WE ALSO LOOK TO EXPAND COLLABORATION, BECAUSE SOME OF
OUR GREATEST SUCCESSES IN THIS AREA HAVE BEEN THE COLLABORATIVE
ASPECT, WHICH IS ALSO GENERALLY LOW COST BUT CAN HAVE A BIG
IMPACT. AND TO REINFORCE MY POINT THAT
MANY OF THE ACTIONS IN THE ORIGINAL PLAN ARE ONGOING SO
DON'T DISMISS THEM. SO JUST BRIEFLY TO DO AN
OVERVIEW OF OUR PROGRESS TO DATE, AND THIS IS, AGAIN, IN
TEXT IN THE 2013 UPDATE, WE DEVELOPED THE RECOMMENDATIONS ON
HOW TO REACH THE 2025 GOAL THROUGH THE RESEARCH SUMMIT, THE
RESPONDING FOR NEW RESEARCH PROJECTS, WE TRAINED -- JOAN
PROBABLY HAS AN UPDATED NUMBER BUT OVER 10,000 HEALTHCARE
PROVIDERS ON TOPICS THAT COVER DEMENTIA DIAGNOSIS TO EFFECTIVE
BEHAVIOR MANAGEMENT. WE LAUNCHED AN AWARENESS
CAMPAIGN THROUGH ALZHEIMER'S.GOV CONNECTING PEOPLE WITH THE
RESOURCES WE HAVE. CMS AND NIH ADVANCED OUR WORK TO
DIAGNOSE FOLKS AND TO GET THAT INFORMATION OUT TO PROVIDERS BY
IDENTIFYING A SET OF VALIDATED TOOLS THAT PHYSICIANS CAN USE TO
IDENTIFY COGNITIVE IMPAIRMENT. NIA AND AOA JOINED TOGETHER FOR
WEBINARS ON CLINICAL TRIAL ENROLLMENT AND SUPPORTS AND
SERVICES. SO BOTH CLINICIANS -- EXCUSE ME,
BOTH THE RESEARCHERS HAD THE INFORMATION ON HOW TO GET
SERVICES AND SUPPORT TO THE PEOPLE THEY WERE SEEING IN THEIR
CLINICAL TRIALS AND THE PEOPLE WHO WERE PROVIDING THOSE
SERVICES AND SUPPORT KNEW WHERE TO REFER PEOPLE WHO WERE
INTERESTED IN GETTING INVOLVED IN RESEARCH TOO, AND THAT WAS A
VERY SUCCESSFUL COLLABORATION THERE.
ACL PARTNERED WITH THE ALLIANCE FOR AGING RESEARCH AND THE MET
LIFE FOUNDATION TO IDENTIFY EVIDENCE-BASED INTERVENTIONS
THAT WE ALREADY HAVE, THINGS THAT HAVE BEEN TESTED AND THAT
WE COULD POTENTIALLY ROLL OUT TO SUPPORT CAREGIVERS AND PEOPLE
WITH ALZHEIMER'S DISEASE. WE CONVENED A SPECIFIC
POPULATIONS TASK FORCE THAT FOCUSED ON THE UNIQUE CHALLENGES
FACED BY PEOPLE WITH DOWN SYNDROME, RACIAL AND ETHNIC
MINORITIES AND PEOPLE WITH YOUNGER ONSET DEMENTIA, THREE
POPULATIONS THAT HAVE THEIR OWN DISTINCT CHALLENGES, AND WE
RELEASED THAT REPORT ON JULY -- EXCUSE ME, THAT WAS JUNE 24TH,
NOT JULY 24TH. SO WE JUST RELEASED THAT REPORT.
NIH HELD A MEETING ON ALZHEIMER'S DISEASE AMONG PEOPLE
WITH DOWN'S SYNDROME TO IDENTIFY THEIR RESEARCH PRIORITIES AND
THEY HELD A RESEARCH SUMMIT ON OTHER DEMENTIAS.
THIS IS NOT EVERYTHING THAT WE'VE DONE BUT JUST A SUMMARY OF
SOME OF THE HIGH LEVEL POINTS THAT WE ARE PROUD OF.
SO GOING THROUGH THE PLAN MORE SPECIFICALLY, TO HIGHLIGHT THE
NEW WORK, STARTING AT STRATEGY 1A UNDER GOAL ONE, THERE WASN'T
MUCH NEW IN GOAL ONE BECAUSE I THINK WE CAPTURED A LOT IN THE
FIRST ITERATION OF THE PLAN, BUT SPECIFICALLY WE DID IDENTIFY
REGULARLY CONVENING THE RESEARCH SUMMIT, SO RICHARD IS NOT HERE
BUT I THINK IT'S FEBRUARY 8TH AND 9TH, 2015, NIH WILL BE
CONVENING THE NEXT A.B. RESEARCH SUMMIT AND THEY BELIEVE A
THREE-YEAR PERIOD BETWEEN THE FIRST SUMMIT AND THE NEXT SUMMIT
MAKES SENSE IN TERMS OF ADVANCING THE RESEARCH AND
IDENTIFYING NEW PRIORITIES. SO AT THAT POINT, THEY'LL BE
ABLE TO IDENTIFY WHERE WE'VE COME SINCE 2012 AND START TO
MOVE THINGS FORWARD. THAT WAS BASED ON ONE OF THE
RECOMMENDATIONS FROM THE ADVISORY COMMITTEE.
THE NEXT ONE WAS TO CREATE A TIMELINE FOR ACHIEVING GOAL 1.
I THINK EVERYONE REMEMBERS THE PRESENTATION THAT RICHARD DID
BACK IN APRIL ON THE DOCUMENT THEY PUT TOGETHER WITH THE
TIMELINE FOR GETTING FROM HERE TO 2025.
A VERY AMBITIOUS DOCUMENT AND NOT EVEN EASY TO POST ON THE
WEBSITE BECAUSE IT'S GOT SOME LINKS AND SOME CROSSWALKS, BUT
SOMETHING THAT'S VERY IMPORTANT FOR THE FIELD TO HAVE TO LOOK
TOWARDS 2025. AND THAT WAS ALSO BASED ON A
RECOMMENDATION FROM THE ADVISORY COMMITTEE.
