Alzheimer's drug

good afternoon, let's reconvene and to kickoff the afternoon activities we are going to begin with the public comments first andi will turn it over to rohini. great, first we will have phil cronin, followedby karen love. is phil here? ok karen.after karen we will have jane duvall. good afternoon, my name is karen love andi am here representing the dimentia action alliance. thank you national advisory councilmembers for the opportunity to provide the comments today. the release of the 2015 nationalalzheimer�s plan is testament to the amount of work undertaken by you all since 2011 andthe many efforts that are currently underway. thank you dr. luong, thank you ron, thankyou dr peterson for your committed and able

leadership to napa's efforts. today napahas not yet addressed the need for a coordinated national plan to address societal misperceptionsand stigmas about dimentia including alzheimers. the great(inaudable) experience of dementia.he fought against the stigmas that dehumanized people and trans formed the thinking of many.i am not dying of a fatal disease, i a living with a quran i been disability.sandy another champion you met during the advisory committee also remind people arestill living and not dead yet and please treat him as a living human being.another advocate kerry writes don't understand stment me because i have alheimer's.give us respect and dignity so we may have

a better quality of life.imagine having a life articling condition and having to advocate to be true.kate diagnosed with young onset dementia at the age of 49.she was told by her healthcare professionals put her affairs in order and begin lookinginto long term options when she was diagnosed. others include kerry urban are given prescriptionsand told to come back in six months. she coins the term this engagement to describethis mentality and mind set. to live a life without hope, without a senseof a future and destroys the notion of our well being.christine in her 2005 book dancing with demerrill lynch my story dementia living positivelyhas an impact on the course of how we experience

the disease.we can restore our person hood and give us a dense of being needed and valued.give us reassurances, hugs, support, a meaning in life.value us for what we can still do and be. most people don't realize that they have misperceptionsabout people who are living with dementia, let alone realize the impact these misperceptionshave on your emotional and social well being. understanding how important it is for themto be meaningfully engaged in things they find interesting in daily life being givenrespect and having purposeful things to do are vital to their well being, as vital astheir physical health. of the boards are stigmatizing using dementedand sufferer and using words such as demeanting

illness, tragedy and awe incomion.these words can make a tremendous impact on how people living with dementia feel aboutthemselves and how they are treated and considered by others.to end up basing social ice isolation because of these misperhelpions and stigma add tothe challenge of living with this condition. the national plan enhanced public awarenessand engagement. the dementia action alliance asking you toplease include in your work this year developing a detailed plan for coordinated public, private,national awareness campaign to educate the public about living with dementia, includingaddressing the stigma and misperceptions. the dementia action alliance offers its help.the medical presentations this morning of

some of the other dementias was extremelyvaluable. i'd like to suggest that the next meetinginclude speakers that talk about lived experiences of these dementias to provide humanized perspective.we applaud the council for its commitment to include two people living with dementiaon the council going forward. i picture mr. keller wherever he is now pumpinghis fist and saying please, it's time for well intentioned people to stop dehumanizingindividuals who have dementia so that they can live fully with a chronic disability.thank you. >> thank you karen.deign. >> i'm deign do have all the chief operatingofficer of the national certification board

for alzheimer's care.again i want to commend the councilor on its recommendations to prepare a work force thatis competent to deliver care to persons with advanced dementia and their families.this seemingly was included in the 2015 plan update under goal two strategy to a, buildinga work force with the skills to provide high quality care.specifically i think the information presented in several sections about the positive impactof the geriatric centers highlight the great work that these institutes from achieved.the certification board for alzheimer's care encouraged there would be greater focusedplaced on the training and education of the direct care work force and lay family caregivers.

as many of you hhs and hersa announced atthe whitehouse council on aging a new program that would do away with these gek.and replace them with a new round of funding entitled geriatric work force enhancementprogram or gwfep. two cases in point south florida with its1.5 million residents age 55 and over include residents and their care partners who areplead to have alzheimer's disease or related dementia who no longer have access to educationalfunding. the state of good no longer will receive fundingfor its residents through the new gwep funding. there are many areas of the country that willnot have access to funding for geriatric and alzheimer's dementia education.i bring this up so the council is aware although

there's an increase in annual funding to 35million for work force training of which around $3.3 million annually was awarded for dementiaeducation, the inequity how the awards were granted according to geographic locationsis puzzling to say the least. less states and regions receive funding.in total, 23 of the currently funded geks did not receive funding from.gwep funding. i hope the numbers of healthcare professionalsand consumers serve that were included in the 2015 update will continue to improve forthe 2016 update. however, i'm afraid the demonstration willbe forced to put an asterisk after these numbers stating that not all areas of the countrybenefited from.

