National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, January 2012

• S. Keller  |  03-22-2012
• M. Janicki  |  02-16-2012
• R. Conant  |  02-08-2012
• M. Ellenbogen  |  02-03-2012
• K. Srsic-Stoehr  |  01-23-2012
• M. Hogan  |  12-30-2011
• M. Hogan  |  12-05-2011

We, Drs. Matthew P. Janicki and Seth M. Keller, are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices. On behalf of the National Task Group, we wish to make our thoughts and recommendations available to the Advisory Council with respect to the Draft National Plan to Address Alzheimer's Disease. To complement the National Alzheimer's Plan Act process, the National Task Group was convened and produced a report titled, "My Thinker's Not Working: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports", which was designed, in part, to develop and enhance community care options for aging adults with intellectual and developmental disabilities. The National Task Group also issued the "National Dementia and Intellectual Disabilities Action Plan" as part of this report. The National Task Group issued this Action Plan in January 2012 in the hopes that it would promote better understanding of how adults with intellectual and developmental disabilities age and how dementia, in particular, affects them.

We note that the issues we identified in the National Task Group's report, which was submitted to the Advisory Council at its January 17th meeting, has many parallels with those raised in the Draft Plan. Our report summarized and addressed some of the challenges facing the nation due to the increasing rate of dementia found in older people with Down syndrome and other intellectual disabilities. Our report also noted that older adults with intellectual and developmental disabilities have special needs that at times require different actions than those provided for people in the general population. Alzheimer's disease affects everyone; but not everyone can be treated the same way when they are affected by this disease.

We have submitted these comments in order to clarify and provide feedback to the Advisory Council regarding its Draft Plan. First, we would like to note that the National Task Group is pleased that the Draft Plan contains mention of intellectual disabilities (in Strategy 2.H) as this group of Americans is composed of a significant number of individuals who are at exceptionally high risk for Alzheimer's disease. We also would like the Draft Plan to contain at least mention of some general issues that we have raised in our Report and also have more elaboration on some key specific issues affecting people with intellectual disabilities.

Given this, we'd like to offer the following comments:

1. Missing mention of the significance of Down syndrome in Alzheimer's research

   We are concerned that the text under Goal 1, neglects mention of the research with respect to the needs of people with Down syndrome, a group of individuals expressing a particular high risk for Alzheimer's disease. Certainly sustained research is warranted to better understand the etiology and course of dementia in this group of individuals. Additionally, notwithstanding the competing beliefs of whether research involving people with Down syndrome will benefit general research into the nature and cause of Alzheimer's disease, we feel that continued support of research concerning and involving people with Down syndrome will not only potentially benefit the general population, but will certainly benefit the thousands of adults aging with Down syndrome and who are at high risk for and are affected by early onset dementia. Like individuals with genetic mutations resulting in early onset Alzheimer's disease, individuals with Down syndrome also demonstrate early onset of symptoms and more research into this phenomenon is necessary. We would like to emphasize that focused research into a relatively homogeneous population such as individuals with Down syndrome and Alzheimer's dementia can provide important clues when generalizing to the larger population of people with Alzheimer's but absent Down syndrome.

   Thus, we strongly recommend that the Draft Plan include mention that given the high risk of Alzheimer's disease among adults with Down syndrome, there is the continued need for focused basic and treatment research involving people with Down syndrome -- and this should be included under Goal 1.

2. Mention of the special programmatic and care challenges faced by people with intellectual disabilities

   We note with satisfaction that the Advisory Council's Draft Plan recognized the importance of the special programmatic and care challenges faced by people with intellectual disabilities and included mention of this in Goal 2, under Strategy 2.H (Action 2.H.1). However, we would like to recommend that mention of the special circumstances of adults with Down syndrome and other intellectual disabilities receive mention earlier in this section, so that it is clear that the Strategies included under Goal 2 apply equally to this population. We would like to see the Draft Plan recognize that Alzheimer's disease mostly impacts adults with lifelong intellectual disabilities in the same ways as it does other people, but sometimes has a more profound effect due to particular risk factors - including genetics, neurological injury, and deprivation. Further, under the Strategies noted under Goal 2, it is important to propose that any NAPA-related task forces created (as cited in the Draft Plan) not only look into improvements of care for this specific population, but also, and perhaps more importantly, increase awareness, improve screening and early recognition, and conduct population specific clinical trials involving adults with intellectual disabilities.

   Thus, we strongly recommend that the Draft Plan include mention of the special circumstances of adults with Down syndrome and other intellectual disabilities earlier in the second section, so that it is clear that the Strategies included under Goal 2 apply equally to this population.

   Under Strategy 2.B, we would also like to recommend that mention be made of the challenges of carrying out effective screening and diagnoses for dementia among most individuals with intellectual disabilities due to their inherently varying abilities and cognitive functions. When nationally applicable instrumentation is developed or recommended it would be highly beneficial to make mention in the Draft Plan of the need for specialized screening instruments for use with adults with intellectual disabilities. The National Task Group is currently undertaking the development of such an administrative screen, which would have specific application to people with intellectual disabilities who otherwise may not be adequately or successfully screened by tools in existence and applicable to the general population. Recognition of this special need and work by the National Task Group would go far to gain acceptance of a regularized screen applicable to adults with intellectual disabilities.

