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Advisory Council July 2015 Meeting Summary

Monday, July 27, 2015

Washington, DC


Advisory Council Members in Attendance

  • Non-Federal Members Present: Ronald Petersen (Chair), Laurel Coleman, Yanira Cruz, David Hoffman, Harry Johns, Jennifer Manly, Helen Matheny, Jennifer Mead, Dennis Moore, David Hyde Pierce, George Vradenburg, and Geraldine Woolfolk

  • Federal Members (or representatives) Present: Billy Dunn (U.S. Food and Drug Administration [FDA]), Linda Elam (Office of the Assistant Secretary for Planning and Evaluation [ASPE]), Bruce Finke (Indian Health Service) (by telephone), Richard Hodes (National Institutes of Health [NIH]), Shari Ling (Centers for Medicare and Medicaid Services [CMS]), Anthony Pacifico (U.S. Department of Defense), William Spector (Agency for Healthcare Research and Quality), Amber Story (National Science Foundation), Jane Tilly (Administration for Community Living), and Joan Weiss (Health Resources and Services Administration [HRSA])

  • Guest Speakers: Roderick Corriveau, (NIH/National Institute of Neurological Disorders and Stroke [NINDS]), Rebecca Gottesman (Johns Hopkins School of Medicine), James Leverenz (Cleveland Clinic), and Carol Lippa (Drexel University Medical School)

  • Quorum present? Yes

  • Advisory Council Designated Federal Officer: Rohini Khillan (ASPE)


General Proceedings

At 9:32 a.m., Chair Dr. Ronald Petersen called the meeting to order.

Dr. Petersen introduced himself, welcomed meeting participants, and outlined the meeting agenda.


Frontotemporal Degeneration (FTD)

Carol Lippa from the Drexel University Medical School presented on frontotemporal degeneration (FTD).

  • Dementia is the general term used to describe those who lose memory and cognitive abilities to the point that they cannot function normally. Alzheimer's disease (AD) is the most common dementia subtype, representing 60% of all dementias. The other 40% are associated with other conditions, including the related dementias. The more common non-AD dementias called the related dementias include FTD, Lewy body dementia (LBD), and vascular cognitive impairment. The cause, symptoms, biology, progression, and management of each differ.

  • The importance of the related dementias was acknowledged in May 2013, during an Alzheimer's disease-related dementias (ADRD) workshop organized by NINDS in collaboration with the National Institute on Aging (NIA), which addressed special research priorities for ADRD, including FTD, LBD, mixed, and vascular dementia.

  • Related dementias are included in the National Plan to Address Alzheimer's Disease.

  • FTD is similar to AD in that brain cells in specific brain regions die before they should. The symptoms experienced reflect the region within the brain in which the cells die. FTD differs from AD in that the areas involved are not the same as those involved in forming new memories, so their presenting symptom is not memory loss. The initial and primary problems are diverse and reflect functions served by the frontal and temporal lobes, which can be specific: cognitive or behavior change or personality, language, or complex reasoning changes. FTD is often hereditary and has a younger onset.

  • The case study of an individual with FTD was presented: R.K. was employed as a high-powered administrative staff member until age 46 when her personality and behavior changed. Her father, paternal grandfather, and brother also developed personality changes in their 40s. R.K. developed socially inappropriate behavior, which led to several arrests. This change in personality prompted neurological evaluation, which revealed delusions, obsessive behavior, difficulty with naming objects, and poor abstraction and judgment. The whole time, R.K. had no insight into her personality change. Over the next few years, she became apathetic and developed severe problems with speech. She died at age 53, after approximately 7 years of symptoms.

  • FTD symptoms include language and mood changes (depressed, irritable, or euphoric), disinhibition, planning and organization problems, apathy, bizarre behavior, criminal behavior, carbohydrate craving, and perseveration.

  • In 1892, Arnold Pick described semantic dementia with left temporal atrophy. In 1906, a frontal lobe case was described. In 1907, Alois Alzheimer described Pick bodies from Pick's original case. In the 1990s, some cases were linked to the tau gene on chromosome 17. Since then, other genes have been identified.

  • FTD, when compared with AD, has younger onset and is more likely hereditary, often autosomal dominant, with non-memory presentation. It presents more legal and safety issues as many individuals develop motor problems.

  • More than six chromosomes have been identified that can be linked to the specific genes that code for specific brain-related proteins that cause symptoms. No environmental factors have been identified.

  • FTD is associated with movement problems, and patients may develop amyotrophic lateral sclerosis, symptoms of which include weakness, problems swallowing or breathing--similar to Parkinson's disease--balance, slowness, stiffness, and shaking. In addition, FTD patients are at risk for falls due to the combination of cognitive changes (impulsion, inattention, carelessness, restlessness) and motor problems.

  • Individuals with FTD need physical therapy to address motor issues, strength, balance, endurance, and the use of devices and orthotics. They also need occupational therapy for strategies and devices to improve or maintain basic activities such as dressing, bathing, and eating. They have swallowing and communication problems, which are addressed through articulation therapy, non-verbal communication devices, aspiration assessment, and feeding strategies.

  • Some variable symptoms involving changes in language, behavior, and cognition may require medications for cognitive and behavioral changes or medications for psychosis, depression, or sleep problems.

  • Other important assessments include evaluations of acute changes such as infection or pain, safety (e.g., driving skills), general needs, and legal needs.

  • More information on resources available to caregivers and individuals with FTD are available at

  • Recommendations from the ADRD workshop from May 1-2, 2013, include the following:

    • Laboratory FTD Recommendations

    • 1, 3, and 4: Clarify the mechanisms of disease pathogenesis and associated neurodegeneration or toxicity of the FTD variants.

    • 2: Develop better FTD in vivo and in cell-based model systems.

  • Clinical FTD Recommendations

    • 1: Identify new genes (genetic causes).

    • 2: Develop FTD biomarkers for diagnosis and disease progression.

    • 3: Understand phenotypic heterogeneity and natural history.

    • 4: Create an international FTD clinical trial network

  • The related dementias comprise at least a third of all dementias and are contributing substantially to our evolving trillion-dollar health problem. FTD symptoms differ from those of AD, and they may require more special services, including physical or occupational therapy, swallowing and communication therapies, and legal planning. The underlying biology and genetics of FTD differ from AD.

  • FTD visibility, research, support services, education, and care strategies also lag behind those for AD, but meetings such as the Advisory Council meeting bring attention to this disease.


Lewy Body Dementias (LBDs)

James Leverenz from the Cleveland Clinic presented on Lewy body dementias.

  • LBDs are named after Frederic Lewy, neurologist and pathologist, who worked closely with Dr. Alzheimer. LBDs have been classically linked to Parkinson's disease, which is characterized by its motor symptoms and usually affects one side of the body. Patients also have increased muscle tone and problems with stability. Typically, patients have a stooped posture and do not swing their arms.

  • In Parkinson's disease pathology, neuronal loss and Lewy body inclusions occur in the substantia nigra, locus coeruleus, basal forebrain, and cerebral cortex.

  • In Lewy body pathology, mutations in the alpha-synuclein gene are linked to Parkinson's disease, duplications of the alpha-synuclein gene are linked to Parkinson's disease and LBD, and all Lewy bodies have the alpha-synuclein protein. The ability to detect Lewy body changes in brain studies has increased.

