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Table of Contents
- Comments for NAPA Council Meeting of October 26th (M. Janicki; Oct 2015)
- October 26 Meeting Attendance (M. Ellenbogen; Oct 2015)
- October 26 Meeting Attendance (E. Sokol; Oct 2015)
- Public Comment for October 26 NAPA Advisory Council Meeting (I. Kremer; Oct 2015)
- Public Comments from AFTD (M. Sharp; Oct 2015)
- RSVP for 10/26 Meeting (G. Whiting; Oct 2015)
- Sorry It's A Little Late (D. DuVall; Oct 2015)
- Trip to Washington (T. Buckley; Oct 2015)
- Is Age-Related Excess Brain Iron Causing Alzheimer's? (C. Rodgers; Jul 2015)
- July 27 Meeting Attendance (I. Kremer; Jul 2015)
- July 27 Meeting Attendance (M. Sterling; Jul 2015)
- July 27 Meeting Attendance (G. Whiting; Jul 2015)
- Matt Sharp's Comments (M. Sharp; Jul 2015)
- Michael Ellenbogen Speech for the July 27 Advisory Council Meeting (M. Ellenbogen; Jul 2015)
- Monday's Presentation (M. Hogan; Jul 2015)
- NAPA Comment (S. Peschin; Jul 2015)
- NAPCA (W. Lum; Jul 2015)
- Public Comments (D. DuVall; Jul 2015)
- Public Comments (K. O'Donnell; Jul 2015)
- Public Comments for July 27 (K. Love; Jul 2015)
- April 28 Advisory Council: Public Comment by Jeffrey Imm (J. Imm; Apr 2015)
- April 28th Meeting Attendance (E. Long; Apr 2015)
- Comments on Recommendations from IOM Advanced Dementia Expert Panel Meetings (S. Denny; Feb 2015)
- New Video (M. Ellenbogen; Feb 2015)
- What Are We Waiting For (M. Ellenbogen; Feb 2015)
- Alzheimer's Disease (nameless; Jan 2015)
- Comments to NAPA Advisory Board (E. Sokol; Jan 2015)
- January 26 Meeting Attendance (M. Lipsitt; Jan 2015)
- Public Comment for the Record (M. Lipsitt; Jan 2015)
- Response for NAPA Meeting January 26 (M. Ellenbogen; Jan 2015)
- Won't Be Able to Attend (S. Peschin; Jan 2015)
OCTOBER 2015 COMMENTS
DATE: October 23, 2015
SUBJECT: Trip to Washington
Please know your incredible commitment to families with Down syndrome in Flirida are making an enormous difference-have a wonderful weekend
Letter of support to: ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE AND SERVICE
I am the proud mother of Mr. DavidTringo. David is at your meeting today in person representing our family. It is hard to believe that 42 years ago I had David as a 20 year old young lady and was forced immediately to make a decision the Doctor posed; "we can have Willow Brook here in ten minutes-do you want to keep the baby?" I simply asked if he can cry when he is hungry and love me? The doctor said yes; and we went home.
February 3, 2014 Federal NAPA Advisory Committee Approves Recommendation 13
I am writing to thank all of you for your courageous decision on February 3, 2014 approving Recommendation 13:
HHS AND STATE LEAD ENTITIES SHOULD PARTNERTO ASSURE ACCESS TO THE EULL ARRAY OE LTSS FOR SPECIFIC POPULATIONS OE PEOPLE WITH AD INCLUDING YOUNGER PEOPLE.NON-TRADITIONAL FAMILIES.PEOPLE WITH INTELLECTUALDISABILITIES. SUCH AS DOWN SYNDROME. AND RACIAL AND ETHNIC MINORITIES WHO ARE AT INCREASED RISK OE ACQUIRING AD.
MY LIEELONC BURDEN OE CARE
For the past 42 years, I have not taken a vacation feeling it is my responsibility to always be by David's side providing his lifelong care. The early onset of dementia is almost too much to endure after providing lifelong care with fierce advocacy and now the accelerated pace of AD with Down syndrome. Preparing for this late battle with this insidious disease in David's life is especially painful since I just buried my Mom and Dad with Alzheimer's disease. I noticed the similar symptoms with David similar to my Parents but Doctors could not confirm the symptoms.
Erin Long is simply the best
Our Lucan us Center executive director traveled to Washington D.C. on February 3, 2014 and provided public testimony with National Chair Dr. Janicki. Upon returningto Florida, we were all very excited about the promising news to prepare a high quality dementia capable system for our children that was centered on our family. Our Florida Dementia Capable Model gives the funding to dementia care coordinators that create the dementia care plan together with the family.
During our newly created caregiver support groups focused on the death of our child Dr. Buckley kept mentioning Ms. Erin Long and Kate Gordon guiding our specialized dementia capable system. Dr. Buckley would comment on their incredible knowledge, passion and always speaking and seeking our solutions and not simply restating the problem or their solutions within the aging world.