gwep funding.thank you again for your dead case for each of you because i know you bring your careand compassion to this devastating disease of which the numbers are growing from a nationaland global perspective. i hope that one day there won't be a needto have these meetings because alzheimer's disease and related dementias will be healthcareconcerns of the past. thank you.>> thank you, dane. kennedy.not here? you are, sorry.>> my name is kennedy university and i'm here on behalf of the dementia thank you councilfor doing this and giving the public an opportunity

dementia in the united states.summits and conferences on dementia in america discourse revolves around cure and treatmentand leaders present statistics on dementia diagnosis in the united states and best footforward. why researchers are hard at work to rad indicatealzheimer's and related dementia the job is to truly care for those who currently havedementia who is obviously a multi pronged process that involves eliminating heavy negativestigmas living with dementia supporting our network and really listening to what peoplewith dementia have to say. and specifically in regards to intergenerationalconnectedness which i want to emphasize an anecdote that came from a video conferencethat was hosted bile dementia action lines

last week about to finish a care giver, andthis is unplanned. a care giver informed the group on the conferencecall that a man living with alzheimer's had been listening to the whole discussion forthe past hour and just wanted to share a few words.he introduced himself and informed us of the severity of his memory loss.he had alzheimer's and he began to tell us about the wonderful time children would cometo his residence and simply sit down and just read books with him.told us that it is the greatest enjoyment he can receive because it makes him feel likea grandfather again for 20 minutes. pretty impactful.i don't know this man personally, obviously.

he's in philadelphia.and i don't know his family, but i'm almost certain that he's still a grandfather.and he didn't stop being a grandfather just because he was diagnosed with alzheimer's.this man comes as a reminder that our support networks for those with dementia should anddo reach beyond just sons and daughters to grand sons and grand daughters.as a society we need to make sure our kids know they are an integral part of their livelyload. dementia should not change the love parentslove their grandparents and feel connected to the whole family.by addressing the importance of the connection between the two generations, we'll be educatingchildren, correcting negative stigmas and

ultimately helping people with dimensions.the current national plan of alzheimer's mentions nothing specifically between young and oldgenerations. i'm hear to ask to please promote the benefitsof intergenerational connectedness for both young children and the older generation livingwith dementia. >> thank you.after sue we have mary hogan. >> hi.my name is sue peshin and i serve as president and ceo of the alliance for aging research.thanks for the opportunity to make a public comment.i wanted to start off by first saying that there's much to praise and be grateful forin the 2015 national plan to address alzheimer's

disease.and i want to give a thank you to secretary borrowwell, assistant secretary frank, deputyassistant secretary alan for their leadership on the plan and the progressive progress that'sbeen made since 2011 in all areas across the board.cultural investment in alzheimer's disease research and care has been a consistent themein the three and a half years since the national alzheimer's project act was implemented.the 25% increase in ad research funding at the nih since 2011 is significant, and itis very much appreciated. a larger issue that we've been discussingaround nih funding prioritization at the alliance is for nih to consider cost to public healthcareprograms, ie medicare and medicaid as part

of its prioritization for research investmentin specific conditions or diseases. economic burden on public healthcare programis not currently considered as part of the existing strategic planning process at nih.there was an april 2014 gao study that congress requested that of the five selected ics thatwere awarded the largest amount of research funding, officials took into considerationneeds, scientific needs and opportunities, gaps in funding research, the burden of diseaseand the population of the burden incidence for morbidity and mortality, but not the costs.and public health needs such as an emerging public health threat like influenza.we consider those to be all valid and important considerations but we would argue that coststo healthcare programs should also be part

of the research funding prioritization equation.and i bring this up because right now nih is looking for comment on an nih wide strategicplan. and they are looking for public comment byaugust 16th. and i hope that folks who participate in thisprocess (inaudible)alzheimer's is one of the diseases that was mentioned.the piece basically says that fda is, you know, trying to do all it can but that theyneed more science. one of the quotes i found, particularly compellingwas they said like many other diseases of the brain, alzheimer's illustrates the obstaclesto development of biomarkers and targeted

drugs when scientific research has not yetuncovered the underlying causes for pathways of a disease.it's a very sobering report but it's very much on point and i would encourage everyonehere, certainly ever on the research subcommittee to read it thoroughly.and we look forward to exploring these issues further with the fda neurology review divisionat our september 16 academia. i was excited to see the reference to expansionand enhancement of respite care in the plan as well as regulatory review of adult dayservices. both respite and adult day services are animportant aspect of the care giver support that may delay institutional of individualswith dementia.