   We also would recommend -- adding text under Strategy 2.E -- that the notion that community care, as noted in the 2002 Madrid International Plan of Action on Ageing, be the paramount means of long-term 'dementia capable' care delivery. We note specifically the growing evidence-based research that is supporting the inclusion of small group homes -- as a viable assisted living model -- and their role as a potentially powerful alternative care setting for people with dementia, and in particular those with lifelong disabilities. Research in the intellectual disabilities services area has shown this model to be particularly effective in providing quality care for those adults with intellectual disabilities affected by dementia.

   Thus, we strongly recommend that the Draft Plan include consideration of the special challenges in assessing and determining the presence of dementia in adults with certain intellectual disabilities and that any national guidelines produced contain this consideration.

   We also strongly recommend the consideration of the use of small group homes for the community 'dementia capable' care of adults with intellectual disabilities affected by dementia as backed by evidence-based research in the intellectual disabilities field.

3. Mention of the special support needs of aging caregivers providing long-term in-home care of adults with intellectual disabilities

   As many adults with intellectual disabilities and in particular those with Down syndrome remain in their family homes living with their parents or other family caregivers as they grow older, it is crucial that under Goal 3 inclusion of the challenges faced by these caregivers -- when providing care-at-home to their relatives with intellectual disabilities and dementia -- be given due mention. These 'life-long caregivers' warrant special attention in the Draft Plan as they are providing an important and crucial bulwark against costly institutionalization and oft-times inappropriate admissions to long-term care facilities. They are also often vexed by emerging symptoms of dementia in their adult children who have successfully mastered many general activities of daily living and now are manifesting decline. Special mention to the situations of these lifelong caregivers should be made in the Draft Plan. In this context, the National Task Group also recommends that Strategy 3.C.1. be amended to recognize that in many settings concerned with adults with intellectual disabilities, decisions are often made by proxy (and not by 'middle-aged adults') and that adults with intellectual disabilities are not the ones planning for their own long-term care needs. Thus, consideration should be given to enabling parents or other family members, providing primary care, to undertake productive long-term care planning.

   Thus, we strongly recommend that the Draft Plan include consideration of the special challenges faced by life-long caregivers of some persons with intellectual disabilities.

4. Mention of the enhanced public education resources related to intellectual disabilities

   Under Goal 4, we strongly recommend including the needs of family caregivers and people with intellectual disabilities under public education campaigns and that the greater coordination efforts by government and the voluntary sector should get mention. As the state developmental disabilities authorities (agencies) are instrumental in helping organize state functions and programs with respect to intellectual and developmental disabilities it would be extremely beneficial to include these entities (and state developmental disabilities planning councils) in any public education efforts at the state level. Also, education and training for health professions with respect to aging individuals with dementia -- especially of the Alzheimer's type -- should be included as part of primary health care education. As there are health care disparities, an aggressive education campaign should involve universities, hospitals, emergency rooms and general medical specialists as it relates to cognitive and functional disability and its detrimental effect on caregivers and quality of life of the individuals with intellectual and developmental disabilities.

   Thus, we strongly recommend that the Draft Plan include consideration of additional and targeted efforts related to public and medical education so that these efforts have a functional effect on helping people with intellectual disabilities affected by dementia.

The National Task Group recognizes that dementia has a devastating impact on all people -- including people with an intellectual disability and their friends, families and the staff who may be involved with them as advocates and caregivers. Given this, we are very pleased that the Advisory Council recognized the import of the special challenges faced by people with intellectual disabilities and included mention of this group in Strategy 2.H. We would hope for those adults with intellectual disabilities currently affected by dementia and those in the next generation who may be affected (as the timeline for the NAPA process encompasses the next 13 years) that the Advisory Council will recognize other areas of inclusion of the specific issues affecting individuals with intellectual disabilities within the Draft Plan and accept our recommendations for additional areas of mention and focus.

We trust the our comments and recommendations will be accepted in the spirit in which they are provided -- as the collective concerns and thoughts of a significant body of professionals, scientists, administrators, family caregivers and advocates, and persons personally affected by dementia -- who are represented by the National Task Group on Intellectual Disabilities and Dementia Practices.

Just wanted to check this through with you. We know we 'informally' presented our National Task Group in Intellectual Disabilities and Dementia Practices' national report and plan to the Council at its meeting on January 17th, but were concerned that perhaps it was not a formal submission and thus may not warrant distribution to the Council and our intent not recognized in official comments submitted to the Council and the NAPA DHHS team.

If that is the case, please accept this submission (with the NTG report attached) as our 'official' submission to the NAPA process. Our cover note accompanying the dissemination of the document is provided below.

Thanks for your help with our effort -- it is much appreciated.