  • Consensus criteria for dementia with Lewy bodies include the following:

    • Progressive cognitive decline of sufficient magnitude to interfere with normal social or occupational functions

    • Core features (2 = “probable,” 1 = “possible”)

      • fluctuating cognition, attention, alertness

      • recurrent visual hallucinations

      • spontaneous features of parkinsonism

    • Suggestive features (plus one core = “probable” LBD)

      • REM sleep behavior disorder

      • severe neuroleptic sensitivity

      • low dopamine transporter uptake (PET/SPECT)

    • 1-year rule for LBD versus Parkinson's disease dementia

  • It is known that sleep disorders can actually occur years, even decades, before the onset of any of the LBDs.

  • To differentiate LBD from Parkinson's disease dementia, it helps to note the idea, which is somewhat arbitrary, that if motor symptoms occur before the onset of dementia, then it is Parkinson's disease. If dementia develops a year or more later, then it is Parkinson's dementia. However, if the dementia precedes the onset of motor symptoms, then it is LBD.

  • Most patients with Parkinson's disease will develop a type of dementia during the clinical course of the disease. One study in Scandinavia followed patients over time, and by 15 years, almost 80% of the patients fulfilled the criteria for dementia. Early on, many patients will complain of a mild cognitive deficit, which is a common aspect of Parkinson's disease. Research shows that later in the progression of the disease, it is the cognitive and behavioral changes driving the stability, rather than the motor symptoms.

  • During autopsy, many people who never had clinical symptoms show Lewy body pathology. They have Lewy bodies in the brain stem and throughout the cortex. It is confusing to see a lot of Lewy body pathology in AD--up to 60% of AD cases have co-existing Lewy bodies. Sometimes Lewy bodies are restricted to the amygdala. Those cases tend to have more of the Lewy body symptoms. The cases with Parkinson's disease will have visual hallucinations. Cases with genetic causes of AD show a high frequency of Lewy body pathology at very early disease onset, suggesting that this is also part of the AD pathogenesis.

  • On the positive side, dementia in Parkinson's disease is being increasingly recognized. It is a focus of two NINDS-sponsored Udall Centers. Funding has also increased from groups like the Michael J. Fox Foundation. The first international LBD meeting in 10 years will take place in December 2015.

  • NIA is now sponsoring a LBD module to be added to the AD centers to enroll patients using specialized tools to evaluate them.

  • On the negative side, an estimated 1.4 million Americans have an LBD, Parkinson's disease dementia, or the symptomatic Lewy body variants of AD. Misdiagnosis continues to be a challenge. Many patients go to multiple visits before they are diagnosed and have to wait a year before they get an accurate diagnosis. These patients often are prescribed anti-psychotic drugs that can cause significant side effects that cause tremendous family distress. Because these patients have cognitive, behavioral, and motor symptoms, access to long-term care can be difficult.

  • More research on LBD is needed, but there has not been a tremendous amount of funding. NIA is now starting to sponsor the LBD module. Those who work in the field would certainly like to see some more consistent and coordinated research funding.


Vascular Contributions to Dementia: A Path to Prevention

Rebecca Gottesman from the Johns Hopkins School of Medicine presented on vascular dementia.

  • Vascular dementia is also called multi-infarct dementia; other types include subcortical vascular dementia and genetic vascular dementias. Vascular dementia is classically defined as a rapid-onset, stepwise progression of symptoms sometimes occurring after a stroke. Diagnosis often requires the patient to display symptoms of a cognitive disorder and either clinical stroke or brain vascular disease observed by neuroimaging. Patients often have problems with attention and executive function; memory may not be affected.

  • Clinically, vascular dementia is the second leading cause of dementia, representing approximately 20% of dementia cases. However, vascular contributions to dementia may be relevant in a much larger percentage of patients with dementia.

  • Vascular dementia and AD overlap is often noted as evident during autopsy. Between 55% and 80% of AD patients have coincident vascular changes in the brain. Multiple studies have found fewer AD neuropathological changes (plaques, tangles) in patients with vascular changes for an equivalent level of cognitive impairment.

  • Possible explanations for a vascular dementia/AD connection could be that vascular disease and AD changes are additive, leading to worse cognition when both are present, or that vascular disease directly leads to AD neuropathological changes.

  • Mechanisms for vascular dementia and AD interaction include vascular risk factors leading to alterations in cerebral blood vessels, which can lead to low cerebral blood flow, especially in the white matter of the brain; the blood-brain barrier can be disrupted in the presence of vascular disease; and the role of the neurovascular unit: amyloid-β itself may directly damage blood vessels, further worsening cerebral blood flow, and vascular disease may make clearance of amyloid-β harder. The “glymphatic system” around blood vessels helps remove brain waste.

  • Vascular contributions to dementia include vascular risk factors (hypertension, diabetes, smoking, high cholesterol), microvascular markers (retinal microvascular changes), macrovascular markers (carotid artery disease), clinical strokes, and brain changes on MRI or on autopsy (brain infarcts, white matter ischemic changes, microbleeds).

  • There are associations between vascular risk factors and cognitive decline; between stroke and cognitive decline; and among vascular risk factors, brain MRI changes, and cognitive decline. Hypertension and diabetes are each associated with steeper cognitive decline. Also, worse cognitive performance is noted after stroke and in people with brain vascular changes.

  • The vascular contributions to dementia and AD are important to note because vascular disease is preventable and very common. Therefore, knowing these contributions may be a way to prevent AD and other dementia cases.

  • Future directions in the study of vascular contributions to AD include evaluation of shared genetic risks or differences in genetic factors that affect an individual’s susceptibility to vascular dementia and/or AD; study of racial disparities in AD prevalence, which may be partially attributable to differences in vascular disease; and use of neuroimaging and animal models to further explore the mechanism of an additive versus synergistic effect of vascular disease and AD.


Panel Discussion on Other Dementias

Dr. Petersen moderated the panel discussion after the presentations on other dementias. Panel members included Carol Lippa, James Leverenz, Rebecca Gottesman, and Roderick Corriveau.

  • During the Alzheimer's Disease Research Summit 2015, it was found that information on the prevalence of other dementias in ethnic minorities was lacking. In fact, one of the speakers visited the center database and found essentially almost no cases of FTD among African Americans. The implications of that on the research and where the research should be done are profound because of the number of cases that can be prevented. Panel members have experience working with FTD patients with very diverse backgrounds and ethnicities. The numbers in the aforementioned database may be representative of the populations that are entered into that system. The numbers may also relate to a different source of the population that is being examined.

  • A second Alzheimer's Disease Research Summit will take place on the NIH campus on March 29, 2016. The goal of the Summit will be to follow up on the recommendations that are part of the National Plan, which will be posted on the National Alzheimer's Project Act (NAPA) website this coming fall, and to review and report on progress of the recommendations in the five areas that were covered in the Summit. There will be significant input from all stakeholders, including the non-governmental organizations and collaboration with NIA.

  • As part of the results of the 2013 Summit, three projects were funded that addressed genetic factors in FTD, as well as diagnostic and natural history. In addition, there was a conference on advances in FTD. In terms of genetic causes of dementia and vascular contributions to cognitive impairment and dementia, a workshop was held at NIH, which focused broadly on the biology of small vessels. After the workshop, there was a Request for Application focusing on vascular contributions to AD. Applications have been received and reviewed. NIA led this effort in collaboration with NINDS, and the applications that came in will likely be funded in fall 2015. Finally, in terms of LBD, NINDS has had many programs that are focused on biomarkers and Parkinson's disease, including LBD, and those funded programs are looking into understanding the biology and the diagnostics of LBD.