while the initial work has been very verypromising, these programs need much wider support and coverage in order to meet thehuge demand. i want to say a specific word about the resourcesfor enhancing alzheimer's care giver health reach program.believe it or not, this program was first funded by the nia and the national institutefor nursing research in 1995. 20 years ago.there has been a reach 1 study and a sequel reach 2.it has been a va wide program since 211 and aoa has also funded reach programs throughoutthe country. finding through the reach study show improvementsacross many areas.

care givers reported less burden and depressionand improved emotional well being overall. they also reported gains in the areas of selfcare and healthy behavior, social support and management of problem behaviors on thepart of their loved ones with alzheimer's disease.plus, they reportedly gained an hour a day of time that was not consumed with care givingduties. while expanding reach to indian country isanother great step to this awesome program i'm wondering they've not taken a step makingthis a cmmi model program or better yet just going for it and implementing reach cms wide.how many more years do folks have to wait. and i would love for that to come up in discussionat some point because i feel like i've asked

this question at various levels of hhs.it would be interesting to hear. last, it's terrific that hhs is refreshingthe alzheimer's.gov website. two things i noticed i hope can be address.it takes several clicks to get specific information on research studies, how to get involved ina clinical trial. it could be great if this could be more streamlineand if folks could access it more directly from the home page to find out about researchstudies in your area subhead. and then two, the tag line for the site, alzheimer's.govfor people helping people with alzheimer's seems to unintentionally overlook individualswith the disease, as well as others who may know somebody dealing with it or just wantto learn more about it.

i'd love to see another tag line that inviteseveryone in. the community needs it and it's getting biggerand bigger every day. thank you.>> thanks, sue. after mary we have carolyn rogers.>> good afternoon, my name's mary hogan. some of you may recognize me from, am i speakinginto this okay. some of you may recognize me from the beginningof the council meetings i did attend for the first two years pretty regularly and broughtup the issues related to people with intellectual disabilities.i'm here for two reasons today. number one, i'm representing matt from thenational intellectual disabilities and dementia

practices.matt's in california because there's a global summate on innovations in health.i also want to let the council know that the ntg as the national task group is referredto as a partners with the alzheimer's association and national down syndrome and a publicationthat the national down syndrome society sponsored. and it will focus on dementia and intellectualdisabilities and hopefully will bring together a lot of information that we all have andare pocketed in very many places. in your files or in the folder, do they haveit? there are six slides that i gave, that i.unfortunately belatedly but that's typical for me to be a day late and a dollar short.but the first slide, if you can find them,

could you just hold it up.that's not the first slide i thought was in there but the first slide was a picture ofmy brother who i'm hoping if you find it in the slides, you will see it's a gentlemanin a base ball cap, that he would like to have him in life referred to as harrison forward.harrison ford. i hope you find it.my brother had down syndrome and he indicted at age 49 of complications of alzheimer'sdisease. i also had a slide in there and on his slideit talked about advocacy. families with a family member with an intellectualdisability are advocates from day one. i can assure you that we fought no fight likewe fought at the end for my brother bill when

he was diagnosed with alzheimer's disease.i was glad i was here this morning to hear the discussion of lewy body because we didmake a donation of his brain to the institute of basic research in new york and he had anautopsy done at the university under the guidance of dr. mayu.they did look for lewy body in my brother's autopsy.it was helpful for me to better understand the correlation between down syndrome alzheimer'sdisease and the lewy body issue as well. anyhow, we based a lot of unanticipated obstaclesand even though we thought we were very informed advocates.since my brother's death, i've had the opportunity to meet lots of families from across the unitedstates.

i've met lots of sublings.i've met lots of parents, and i have that list for you of the 10 kinds of feelings thatare sort of universally expressed here. most of them are about the lack of information.when you bring somebody with down syndrome to an office and still continues to have theneurologist or physicians will look at the person and say you have down syndrome andall likelihood this is dementia and we go through no differential diagnosis as the restof the general population does so. i think we need to continue to inform physiciansabout the process of making the diagnosis because it could be a number of other co occurringconditions that are contributing to the cognitive decline.i think it's important for you to recognize

that people with intellectual disabilitiesare very valued members of their families. so the sense of loss is profound.we have the same fears the general population has about financial issues.i went to a regional meeting for the whitehouse council on aging in boston a couple monthsago. and one of the panel members spoke about oneof the major thing that all families speak up about in terms of their financial situationis the dread of the onset of alzheimer's disease and their finances in families with intellectualdisability face that same kind of issue. families are supporting their family membersthroughout their lifetime. i'm going to take a tangential aside thereand tell you about a family that only recently