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National Plan on Dementia and Adults with Intellectual Disabilities

The National Task Group on Intellectual Disabilities and Dementia Practices has issued a plan for improving the community care of adults with intellectual disabilities affected by dementia. "This is an issue that will only grow in intensity and the nation needs to address this challenge head on" said Dr. Seth M. Keller, the President of the American Academy on Developmental Medicine and Dentistry and co-chair of the National Task Group. The Group's report, "'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports", summarizes and addresses some of the challenges facing the nation due to the increasing rate of dementia found in older people with intellectual disabilities.

The report offers recommendations for the improvement of services and suggests that its findings and recommendations be considered and integrated into the reports and plans being developed by the federal Advisory Council on Alzheimer's Research, Care, and Services -- under the National Alzheimer's Project Act. The report notes that Alzheimer's disease mostly impacts adults with lifelong intellectual disabilities in the same ways as it does other people, but sometimes has a more profound effect due to particular risk factors - including genetics, neurological injury, and deprivation.

Dr. Keller said that "families are often the main caregivers for adults with an intellectual disability and when Alzheimer's occurs they are profoundly impacted." Such families not only include parents, but also siblings and other relatives. The report notes that many such families have difficulties in providing extensive care at home once dementia becomes pronounced and care demands overwhelm them.

The report also notes that it is important to recognize signs of dementia-related changes early, and identified an instrument potentially applicable to adults with an intellectual disability. This instrument could also be used for the cognitive assessment provision of the annual wellness visit under the Affordable Care Act. The report recommends adoption of such an instrument by providers and regulatory authorities to identify those adults at-risk due to early signs of mild cognitive impairment or dementia.

Dr. Matthew P. Janicki, of the University of Illinois at Chicago, the other co-chair, said that "generally there is little information on this issue and much needs to be done to make people more aware of it." He noted that the Group recommended an intensified community education effort to enhance the capabilities of staff, clinicians, community providers, and administrators. Further, education is needed to raise awareness of dementia and how it affects adults with an intellectual disability among families and other caregivers.

The report notes that dementia has a devastating impact on all people -- including people with an intellectual disability and their friends, families and the staff who may be involved with them as advocates and caregivers. The National Task Group wants its report to contribute to the work of the federal Advisory Council on Alzheimer's Research, Care, and Services. Plans are also in place to produce educational materials, develop guidelines for care, and hold training sessions across the country.

The report and its 'Action Plan' are available at these websites: http://www.aadmd.org/ntg and http://www.rrtcadd.org.

'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports [Available as a separate link: http://aspe.hhs.gov/daltcp/napa/Comments/cmtach74.pdf]

On behalf of the Alzheimer's Association, the leading voluntary health organization in Alzheimer's care, support and research, thank you for the opportunity to comment on the U.S. Department of Health and Human Services "Draft Framework for the National Plan to Address Alzheimer's Disease." Please let us know if you have any additional questions. Thank you again.

Alzheimer's Association comments on the Draft Framework for the National Plan to Address Alzheimer's Disease

Thank you for the opportunity to comment on the U.S. Department of Health and Human Services "Draft Framework for the National Plan to Address Alzheimer's Disease." The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research. Today, there are an estimated 5.4 million Americans with Alzheimer's disease and almost 15 million unpaid caregivers. Alzheimer's is the 6th leading cause of death and the only cause of death among the top ten in America without a way to prevent, cure, or even slow its progression. Caring for people with this heartbreaking disease cost Medicare and Medicaid an estimated $130 billion last year.

Barring the development of medical breakthroughs to prevent or treat the disease, the future will be even bleaker. By 2050, as many as 16 million Americans will have the disease, and the cost of care will surpass $1 trillion annually (in today's dollars). However, if through the National Plan the federal government makes a meaningful commitment to finding a treatment and cure, the long-term payoff will be substantial. For example, a treatment that delayed onset of the disease by five years, similar to the effect of anti-cholesterol drugs on preventing heart disease, would cut government spending on caring for those with Alzheimer's by nearly half in 2050. This is both the challenge and promise of the National Alzheimer's Project Act and the development of a National Plan to Address Alzheimer's Disease.

Alzheimer's cannot wait. Individuals living with this devastating disease and their families cannot wait. Strengthening the financial underpinnings of Medicare and Medicaid cannot wait. We are at a critical moment -- a strategic plan is within our grasp. The Draft Framework sets that plan in motion. But while this framework is extensive in scope, there are a number of items that need to be addressed. Those items are raised in this letter.

Having reviewed this Draft Framework, however, the leading comment of the Alzheimer's Association is that the Draft Framework should be adjusted to facilitate the Department's incorporation of the recommendations of the three Advisory Council subcommittees, as presented at the January 17, 2012 Advisory Council meeting, into the National Alzheimer's Plan. These recommendations represent a bold, transformative, and comprehensive way to address the Alzheimer's crisis -- exactly what is needed in a National Alzheimer's Plan.

General Comments

We believe the firm deadline of 2025 in this initial framework is bold and transformative. While intermediary milestones may be needed, the Department is to be commended for including, for the first time, a clear, accountable goal for the availability of urgently needed treatment advances.

Second, the draft includes often neglected, but important, issues such as public health surveillance and comprehensive data collection, which are crucial to understanding the burden of the disease and assessing ways to reduce its impact.