  • NINDS has worked with NIA to incorporate the related dementias into the International Alzheimer's Disease Research Portfolio, which is a database that shows all national, international, government, and non-government investments in research in ADRD.

  • Early detection of cognitive impairment as part of an annual wellness visit and trying to get frontline providers and practitioners and primary care providers to at least ask questions about testing that might lead to a further evaluation and then a follow-up continues to be a challenge. More robust comprehensive evaluations are needed for people with impairment as delays in diagnosis continue to be a big problem for ADRD.

  • FDA has approved an existing drug with a new application for treating dementia. It is important to note that those with LBD do not benefit from traditional motor symptoms medications used for Parkinson's disease because these medications may actually cause hallucinations.

  • Researchers performing clinical trials are looking to find the population that is amyloid positive but otherwise does not have any complicated elements. There is a tremendous overlap of anti-amyloid drug in the presence of cardiovascular risk factors or in the presence of potential Lewy bodies. This may complicate whether there will be a lot of "noise" in the signal. So whether that drug is working for the amyloid, the cardiovascular risk factors may be impeding the ability of the amyloid to get cleared or the ability of the amyloid to be suppressed, causing the results to be mixed.

  • A drawback of trials that look for a pure, highly specified population is that they are not generalizable. In this stage of the field, there is proof of concept to show that a benefit can be had from antibodies and amyloid-specific therapies. The question is whether researchers should be tougher on how they screen for these other types of underlying pathologies because there may be false-positive or false-negative results. Particularly when researchers focus on people with preclinical disease before the disease is at a certain stage or too far along, they want to treat people who can receive benefits at this stage, it is even harder to recruit large percentages of minorities in a clinical trial. Most of these studies have to be reasonably well controlled by history and review of records, which is quite comprehensive these days. The clinical trials are pretty clear, but in the real world when something is approved, pathology will limit it.

  • There is staging for Lewy body pathology. The group described progression through the olfactory system and lower brain stem and ultimately to the cortex, but Lewy body patterns do not always fit. The AD Lewy bodies would be in the amygdala. At least two different Lewy body patterns can be seen: one in the olfactory and lower brain stem and one more that is predominant in the amygdala. It seems that it is possibly two different physiologies, although they are not completely exclusive.

  • The Alzheimer's Association issued a new program titled "10 Ways to Love Your Brain," which focuses on the cardiovascular risk. They also published a paper on this topic in their journal.

  • One of the aspects of the recommendations being made to reduce cardiovascular effect is uncertainty about the impact on dementias. A strong recommendation for these interventions is based on clinical trials and prevention of stroke, cardiovascular disease, and congestive heart failure. Ongoing studies are looking intensely at the best interventions.

  • Some of these trials for control of hypertension at various levels of life, control of blood sugar, and diabetes prevention also have now been implemented with studies to look at imaging and biomarkers to recognize cognition. In direct clinical trials, looking at dementia alone would be difficult. No one will perform a clinical trial on withholding control of blood sugar or blood pressure to see what that does to dementia because the proven effectiveness of preventing other serious health disorders is so great that researchers have to adapt and take advantage of the studies being done and look at epidemiology in addition to clinical trials.

  • Many of the studies are examining the impact of interventions on dementia or cognitive outcomes studies that were initially supported by NINDS. The generation of the Bypass Budget and the National Plan itself and the input on the 2013 goals and milestones will help to collaboratively take advantage of those studies.

  • In vascular disease, primary care physicians are motivated to meet certain targets. Cognitive concerns and palliative care are both potentially actionable types of interventions that would make a difference at the patient level, not specific to vascular disease, but to dementia in general.

  • The most immediate intervention would probably be educating physicians and supporting caregivers as misdiagnosis and delayed diagnosis continue to be very common. Physicians in the community do not know what LBD is and do not understand problems with anti-psychotics and the unique aspects of those patients. The other way to approach these issues is to encourage the states to work independently, to be a little more open, and to work toward finding ways to cover the patient's education, diagnosis, and care.

  • Bringing into focus the multiple targets of dementia, including AD, LBD, vascular, and FTD, and being able to reach those targets is not only recognizing the complexity of dementia, but is also helping to develop biomarkers and diagnostic tools that will help moving forward.


International Updates

An update on international progress was given by Ron Petersen, George Vradenburg, and Harry Johns.

  • After the G8 conference that was held in London in December 2013, Prime Minister Cameron focused on the topic of global dementia and had the health ministers from the G8 countries assemble. He appointed Dr. Dennis Gillings of the United Kingdom (UK) to be the World Dementia Envoy and appointed the World Dementia Council to carry on the momentum from the G8 conference. In 2014 and in the beginning of 2015, several legacy meetings were held around the world in the UK, Canada, and Japan, as well as the research summit in the United States in February 2015. In March 2015, a World Health Organization (WHO) meeting took place in Geneva. Approximately 80 countries assembled to discuss the issue of global dementia. At that meeting, the World Dementia Council convened and discussed the next steps. The same council met one more time in June 2015 in Hague.

  • There is a consideration of taking a resolution to the World Health Assembly, which is essentially the governing body that presides over WHO, which would determine next spring whether to make dementia a priority. If that should proceed, then WHO will apply a greater amount of resources to extending and deepening the Global Dementia Observatory.

  • The Global Dementia Observatory has been established to accumulate data on prevalence and monitor the global impact of dementia.

  • As it continues, the World Dementia Council will probably be slightly larger because more governments are present, including Mexico, Australia, Canada, France, Japan, Germany, and hopefully the United States.

  • The current president and the next president of the European Union, as well as the prime minister of the Netherlands, are making dementia a priority in Europe for the next year. This work is going to continue to grow, with a large number of individuals involved. The process has gotten somewhat more complex because there is no one single sponsor but potentially many governments and international organizations.

  • In March 2015, the UK announced establishment of a $100 million preclinical investment fund, a novel funding mechanism that has arisen from the UK government and private sources. This is only the first of what is hoped to be a family of funds that will be created on the global scale to invest in AD research.

  • The Alzheimer’s Association International Conference took place from July 18-23, 2015, in Washington, DC. Researchers from approximately 65 countries attended. Presentations and plenaries covered issues such as other dementias, behavioral symptoms, funding, and topics geared toward new investigators. Meetings such as this one provide opportunities to network and form new collaborations. Among attendees were Congressman Tom Cole, who heads the Subcommittee on Health and Human Services appropriations in the House and had issued a chairman's mark with a $300 million increase. Senators Roy Blunt and Patty Murray deserve credit in the Senate, where they marked $350 million in resources.

  • In the interview with Mr. Harry Johns, Congressmen Cole and Fattah indicated very strong support for ongoing funding increases to AD research and NIH.


Public Input

Rohini Khillan moderated the public comments portion of the meeting.

Twelve members of the public presented testimony either in person or by e-mail and included people living with the early stages of AD, family members and caregivers of people with dementia, and representatives from the Dementia Action Alliance, the National Certification Board for Alzheimer Care (NCBAC), the Alliance for Aging Research, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), the Association for Frontotemporal Degeneration (AFTD), Connected Health Resources, the National Alliance for Caregiving (NAC), Leaders Engaged on Alzheimer's Disease, and the National Asian Pacific Center on Aging.