were willing to share their story.they live outside of chicago. and the father, his name is george and he's87 years old. his wife's name is lowest and she's soon tobe 84. george still goes to work part time duringthe week. he works for i cannot say but a national sportsorganization as a statistician. lois has alzheimer's disease and they buriedtheir son georgey in march of this year. he had down syndrome and he died at the ageof 51. they supported george at home, they paid forall costs 24 hours a day for george and for his mother as well.and they now, the family rallies to provide

that support over his lifetime.the situation the families are experiencing are not just the general population but familymembers that had an intellectual disability. i think that care giver demands persist.i always came to you the first, often came to you the first two years and talked aboutfrank and his wife. and i'm here to report that frank and bettyare still alive and well. frank is 90, betty is 86.they are facing continued healthcare problems of their own.when i last spoke to you two years ago, richard was no longer able to stay at home with frankand betty and was moved to a 60 bed facility for people with intellectual disabilitieswith health and physical and mental health

problems.a staff that was not really trained to meet the needs of somebody with alzheimer's disease.and richard's been in that facility for two years.within the first four months, he was treated with an anti psychotic drug because he wasa difficult patient because he was up and moving about and everybody else was primarilywheelchair bound. within four months, richard was no longerable to walk, was no longer able to talk and was no longer able to feed himself.frank and betty moved from their home an hour and a half away from that residential facilityto be within a five minute distance from richard. they go there weekly to support the staffbecause they are under staffed especially

on weekends.i think if you look at the picture in there of richard, there's one picture of richardshaking his parents' hands going around the kitchen.i think he's leaning over and kissing his mother.richard walked into the facility kind of like the mayor, assuming he was going to be electedthe mayor of this facility. shaking people's hands and hugging and doing,being very outgoing. but within four months richard looked likehe looks in the picture that you have there with his mom leaning over.there's an emptiness in richard's eyes that haunts me, haunts his parents, and we askourselves is this the face of dementia or

is this the face of something else that wedon't really understand. i'm going to tell you about one more familyof four generations are being impacted by cognitive decline.i'm in touch with francine, the sister, she is living with her husband who is on the decline.her mother has dementia. she has parkinson's and lewy body dementia.she actually died a couple months ago. her brother is 65 years old and has down syndromeand is in decline. and when he was no longer able to remain inhis group home, he faced issues around funding mechanisms, where could he go, who would providethe support to him. he is, he was supported by, they assumed hewas near end of life so he was given some

hospice services that were then taken away.and with the withdrawal of the hospice services went the wheelchair that he needed.so i think, i hope when i bring to you these stories that you understand the impact thisdisease has on many generations and four generations in francine's family.she feels like she's guilt ridden because she can't attend to the all the people whomshe interacts and her family. i appeal to you one more time to keep thisin mind people with intellectual disabilities. i leave you with this note from george's family.who are in chicago. that they will never forget the joy joy joydown in their heart that george brought to them and that's down in their heart to stay.and i hope that you will embrace these families

over time and in the next round of reportingand funding, that you'll forever keep in mind the needs of the people with intellectualdisabilities especially those with down syndrome who face this very horrible disease at a veryyoung age. so i thank you.>> after carolyn we have matt sharp. >> good afternoon.my name is carolyn rogers. some of you may remember me from previouspresentations regarding ionizing raidation. today i'm confining my arguments to giantsin the role in the thanks to their work we know that the main risk factor for alzheimer'sis advanced stage. because iron is continually absorbed via nutritionyet minimally excreted.

iron stores accumulate with age.excess brain iron is associated with alzheimer's and several other dementias which makes itnot surprising there are so many cases of mixed dementias.diseases that are risk factors for alzheimer's disease such as cardiovascular disease, typetwo diabetes and consistent correlations have been found between iron overload and cognitive deficits in animalsand in humans. chelation which is the means of removing ironhas been successful to a modest extent when restoring cognition in some cases.although it sometimes has severe side effects and burdensome treat regimens which indicatethat there is room for improvement. mri imaging can identify the location of brainiron deposits and related tissue damage leading

to accurate diagnosis of alzheimer's and otherdimensions. in terms of alzheimer's distinctive neuropathology,investigators have found evidence that its two hallmarks, amyloid plaque and cal tanglesare involved with regulation. on the genetic front scientists have foundalzheimer's and hemo chemo toasts which causes iron overload has genes in common.even more interesting is the discovery earlier this year that the apo e gene is involvedin iron regulation with the apo e411 the one clearly associated with alzheimer's resultingin higher cerebral spinal serotonin levels which is a marker for brain iron level.perhaps analyzing the iron levels of individuals with apo e4 variation but not all carriersof this has dementia.