Third, there is a strong section on expanding and strengthening the health care workforce. Without an adequate number of health care providers who are properly trained, individuals living with Alzheimer's will not have access to coordinated, quality care in all health care settings, including acute care, long-term care, and home care settings.

These are three leading examples of the Draft Framework's many strengths. However, before a draft plan is released, several gaps must be addressed to fulfill the promise of a comprehensive and bold National Alzheimer's Plan. The largest omissions in the Draft Framework are a clear call for adequate and sustainable funding for Alzheimer's disease research, and for the resources required to implement the national plan. A strategy without funds to implement it or resources to drive research breakthroughs will not achieve the goals laid out in the Draft Framework by 2025.

Another shortcoming is that there is little mention of the Food and Drug Administration (FDA) beyond general references to increasing clinical trial participation and expediting the development and use of biomarkers, and there is no mention of ways to spur development of treatments or other regulatory science efforts. The draft plan must create opportunities for multi-sector partnerships to stimulate new ideas and innovations, and the FDA must play a pivotal role in the development and translation of these new treatments.

A final overarching weakness in the Draft Framework is the limited emphasis on educating affected individuals, their families, and their caregivers about Alzheimer's. The importance of understanding Alzheimer's disease, particularly in context of other health conditions, should be emphasized, as should educating individuals and their families about the support services available to them and the need for advance planning. Similarly, there is no mention of how to improve documentation of a diagnosis, which is crucial to enabling care coordination among health care providers. A formal and documented diagnosis allows individuals to participate in their own care planning, better manage other chronic conditions, participate in clinical trials, and ultimately alleviate the burden on themselves and their loved ones.

Specific Comments

Following are specific comments on the various proposed goals and strategies as outlined in the Draft Framework.

Goal 1: Prevent and Effectively Treat Alzheimer's Disease by 2025
As previously stated, establishing a firm deadline of 2025 is bold and transformative. However, there is no mention of funding for Alzheimer's research or what will be required to implement the National Alzheimer's Plan. Without this commitment to adequate research funding, 2025 risks appearing more a hope than a goal.

Strategy 1.A: Identify Research Priorities and Milestones
The Alzheimer's Association believes that Alzheimer's research needs to be a goal of the entire National Institutes of Health (NIH), not just the National Institute on Aging (NIA). NIA is underfunded, so prioritizing funding within NIA does not hold the potential to sufficiently elevate Alzheimer's research. Making Alzheimer's research a priority of the entire NIH is also important to help ensure coordination among the 27 Institutes and Centers, 23 of which are currently funding Alzheimer's research. 3

Strategy 1.B: Enhance Scientific Research Aimed at Preventing and Treating Alzheimer's Disease
The phrase "...will continue to aggressively conduct clinical trials..." should be characterized relative to the scale of the crisis and, by that measure, we strongly disagree that current levels warrant a description of "aggressive" -- aggressive is what we need, not what we have.

When examining how to manage and treat symptoms of Alzheimer's, research should be more closely linked to quality measures. Moreover, novel ways to conduct and encourage prevention trials and trials on agents that are not patentable should be included. This strategy must also address information protection, patents, and technology transfer in academic institutions.

Other than increasing clinical trial participation or expediting the development and use of biomarkers, the Draft Framework does not mention the FDA. FDA is a critical piece to the puzzle and is a necessary player in addressing ways to provide incentives that spur development of treatments or other regulatory science efforts, including biomarkers and critical scientific methods and tools.

Strategy 1.C: Accelerate Efforts to Identify Early and Presymptomatic Stages of Alzheimer's Disease
With regard to advances in imaging and other technologies that may enable an earlier diagnosis of Alzheimer's disease in clinical settings, the coverage determinations and reimbursement hurdles associated with accessing these new technologies are not addressed in the Draft Framework. In addition, longitudinal trials, which were explicitly endorsed during the 2010 NIH State of the Science Conference, are not addressed but should be in the Draft Framework.

Strategy 1.D: Coordinate Research with International Public and Private Entities
The Secretary of Health and Human Services, the Secretary of Veterans Affairs, and the Secretary of Defense should work together to reduce barriers to working with private entities on agreed upon national strategic goals in Alzheimer's research. The federal government must increase its engagement with the private sector to move science forward as quickly as possible. Public-private partnerships present a key opportunity to leverage both public and private resources in this scarce fiscal environment. Government funders of Alzheimer's science should make available contracts, grants, or cooperative agreements to facilitate new and innovative partnerships between public and private entities, which may include private or public research institutions, institutions of higher education, medical centers, biotechnology companies, pharmaceutical companies, disease advocacy organizations, patient advocacy organizations, or academic research institutions.

We believe that effectively achieving this strategy requires a single, dedicated individual or office to oversee and manage this coordination, particularly internationally. This office could also be charged with coordinating all Alzheimer's-related efforts across the federal government, including care and support, thereby fulfilling the charge of the National Alzheimer's Project Act to ensure "coordination of Alzheimer's research and services across all Federal agencies."