THEN BRIEFLY THE OTHER STRATEGIES IN THIS GOAL THAT WE
DID NOT ADD NEW ACTIONS ON ARE THE EXPANSION OF RESEARCH, WHICH
WOULD INCLUDE THE NEW FOAS THAT NIA PUT OUT THAT RICHARD
WILL UPDATE US ON THIS AFTERNOON, AND THE ACCELERATION
OF EFFORTS ON IDENTIFYING EARLY AND PRESYMPTOMATIC STAGES OF
A.D. WHICH LINKS TO SOME OF OUR IMAGING AND BIOMARKER WORK.
I APOLOGIZE, I DID REALLY BORING SLIDES.
YOU'LL JUST HAVE TO LOOK AROUND. COORDINATING RESEARCH WITH
INTERNATIONAL PUBLIC AND PRIVATE ENTITIES IS ANOTHER ONE WHERE WE
DIDN'T DO MUCH BUT WE'VE HAD A LOT OF ACTIVITY AROUND THE
INVENTORY AND DATABASE WE'RE LOOKING TO TO MORE FORWARD, AND
FINALLY STRATEGY 1E, FACILITATE TRANSLATION OF FINDINGS INTO
MEDICAL PRACTICE AND PUBLIC HEALTH PROGRAMS.
THIS IS WHERE WE HAVE THE DRAFT GUIDANCE FROM FDA THAT WAS
INTRODUCED IN FEBRUARY 2013 AND THAT WE EXPECT TO BE FINALIZED
LATER THIS YEAR, AS WELL AS SOME NEW WORK FROM CDC TO REVIEW
RESEARCH ON CO-OCCURRING CONDITIONS AND DEMENTIAS, AND
THAT RELATES TO THE RECOMMENDATION ON IMPROVING
CHRONIC DISEASE TREATMENT. WE KNOW THAT PEOPLE WITH
ALZHEIMER'S DISEASE GENERALLY DON'T JUST HAVE ALZHEIMER'S
DISEASE, AND SO UNDERSTANDING THEIR CO-MORBIDITIES AND HOW TO
TREAT ALL THOSE CONDITIONS TOGETHER WILL FURTHER OUR WORK
IN THIS AREA. GOAL TWO, I THINK WE HAVE A FAIR
SPLIT BETWEEN NEW ACTIONS UNDER GOAL TWO AND GOAL THREE, AND
SPECIFICALLY UNDER GOAL TWO, THERE WAS A LOT OF INTEREST IN
EXPANDING THE KNOWLEDGE BASE OF THE WORKFORCE AND INCREASING THE
READINESS OF THE WORKFORCE TO DEAL WITH AN AGING POPULATION
AND A GROWING NUMBER OF PEOPLE WITH DEMENTIA.
SO FIRST ONE OFF THE BAT IS THE RECOMMENDATION TO DEVELOP A
UNIFIED CURRICULUM FOR PRIMARY CARE PRACTITIONERS, AND WE ARE
GOING TO BE DOING THAT THROUGH GERIATRIC CENTERS, AND WE'RE
THRILLED WE'RE ABLE TO RESPOND TO THAT RECOMMENDATION SO
QUICKLY. ENSURING THE AGING NETWORK HAS
RESEARCH ON UP TO DATE INFORMATION ON ALZHEIMER'S
DISEASE, EXTENDING THE WEBINARS TO MAKE SURE THAT FOLKS IN THE
FIELD AREN'T SAYING SOMETHING THAT'S INACCURATE OR OUT OF DATE
INFORMATION OR TELLING FOLKS TO DO CROSSWORD PUZZLES TO IMPROVE
THEIR MEMORY OR OTHER THINGS THAT WE'RE NOT SURE ACTUALLY
WILL MAKE A DIFFERENCE. WE WANT TO MAKE SURE THAT THEY
KNOW THE FINDINGS AS QUICKLY AS POSSIBLE.
THIS ALSO FACILITATES THE TRANSLATION OF FINDINGS EVEN
MORE QUICKLY AS NEW THINGS COME OUT AND AS NEW RESEARCH IS
PRESENTED. ENGAGING THE PUBLIC HEALTH
WORKFORCE ON BRAIN HEALTH. JULIE, WILL YOU HAND ME THE
BOOK? I DON'T KNOW -- I KNOW A FEW OF
YOU WERE THERE MONDAY MORNING IN BOSTON BUT CDC IN PARTNERSHIP
WITH ALZHEIMER'S ASSOCIATION RELEASED THE HEALTHY BRAIN
INITIATIVE AND THIS IDENTIFIES HOW STATES AND LOCAL PUBLIC
HEALTH DEPARTMENTS CAN GET INVOLVED IN BRAIN HEALTH.
I THINK WE WOULD LIKE TO EXPAND THE ROLE OF STATES IN THE
NATIONAL PLAN AND LOCAL PUBLIC HEALTH DEPARTMENTS IN THE
NATIONAL PLAN, BUT IT WASN'T CLEAR BEFORE HOW EXACTLY TO DO
THAT, AND THIS REALLY GIVES US A NICE SET OF PLACES WHERE THEY
CAN HELP US AND WHERE THEY CAN PARTNER WITH US ON THAT, SO
WE'RE EXCITED NOT ONLY ABOUT THE RELEASE OF THIS, BUT ALSO ABOUT
THE OPPORTUNITIES THAT IT PRESENTS TO PARTNER.
EDUCATING -- STRENGTHENING PRIMARY HEALTHCARE TEAMS IN
INDIAN COUNTRY. BRUCE CAN TALK A LITTLE ABOUT
THIS BUT WE'RE LOOKING TO EXPAND CAPABILITY OF NURSES AND ALL
THIS WORK FOR PRIMARY CARE PROVIDERS AND THROUGH OTHER
TRAINING MECHANISMS AS WELL. AGAIN ENSURING ACCURATE AND
TIMELY DIAGNOSIS. WE DON'T HAVE ANYTHING NEW HERE,
BUT THIS IS WHERE THE CMS AND NIA'S WORK ON ASSESSMENT TOOLS
IS RELEVANT AND CONTINUES TO BE RELEVANT.
WE'LL BE TALKING ABOUT HOW WE FURTHER EXPAND ACCESS TO THOSE
TOOLS FOR PROVIDERS. EDUCATING AND SUPPORTING PEOPLE
WITH A.D. AND THEIR FAMILIES ON DIAGNOSIS.
THAT'S AGAIN WHERE WE'RE TALKING ABOUT LINKING TO SUPPORTS AND
SERVICES AND THE OTHER INFORMATION PEOPLE FEED WHEN
THEY GET A DIAGNOSIS -- NEED WHEN THEY GET A DIAGNOSIS.