this is obviously a very complex disease butif we're looking for the one thing that might be disease modifying for both alzheimer's,other dementias and many diseases that are associated with them, then i think we shouldlook at how we can reduce iron load early on in the process.there's several things that we can do if we focus on iron load.whether iron excesses are developing. mi can develop those with alzheimer's in timefor intervention. geneticists can devise gene therapies forvariations that cause iron disregulation. pharmaceutical companies can develop moreeffective chelators that reduce side effects. phlebotomy can be employed as a non toxiclong term means of reducing iron stores.

and of course dietary initiatives can reduceiron absorption. a national campaign to address dementia bymonitoring and safely minimizing iron accumulation in adults, could simultaneously reduce theprevalence of other dementias and costly diseases that impair quality of life or cause prematuredeath. if the key to alzheimer's disease is madeout of iron, it could open many doors. thank you for your respectful attention.>> aftermath is mary ann sterling. >> hello, thanks for another opportunity toaddress the council. my name is matthew sharp.i'm program manager for the association of frontal tell prowl de temporal degeneration.i want to acknowledge the time given to related

dementias today and thank you to this morning'sspeakers for such excellent presentations. opportunity to physicians with expertise andthe diagnosis and treatment of ftd and related dementias are nearly as rare as the diseasesare. ftd recognizes the council's continued commitmentto including related dementias and the work of napa and appreciate the efforts made toinvite this morning's speakers. it is a small but growing non profit diseaseadvocacy organization based outside of philadelphia. we're founded in 20002 to support people livingand working with ftd and provide current and accurate information about the disease andcaring for a loved one. and to promote medical research on effectivetreatments and ultimately a cure.

aftd offers grants and post doctoral scholarships for those interested in basic science in ftd.we have grants with alzheimer's drug decovery foundation our newest grant program currently still indevelopment will short an economic burden study on ftd's and we're very excited to beable to announce more about that soon. ftd is excited to be one of the primary organizationsinvolved with the advancing research and treatment for frontotemporal lobar degeneration knownas artful. they will organizations like aftd togetherwith academic research centers in order to successfully conduct clinical drug trialsin ftd. this collaborative effort is the largest andmost exciting ftd research project to date,

and aftd is honored to be involved.aftd is also dedicated to helping anyone living or working with ftd find the support informationand resources they need to live well, to live as well as possible despite the disease.our approach is on people with knowledge and support and prepare them for the extra taskof educating friends, family members and professionals involved with care of a loved one.which is often too often still a necessary part of getting the support and help peopleneed to cope with ftd. there are two main ways people can learn moreabout what we offer and the information we have our website www. aftd.org.it's full of up to date and reliable information about the diseases and appropriate care andall the medical information's reviewed by

our medical advisory board which includesdr. lippa. and we'll also send printed material to anybodywho requests it. and we offer help finding peers who understandthe disease and know what it's like to live with ftd.we list medical centers for diagnostic services and research opportunities, as well as supportgroups. specifically for ftd or one of the relateddementias. currently we have over 80 listed on our website.and there will be more soon, we hope. whenever possible, we include the name andcontact information of the right person to follow up to enroll in research studies, scheduleappointment for diagnostic evaluation or join

a support group.this is a time of exciting growth for both research and support, and more informationopportunities are going to be available on our website soon.the other way people can get in touch with us is through our help line.it is not a live help line. people call a toll free phone number and leavea message or send an e mail with questions and concerns and an ftd staff member willrespond as soon as possible. on average we respond to about 40 help linecases a week, with answers, information or help finding services or connecting to peersfor support. if we can't find an answer or resource, wewill try and find somebody who can.

please do not hesitate to call or right formore information. thank you.>> after mary ann we have jeffrey. >> good afternoon.i'm mere ensterling cofounder of connected health resources.my husband and i have three out of four parents who either have died from or currently strugglewith some form of dementia. i'm all smiles today.an exciting development transpired quietly last week in the alzheimer's research community.no fan fare, no media blitz, no trending on twitter.but it won't be quiet for long. a team led by us against alzheimer's in themayo clinic were awarded a grant from picory

for the first patient and care given poweredresearch network for alzheimer's and other forms of dementia t you may be asking yourselfwhy is this important. patients howard research network are operatedand governed by patient groups and their partners and focused on a particular condition or characteristic.this ushers in a new era in alzheimer's research that shifts this discipline from researcherdriven to patient centered research. this is research done differently.for those who are not familiar with p. court net, this is shorthand, of course for thenational patient centered clinical research network.an innovative initiative of the patient centered outcome research institute also known as pcori.p core net is a large network for clinical

comparative effectiveness research and othertypes of patient centered health research. a range of observational and interventionalresearch hat harnesses the power of clinical data gathered at the point of care in healthsystems across the country. the clinical data can then be augmented bydata contributed by patients and family care givers via registries, mobile devices or othersources. and yes, i did say patient generated healthdata an often controversial term. imagine what we can achieve when patients,family care givers, clinicians, health systems and researchers are working collaboratively.this is a monumental step forward and one that the alzheimer's community can be proudof.