  • The release of the 2015 National Alzheimer's Plan is a testament to the amount of work undertaken since 2011 and the many efforts that are under way. NAPA has not yet addressed the need for a coordinated national plan to address societal misperceptions and stigmas about dementia including AD.

  • To live a life without hope and without a sense of a future destroys the notion of our wellbeing. We can restore our personhood and the sense 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 do not realize that they have misperceptions about people who are living with dementia and do not realize the impact these misperceptions have on emotional and social wellbeing. Understanding how important it is for people living with dementia to be meaningfully engaged in things they find interesting in daily life, to be given respect, and to have purposeful things to do are vital to their wellbeing and are as vital as their physical health.

  • The words demented and sufferer are stigmatizing, and using these words can make a tremendous impact on how people living with dementia feel about themselves and how others treat and consider them.

  • Social isolation and stigma caused by these misperceptions add to the challenge of living with this condition.

  • The National Plan enhanced public awareness and engagement. The Dementia Action Alliance asked the Advisory Council to include in their work this year development of a detailed plan for coordinated public, private, and national awareness campaigns to educate the public about living with dementia, including addressing the stigma and misperceptions. The Dementia Action Alliance offered its help.

  • The medical presentations on the other dementias were extremely valuable. The next meeting should include speakers who talk about lived experiences with these dementias to provide a humanized perspective. The Dementia Action Alliance applauds the Advisory Council for its commitment to include two people living with dementia on the Advisory Council going forward.

  • NCBAC commended the Advisory Council on its recommendations to prepare a workforce that is competent to deliver care to persons with advanced dementia and their families. The information presented in several sections about the positive impact of the geriatric centers highlights the great work that these institutes achieved.

  • The U.S. Department of Health and Human Services (HHS) and HRSA announced at the White House Conference on Aging a new funding program titled Geriatric Workforce Enhancement Program (GWEP). Florida, with its 1.5 million residents aged 55 or older, includes residents with ADRD and their care partners who no longer have access to educational funding. Many areas of the country will not have access to funding for education on geriatrics, AD, and dementia.

  • Although there is an increase in annual funding to $35 million for workforce training, of which around $3.3 million annually was awarded for dementia education, the inequity of how the awards were granted according to geographic locations is puzzling to say the least. Fewer states and regions receive funding. In total, 23 of the currently funded programs did not receive funding from GWEP.

  • NCBAC hopes that the numbers of health care professionals and consumers served who were included in the 2015 Update will continue to improve for the 2016 Update. However, the demonstration will be forced to put an asterisk after these numbers, stating that not all areas of the country benefited from GWEP funding.

  • Summits and conferences on dementia in American discourse revolve around cure and treatment. Although researchers are hard at work to eradicate ADRD, the job is to truly care for those who have dementia, which is a multipronged process that involves eliminating negative stigmas of living with dementia, supporting our network, and really listening to what people with dementia have to say.

  • Dementia should not change the way children love their parents and their grandparents and feel connected to the whole family. By addressing the importance of the connection between the two generations, we will be educating children, correcting negative stigmas, and ultimately helping people with dementia. The current National Plan mentions nothing specifically about relationships between young and old generations. There should be encouragement to promote the benefits of intergenerational connectedness for young children and the older generation living with dementia.

  • The Alliance for Aging Research thanked HHS Secretary Burwell, Assistant Secretary Frank, and Deputy Assistant Secretary Elam for their leadership on the National Plan and on the progress that has been made since 2011 in all areas across the board.

  • Cultural investment in AD research and care has been a consistent theme in the 3.5 years since NAPA was implemented. The 25% increase in research funding at NIH since 2011 is significant and very much appreciated.

  • A larger issue surrounds NIH funding prioritization. NIH should consider cost to public health care programs, such as Medicare and Medicaid, as part of its prioritization for research investment in specific conditions or diseases. Economic burden on public health care programs is not considered as part of the existing strategic planning process at NIH. Costs of health care programs should also be part of the research funding prioritization equation. NIH is now looking for comment on the NIH-wide strategic plan by August 16, 2015.

  • It is great to see the reference to expanding and enhancing respite care in the plan, as well as regulatory review of adult day services. Both respite and adult day services are important aspects of the caregiver support that may delay institutionalization of individuals with dementia. Although the initial work has been promising, these programs need much wider support and coverage to meet the huge demand.

  • The Resources for Enhancing Alzheimer's Caregiver Health (REACH) program was first funded by NIA and the National Institute of Nursing Research in 1995. There has been a REACH I study and a sequel, REACH II. REACH has been a U.S. Department of Veterans Affairs (VA)-wide program since 2011, and the Administration on Aging has also funded REACH programs throughout the country. Findings from the REACH study show improvements across many areas. Caregivers reported less burden and depression and improved emotional wellbeing overall. They also reported gains in the areas of self-care and healthy behavior, social support, and management of problem behaviors on the part of their loved ones with AD. They also reportedly gained an hour a day of time that was not consumed with caregiving duties.

  • Although expanding REACH to Indian country is another great step for this awesome program, how long will it be before REACH is made a Center for Medicare and Medicaid Innovation model program or better yet, implementing REACH throughout CMS? How many more years do people have to wait?

  • As the website is being updated, two items should be addressed. First, it takes several clicks to get specific information on research studies and how to get involved in a clinical trial. It would be great if this could be more streamlined and if people could access it more directly from the homepage to find out about research studies in the area subhead. Second, the tagline for the site ("For the people helping people with Alzheimer's") seems to unintentionally overlook individuals who have the disease, as well as others who may know somebody dealing with it or just want to learn more about it. The tagline should invite everyone in. The community needs the website, and it is getting bigger and bigger every day.

  • The NTG is referred to as a partner with the Alzheimer’s Association and the National Down Syndrome Society on the publication that the National Down Syndrome Society sponsored. It will focus on dementia and intellectual disabilities, and it will hopefully bring together a lot of information from many places.

  • When somebody with Down syndrome is brought to an office, and the neurologists or physicians examine the person and determine that he or she has Down syndrome, when in all likelihood, the person has dementia--that can go through a different diagnostic process than for the rest of the general population. We need to continue to inform physicians about the process of making the diagnosis because several other co-occurring conditions could be contributing to the cognitive decline. It is important to recognize that people with intellectual disabilities are valued members of their families and their sense of loss is profound.

  • Excess brain iron is associated with AD and several other dementias, which makes it not surprising that there are so many cases of mixed dementias. Diseases that are risk factors for AD, such as cardiovascular disease, type two diabetes, and consistent correlations, have been found between iron overload and cognitive deficits in animals and in humans. Chelation, which is the means of removing iron, has been successful to a modest extent when restoring cognition in some cases. Although it sometimes has severe side effects and burdensome treatment regimens, which indicate room for improvement, MRI imaging can identify the location of brain iron deposits and related tissue damage, leading to accurate diagnosis of ADRD.

  • This is a very complex disease, but if researchers are looking for the one thing that might be disease modifying for AD, other dementias, and many diseases that are associated with them, researchers should look at how they can reduce iron load early in the process. Several things can be done if researchers focus on iron load. Geneticists can devise gene therapies for variations that cause iron dysregulation. Pharmaceutical companies can develop more effective chelators that reduce side effects. Phlebotomy can be employed as a non-toxic, long-term means of reducing iron stores. Dietary initiatives can reduce iron absorption. A national campaign to address dementia by monitoring and safely minimizing iron accumulation in adults could simultaneously reduce the prevalence of other dementias and costly diseases that impair quality of life or cause premature death.