HERE AGAIN WE'RE EXPANDING OUR WORK WITH ALASKAN NATIVES AND
AMERICAN INDIANS LINKING THEM TO A.D. RESOURCES AND THE WORK
WE'VE DONE OUTSIDE OF HHS PER SE THAT IS RELEVANT TO FOLKS WHO
ARE GETTING A DIAGNOSIS. TWO EXCITING NEW THINGS UNDER
IDENTIFYING HIGH QUALITY DEMENTIA GUIDELINES AND
MEASURES. THE FIRST IS WORK WE'RE GOING TO
BE UNDERTAKING WITH NQS TO DEVELOP A CONCEPTUAL FRAMEWORK
FOR MEASUREMENT OF DEMENTIA CARE AND TO IDENTIFY CONCEPTS THAT
COULD BE TRANSLATED INTO PERFORMANCE MEASURES.
SHARI CAN SPEAK TO THIS MORE SPECIFICALLY THAN I CAN, BUT WE
MAY NEED HELP HERE BECAUSE NQS CANNOT CREATE MEASURES, SO ONCE
THEY IDENTIFY THE CONCEPTUAL FRAMEWORK AND WHERE IN THE CARE
PROCESS, THERE SHOULD BE MEASURES WE'RE GOING TO NEED
FOLKS TO DEVELOP MEASURES FOR THOSE AREAS WHERE WE DON'T
CURRENTLY HAVE THEM. SO WE'LL KEEP IN TOUCH WITH YOU
ALL ON THAT AND IDENTIFY PLAY PLACES WHERE YOU CAN PROVIDE
INPUT AND WHERE WE'LL NEED YOUR HELP.
THEN CONVENING AN EXPERT PANEL ON ADVANCED DEMENTIA, THIS WAS
BASED ON A STRONG RECOMMENDS FROM THE CLINICAL CARE AND FROM
THE LONG TERM SERVICES AND SUPPORT SUBCOMMITTEES TO FORM A
BLUE RIBBON PANEL OF EXPERTS ON ADVANCED DEMENTIA.
THIS WORK IS GOING TO BE CARRIED OUT PRIMARILY BY THE INSTITUTE
OF MEDICINE, SO WE WILL BE WRITING A CONTRACT WITH THEM TO
DO THIS WORK AND THEY'RE GOING TO WORK OUT THE PROCESS THAT
WILL BE UNDERTAKEN FOR THIS, SO TO ANSWER ANY QUESTIONS, I DON'T
KNOW HOW FOLKS WILL BE NAMED TO IT, WHAT SPECIFIC TOPICS THIS
GROUP WILL FOCUS ON, OR THE TIMELINE, ALTHOUGH I THINK WE'RE
TALKING ABOUT A MEETING IN THE WINTER AND THEN ANOTHER ONE IN
LATE SPRING OF NEXT YEAR. SO STAY TUNED FOR DETAILS ON
THAT AS WELL. NEW MODELS OF CARE FOR PEOPLE
WITH ALZHEIMER'S DISEASE. THE V.A. HAS BEEN DOING SOME
REALLY INTERESTING WORK AND WE HEARD FROM THEM, I THINK IN
JANUARY, ABOUT THEIR SYSTEM AND HOW THEY HAVE AN OPPORTUNITY TO
ROLL OUT THESE NEW PROGRAMS, SO THEY'RE GOING TO TALK ABOUT THE
RESULTS OF THEIR NEW CARE MODEL WITH US SO WE CAN LEARN WHAT
WORKED FOR THEM, WHAT DIDN'T WORK FOR THEM AND WHERE THE
CHALLENGES THEY FACED WERE. LOOKING AT TRANSITIONS BETWEEN
CARE SETTINGS, WE HAVE A PROJECT ON HOSPITALIZATION AND E.R. USE
AMONG PEOPLE WITH A.D. CDC IS IDENTIFYING INTERVENTIONS
THAT REDUCES -- FOCUS ON DEMENTIA FOR THE FIRST TIME AS
WELL. ADVANCING THE COORDINATION AND
INTEGRATION OF HEALTH AND LONG TERM SERVICES AND SUPPORT, THIS
IS ANOTHER ASBI PROJECT TO LOOK AT CARE AND INTEGRATION SO WHAT
ARE THE BENEFITS OF FULLY INTEGRATING CLINICAL CARE AND
LONG TERM SERVICES AND SUPPORT BEYOND HAVING THOSE AS TWO
SEPARATE SYSTEMS OR HAVING THEM COORDINATED BUT NOT INTEGRATED.
AND FINALLY, IMPROVING CARE FOR POPULATIONS DISPROPORTIONATELY
AFFECTED BY A.D. SO THIS IS WHERE THAT SPECIFIC
POPULATION TASK FORCE REPORT FITS IN, AND UNFORTUNATELY, THAT
REPORT CAME OUT A LITTLE LATE IN THE YEAR, AND WE'RE STILL
ADJUSTING IT AND FIGURING OUT WHAT THE NEXT STEPS ARE FOR THE
CARE OF THESE SPECIFIC POPULATIONS THAT WE SHOULD
UNDERTAKE IN THE COMING YEAR. SO LOOK FOR MORE UNDER THAT IN
THE FUTURE AS WELL. TOLD YOU TEASE SLIDES WERE
BORING. GOALS THREE, EXPANDING SUPPORT.
AFTER PROVIDING MATERIALS, WE'RE ALSO LOOKING AT ENABLING FAMILY
CAREGIVERS TO PROVIDE CARE WHILE MAINTAINING THEIR OWN HEALTH AND
WELL-BEING. SO HERE -- EXCUSE ME, HERE A
ACL, CMS AND IHS ARE GOING TO GET TOGETHER TO DO WEBINARS TO
TALK ABOUT LONG TERM SERVICE AND SUPPORT WITH TRIBAL PROVIDERS
AND AGAIN THAT EXCHANGE OF INFORMATION.
ACL AND NVA ARE GOING TO EDUCATE ONE ANOTHER ABOUT HOW TO ACCESS
SERVICES FOR FAMILY CAREGIVER, SO IF YOU'RE A CAREGIVER FOR
SOMEONE WHO IS A VETERAN, YOU MAY OR MAY NOT BE ABLE TO GET
SERVICES THROUGH THE V.A., BUT YOU CAN PROBABLY GO TO YOUR
AGING NETWORK AND HOW DO WE MAKE SURE THAT PEOPLE ARE NOT FALLING
BETWEEN THE CRACKS THERE AND HAVING ACCESS TO THESE SERVICES.