On April 30, 2015 Ms. Erin Long came to Florida and attended the NTG/Lucanus unveiling of the NTG formal curriculum. Ms. Erin Long is an incredible young lady with a heart of gold that spoke of her family member experiencing Alzheimer's disease. She listened to aging caregivers and one in particular sticks in my mind. A father told of scolding his daughter and being so frustrated after APO and her behavior specialist said she needs to control her behavior and the parents need to set stricter rules.
The Father then said that everything she is doing is consistent with her recent diagnosis Alzheimer's disease and now he feels so guilty listening to behavior specialist knowing his daughter had no control of the behavior symptoms. Ms. Erin Long has taken our hopes and dreams for families to create person/family specialized dementia plans and made this a reality that all families deserve. We all speak of Erin and Kate often and acknowledge with a smile they are simply the best and listened to our every wish.
Your support of the Lucan us Center has changed the lives for thousands. David is fully engaged in all Healthy Brain activities and both David and I just sang together as Sonny and Cher in a local talent search. I truly believe David going to Lucan us and adherence to Healthy Brain principles is the reason he is so sharp and active today.
Thank you for creating Alzheimer's respite and now my husband and I took our first vacation in over 42 years to Charleston, SC. David had only vacationed with my husband and I for the past 42 years. David chose to go with his other family, the Buckley's. Tom and Kathy took David to New York City for 5 days and then to Tallahassee advocatingfor families with Down syndrome and Alzheimer's disease. David had a wonderful time with his other "Mom and Dad' and really enjoyed advocating for others in need.
As a Mom, I could never thank you for all you have done for David and our family facing thisinsidious disease. It is hard to believe that just a few months ago our hopes and dreams were crushed when the local Alzheimer's Disability Resource Center chose not to provide Alzheimer's supports to people with Down syndrome after repeated request. The Lucanus Center and family's partnered with Florida SenatorSobel to sponsor the Florida legislature creating the Alzheimer's pilot for Intellectual Disabilities and Down syndrome. The Florida legislature 2015 appropriated $100,000 to the Lucanus center to create the Florida Alzheimer's waiver for intellectual disabilities and specifically Down syndrome.
On behalf of all families in South Florida with a family member with Down syndrome and Alzheimer's disease, we are grateful for your leadership and your incredible ambassador of hope Erin Long. We vow to continue working endless hours until all Americans with Down syndrome and Alzheimer's along with their aging care giver are provided with high quality person centered dementia services and supports.
DiPasquale & Associates
Ft. Lauderdale, FL
DATE: October 21, 2015
SUBJECT: October 26 Meeting Attendance
- In conjunction with November being National Alzheimer's Awareness Month, AFA will be holding National Memory Screening Week from November 1st - November 7th.
- NMSW grew out of an earlier AFA initiative, National Memory Screening Day.
- During NMSW, sites across the U.S. offer free, confidential memory screenings to the public and distribute educational materials about memory concerns, dementia, caregiving and successful aging.
- A memory screening is a good conversation starter about memory concerns and brain health.
- Memory screenings are a significant first step toward detection of memory problems.
- Some memory problems can be readily treated, such are those caused by vitamin deficiencies or thyroid problems. Other memory problems may result from causes that are not currently reversible, such as Alzheimer's disease.
- Memory screenings, however, are not a diagnosis.
- Individuals who score below the normal threshold or who still have concerns about their memory are encouraged to follow up with their physician for a thorough evaluation.
- Moreover, all of the NMSW materials clearly emphasize that memory screenings are used as an indicator of whether a person might benefit from an extensive medical exam, but that they are not used to diagnose any illness or to replace an exam by a qualified healthcare professional.
- We encourage all listening to the NAPA meeting or anyone who has concerns about their memory to visit a memory screening site.
- More on NMSW can be found at: http://www.nationalmemoryscreening.org/.
Vice President, Public Policy
DATE: October 21, 2015
SUBJECT: Comments for NAPA Council meeting of October 26th
I am Matthew Janicki. Along with my colleague, Dr. Seth M. Keller, we are the Co-Chairs of the National Task Group on Intellectual Disabilities and Dementia Practices -- the "NTG". The NTG is a national group affiliated with the American Academy on Developmental Medicine and Dentistry and the University of Illinois's Center on Developmental Disabilities and Health. We are a membership organization supported by a range of formal and informal organizations and are made up of more than 250 members -- representing a broad range of interests focusing on advocating for solutions to issues faced by adults with intellectual disabilities affected by dementia -- and their families and formal caregivers. The mission of the NTG is multifaceted:
- Promote adoption of a specialized screening instrument and process.
- Define ways to assess 'cognitive impairment' as part of the annual wellness visit requirement under the Affordable Care Act.
- Develop practice guidelines for health and social care practitioners.