  • AFTD recognizes the Advisory Council's continued commitment to including related dementias and the work of NAPA and appreciates the efforts made to invite the speakers.

  • AFTD is a small but growing non-profit disease advocacy organization based outside of Philadelphia. It was founded in 2002 to support people living and working with FTD, to provide current and accurate information about the disease and caring for a loved one, and to promote medical research on effective treatments and ultimately a cure. AFTD offers grants and postdoctoral scholarships for those interested in basic science in FTD.

  • People can learn more about what AFTD offers in two main ways. The website is full of up-to-date, reliable information about the diseases and appropriate care. All the medical information is reviewed by the medical advisory board, which includes Dr. Lippa. Printed material will be sent to anybody who requests it. AFTD also offers help finding peers who understand the disease and know what it is like to live with FTD.

  • AFTD lists medical centers for diagnostic services and research opportunities, as well as support groups specifically for FTD or one of the related dementias. More than 80 are listed on the website.

  • The other way people can get in touch with AFTD is through the helpline. This is not a live helpline. People call a toll-free number and leave a message or send an e-mail with questions and concerns, and an FTD staff member will respond as soon as possible. On average, AFTD responds to about 40 helpline cases a week with answers, information, or help finding services or connecting to peers for support. If AFTD cannot find an answer or resource, its staff will try and find somebody who can.

  • A team led by UsAgainstAlzheimer's in the Mayo Clinic was awarded a grant from the Patient-Centered Outcomes Research Institute (PCORI) for the National Alzheimer's and Dementia Patient and Caregiver-Powered Research Network. This ushers in a new era in AD research that shifts this discipline from researcher-driven to patient-centered research. This is research done differently.

  • PCORI's large National Patient-Centered Clinical Research Network is for clinical comparative effectiveness research, other types of patient-centered health research, and a range of observational and interventional research that harnesses the power of clinical data gathered at the point of care in health systems across the country. The clinical data can then be augmented by data contributed by patients and family caregivers via registries, mobile devices, or other sources. Although patient-generated health data is often a controversial term, this is a monumental step forward and one that the AD community can be proud of. It is now up to all of us to participate.

  • NAC is a non-profit organization that was founded in 1996. Four agencies are on board, and the membership comprises for-profit, non-profit, and other disease-specific caregiving and patient advocacy groups. The organization was founded by Gail Gibson Hunt. In addition, NAC has a network of state and local network coalitions across the United States and an international coalition related to caregiving and carer issues. There are about 12 countries in its membership.

  • NAC conducts a report every 5 years with AARP. [The executive summary from this report was distributed to the meeting attendees.] The report is a quantitative population base study of about 1,200 caregivers with oversamples for multicultural populations and data, including caregivers who are older than 75 and different age groups of caregivers. The full report is available.

  • NAC found that 22% of America’s 43.5 million family caregivers support a loved one with this disease, either as the primary reason for care or a secondary diagnosis. Those who provide care to someone with AD, dementia, or other mental confusion often support a variety of tasks. They are helping with an average of about 2.2 activities of daily living (ADLs), 4.6 instrumental ADLs, and even some nursing tasks. In addition, these caregivers are more likely than the average caregiver to help with other key activities such as monitoring health, advocating on behalf of the person with dementia, or communicating with health care and other service providers.

  • The care, although unpaid, does not come without cost. Dementia caregivers are more likely than others to help with performing ADLs and other tasks. They are providing medical or nursing care in the program without prior preparation.

  • The high emotional stress of caregiving has affected caregivers' health. Caregivers who are 53 years old (on average) can expect to keep providing care for another 5 years. That affects not only the person for whom they are caring, but also the caregiver's own health, wellness, and future retirement.

  • Other research has shown that the family caregiver's health declines as the care recipient's condition advances. Therefore, the caregivers must be kept safe and healthy to keep the person with dementia safe and healthy.

  • Because of shrinking family sizes and families who live across long distances, there are many caregivers. Other advocates have urged the Advisory Council to continue to consider solutions related to family caregiving, and NAC commended this Advisory Council on the 2015 report and the recommendations to that effect. Additionally, NAC offered to be a resource in this area.

  • NAC urged the Advisory Council to consider how new technologies can be helpful in addressing the growing gap in caregiving and look to the VA Caregiver Support program as one potential model for a federal national plan in family caregiving.

  • Although researchers want everything they do to be evidence based to the extent that evidence exists, sometimes the way to develop evidence is by getting out in the field and trying things and asking people to accept that the evidence is not always there in advance of implementing, but that if people are willing to put themselves forward and be part of the team that develops evidence, they may benefit from that process and will undoubtedly help those who follow in other communities, in other disease states, and in other families.

  • Through the Dementia Friendly America initiative, 5 (possibly 6) communities will start initially, and there will be around 15 in early 2016, but communities across this country will need to step forward and say that they have something to learn from what these pilot communities have done, but they also have something to share with the communities that follow up.

  • To the extent possible, the Advisory Council should bring more voices to the table, particularly people living with various forms of dementia and beyond the AD space. The Advisory Council was encouraged to be creative in this process in the spirit of being national rather than just federal to work with private-sector stakeholders to bring resources to bear to extend reach into other communities, as well as what is heard and learned from other communities.

  • The process to try to supplement federal funding and make it more national than purely federal is to include language that urges private-sector funders of all stripes to develop a system by which those private funders have access to review grant proposals that were submitted to NIH for dementia research projects but for which NIH did not have enough cash to fund. These private funders could look at proposals that have already been vetted. The proposals are scientifically meritorious, and researchers themselves have said they would like their proposals to be reviewed by private funders if they are not NIH funded to give them an opportunity to fund those projects.

  • AD and dementia are growing in the Asian American and Pacific Islander (AAPI) community. Age is considered the greatest risk factor for AD, and AAPI women have the highest life expectancy, 85.8 years, of any ethnic group. Factors that prevent early intervention include cultural beliefs and language, a lack of awareness that contributes to stigma, and limited accessible and culturally proficient services. Further, many AAPI older immigrants may feel discouraged to access aging and health care services, including those for dementia, for several reasons: being unfamiliar with medical practices, having to locate interpreters, and fearing that miscommunication may lead to misdiagnosis and improper treatment.

  • Language and cultural barriers prevent members of AAPI community from fully participating in the United States health care system, and studies have shown that linguistic discordance or miscommunication has implications for health outcomes and quality of care.

  • The National Asian Pacific Center on Aging, which is the leading advocacy organization committed to the dignity, wellbeing, and quality of life of AAPIs as they age, respectfully requests that the Advisory Council dedicate a meeting to discuss the effects of dementia and outreach to AAPI and other diverse minority communities.

  • Raising awareness of the impact of ADRD among AAPI and other diverse communities is an important first step to ensure that AAPI elders and their families, regardless of language, cultural, economic, or other barriers, will have access to equity in the service, benefits, and programs that are available to all American seniors.


NIH Bypass Budget for Alzheimer's Disease and Related Dementias

Richard Hodes from the National Institute on Aging lead a discussion of the NIH Bypass Budget.

  • Dr. Francis Collins, addressing the Advisory Council through a video, released the first NIH Bypass Budget for AD. [At 1:45 p.m., the Bypass Budget was distributed to Advisory Council members, and handouts were distributed to all other attendees.]