SOMETHING VERY EXCITING AND AGAIN BRUCE CAN SPEAK TO THIS AS
WELL IS THAT IHS IS LOOKING AT PILOTING REACH VA.
SO REACH HAS BEEN EFFECTIVE INTERVENTION FOR SUPPORTING
CAREGIVERS AND THE V.A. HAS BEEN ABLE TO ROLL THAT OUT THROUGH
THEIR SYSTEM IN SOME SPOTS AND WE'RE LOOKING AT ROLLING IT OUT
IN INDIAN COUNTRY. WE WEREN'T SURE FOR A WHILE
WHETHER OR NOT WE WERE GOING TO BE ABLE TO DO IT, BUT IT LOOKS
LIKE WE'RE GOING TO BE ABLE TO DO IT, SO THAT'S AN EXCITING
OPPORTUNITY TO EXPAND OUR IMPLEMENTATION OF EVIDENCE-BASED
PROGRAMS. PLANNING FOR FUTURE CARE NEEDS.
HUNTER IS GOING TO PRESENT TO US IN A LITTLE WHILE ABOUT WHAT
WE'RE DOING AT THE GOVERNMENT TO INCREASE AWARENESS OF LONG-TERM
CARE NEEDS, AND THAT WORKS VERY WELL WITH THIS GOAL.
THERE'S BEEN A LOT OF WORK ON MAINTAINING DIGNITY, SAFETY AND
RIGHTS OF PEOPLE WITH A.D. ASSISTANT SECRETARY FOR AGING
KATHY GREENLY HAS IDENTIFIED ELDER ABUSE AS A PRIORITY AND SO
THERE'S A LOT OF WORK OVER THERE AND ACROSS THE DEPARTMENT
RELATED TO ISSUES WITH ELDER ABUSE, MAKING SURE SERVICES ARE
CONNECTED. SO A LOT OF THAT BECAUSE PEOPLE
WITH DEMENTIA ARE AT A HIGHER RISK OF BEING ABUSED OR
EXPLOITED GOES TOGETHER WITH OUR WORK QUITE NICELY.
WE ARE ALSO EXCITED TO HAVE A NEW ACTION FROM THE CONSUMER
PROTECTION BUREAU. NAOMI KARP IS HERE AND WILL
PRESENT IN JUST A LITTLE BIT ON THEIR WORK, BUT SPECIFICALLY
THEY'RE GOING TO BE RELEASING A GUIDE FOR LAY FIDUCIARIES ON HOW
DO YOU MANAGE THE FINANCES OF SOMEONE WITH DEMENTIA AND WHAT
DO YOU NEED TO KNOW ABOUT THAT ROLE AND ABOUT DEALING WITH
SOMEBODY WHO HAS DEMENTIA. AND THEN FINALLY, WORK ON --
ACTUALLY IT'S NOT -- ASSESSING THE HOUSING NEEDS OF PEOPLE WITH
A.D. SO MOST OF WHAT WE'RE DOING
RIGHT NOW IS SORT OF IN THE RESEARCH WHERE ARE WE PHASE, BUT
THIS RELATES VERY NICELY TO A LOT OF WORK THAT'S BEEN GOING ON
IN THE DEPARTMENT AND IN CONSULTATION WITH HUD ON LINKING
HOUSING WITH SERVICES AND HOW YOU REALLY HAVE TO HAVE BOTH OF
THOSE THINGS TOGETHER IF YOU WANT TO IMPROVE OUTCOMES.
VERY QUICKLY, THE PUBLIC AWARENESS AND ENGAGEMENT WORK,
OUR PUBLIC AWARENESS CAMPAIGN IS NOT GOING TO BE QUITE TO THE
EXTENT THAT IT WAS IN THE PREVIOUS YEAR, BUT WE'RE HOPEFUL
THAT WE CAN KEEP THE WEBSITE GOING AND EXPAND IT AND THEN BE
ABLE TO RAMP UP FOR A LARGER AWARENESS CAMPAIGN IN THE
FUTURE. WE'RE ALSO WORKING AGAIN ON THE
PARTNERSHIP AREA OF MAKING SURE THAT NIH AND ACL'S WEBSITES AND
OTHER WEBSITES THAT FOLKS HERE RUN ARE UPDATED AND HAVE ALL THE
INFORMATION AND LINK QUITE NICELY.
WORKING WITH STATE, TRIBE AND LOCAL GOVERNMENTS TO IMPROVE
COORDINATION AND IDENTIFY MODEL INITIATIVES, THE ADSP PROGRAM
UNDER JANE'S LEADERSHIP IS GOING TO BE DEVELOPING PRACTICAL TOOLS
THAT CAN IMPROVE THE DEMENTIA CAPABILITY OF LOCAL AGENCIES AND
STATE AGENCIES, AND SENDING THAT OUT, SO EVEN THOUGH THAT'S QUITE
A SMALL PROGRAM, WE'RE HOPING THAT IT HAS A WIDE REACH BECAUSE
OF THE WAY IT'S DESIGNED AN BECAUSE OF THE TOOL KIT THEY'RE
GOING TO BE DEVELOPING. THAT FITS QUITE NICELY WITH OUR
DISCUSSION OF HOW WE CAN GET STATES AND LOCALITIES MORE
INVOLVED IN THE PLAN. THEN FINALLY, COORDINATING THE
U.S. EFFORTS WITH THOSE OF THE GLOBAL COMMUNITY FITS WITH SOME
OF THE G8 WORK THAT IS GOING ON, THERE'S SOME DISCUSSION THAT
OECD AND OTHERS ABOUT SOME OF THE GLOBAL STUFF, SO WE DON'T
HAVE ANYTHING SPECIFICALLY NEW IN HERE THAT WE ARE GOING TO
UNDERTAKE BUT WE ARE QUITE AWARE OF MANY OF THE EFFORTS THAT ARE
UNDERWAY AND ARE LOOKING FOR OPPORTUNITIES TO PARTNER THERE
AS WELL. THEN FINALLY OUR LAST GOAL IS TO
ENHANCE THE FEDERAL GOVERNMENT'S ABILITY TO TRACK PROGRESS, SO
MANY OF YOU MAY KNOW THE BEHAVIORAL RISK FACTOR SURVEY
HAS DATA ON COGNITIVE IMPAIRMENT AND THAT WAS CARRIED OUT IN
32 STATES BETWEEN 2009 AND 2013. CARRIED OUT ONE OF THE MODULES,
EITHER ON COGNITIVE IMPAIRMENT OR CARE GIVING SO CDC IS GOING
TO BE LOOKING AT THAT DATA TO SEE WHAT WE CAN FIND OUT ABOUT
COGNITIVE IMPAIRMENT AND CARE GIVING IN THOSE STATES.