Goal 2: Enhance Care Quality and Efficiency

Strategy 2.A: Build a Workforce with the Skills to Provide High-Quality Care
We strongly support a robust and well-educated workforce as an essential component to providing high-quality care to those with Alzheimer's disease. An adequate number of health care providers who are properly trained will help ensure that people with Alzheimer's disease have access to coordinated, quality care and will ultimately drive us toward a dementia-capable health care system. Funding and incentives for individuals interested in pursuing careers in geriatric specialties should be expanded. 4

Strategy 2.B: Ensure Timely and Accurate Diagnosis
To diagnose an individual with Alzheimer's disease, cognitive impairment must first be detected in a clinical setting. The Medicare Annual Wellness Visit will help on this front, but we recommend including a strategy on enhancing detection separate from the strategy for diagnosis. While the Draft Framework refers to some of the issues involved in detecting cognitive impairment -- namely, assessment tools -- we believe it is a mistake to conflate the issues of detection and diagnosis in a single strategy. And, in fact, this strategy could be read as confusing the distinct processes of detection and diagnostic evaluation for Alzheimer's disease.

Furthermore, the strategy is silent on educating health care professionals, particularly physicians, on the value of an early diagnosis. Too often, many physicians do not see or understand the value of an early diagnosis and therefore fail to diagnose and/or document Alzheimer's disease. Even among willing physicians, their lack of training in the use of assessment tools and methods to encourage follow-up often delay detection of cognitive impairment and further diagnostic evaluations.

Strategy 2.C: Educate and Support Patients and Families Upon Diagnosis
The education component within this strategy appears limited. CMS should issue guidance to providers outlining information that should be discussed after a diagnosis, including referrals to existing community supports and services. It is also important that patient education emphasize the importance of understanding Alzheimer's disease in the context of other health conditions. Moreover, family consultation with appropriately-trained health care professionals should be provided and reimbursed under Medicare, even when the patient is not present, so families do not feel abandoned after a diagnosis.

Strategy 2.D: Identify and Implement High-Quality Dementia Care Guidelines and Measures Across Care Settings
We believe this strategy is vitally important, particularly with regard to the measurement of quality indicators. Once appropriate quality indicators are identified and validated, efforts should be undertaken to integrate them into the health care system.

Strategy 2.E: Ensure that People with Alzheimer's Disease Experience Safe and Effective Transitions Between Care Settings and Systems
There is no mention of the use of electronic medical records or the importance of making sure a diagnosis is actually included in a medical record. This is especially important for safe and effective care transitions. Prior to any care transition, an individual should have a documented diagnosis in his or her medical record, as well as a list of relevant medications. In addition, acute care settings should implement Alzheimer's disease training for all health care practitioners.

Strategy 2.F: Advance Coordinated and Integrated Health and Long-Term Care Services and Supports for Individuals Living with Alzheimer's Disease
Alzheimer's disease is progressive and terminal and therefore general research on care coordination may not address the unique needs of individuals with Alzheimer's disease or their caregivers. Additional research should be conducted specifically on care coordination for this population.

Strategy 2.G: Improve Care for Populations Disproportionally Affected by Alzheimer's Disease
A National Plan must identify the specific action steps to be undertaken to improve the care of those disproportionately affected by Alzheimer's disease. We appreciate the acknowledgement that people with younger-onset Alzheimer's disease, racial and ethnic minorities, and people with intellectual disabilities are disproportionally burdened by Alzheimer's and related dementias. However, we are looking forward to reviewing specific plans that will meaningfully address the challenges faced by these populations. 5

Goal 3: Expand Patient and Family Support

Strategy 3.B: Enable Family Caregivers to Continue to Provide Care While Maintaining Their Own Health and Well-Being
During the course of the Alzheimer's Association's public input sessions last summer, this was a consistent theme, and we commend its inclusion in the Draft Framework. A National Alzheimer's Plan provides a unique and important opportunity to widely deploy effective, evidenced-based strategies to help family caregivers.

Strategy 3.C: Assist Families in Planning for Future Long-Term Care Needs
The intent of this strategy is unclear. If the goal is to encourage the purchase of long-term care insurance -- or at least educate families about the option of long-term care insurance -- it is important to realize that the private long-term care insurance market presents particular challenges to those with Alzheimer's disease. It may not be a viable option, and families should be made aware of the potential issues.

In addition, while planning for long-term care is important, there are other future needs for which a diagnosed individual needs to plan -- planning regarding finances, driving and safety, advance directives, and end-of-life care. The Draft Framework should refer to the importance of advance planning education once someone receives an Alzheimer's diagnosis.

Strategy 3.D: Maintain the Dignity, Safety, and Rights of People with Alzheimer's Disease
As indicated in Strategy 2A, all health care practitioners should have proper dementia training, which should help mitigate abuse. In addition to health care practitioners, training efforts should include first responders.

The National Plan must acknowledge the large number of individuals with Alzheimer's who live alone -- many of whom do not even have an identifiable caregiver. In maintaining the dignity, safety, and rights of those with the disease, special attention must be given to this population. This includes the issue of self-neglect, which is not addressed in the Draft Framework.