it's now up to all of us to participate.thank you. >> then grace whiting.>> hi, good afternoon. my name is grace whiting and i'm the directorof strategic partnerships at the national alliance for care giving.i appreciate the opportunity to be able to give some brief remarks today, and to offersome new research on family care giverring that me be of interest in your work.it's a non profit organization that was founded in 1996.we have four agencies on our board and memberships comprised of profit, not for profit and otherdisease specific care giving and patient advocacy type groups.we were founded by ceo gill gibson hunted

to reads a lot of our work on policy researchon family care giving and i know some of you have worked with gail in the past.in addition we have a network of state and local network coalition giving across theu.s. and an international coalition related to care giving and career issues that nowhave about 12 countries in its membership. we conduct a report every five years withaarp and i've included some wonderful reading for you on your flight back.the executive summary from this report. you can find the full report on our websiteat caregiving.org/2015 and it is a quantitative population base study of about 1200 care giverswith oversamples for multicultural populations and data including care givers who are 75plus and different age groups of care givers.

including the ma lineals and generation x.i think what is of particular interest in this country are the findings related to caregivers or persons with alzheimer's dementia or mental confusion.we found 22% of america's 43 and a half million family care givers support a loved one withthis disease. either as the primary reason for care or asecondary diagnosis. those who provide care to someone with alzheimer'sdementia or other mental confusion often support a variety of tasks.so this might be helping with on average about 2.2 activities of daily living, 4.6 instrumentalactivities of daily living and even metaphor nursing tasks.in addition, these care givers are more likely

than the average to help with other key activitiessuch as monitoring health, advocating on behalf of the person with dementia or communicatingwith healthcare and other service providers. i would remind the council the care althoughunpaid does not come without cost. dementia care givers are more likely thanothers to have performing adls and other nurse is task.those are providing medical or care nursing in the program without prior preparation.high emotional stress care giving has impacted their own health.we're talking about a care giver who on average is a 53 year old who expects to keep caringfor another five years. that's an impact not only on the person they'recaring for but that individual's own health,

wellness and future retirement.likewise other research has shown that the family care givers health declines as thecare recipients initiative advances. so keeping the care givers safe and healthyis something that must be done to keep the person with dementia safe and healthy.it's not just a retread but i think what's critical when looking at this report and otherslike it, is that we are facing a care giving cliff.we know that by mid isn't century there is not only they care person vaibles.there are a number of care givers due to shrinking family sizes and families who live acrosslong distance. other advocates in the space have urged thisbody to continue to consider solutions related

to family care giving and we would commendthis council on the 2015 report and the recommendations to that effect.additionally we offered to be a resource if you're doing work in this area and we canbe helpful in any way. we would urge the body to also consider hownew technologies can be helpful in addressing the growing gap in care giving and look tothe department of veteran affairs care giver support program as one potential model fora federal national plan in family care giving. thank you very much for your time and forall you do to support families and friends who are caring for someone with dementia.>> thank you, grace. ian.>> good afternoon, i'm ian kramer, executive

director of leaders engaged on alzheimer'sdisease. we're a coalition of 76 dementia serving andconcerned organizations. some of the organizations you've already heardfrom and i suspect you'll hear from a little bit later this morning, i'm sorry this afternoon.it's going so fast it feels like it's still morning.that was a big breakfast i had. in the spirit of this being a national planrather than a federal plan, i just want to remark on a few themes.you have my effort of written testimony already so i won't read that to you but maybe justhit a few of what i hope are highlights. one is that growing out of work done by participantsin this room announced to the white how the

conference on aging there's now an americaissue. the word america is in that title becausewe hope the work will be done nation wide. it is very much a community driven effortand it is a collaboration of private stakeholders and government agencies, local, state andfederal level. i think that's an important indicator thatthe top that was set in the national alzheimer's plan as being national, not federal, thoughtslimited to role of government but encouraging collaboration between government actors andprivate actors across sectors, that that message has been taken to heart.in this particular effort to the community level change outcomes for people that areliving with and caring for those living with