  • The legislation called for NIH each fiscal year (FY) for 2025 to prepare and directly submit to the president for transmission to Congress a Bypass Budget, which is an estimate of the funding required to meet the goals of the National Plan.

  • The proposal for FY 2017, the first year of this process, is at the first of several years in which there will be successive proposed increases by way of the Bypass Budget. The budget is transmitted to Congress without any changes. It will be seen for comments by the Secretary and by the Advisory Council. Those comments will be transmitted as well but with no change as a result of any of these processes and the Bypass Budget, which is under the judgment of NIH.

  • The Bypass Budget is an exercise in which NIH sought priorities, translated them into milestones needed to accomplish those priorities, and estimated the cost to support that research. The input from experts as noted came from many opportunities and exercises. Among them were the 2012 Alzheimer's Disease Research Summit, the 2013 reporting on related dementias and advancing treatment for AD in the context of Down syndrome, and most recently (in February 2015) the Alzheimer's Disease Research Summit.

  • At those activities, hundreds of scientists, national and international, and from the public and private sectors, came together to bring to a consensus the priorities for research carried out to meet the goal of ultimately effecting a substantial intervention for ADRD by 2025.

  • The NIH Bypass Budget estimates the need for an additional $323 million for FY 2017, which is above the base budget. This will move toward the goal of preventing and treating ADRD by 2025.

Discussion after the presentation included the following comments and clarifications:

  • An important parameter in the NIH-proposed Bypass Budget is one that can achieve the greatest effectiveness. Engage in a multiyear plan: The milestones are laid out and achieved with the most efficiency and the greatest possible speed to expand the research effort. In most general terms, a good deal was the $323 million proposed for FY 2017; a good deal could also be accelerated by funding in 2016. That would enable NIH to use the increased amount in 2016. This would in turn accelerate the milestones and priorities in terms of what might happen in later years.

  • NIH is confident that the ability to scale up research to have a substantial increase as currently proposed for 2016 would allow that slope to be maintained, with the increase through 2017 accelerating it further. At this pace, the ramp-up toward an important target would happen quickly.

  • NIH planned the Bypass Budget without including what would be the $300 million or the $350 million from the House and Senate. They planned for the alternative: What would happen if the base funds were to be increased by $300 million? This reassures us that we can accelerate much of what is proposed in 2016 rather than in 2017, so we can be well positioned to accelerate some of what will occur in later years. The mix of the $323 million would change, but the $323 million is the differential for that year.

  • The Bypass Budget recommendations came from the consensus after the NIH planning and summit meetings. NIH established the milestones (number of studies, kind of research by a given mechanism) necessary to reach all goals, targets, and priorities. The final step was attaching the dollar amount to a reasonable level of activity under each of those milestones based on the research and how much it costs.

  • In each category, the goal, target milestones, and dollars were set as they are, which reflects the best judgment across NIH as well as the experts consulted and ensures optimal excellence in solicitation review and in funding that research.

  • The dollar estimates came from NIH staff who have had experience with the costs of this kind of research in past years. The translation from priorities to milestones is a process that has been a manual exercise that has been shared for these past several years.

  • Some infrastructure changes may need to happen to meet the goals in 2025. In terms of the funding, the constraints are driven by the science. But in terms of some of the practical items of soliciting excellent science and reviewing, it may need to change quickly to get to the cure.

  • If favorable events happen in FY 2016, NIH will adjust the FY 2017 budget. As a matter of fact, this exercise is actually in progress and largely accomplished. It would be a technical issue; if the base were to increase, NIH would revise its request. The magnitude would be the similar, but the content would be changed to account for what was already accomplished in FY 2016. If and when we achieve a much higher base for increase a couple years from now, we could then similarly increase in some proportion--this is speculative but makes sense.

  • There must be a mix of specific initiatives that invite funds and indicate the availability of funds for broad areas to take advantage of investigator-initiated research. The importance of what has happened as a result of the interim increases in funding for AD already, when the overall NIH and NIA budget, with the exception of the AD fund, have been relatively flat for the past several years, is that inflation has led to constraints in pay lines, most particularly for investigators who have great scientific ideas.

  • The increased funding NIH received in FY 2015 for AD already has provided an opportunity to have a publicized pay line for AD research, which is nearly twice that for the rest of the NIH-supported research.

  • NIH already has a common ability for private partnerships already. Part of establishing the infrastructure to allow that to happen relates to having the capacity in clinical trials recruitment, in institutional review board function, and in cohorts ready for recruitment.

  • In the research on caregiving, is a zero missing? Looking at that budget, there is a discrepancy of funds being spent on care and services.

  • The dollars do not reflect the proportion of the importance of what goes on. They relate to scientific tone and the cost of research in those areas. This is the best judgment this year after meetings and recommendations that came forward to try to understand what the research needs and what it would cost to carry it out. In subsequent years, the budget will be subject to more input and revision of those estimates.

  • In terms of the milestones for the priorities described, no new public-private partnership activities are called for in 2017. Some are scheduled in 2016.

  • The strategic planning will be critical, but embedded in that is something that comes up with the presentation of those issues: another wave of accountability and looking at the outcomes. Although these public-private partnerships for next year have fallen down, we can take this opportunity to look at the level of success of those that have been established and compare those with the other mechanisms of funding that are in place. The reason for that is not just the strategy of planning in which those partnerships should be, but also what are the partnerships best for and how can we accelerate the pace of research strategically based on their accomplishments and the relative contributions to the field.

  • If one imagines a future where we get $2 billion or more in annual spending in a few years, it would be useful to get structures and accountability methods in place, so we can sense how we are making progress.

Dr. Petersen requested for the Advisory Council members to submit individual comments on the NIH Bypass Budget to Congress by mid-September 2015.


Update on the New York State Program

David Hoffman from the Bureau of Community Integration and Alzheimer's Disease updated the Advisory Council on the New York State program.

  • New York State (NYS) is now home to more than 380,000 persons with ADRD, which is projected to grow to 460,000 by 2025.

  • NYS has 1 million unpaid caregivers for persons with ADRD who provide 1.1 billion hours of unpaid care with an estimated value of $14 billion.

  • More than 25% of ADRD caregivers provide "constant care" for 40 hours or more a week.

  • Providing care to individuals with ADRD has resulted in an estimated $771 million in higher health care costs for NYS caregivers.

  • Populations that are disproportionately impacted (women, minorities, people who live alone) are at greater risk for complications.

  • Early planning offers respect to the patient's wishes and comfort to caregivers.

  • Caregiver support services alleviate caregiver burden, enhance the quality of life for the individual with ADRD and the caregiver, reduce institutional placement, and lower health care costs.

  • For the first time, there is an opportunity to use evidence-based strategies to support the vulnerable population on a large scale.

  • The 5-year Alzheimer's Disease Caregiver Support Initiative provides a wide range of comprehensive and coordinated evidence-based caregiver support and respite services within specified geographic regions.

  • The components include the Statewide Caregiver Project, the Centers of Excellence for Alzheimer's Disease (CEAD), the Alzheimers Community Assistance Program, Caregiver Support for Underserved Populations, and project evaluation.

  • Statewide caregiver project goals include development and sustainability of evidence-based support services, reduction of avoidable emergency department visits and hospitalizations, improvement of coordination and access to new and existing support services, expansion and enhancement of access to respite services, improvement of the health and wellbeing of caregivers and individuals with ADRD, limitation of all unnecessary transitions, and continuation of community residence and reduction of institutionalization of individuals diagnosed with ADRD.