CDC IS ALSO GOING TO BE DEVELOPING MEASURES OF AWARENESS
THAT WILL TIE QUITE NICELY TO GOAL FIVE.
THEN THE ONLY OTHER CHANGE WE MADE TO THE PLAN WAS TO UPDATE
THE IMPLEMENTATION MILESTONES TABLE FOR EASIER REFERENCE.
IT TALKS ABOUT SOME OF THE PROGRESS THAT WE'VE ALREADY
MADE. THE ACTION STEPS THAT HAVE BEEN
COMPLETED ARE IDENTIFIED, I REORDERED IT SO IT'S A LITTLE
BIT EASIER TO FIND THINGS ON IT AS WELL, BUT BY AND LARGE, THE
PLAN IS VERY SIMILAR TO WHAT WAS ALREADY THERE IN 2012.
IT LAID A VERY NICE FOUNDATION AND WE LOOK FORWARD TO
IDENTIFYING WHAT WE CAN DO TO UPDATE IT IN 2014.
THANK YOU. QUESTIONS?
VERY GOOD. THANK YOU, HELEN.
THAT WAS SUPERB. THAT REALLY BROUGHT THINGS INTO
FOCUS WITH REGARD TO WHERE THE PLAN IS, AND I THINK WE ALL KNOW
IT IN THIS ROOM, BUT I THINK WE SHOULD GIVE A FORMAL COMPLIMENT
TO HELEN FOR PUTTING ALL THIS TOGETHER.
[APPLAUSE]
BUT NOW LET'S GRILL HER. SO WHAT QUESTIONS?
GEORGE? HELEN, IT'S REALLY QUITE
EXTRAORDINARY. I MEAN, YEAR OVER YEAR, YOU LOOK
DAY BY DAY AND IT SEEMS LIKE WE'RE MAKING SUCH SLOW PROGRESS,
BUT YEAR OVER YEAR, AS THIS PROCESS IS REQUIRING US TO DO,
IT'S AN ENORMOUS AMOUNT OF COORDINATION, INTEGRATION OF
FEDERAL GOVERNMENT AGENCIES, AND I THINK IN AN UNUSUAL WAY.
THE NOTION THAT YOU COULDN'T FIND ANY EXEMPLAR FOR HOW TO
UPDATE A NATIONAL PLAN WAS KIND OF TELLING THAT, IN FACT, YOU'RE
DOING SOME REAL GROUND BREAKING WORK HERE SO CONGRATULATIONS.
MY QUESTION, SINCE I HAPPENED TO ALSO SIT ON LONG-TERM CARE
COMMISSION, HOW MUCH OF WHAT YOU THINK WE ARE DOING IN CONNECTION
WITH THIS WORK RELATES MUCH MORE BROADLY TO LONG TERM SUPPORT AND
SERVICES BEYOND THE DEMENTIA COMMUNITY?
I'M JUST CURIOUS. BECAUSE A LOT OF IT IS
DEMENTIA-SPECIFIC BUT A LOT OF IT LOOKS LIKE IT'S CROSS CUTTING
ACROSS A WHOLE SERIES OF SUPPORT AND A SERVICES ISSUES.
THAT IS A GREAT QUESTION, BECAUSE I AM IN THE OFFICE OF
AGING AND DISABILITY AND LONG-TERM CARE POLICY, REALLY
WHAT WE FOUND IS ANYTHING WE FIND RELEVANT FOR DEMENTIA IS
RELEVANT FOR THE LONG-TERM CARE POPULATION.
PEOPLE WITH DEMENTIA ARE THE MOST AT RISK, VULNERABLE, PEOPLE
WITH LONG-TERM CARE NEEDS. SO REALLY I CAN'T THINK OF
ANYTHING THAT WE HAVE IDENTIFIED IN THE LONG TERM SERVICES AND
SUPPORTS AREA THAT IS NOT RELEVANT TO THE BROADER
POPULATION OF FOLKS WITH LONG-TERM CARE NEEDS.
IF ANYTHING, OUR FOLKS ARE A LITTLE BIT MORE COMPLEX AND NEED
A LITTLE BIT MORE FOCUS AS WELL, SO THIS TIES VERY NICELY WITH
THINGS THAT WE ARE ALREADY DOING OR THINGS THAT WE'RE INTERESTED
IN DOING, BUT HAVEN'T HAD AN OPPORTUNITY TO EXPAND UNTIL WE
HAD THIS FORUM. ANOTHER GENERAL QUESTION.
AS YOU DO YOUR WORK, I MEAN, IT IS QUITE CLEAR THAT THERE ARE A
NUMBER OF PROGRAMS AND AGENCIES AND DEPARTMENTS, WHERE
ADDITIONAL RESOURCE TO EXPAND. BUT IF YOU RUN ACROSS ANY AREA
THAT YOU THINK TWEAKS TO YOUR AUTHORITIES, LEGISLATIVE
CHANGES, GIVING YOU BROADER AUTHORITY OR A BROADER REACH OR
DEEPER REACH IN SOME PARTICULAR AREA, IF YOU COME ACROSS AREAS
WHERE YOU SORT OF LIKE HAVE A LITTLE SHEET ON THE SIDE THAT
SAYS IT WOULD BE NICE IF THE LEGISLATION CHANGED TO GIVE US
MORE AUTHORITIES HERE OR HERE? I DON'T THINK I CAN SPEAK TO
THAT AS A FEDERAL EMPLOYEE BECAUSE IT WOULD BE POTENTIALLY
A VIOLATION OF THE HATCH ACT. BUT THERE IS A PROCESS THROUGH
THE DEPARTMENT WHERE CHANGES TO LEGISLATION CAN BE FORMALLY
SUBMITTED AND THERE IS A REVIEW PROCESS FOR THAT.
ALTHOUGH I DON'T KNOW OF A SPECIFIC EXAMPLE I COULD SAY
RIGHT NOW, THERE IS A PROCESS IN PLACE WHERE THIS COULD
POTENTIALLY HAPPEN, BUT GENERALLY WE WORK WITHIN THE
CONFINES OF THE LAW THAT WE HAVE.