a variety of demeanting disorders.it's not alzheimer's america it's not the federal plan to address alzheimer's diseaseand communities, it is truly a community by community effort.this is an emerging evolving effort, one that blossoms in different ways in different communitiesbased on each community's own assessment of its needs, its priorities, its capacity andits partnerships. in each community that will be led and implementeddifferently. maybe we can call on her later if time allowswhat will be done across the state of west virginia in one of the pilot communities,an organic effort that those of us around this room would have been involved in developingdementia from the america cannot take any

credit for.we only thank helen and virginia for sharing best practices back and forth.in other communities, we may be the ones that helped get something jump started.across those pilot communities and other communities we'll join it will be learning by doing.i think that's another important lesson for this napa process as well.that while we want everything we do to be evidence based to the extent that evidenceexists, sometimes the way you develop evidence is by doing, by getting out in the field andtrying things. and asking people to accept that the evidenceisn't always there in advance of implementing but that if people are willing to put themselvesforward and be part of the team that develops

evidence, that they may benefit from thatprocess and they will undoubtedly help those that follow in other communities, in otherdisease states, in other families. so through the dementia friendly america project,five, possibly six communities will get the ball rolling initially, we'll be at 15 earlynext year but it will be on communities across this country to step forward and say we havesomething to learn from what these pilot communities has done but we have something to share inthe communities that follow up. i'm going to go through the next few pointsat a much higher rate of speed because i think i'm already past the two minutes we reachedout of what we have. first off i just want to reiterate what you'veheard from other speakers that this meeting

and previous meetings that this process ifanything, needs to be more inclusive. you've done tremendous work with tremendouslylimited resources, and i understand and i'm sure everyone understands that people aroundyour table do not determine the budgets and statutory constraints on your work.to the exterrent you can bring more voices to this table particularly people living withvarious forms of dementia and beyond the alzheimer's space, that is i payerive.i encourage you through whatever means you have available to be creative in this processbut again in the spirit of this being national rather than just federal to work with privatesector stake holders to bring resources to bear to extend not only will reach into othercommunities but what you hear and learn from

other communities.and while i assure you i have a variety of ideas, many of which probably will not seethe light of day, let me give you one suggestion of a way in which without additional regulatoryauthority or budget working with private sector stake hoards i holders you can extend yourreach dynamically that one. it's a critical step one many organizationsdo and other stakeholder panels do it as well and that is just have regularly scheduledreach out listening sessions. where it's not your role to talk and producereports and deliver remarks but just to be represented and listen to those communitystake holders around the country who either cannot or choose not to come to these quarterlymeetings, who want something more engaged

than having a couple minutes at a microphonein washington or written testimony committed. whether you do it by video feed, whether membersof this panellor panel or your surrogates go and sit around the country just sit forseven, eight hours and listen to all comers and report back to this panel about what you'veheard and what you've learned and what you connect o i think that would be relativelyeasy and quick to implement it but it would take new regulation, it doesn't take new statutoryauthority and working with private sector stakeholders it doesn't take additional dimeof federal money. i want to point to one last example beyondthe other items that are in my written testimony. and that is an effort to think a little bitoutside the box.

we need the importance of federal fund, weall look in order with great anticipate in terms of what the federal bypass budget representationwill be and we know that is where we will truly transform funding in this field as faras federal he was go. the process to try to supplement and makethis more national level than purely federal is to include language, language that wasincluded that urges not insist but to work with private sector funders of all stripesto develop a system by which those private funders have access to review grant proposalthat were submitted to nih for dementia research projects but for which nih found in thoseproposals did not have enough cash to fund them.and that this private funders look at those

proposals that have already been vetted.they are scientifically meritorious and where the researchers themselves have said wherethey would like their proposals to be reviewed by private funders if they are not nih fundedand give them an opportunity to fund those projects.save time and capital on those private funders and invent the science.however much faster we can, however more broadly we k it's not a game changer.it's not going to change the pay line by 5%. but if we can chip away and if we can giveprivate donors more reasons to support private funders in the work they are doing, we hopeto advance the field. that is a way in which the good work of nihand the good work of private funders can be

collaborative rather than on parallel tracks.that is not a particularly ingenious idea but i think it's an example of the small obviousthat can be done to begin changing the dialogue and have public and private partnerships becomemore robust and more creative and more outcome oriented.having gone remarkably over my two minutes, the last thing i want to say is that thereare no words to adequately convey the gratitude that all of us out here in the peanut galleryhave for the federally appointed members who continue to serve and those who are servingin their last meeting today. you have done remarkable work, you've doneinspiring work and i hope there's a way which people can take advantage of your continuingcommitment to this field, whether they are

call you members or something else, but tokeep you engaged in this process and not have rotating off rotating.we need your continued involvement. we know you want to continue that involvementand we hope in the spirit of this being a national rather than federal plan, that aspehas thought of ways of keeping us deeply engaged. thank you.>> and we received two comments that i will read on their behalf.the first is from michael my name is michael and this speech is being read on my behalfbecause of what i believe to be a failure of the napa committee to set the best examall of others and those living with dementia. about six years ago i was in early stage advisorygroup member from my local alzheimer's associates.