  • Statewide, regional, and community non-profit organizations; government agencies (e.g., Area Agencies on Aging), and established partnerships of two or more of the types of organizations listed above are eligible to apply.

  • Applicants will provide the following caregiver support services: care consultation, family consultation, support groups, education and training programs, respite, and one or more additional allowable caregiver service(s). In addition, they will be required to collaborate with community-based organizations and conduct a thorough evaluation of their project and program’s effectiveness.

  • A total of $15 million per year will be disbursed among either 1 statewide entity or 10 regional entities across NYS (three awards in New York City). Each successful applicant will be awarded up to $1.5 million per region per year or $15 million per year for a statewide initiative. This is a 5-year contract with the New York State Department of Health (NYSDOH).

  • Applications are due by August 4, 2015, and the contract period is from October 1, 2015, through September 30, 2020.

  • Another initiative is establishing CEAD. Since 1988, NYSDOH has funded nine Alzheimer's Disease Assistance Centers (ADACs). They have been providing comprehensive and coordinated medical and support services to individuals with ADRD, their families, and caregivers. They will now be rebranded as CEAD.

  • CEAD project goals include the following: provide education and training to health care providers and students in health care professions, promoting the benefits of early diagnosis and treatment of individuals with ADRD, use of available treatments, and enrollment in clinical trials; diagnose ADRD and comorbid conditions; prescribe effective treatment of ADRD, including palliative care and appropriate non-pharmacological treatment of behavioral symptoms; provide follow-up care at least annually; use an interdisciplinary team approach for patient diagnosis and care; provide patient, family, and caregiver support and community linkages; offer care management services (including needs assessment, care planning, care coordination, counseling, consultation, and referrals) through close working relationships with service providers within a designated geographic area to individuals with ADRD and their caregivers; expand and enhance the health care system's capability to diagnose and treat individuals with ADRD; provide technical assistance to health care and other service providers in the designated service area; and promote benefits of participation in research (e.g., clinical trials, studies, patient registries).

  • NYS non-profit major teaching hospitals with a demonstrated capacity for providing in-service and pre-service training for primary care providers, specialty care providers, medical students, and other health professionals are eligible to apply.

  • Project components include disease diagnosis and assessment, patient management and care, medical provider training, collaboration with community organizations, promotion of public awareness of AD, and project evaluation.

  • A total amount of $4,700,000 per year will be available to support up to 10 regional CEADs (three awards in New York City). This is a 5-year contract with NYSDOH.

  • Applications are due by August 18, 2015, and the contract period will be from October 1, 2015, to September 30, 2020.

  • The Alzheimer's Disease Community Assistance Program is authorized by public health law. It is a statewide contract with Coalition of Alzheimer's Association chapters. Seven chapters cover services statewide. The value has increased from $1 million annually to $5 million.

  • Alzheimer's Disease Community Assistance Program core services include care planning and consultation, caregiver training, a support group, a 24-hour helpline, community awareness, and increased training for important constituencies.

  • Caregiver Support for Underserved Populations will provide the opportunity to compete for 15 awards for up to $100,000 ($1.5 million total). The focus will be on traditionally underserved communities based on geography, culture, language, and so forth. The competition is planned for late summer 2015.

  • Project evaluation will take place in partnership with the University at Albany School of Public Health and all contractors and will look at measurement of common elements, assess Medicaid impact periodically, and provide periodic reports to the field.

Discussion after the presentation included the following comments and clarifications:

  • Many of the anticipated applicants, particularly for the regional care support project, have existing relationships with the tribal organizations in New York, and it is anticipated that those tribal organizations are going to be partners in a number of the applications.

  • New York had a series of meetings with the University at Albany and the Alzheimer's Association in New York to discuss identifying the incremental measures that can be used. They have spent the last 3 months looking closely into New York's Medicare data to have a solid baseline to measure against. NYS will be using that baseline moving forward to try to identify any trends that were seen based on the initiatives.

  • There is $25 million in new money, but that is on top of the ongoing funding, which is about $2 million, so the total operating budget for New York’s program is $27 million. Out of that $2 million, about $1 million went to the Alzheimer’s Community Assistance program contract with the Coalition of Alzheimer’s Association chapters, and the other $1 million was split among nine teaching hospitals.

  • New York should sharing its model with legislators and governors. This would be helpful to other states.

  • New York is planning on being as flexible as possible with the $100,000 Caregiver Support for Underserved Populations grants in terms of eligible organizations, the communities they propose to serve, and the activities and initiatives they propose to conduct. The state is anticipating a large variety of organizations applying those grants. In a defined community, $100,000 a year for 5 years is a lot of money.

  • New York’s project is being funded entirely by the Medicaid Savings Program. Under Governor Cuomo’s leadership, the Medicaid redesign team worked on redesigning Medicaid in New York from the bottom up. It focused on care coordination for all. New York has already achieved substantial changes in the cost curve in health care costs. By keeping Medicaid increases under a cost cap from year to year, achieved savings can then be reinvested in various ways.

  • It is not always easy in the continuative process to allow for a lot of innovation, but there is capacity to change the contract work plans or reporting mechanisms from year to year. New York has reserved the authority to do that in the contract process moving forward.

  • In terms of the care, the context is the same in every state. Long-term care costs are skyrocketing. The devastation, financial and otherwise, to families is happening not just in New York but across the country and around the world, and the context that this happens in is significant. The G8 summit, the WHO reports, and this group's annual updates to the National Plan helped with that process. It helped build a context that it is time to do this now--no need to study it for 5 or 10 more years. Based on the work done by of the London School of Economics, dementia care costs are going up 5%, 6%, and 7% a year globally, and the economic growth is in the 2%-3% area. This is simply unsustainable.


National Plan Update Discussion

  • Two cycles ago in the National Plan, the Advisory Council supported funding an expert panel on advanced dementia hosted by the Institute of Medicine through the end of 2014. Each of the three meetings had broad attendance in the research and care industries. The key recommendations from that panel were presented to the HHS Secretary to hopefully be included in the National Plan. The panel highlighted that United States provides high-cost care that is poorly coordinated, often burdensome, and often does not achieve the goals that the patients have expressed for themselves or the families. However, not one of the expert panel's recommendations that were put as recommendations for the National Plan was embraced in the current update. In fact, the National Plan essentially does not incorporate any of the Advisory Council's 2015 recommendations on care and support. Before going through another cycle again in fall 2015, it would be helpful to get a thorough response on each recommendation and an explanation of why each was dismissed. It seems fair to share the rationale for not advancing any of the recommendations in the current updates.

  • As a reminder to the group, two large studies were funded to investigate comprehensive coordinated models of diagnosis, care planning, and support in two communities. Those studies were funded because CMS and others believed that the earlier studies have been building blocks but were not yet sufficient to really demonstrate that new models of care were effective at improving care at a reasonable cost.

  • Research goals are crucial because meaningful treatments can prevent, slow down, or improve the disease. However, the goals for improving care and providing support are also crucial. For most persons living with dementia and their families, the Advisory Council's activities over the last 4 years have not really affected their lives at all.