AND ONE FINAL QUESTION. THIS IS REALLY DIRECTED TO
SHARI. THERE'S REFERENCE HERE OBVIOUSLY
TO YOUR EXCELLENT WORK WITH NIA AND DEVELOPING TOOLS.
DO YOU HAVE ANY MEANS OF MEASURING WHETHER THOSE TOOLS
ARE BEING USED? WE ACTUALLY ARE WORKING ON
THAT BUT DON'T HAVE ANYTHING TO REPORT CURRENTLY.
BUT IT IS ON OUR RADAR SCREEN AND WE ARE WORKING ON THAT.
HELEN, THANKS A LOT FOR THE CONCISE UPDATE.
FOR THOSE OF US THAT GET ASKED WHAT ARE YOU DOING AND WHAT
PROGRESS HAVE YOU MADE, THIS IS A GREAT CHEAT SHEET FOR THAT.
SO A LITTLE LONGER THAN THE ELEVATOR CONVERSATION BUT VERY
HELPFUL. I'M PERSONALLY LOOKING FORWARD
TO A LOT OF THE AGENDA ITEMS TODAY TO UNDERSTAND A LITTLE BIT
MORE ABOUT SOME OF THESE THINGS WE'RE TALKING ABOUT, CONSUMER
PRO TENSION, FINANCIAL MANAGEMENT, LONG-TERM CARE, I'M
REALLY LOOKING FORWARD TO THAT. AS YOU PRESENTED, I THOUGHT OF A
COUPLE OF OTHER AREAS WHERE PEOPLE ASK QUESTIONS ABOUT THIS
AND WHERE THIS PANEL THAT YOU MIGHT THINK ABOUT A COUPLE OR
TOPICS OR AGENDAS, UNDERSTANDING MORE ABOUT THE ADSP PROGRAM THAT
JANE RUNS AND WHAT DOES THAT -- WHO DO YOU IMPACT AND HOW AND
WHAT'S THE CURRICULUM, THAT COULD BE, I THINK, REALLY
USEFUL. ANOTHER SORT OF BLACK BOX WHERE
WE KNOW IT'S HAPPENING BUT DON'T REALLY KNOW ABOUT THE CONTENT
SPECIFICALLY OR SOME OF THE INNOVATIVE RESEARCH PROJECTS
THAT -- I GUESS WE -- THAT WE'RE FUNDING INDIANA AND UCLA ABOUT
DEMENTIA CARE IN THE COMMUNITY, AND INSTEAD OF JUST A
THREE-SENTENCE SUMMARY ABOUT THAT, GETTING A LITTLE BIT OF AN
UPDATE ABOUT A LITTLE DEEPER FROM EITHER -- FROM SOMEONE FROM
THOSE TEAMS OR WE COULD REACH OUT, I THINK THAT WOULD HELP US
UNDERSTAND MORE ABOUT TRANSFORMING CARE AND WHAT'S
HAPPENING THERE, SO THOSE THREE ITEMS.
ONE LAST THING, I WOULD SAY TO PEOPLE THAT THINGS -- REALLY
GOOD THINGS THAT WERE HAPPENING AROUND CARE AND SUPPORT GET
SILOED WITHIN THE GOVERNMENT JUST LIKE THEY GET SILOED
OUTSIDE IN THE DIFFERENT PARTS OF THE WORLD.
I'M PARTICULARLY ENCOURAGED BY HEARING THAT THE V.A. REACH
PROGRAM MIGHT GET OUT OF THE V.A. ONLY AND GET TO INDIAN
COUNTRY AND THAT'S REALLY HOPEFUL FOR ME BECAUSE WE DON'T
HAVE TO KEEP STUDYING, HEY, WHAT MIGHT BE USEFUL?
WE NEED TO GET OUT USEFUL PROGRAMS THAT ARE ALREADY PROVEN
AND I'M REALLY ENCOURAGED BY LOOKING AT BRUCE BECAUSE I KNOW
HE ADVOCATED FOR THAT, BUT JUST VERY ENCOURAGED BY THAT BREAKING
DOWN SILOS. THANKS TO YOU, HELEN, DON,
ALL OF OUR COLLEAGUES AT THE FEDERAL GOVERNMENT LEVEL,
CONGRATULATIONS, I THINK THIS IS GREAT PROGRESS FOR FIRST YEAR.
IF WE CAN MAKE THIS PROGRESS OVER THE COURSE OF THE PLAN,
WE'LL MAKE 2025, MOST LIKELY. I KNOW THAT WILL BE TOUGHER, BUT
TRULY, THIS IS, I THINK, AN EXCELLENT ILLUSTRATION OF WHAT
CAN BE DONE WITH THE KIND OF COORDINATION THAT YOU GUYS HAVE
ALL CREATED AND CREDIT TO YOU GUYS, YOU, HELEN AND DON
ESPECIALLY FOR PULLING THAT ALL TOGETHER.
I THINK IT IS TO UP TO THE REST OF US WHO, WHEN WE'RE NOT ON OUR
DAY AS A TEMPORARY FEDERAL EMPLOYEE, TO THEN GET THE
CONGRESS TO HELP PROVIDE THE FUNDING THAT WILL BE NECESSARY
TO MAKE ALL THE REST OF IT GO. >> LET'S GET THE V.A. REACH
PROGRAM OUT OF THE GOVERNMENT AND ACTUALLY INTO THE CIVIL YAP
WORLD TO THE NON-VETERANS AND NON-INDIAN COUNTRY WORLD.
I DO THINK YOUR POINT, LAUREL, IS ABSOLUTELY RIGHT, THAT
SOMEHOW I THINK WE OUGHT TO GET IT INTO THE MEDICARE SYSTEM, WE
OUGHT TO GET INTO THE PRIVATE SECTOR, WE OUGHT TO STOP ALL THE
DEMONSTRATION AND PILOT STUFF AND GET IT MOVING TO THE PEOPLE.
ONE LAST QUESTION, I GUESS, HELEN.
ENORMOUS AMOUNT OF ACTIVITY, GREAT DEAL OF COORDINATION.
