ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Public Comments on Advisory Council Meeting, January 2012
List of Comments
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PLEASE NOTE: The Public Comments included here are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in this project.
S. Keller | 03-22-2012
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:
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.
M. Janicki | 02-16-2012
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.
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.
'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]
R. Conant | 02-08-2012
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.
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.
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
Strategy 1.A: Identify Research Priorities and Milestones
Strategy 1.B: Enhance Scientific Research Aimed at Preventing and Treating Alzheimer's Disease
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
Strategy 1.D: Coordinate Research with International Public and Private Entities
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
Strategy 2.B: Ensure Timely and Accurate Diagnosis
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
Strategy 2.D: Identify and Implement High-Quality Dementia Care Guidelines and Measures Across Care Settings
Strategy 2.E: Ensure that People with Alzheimer's Disease Experience Safe and Effective Transitions Between Care Settings and Systems
Strategy 2.F: Advance Coordinated and Integrated Health and Long-Term Care Services and Supports for Individuals Living with Alzheimer's Disease
Strategy 2.G: Improve Care for Populations Disproportionally Affected by Alzheimer's Disease
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
Strategy 3.C: Assist Families in Planning for Future Long-Term Care Needs
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
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
Goal 5: Improve Data to Track Progress
Strategy 5.A: Enhance HHS' Ability to Track Progress
Strategy 5.B: Monitor Progress on the National Plan
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.
M. Ellenbogen | 02-03-2012
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.
K. Srsic-Stoehr | 01-23-2012
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.
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.
M. Hogan | 12-30-2011
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:
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.
M. Hogan | 12-05-2011
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.
|Down Syndrome News, Vol. 34, 2011, #2 [Available as a separate link: http://aspe.hhs.gov/daltcp/napa/Comments/cmtach25.pdf]|