Reflections by Departing Advisory Council Members

  • Dr. Jennifer Manly was honored to be part of the Advisory Council and the head of the research subcommittee. The research subcommittee was full of passionate intelligence and well-informed, sophisticated, and influential people. It was a tremendous challenge to be the person who was supposed to harness all that energy. What came out in terms of recommendations was much more than just a consensus. In terms of moving forward, this Advisory Council may need an additional member from the community of people with lower socioeconomic status, people of color, and people with fewer years of school. The Advisory Council needs to engage certain communities in that dialogue now and in all aspects of their work, and not just after the fact--try to engage people from the beginning. The science of disparities and diseases/disorders is extremely important and valuable in and of itself. The science of disparities will help to delay the onset and slow the progression of this disease. It is not just about making the face of AD more representative. It is about doing the right science for the right people in the right way. It is also important to engage people with non-pharmacological solutions in reducing cognitive impairment and working on developing creative interventions that can help to slow the progress of diseases and outcomes of many domains to increase quality of life. Dr. Manly thanked Dr. Petersen as one of her mentors and all members of the Advisory Council, as well as all of the public comment speakers who attend the meetings and provide their comments meeting after meeting.

  • Dr. Yanira Cruz expressed her gratitude for the opportunity to be a member of the Advisory Council. She acknowledged all members for their contributions to making a difference in the lives of persons and families affected by dementia. She reflected on the international work because it informs the work done in the United States and helps to move the agenda in the right direction. She found working with representatives from other agencies very rewarding. Dr. Cruz encouraged the Advisory Council to put stronger emphasis on outreach, particularly outreach to communities that are isolated, have low health literacy, whose members speak English as a second language, and that are in rural areas. Mechanisms need to be created to advance outreach to vulnerable communities and caregiving and supporting caregivers. Paying attention to inequity in our society is very important as it relates to AD. It is important to remember and not lose sight of the fact that the demographic is changing, not only in the United States but also across the world. For the first time in human history, there will be more older adults than the younger population. That will change how programs and interventions are developed and implemented in public health. Dr. Cruz urged the Advisory Council to continue to pay attention to the needs of changing diverse communities as the current administration transitions into a new one in less than 2 years. She encouraged the Advisory Council to think about how to continue to maintain the community work and not lose the momentum of the effort as the new administration comes in.

  • Mr. David Hoffman thanked everyone for the opportunity to reflect on the experience of the last 4 years and called it the highlight of his career because he worked with dedicated people on a committee and federal officials who listened. This group of people and the actual plan have moved the needle in 4 years. The context has changed. Four years ago, the National Association of Chronic Disease Directors of public health organizations did some polling about interest in working on dementia issues, and four states responded positively about wanting to engage in a process. In September 2015, 40 states will be regularly participating in this process. That move is very encouraging. Mr. Hoffman acknowledged the public and their comments noted that this is an important part of the process and what keeps him inspired. He also noted that listening to Ms. Geraldine Woolfolk and Mr. David Hyde Pierce as they provided the caregiver perspective helped him to stay grounded throughout the 4 years. Mr. Hoffman noted that it is important to recognize that this is just the beginning, and this process needs to keep moving forward. His message was to shine a light on the issues whenever possible and listen to Mr. George Vradenburg’s advice, measure everything, and shout it from the mountaintops.

  • Mr. Dennis Moore, a person who lives with AD, is proud to have the opportunity to serve on the Advisory Council. He appreciates the distinguished people on the Advisory Council and the opportunity to discuss and advocate with members of Congress. Mr. Moore wants to continue to advocate for further funding for AD research and ultimately hopes that a cure for AD will be found.

  • Mr. David Hyde Pierce was grateful for the opportunity to be a part of the Advisory Council. As a caregiver himself, this experience was very important to him and his family, although at first it was a bit of culture shock with words like constituencies and stakeholders. Mr. Pierce applauded all the public commenters. He mentioned the midstream change in describing the goals and the mission for dealing with dementia including AD, which came from the public comment. The public commenters, their passion, and their persistence is what led to those changes. There was a time when no one cared about AD; it was just "what happens to old people." It is important to continue to reexamine the language being used when talking about dementia and what it means for people who are living with AD. Those with ADRD are finally getting more attention, and that is another reason to never take the language for granted. It will always matter. It is how we communicate with each other and to our constituents. Mr. Pierce also acknowledged Mr. Michael Ellenbogen for his eloquence and passion for the AD cause. He noted that Mr. Ellenbogen's frustration and anger grew too big for this room but has not stopped him; there must be a place for anger and frustration because it will keep us going and is part of the energy that will ultimately propel us to the cure.

  • Mr. Vradenburg first acknowledged Mr. Ellenbogen and noted that banning him from HHS buildings and meetings because of his fierce advocacy was a bad decision and hopefully a mistake. The advocacy in this room should be fierce because if it is not fierce, then the Advisory Council is not serving constituents. Mr. Vradenburg said he was proud of his service and grateful to Secretary Sebelius for giving him the opportunity to serve on the Advisory Council committee. Mr. Vradenburg pledged to stay active on this passionate crusade for the rest of his life. During his 4 years on the Advisory Council, he enjoyed sharing his passion related to AD issues and the generosity of the people around the table in terms of their own time and resources. They care about these issues. They care from an emotional place, a different place than your normal Washington meeting. This is a place of caring and a place of love. Mr. Vradenburg thanked Dr. Hodes for making progress on the pharmaceutical front. There has been progress in several areas, although no progress has been made in changing the lives of the people with this disease or their caregivers or families, and that is a shame. The Advisory Council brought a focus to the work and provided opportunities for networking. There is a networking opportunity for non-federal members to make friendships and alliances and to find common causes with a lot of the people in the Federal Government. There is also a tremendous help with information sharing through sharing reports at the Advisory Council about what is happening around the world, what is happening in the scientific community, and what is happening in communities nationwide. The public comments have changed the Advisory Council's agenda. The constant advocacy of people with other forms of dementia broadened the Advisory Council's efforts. There is the sense of urgency and passion around these issues, but the government does not seem to act on it. Six billion dollars goes out the door for Ebola efforts, and that is more than what was ever cumulatively invested in AD. Mr. Vradenburg again noted that the Advisory Council did not change the lives of people with this disease or their families and has not set the measurable goals metric in that space; it has not defined how deep the annual wellness examination should go or defined a pathway to better detection and diagnosis. Other nations have set their goals. Japan has set the 2025 goal, which is focusing on integrating its medical and care support systems in a single unified system that responds to all the needs of those with this disease. Other countries have set increased rates of detection as a goal, with metrics accompanying each of them; they have set goals in terms of the percentage of those diagnosed or those at risk for the disease who stay in clinical trials. The Care Research Summit that was proposed at the last meeting in the April 2015 readiness letter met with 3 months of delay, and the response was to take it up in October 2015 when the new panel will convene. The Dementia Friendly America initiative that Dr. Laurel Coleman recommended last time has been announced but met virtually no response from the Federal Government. The representatives of the federal agencies attend the meetings, but there is really no way to change existing practice. In terms of disparities, the United States will be a majority/minority country by 2050. The health of minorities is going to be the health of America in 35 years. That is why Mr. Vradenburg named his organization UsAgainstAlzheimer's. Great work has been done, but so much great work has yet to be done.


Concluding Remarks

The process of replacing the departing Advisory Council members is in progress. The applications are being reviewed and the new members will be announced in August 2015.

The next Advisory Council meeting will take place on October 26, 2015.

The meeting adjourned at 4:27 p.m.

Minutes submitted by Rohini Khillan (ASPE).

All presentation handouts are available at National Alzheimer's Project Act page.