ARE WE DEVELOPING OUTCOME MEASURES FOR GOALS TWO AND THREE
AS WE HAVE FOR ONE? ARE WE ACTUALLY FIGURING OUT HOW
TO ASSESS WHETHER ALL THIS NEW MATERIAL, NEW ACTIVITY, NEW
TRAINING IS TURNING IN TO ACTUAL CHANGES IN TERMS OF THE RATE OF
DIAGNOSIS OR THE IMPROVEMENT IN THE QUALITY OF CARE OF PEOPLE
AND AT WHAT RATE AND THE ABILITY TO SORT OF BEGIN TO GET INTO THE
REALLY TOUGH STUFF OF LOOKING AT ACTIVITY MEASURES.
SO THAT IS SUPPOSED TO BE INCLUDED IN GOAL 5 AND IT IS TO
SOME EXTENT INCLUDED IN GOAL 5. BUT IT'S ALSO VERY RELEVANT TO
THE DISCUSSION WE'RE GOING TO HAVE LATER TODAY ON SETTING OUR
RESEARCH AGENDA. ONE OF THE THINGS WE REALIZED IS
THAT WE SORT OF NEED TO KNOW WHAT THE CARE AND SUPPORT
EXPERIENCE LOOKS LIKE RIGHT NOW. THAT CAN BE USED AS A STARTING
POINT FOR IDENTIFYING PLACES WHERE WE NEED RESEARCH TO
IMPROVE THAT EXPERIENCE BUT ALSO CAN BE USED AS SURVEILLANCE
DATA, SORT OF WHERE ARE WE IN 2013, SO THAT'S SOMETHING WE ARE
INTERESTED IN EXPLORING AND LOOKING FORWARD TO EXPLORING,
ALTHOUGH THERE'S NOT A SPECIFIC STEP IN THE PLAN TO DO THAT.
SO WE ARE LOOKING AT THAT BUT WE HAVE NOT BEGUN THAT JUST YET.
AND IT'S SOMETHING, AGAIN, SITTING IN ASBI AND --
THEY'RE BETTER. WE ARE USED TO DOING THIS
SORT OF UNDERTAKING AND IT'S SOMETHING WE ARE LOOKING FORWARD
TO. THERE WILL BE SOME
INFRASTRUCTURE THAT IS NECESSARY AND WE ARE AWARE OF THAT, BUT WE
THINK THERE ARE A LOT OF DATASETS OUT THERE, SOME SURVEYS
ALREADY IN THE FIELD THAT WE CAN BUILD OFF OF FROM THE VERY
BEGINNING, AND THEN STEP FORWARD.
BUT IT DOES BECOME A QUESTION OF DO WE BUILD THE INFRASTRUCTURE
TO TRACK PROGRESS -- I THINK THIS SHOULD BE PART OF THAT
CONVERSATION AS WELL AS HOW DO WE PUT THOSE TWO THINGS TOGETHER
AND ADVANCE BOTH OF THEM. >> YOU HAVE A VOLUNTEER IF YOU
ARE WILLING TO PARTNER WITH MEMBERS OF THE ADVISORY COUNCIL.
HELEN? I WANT TO ADD MY
CONGRATULATIONS TO HELEN, DON, FOR YOUR EFFORTS, A TREMENDOUS
UNDERTAKING. I THINK YOU'VE DONE A GREAT JOB
OF PROVIDING AN UPDATE TO OUR PROGRESS BUT ALSO COMPILING THE
VAST LIST OF ACTIVITIES THAT ARE TAKING PLACE.
THE OTHER PIECE OF THAT IS A COLLABORATION, GREAT TO SEE THE
COLLABORATION AMONG THE FEDERAL AGENCIES.
ONE ASPECT OF THE UPDATE THAT I REALLY LIKED WAS THE LINK TO
WHETHER IT'S A REPORT OR TOOLS HAVE BEEN DEVELOPED, I THINK
THAT'S REALLY USEFUL IN TRANSLATING WHAT'S HAPPENING AT
THE STATE AND NATIONAL LEVEL, WHETHER IT'S FOR PUBLIC HEALTH
FOR POLICY MAKERS OR FOR PRIMARY CARE PHYSICIANS, TO BE ABLE TO
SEE THAT PROGRESS AND THEN HAVE QUICK ACCESS TO THOSE TOOLS.
SO I THINK THAT'S A GREAT WAY TO HELP TRANSLATE THAT.
I WOULD ENCOURAGE YOU TO TRY TO KEEP THAT UP IN TERMS OF AS NEW
REPORTS AND MATERIALS ARE AVAILABLE.
THAT IS ACTUALLY A BENEFIT OF NOT PRINTING THE PLAN.
WHEN YOU HAVE IT AS AN E-VERSION, YOU CAN CLICK
DIRECTLY ON
THE LINKS AS WELL. THANKS, HELEN.
THERE'S NEW RECENT DATA ON THE BURDEN AND EPIDEMIOLOGY FOCUSED
ON FEE FOR SERVICE MEDICARE BENEFICIARIES.
CMS RELEASED THE CHRONIC CONDITIONS DASHBOARD AS WELL AS
COUNTY PROFILES WHERE ALZHEIMER'S IS ACTUALLY ONE OF
THE CONDITIONS WHERE YOU CAN HONE IN AT A STATE AND COUNTY
LEVEL TO OBTAIN DATA ON THE PREVALENCE OF ALZHEIMER'S PER
CAPITA COSTS, RIYADH MISSION, THIS IS INFORMATION THAT COULD
BE HELPFUL FOR STATE AND LOCAL PROGRAM PLANNERS TO BETTER
UNDERSTAND THE BURDEN OF ALZHEIMER'S IN THEIR
COMMUNITIES. THERE'S ALSO NEW DATA FROM CMS
FOCUSED ON CO-OCCURRING CONDITIONS WITH ALZHEIMER'S SO
WHAT ARE THE MOST COMMON DIADS, TRIADS, THAT CLINICIANS COULD
FIND HELPFUL. IT OCCURS TO ME AT THE NEXT
MEETING, WE CAN PERHAPS GET SOME FOLKS TO PRESENT THIS NEW DATA
TO THIS GROUP OR WE COULD SEND THE LINKS AROUND DURING THE
INTERMEETING PERIOD. IF IT'S OF INTEREST TO THIS
GROUP, WE CAN FIGURE OUT HOW TO MAKE THAT AVAILABLE TO THE
GROUP. YOU'VE BEEN LEADING THE WORK
ACROSS THE DEPARTMENT ON MULTIPLE CHRONIC CONDITIONS OF
WHICH THIS IS JUST ONE, SO HE'S GOT A LOT OF BALLS IN THE AIR ON
ALL OF THOSE CONDITIONS. BUT I THINK I PROBABLY SPEAK FOR
EVERYONE WHEN I SAY IF YOU COULD SEND THAT INFORMATION AROUND TO
THE GROUP AND WE CAN SHARE IT WITH THE PUBLIC, FOLKS WOULD BE
REALLY INTERESTED IN SEEING AND HEARING IT, AND IT WILL HELP
GETTING LOCAL PUBLIC HEALTH DEPARTMENTS INVOLVED AS WELL.