State Adult Protective Services (APS) agencies are over-burdened and understaffed, resulting in a limited ability to provide any support except in the most dire circumstances. The Draft Framework does not address the need for additional resources for APS agencies so that they can adequately protect the safety and rights of individuals with Alzheimer's.

Goal 4: Enhance Public Awareness and Engagement

Strategy 4.A: Educate the Public about Alzheimer's Disease
As indicated in Strategy 2G, education campaigns must be language-specific and culturally appropriate.

Goal 5: Improve Data to Track Progress

Strategy 5.A: Enhance HHS' Ability to Track Progress
Obtaining a more definitive picture of Alzheimer's, cognitive impairment, and related caregiving burdens is essential to any successful strategy to combat the disease. Public health surveillance and comprehensive data collection will not only assist the federal government in addressing policy questions and planning new initiatives, they will provide the research, caregiving, and public health communities a better understanding of people with cognitive impairment and Alzheimer's, and identify opportunities for reducing the impact of the disease at all levels of government. 6 At a minimum, this should include state-by-state public health surveillance both on cognitive impairment and caregiver burden, preferably through the Behavioral Risk Factor Surveillance System, coordinated by the Centers for Disease Control and Prevention (CDC). Moreover, this strategy should also include improving existing federal surveys such as the Medical Expenditure Panel Survey and the National Health Interview Survey so that they more adequately capture information about those with Alzheimer's and other dementias.

Strategy 5.B: Monitor Progress on the National Plan
Although sometimes overlooked, improving data to track progress is critical, and we commend its inclusion in the Draft Framework. This critical information should be publically available, or at least available to the Advisory Council. In monitoring progress, it would be useful to have de-identified data that corresponds to the disease stage (early stage through end-of-life) to identify areas for improvement in care and services.

Conclusion

The Draft Framework provides a good foundation for a National Alzheimer's Plan. But much work needs to be done to fulfill the promise of a detailed National Alzheimer's Plan that is urgent, transformational, achievable and accountable. The recommendations listed above, combined with the recommendations of the Advisory Council subcommittees, would result in just such a National Alzheimer's Plan.

We appreciate the opportunity to comment on the Draft Framework for the National Plan to Address Alzheimer's Disease. Please contact us if you wish to discuss any of these issues further.

In 2008, I was diagnosed with Alzheimer's disease after struggling to get a diagnosis since my first symptoms at age 39. As one of 5.4 million people living with this debilitating disease, I currently live every day to make a difference. In fact, I am now an advocate for the education and eradication of this disease. While I only had an opportunity to watch it the second day of the NAPA meeting last month, I found it very interesting, yet my memory had already started to fade away. Some of my issues that I came up with are.

The 2020 date should be the date we shoot for as a cure date for Alzheimer's. 2025, should be the date that we eliminated it completely from all who have it, or at least stopped thee progression at their given state. People react to dates and when they see date so far out they will not even give it a second though, that is human nature. I use to see that with all the project I ever ran. While sometimes a date may be unrealistically, it is better to use one that is sooner than further away, keep the momentum going. That is what they also teach in project management.

I could see and hear the same frustration as I had from many of the committee members (both the non and federal) related to the date. Let's do what is right for those have been overlooked for so many years already. Use your heart to make the right decision. I have had the opportunity to speak to some of you, and you are not even sure why it's taken so long to get to this point. Let make this meeting count and make a statement to the World, that you do care about Alzheimer Patients and the injustice will end now.

I also feel the two days was kind of short and the original time given seemed to be cut short based on what needed to be talked about -- that's my viewpoint as an outsider.

It would be nice to have dial in conference number, so the public can also be included to make some statements.

While public can go to the meeting if arranged in advance, I would like to see a separate call in line for people who are invited in advance by phone, into the same conference call #. Just with priority over the drop in callers people.

While I think the use of metrics is great, it should not slow progress down at all. I would even recommend bringing in a master six sigma person who would be able to show how the spending of money now, can lead to the greater saving and man hours in both the health system and government from a short and long-term perspective. The long term savings numbers would blow their minds and they can relate to those expenditures.

As far as the 2 million needed, to fund this, which I still consider that amount to small and should also be raised, If no additional funding exist, then we should cut back from some of the other parts of the pie related to other high priority diseases and make it much fairer.

Everywhere you turn you see something related to Cancer and HIV. Our government contributes 18.7 percent of the NIH research budget to cancer, 9.9% to HIV, and just 1.4% to Alzheimer's. Why so little for Alzheimer's? There are many more people living with Alzheimer's than HIV, yet it receives much less funding.

We need to stop the disparity, or what I almost consider a form of discrimination.

The attached document is a summary of my public comments made on Jan 17, 2012 at the HHS and Advisory Council on Alzheimer's Research, Care, Services meetings to develop the national Alzheimer's plan. Thank you for the opportunity to publically voice my input at the meeting during the public input session. It was a great opportunity to meet many individuals from both the federal and private sectors who are dedicated. compassionate, and committed to fight against Alzheimer's disease through a national plan of action.

The attached document includes my specific public comments as well a few additional input comments.