we were encourage to identify issues withpeople with dementia so we can make a difference. minorities were being discriminated against.the association didn't want to explore my concern as this hospital contributed moneyto them. that day will stay in my mind forever as thatis what got me so angry that i started my advocacy.i soon realized many of the agencies that tried to make themselves look good in otherseyes actually failed the very people they were claiming to support.i took on many roles over the years and became vocal as i realized that was the only thingthat seemed to work. i did not like doing that but i did not havetime on my side.

i needed action quickly.i have tried to enlist many others with dementia over the years but was afraid they would betreated unfairly for being honest. a few weeks ago the government dealt withiran after they said they wanted to kill us. even offered to give them $150 billion afterthat. the president recently said we need to releaseconvehicles and give convicts and give them a second chance yes i wanted my work to get your attention.i apologize very quickly when i realize i may have owe funded someone even though ihad no harm intended in my words. no one ever asked me what i meant by my statements.not one. i am a person living with dementia and insteadbeing treated like a crazy person rather than

being treated with respect.and you of the stigma associated with this disease, i and many of my friends also livingwith dementia never had this type of stigma in our minds.i have since reached out to many who have always spoken to me in the past, all of mye mails and calls have been ignored. most of you have known me for over three yearsnow, i am no stranger. for your information before i submit my speechesthey are vetted by others who do not have dementia.i have always tried to do what is right. i have been able to bring others to thesemeetings from time to time. i so wish there were many others with dementiaat this meeting.

if there were, i would not feel the need tobe here. your actions have ruled in scaring them offeven more. others living with this disease tell me thisis the treatment they were afraid of. you the committee should be ashamed for notdoing what is right for all those with dementia. in my opinion you get an f for failure.you lost the respect from those actions you took heartlessly.there are other committees who believe the wrong decision made.what i can't understand is how no one can be unprofessional and undo this error.you have shown me more the napa living with dementia and should not be used as any model.i've been removed from the list serve e mails

so i no longer receive updated e mails fromnapa. let's speak the real truth here.it was thought my words that caused fear here someone did not like a person with dementiaspeaking so honestly. secondary to my banning the alzheimer's associationdecided to strip me of my position with them and i am banned from their public meetings.the two leading organizations hhs and the alzheimer's association who are supposed tosupport people with dementia just threw a person right under the bus.this is a poor example set by the same people helping to create dementia friendly communities.as a person with dementia i am proud. as a person with alzheimer's i have many difficulties.as a person living with a disease, i still

have my pride and dignity.don't take that away from me by saying thing i did not say and treating me like a crazyperson. you should have received the world purpleangel pin today given to you by abington hospital. i hope you wear it proudly and support allpeople with dementia. the second comment we received is from thenational asian pif pacific center on aging. alzheimer's disease and growing dementia isaapi community. age is considered the greatest risk factorfor alzheimer's disease and aapi women have the highest life expect see, 85.8 years ofany ethnic group. that prevent early intervention include culturalbeliefs in language, lack of awareness that

contributes the stigma, unlimited accessibleand cultural proficient services. further, many aapi older immigrants may nealdiscourage to access aging and healthcare services including dementia for several reasons.unfamiliarity with medical practices, having to locate interpreters and the fear the ofmiscommunication that may lead to misdiagnosis and improper treatment.language and cultural barriers prevent them from full participation to the u.s. healthcaresystem and studies have shown the linguist tick discordance or miscommunication is implicationof health outcomes and quality of care. the asian pacific center on aging which isthe leading advocacy and leading organization committed to the dignity, well bag and qualityof life as aapi's as they age respectfully

request that the advisory council on alzheimer'sresearch care and services dedicate a council meeting to discuss the effects of dementiaon and how the outreach to aapi and other diverse minority communities.raising awareness of the impact of alzheimer's disease and related dementias on aapi andother diverse communities is an important first step to ensure that aapi elders andtheir families regardless of language, cultural, economic or other barriers will have accessto an equity in the service, benefits and programs that are available to all americanseniors. thank you for considering this request.>> thank you rohini and thank you to all of you who made public comments today.as always, we take these very seriously and

they are part of the ongoing activity of thiscommittee. so thank you very much.