THANK YOU, HELEN. I WAS STRUCK LOOKING OVER THE
NEW VERSION OF THE PLAN AS WELL BY A COUPLE.
ONE IS THE INVOLVEMENT OF INDIAN COUNTRY.
I THINK, BRUCE, YOU REALLY PLAYED A BIG ROLE IN THAT IN
TERMS OF HIGHLIGHTING THAT THROUGHOUT THE DOCUMENT.
THE SECOND WAS THE AREA OF ELDER ABUSE.
WE'RE GOING TO HEAR SOME OF THAT LATER ON TODAY.
I THINK THAT'S REALLY A CONCERN IN MANY RESPECTS.
I CERTAINLY DEAL WITH A LOT OF PATIENTS, FAMILIES ARE CONCERNED
ABOUT EXPLOITATION AND THE LIKE, SO I THINK THE EMPHASIS, THIS IS
VERY IMPORTANT FOR US TO HAVE A ROLE IN THAT.
I WAS WONDERING IF WE COULD ASK DAVE, YOU WERE ON THE PANEL,
HEALTHY BRAIN INITIATIVE AT THE AAIC MEETING, I THOUGHT THAT WAS
A GREAT PANEL. CAN YOU MAKE A COUPLE COMMENTS?
SURE. THIS IS ACTUALLY THE SECOND
VERSION OF THE ROAD MAP FOR PUBLIC HEALTH TO ADDRESS
ALZHEIMER'S DISEASE, AND THIS VERSION ENGAGED ABOUT 300 PUBLIC
HEALTH PROFESSIONALS FROM ACROSS THE COUNTRY, THE STATE LEVEL,
THE LOCAL LEVEL AND A NUMBER OF NATIONAL FOLKS AS WELL INCLUDING
SOME HERE ON THE PANEL. ALREADY THIS WEEK, SINCE THE
RELEASE ON MONDAY, THE ASSOCIATION OF STATE AND
TERRITORIAL HEALTH OFFICIALS IS INCLUDING THIS INFORMATION IN A
BRIEFING FOR EVERY STATE HEALTH OFFICER.
WE HAD DISCUSSION WITH THE NATIONAL ASSOCIATION OF CITY AND
COUNTY HEALTH OFFICIALS. THEY'RE GOING TO BE USING THIS
IN A BRIEFING FOR COUNTY HEALTH OFFICIALS AND LARGE CITY HEALTH
OFFICIALS IN THE COMING WEEKS. OTHER GROUPS LIKE THE NATIONAL
ASSOCIATION OF CHRONIC DISEASE DIRECTORS HAVE WEBINARS PLANNED
FOR THEIR MEMBERSHIP BASED ON THE ROAD MAP, SO THE RELEASE OF
THE ROAD MAP IS GIVING US AN OPPORTUNITY TO REALLY RAISE THE
ISSUE OF ALZHEIMER'S DISEASE IN PUBLIC HEALTH AND POINT TO, AS
HELEN MENTIONED A NUMBER OF DIFFERENT OPPORTUNITIES FOR
PUBLIC HEALTH TO ENGAGE, PARTICULARLY ENGAGE IN SOME OF
THESE COLLABORATIVE EFFORTS WITH THE AGING COMMUNITY, WITH
MEDICAID PROGRAMS, ET CETERA, ET CETERA.
SO IT'S AN EXCITING TIME FOR ALZHEIMER'S AND PUBLIC HEALTH.
THANK YOU. A SPECIAL DEBT OF GRATITUDE TO
LYNDA ANDERSON, WHO'S NOT HERE ON THIS COUNCIL BUT NOT HERE
TODAY BECAUSE SHE WAS INSTRUMENTAL IN BRINGING THAT
ABOUT, SO IT WOULD BE GOOD TO CONGRATULATE HER ON HER NEXT
MEETING. OTHER QUESTIONS, COMMENTS FOR
HELEN? I WILL JUST SAY WHAT EVERYONE
ELSE HAS SAID HERE, WHICH IS THIS IS A REALLY NICE PIECE OF
WORK WHICH IS CONSISTENT WITH A LOT OF OTHER REALLY NICE PIECES
OF WORK. THE ACTUAL PROCESS OF BRINGING
TOGETHER AGENCIES ACROSS NOT JUST HHS BUT THE FEDERAL
GOVERNMENT TO DO THIS TYPE OF WORK WITH THIS LEVEL OF QUALITY
IS EXTREMELY DIFFICULT. I'VE SEEN IT UNDERTAKEN IN OTHER
AREAS AND IT IS NOT A LIGHT LIFT.
HELEN HAS BEEN THE DRIVER OF ALL OF THOSE CONVERSATIONS AND HAS
NOW WONDERFUL WORKING PARTNERS IN GERI, RICHARD AND JANE IN
ADDITION TO THE NON-FEDERAL MEMBERS, THE CHAIRS OF THE
SUBCOMMITTEES AND HAS JUST PULLED IT TOGETHER WITH SKILL
AND GRACE, SO THANK YOU FOR ALL OF YOUR TERRIFIC WORK ON THAT.
AGAIN THANK YOU TO MY COLLEAGUES WHO MAKE THIS EASY
AND TO WHEN I SAY WHAT CAN WE DO NEW IN THE PLAN AND THEY SEND ME
EIGHT PAGES OF NEW ACTION ITEMS. IT MAKES MY JOB MUCH, MUCH
EASIER. THEY'RE FAMILIAR WITH EVERYTHING
AND I REALLY APPRECIATE IT. SO THANK YOU ALL.
THANKS, HELEN. WHILE IT'S A LITTLE EARLY TO
HAVE A COFFEE BREAK, I THINK WE SHOULD.
WE HAVE ONE OF OUR FIRST OUTSIDE SPEAKERS COMING AT 10:15, SO WHY
DON'T WE TAKE A BRIEF BREAK RIGHT NOW AND RECONVENE PROMPTLY
AT 10:15.