Thank you for the opportunity to attend the meetings and I look forward to attending in the future as well. The work of HHS and the Advisory Council is to be highly commended.

The following is a summary of the comments I provided on January 17, 2012 during the Public Input session of the Advisory Council on Alzheimer's Research, Care, and Services meeting. In addition, I have also included other comments based on discussions heard over the 17-18 Jan meeting.

As a sibling, caregiver, registered nurse, health care executive, and advocate to improve the care and support for individuals with intellectual developmental disabilities and Alzheimer's disease (AD) and their families and caregivers, I sincerely appreciate the opportunity to provide the following comments for the Council's consideration and action. The work and commitment of the Health and Human Services staff and the Advisory Council in developing a national plan to address Alzheimer's disease is to be commended.

My youngest brother, Carl Srsic, who was born with Down's syndrome, died from the advanced stages and complications of Alzheimer's disease at the age of 50 years old on October 13, 2010. My experiences in caring and coordinating my brother's care first with my parents and then his group home staff, parallel the issues identified by the thousands of family members and caregivers who provided input for the National Alzheimer's Plan. The issues however, are compounded for individuals with intellectual developmental disabilities. Therefore, the National Plan must address the needs of these individuals. I will address my comments in general and within the framework of the national Alzheimer's plan framework presented on 17 Jan 2012.

• In general:
  • Funding must be prioritized to address the devastating and growing impact of Alzheimer's disease particular in the baby boomer's general and for caregivers, particularly family caregivers. In the past, this nation prioritized funding to combat heart disease, diabetes, cancer, and HIV/AIDs. The time is now to prioritize funding to combat Alzheimer's disease. We cannot afford to delay.
  • I also encourage a balance between research and building evidence-based prevention, slowed progression, and ultimately effective treatment and cure for Alzheimer's disease with meeting the current day to day needs and support of individuals, families, and caregivers.
  • Fragmentation and 'silos' must be eliminated so that collaboration and coordination can provide the synergy needed to address effective action and outcomes.
  • One size does not fit all in terms of prevention, screening, treatment, and ultimately a cure. For instance, individuals with intellectual disabilities and Alzheimer's have confounding cognitive and other medical conditions that can make screening and assessment challenging and they react differently to medications and other treatment modalities. Therefore, individuals with intellectual developmental disabilities must be considered as a special population affected by Alzheimer's disease.
  • I applaud and encourage applications to the Center for Medicare and Medicaid Innovation (CMMI) to develop new guidelines and creative care management and service support programs.
  • At some point, Alzheimer's disease must be incorporated into the National Quality Strategy. Much discussion occurred about the need for data and metrics - process and outcome success measures must be developed to measure success. In addition, as CMS developed evidence-based core measures for heart failure, community acquired pneumonia, etc. , so too, there should be core measures developed for care management and service support for Alzheimer's disease.
  • The Center to Advance Palliative Care should be consulted to collaborate on palliative care guidelines for individuals with AD.
• Goal 1 - Prevent and Effectively Treat AD by 2025: Individuals with intellectual developmental disabilities (IDD) must be included as a population within and specific to all the goals of the National Alzheimer's Plan. Research priorities must include studies specifically focused on individuals with IDD as the prevention, screening, and treatment methods may not be applicable as in the general population. To even gather an adequate sample of individuals for potential research study samples, more effective means of identifying individuals with IDD must be developed and databases established locally, regionally, and nationally. Individuals with IDD are not a socioeconomic or race or ethnic population that is commonly associated with health care disparity groups; they are a special population in and of themselves that must be recognized and identified as such in the national plan.
• Goal 2 - Enhance Care Quality and Efficiency: While there are health care providers who are limited in their knowledge and plan of care about AD in the general population, there are even less providers who have the knowledge and skill to manage individuals with both IDD and AD. Finding a qualified, competent, and compassionate provider to guide and coordinate care management is difficult, for individuals who even know and work in the health care system. Current centers for the aging may not have the knowledge and skill for managing individuals with IDD and AD and centers for those with developmental disabilities many times do not have the knowledge and skill for managing individuals in various stages of aging and AD. Support to family members and caregivers is crucial -- as these individuals have had to deal with multiple challenges in caring for a son, daughter, or sibling from birth and then that caregiving becomes even more overwhelming when AD develops. Evidence-based clinical practice guidelines must address the multiple needs of individuals with IDD and AD. Aging in place, such as in group home settings with augmented services and supports must be explored as a cost -effective alternative to nursing homes. Consistency, familiarity, and minimizing transition are key to the overall well-being for individuals with IDD and those elements of care are even more relevant for an individual with IDD and AD. With the advent of ACOs and medical homes, models of care coordination management and transition within types of care should be developed to include individuals with IDD and AD. These new approaches to care center on the patient in a truly more holistic approach to care. As in many approaches used for management of other diseases, such as multidisciplinary care coordination or the use of patient navigators or specific case managers, so too should such strategies be considered for individuals with AD.
• Goal 3 - Expand Patient and Family Support: Many individuals with disabilities still live at home with aging parents who also may be developing or have Alzheimer's disease. Families may not be within any support system to specifically help them manage and cope with AD in addition to IDD. They need information about AD, resources, safety, coordination of care, respite care, end of life care, etc. Community supports and easy to find information about resources must be developed and/or incorporated into services for families. It is not just a matter of disseminating information - reaching individuals, helping them know how to access resources from a central location rather than fragmented searching is critical.
• Goal 4 - Enhance Public Awareness and Engagement: Parents of individuals with IDD need to be alerted to potential early onset Alzheimer's. Caregivers, particularly those in group homes, day programs, etc must have required training in not only IDD but also aging and AD care management. The state Developmental Disability Services must also incorporate timely resources to support individuals, families, and caregivers specifically addressing the needs of those with IDD and AD. The need for services (e.g., increased staffing, environmental safety measures, etc) must be available when there are acute needs and not delay care and services due to bureaucratic processes. Collaboration among agencies and services must develop synergy and cost-effective strategies rather than having 'silo' services that are limited, fragment, or overlap.
• Goal 5 - Improve Data to Track Progress: Data about individuals with IDD is often lacking and not uniformly centralized which compounds accurate data collection for those with IDD and AD. Tracking for high 'at-risk' populations with IDD and progress in care management is crucial for effective and efficient resourcing.

While I realize there are many competing priorities and limited funding, the Plan must address the needs of all people with Alzheimer's disease/ related dementias. Our nation made it a health priority to address other major diseases in the past such as cardiac/stroke, diabetes, cancer, and HIV/AIDS with remarkable advances. Action to prevent and treat Alzheimer's disease must be now. Thank you for the opportunity to provide comments for your consideration into the National Alzheimer's Plan.

I am hopeful that you will see that the attachment is included in the summary of input for the month of December 2011. I look forward to attending the January meeting of the NAPA Advisory Council.

My name is Mary Hogan. I am one of 8 older siblings of the late Bill Hogan. I submit this request to you today, December 30, 2011, in honor of my brother and hopefully for other families who are facing the challenges related to Down syndrome and Alzheimer's disease.

In January 2006, at the age of 45, Bill was diagnosed with dementia, Alzheimer's type. Over the course of the next 4 years his journey became far more complex. He experienced a very rapid deterioration during the last 13 months of his life and died of chronic aspiration pneumonia on February 25, 2010, two months shy of his 50th birthday. My brother was a member of a subgroup of individuals with Down syndrome that develop AD early, decline rapidly and face a premature death. This has been a great loss for our family and Bill's community at large.

Extraordinary efforts to advocate for Bill were required during the final years of his life. Active advocacy was sometimes lonely and often a frustrating process. Obstacles for advocacy increased significantly after Bill's diagnosis of Alzheimer's disease. Our experience is most likely replicated in other families as well.

I write to you today to request the following considerations for the National Alzheimer Project Act Advisory Council on Alzheimer's Research, Care and Services:

1. People with Intellectual Disabilities, and their caregivers, should be included in future planning with the same access to appropriate care and support as individuals in the general population. The growing incidence of Alzheimer's disease will be mirrored in the ID population, most especially with individuals with DS who have a far greater likelihood of developing this insidious disease by age 60. Inclusion in any future planning will be ensure that this often marginalized group will have access to appropriate care across their lifetime.
2. Most often individuals with ID, including those with DS, are cared for by their families well into their adult lives, often by aging family members. Recognition of the need to enhance support for this group of caregivers will be critical in the future. I ask that NAPA Advisory Council recognize the need for improved dementia care for individuals with intellectual disabilities in conjunction with increased support for family members as caregivers and advocates.
3. Since individuals with Down syndrome are at increased risk for developing Alzheimer's disease, families, caregivers, agencies, medical providers and researchers will need to work together to maintain their "quality of life". Families facing DS/AD need access to information about both disease process and advocacy. I suggest a review of what has been produced by Alzheimer's Australia and the Australian government as a sample of what might be provided.
4. A consortium of providers (i.e. Alzheimer's Association, Health and Human Services, the Administration on Developmental Disabilities or Administration on Aging, UCEDD, families, and advocacy organizations, etc.) should disseminate best practice guidelines related to adults with intellectual disabilities and dementia. This will include training and education for care providers across a multitude of settings. I suggest careful consideration of the forthcoming document produced by the National Task Group on Intellectual Disabilities and Dementia Practices.

I am hopeful that in this day of limited funding the needs of all people with Alzheimer's disease will be addressed creatively and with the greatest of compassion and that the National Alzheimer Project Act Advisory Council will provide leadership and direction for the future.

I thank you for the considering this request.

My name is Mary Hogan and I am interested in attending the January 2012 NAPA Advisory Council meeting. I am wondering if this is possible.

I was a guardian/caregiver for my 49 year old brother who had down syndrome and died of complications of Alz. disease. I have a vested interest in the Council activities and national plan and have worked with Matt Janicki on the National Task Group on Intellectual Disabilities and Dementia Practices. Please see the attached article and you will understand my commitment to this important cause.

Hopefully I will have an opportunity to be present for this important meeting.

Thank you for your consideration.