- Promote 'best practice' service models and systems of care that meet the unique needs of individuals with disabilities and their caregivers.
- Aid families by providing information and aids for coping with dementia and its challenges.
- Assist in adoptions of standards of care.
- Institute public education and training programs.
- Collaborate with national and regional organizations in public education, legislative and services development campaigns.
The NTG also has been working in concert with the activities emanating from the National Alzheimer's Project Act (NAPA) to raise awareness within the context of NAPA of the needs of adults with intellectual disabilities affected by dementia, and their families and other caregivers. Over the past five years we have watched the Council address a number of issues affecting people with dementia in general, and have been pleased by the actions cited in the Plan related to intellectual disabilities.
We appreciate the work of the Advisory Council and welcome those of you who are new members and trust you will help address the continued mission of the Council and its work as per the National Plan to Address Alzheimer's Disease. With this in mind we would like you to know why focal consideration needs to be given to people with intellectual disabilities.
- Even as most adults with intellectual disabilities are affected by forms of dementia at the same rate as other adults, adults with Down syndrome are at extreme high risk for dementia and most show early onset and compromised longevity.
- Early identification of signs and symptoms of cognitive impairment and dementia among adults with intellectual disability is an important first step in managing the course of the disease and providing quality care -- but typical assessment and diagnostic measures are not appropriate for this population due to variability of cognitive abilities.
- Many organizations providing community supports are still unprepared to adapt their care practices for older adults who are experiencing decline due to dementia and are in great need of technical assistance and access to creative models of community care.
- A large number of older-aged adults with intellectual disabilities live with their families and dementia-related impairments increase the challenges for, and oftentimes overwhelm the capacities of, older caregivers.
- An emerging model of dementia-capable' out-of-home care is the use of small community-based group homes and more technical assistance is needed to help providers adapt their care practices to make optimal use of this model.
- Supportive education, training, and services can help caregivers minimize fatigue and prevent burnout, and help maintain affected older adults in community settings, but more coordinative and specialized education and training is needed.
- Collaborative efforts at the local level, among disability, aging, and health providers can be effective in adapting services and supports to aid adults affected by dementia, as well as their caregivers -- and more emphasis on such collaboration is needed at the state and local level.
- With appropriate services, adults with intellectual disabilities affected by dementia can continue to have quality lives in community settings and because of the presence of such settings the unnecessary institutionalization of older adults simply because dementia is present can be avoided.
In today's remarks, on behalf of Dr. Keller, myself, and the NTG, we would like to offer our appreciation to the Council and its federal partners in their on-going efforts in recognizing the special needs of aging adults with intellectual disabilities affected by dementia and responding to the issues we have raised over the past five years. We are particularly appreciative of the results of the current series of awards by the Administration on Community Living for the Alzheimer's Disease Initiative grants and the special consideration given to intellectual disabilities, and to the Health Resources and Services Administration (HRSA) for its multiple awards under the Geriatric Workforce Enhancement Program (GWEP) and its willingness to draw from the NTG's national education curriculum on dementia and intellectual disabilities so as to assure that issues related to intellectual disabilities will be covered in the education and training to be undertaken by the awardees. We are also very appreciative of the National Institute of Health (NIH) for its efforts to seek out solutions leading to the early identification of Alzheimer's disease in people with Down syndrome and other intellectual disabilities via the funding of two major multi-site studies designed to identify biomarkers among adults with Down syndrome, as well as support other dementia-related research among persons with lifelong disabilities.
Lastly, the NTG would like to offer its support to the pending proposal to establish a dementia-related caregiving summit among the federal partners and non-governmental organizations, and looks forward to the inclusion of issues facing caregivers of aging people with intellectual disabilities affected by early, mid-stage, and advanced dementia.
We thank the Chair for this opportunity to address the Council and look forward to continued fruitful collaborative endeavors designed to achieve the goals of the National Plan by 2025.
Matthew P. Janicki, Ph.D. and Seth M. Keller, M.D.
National Task Group on Intellectual Disabilities and Dementia Practices
DATE: October 20, 2015
SUBJECT: Public comments from AFTD
Hello and thank you for another opportunity to address the council. On behalf of The Association for Frontotemporal Degeneration I would first like to thank the new council members for agreeing to serve as members of the advisory council and contributing their time and expertise to this important project. My name is Matthew Sharp, Program Manager for AFTD. For those who do not already know AFTD, we are the only national non-profit advocacy organization dedicated to frontotemporaldegeneration in all its various forms. AFTD's mission includes: raising public and professional awareness of FTD, supporting research to effectively treat and ultimately cure the disease and improving the quality of life for all people coping with the related dementia, FTD.
AFTD is sorely disappointed that none of the 5 nominees we proposed or supported to serve on the advisory council were selected. However we do appreciate that at least one new council member with expertise in a non-Alzheimer's dementia was selected and are glad Angela Taylor from LBDA has agreed to serve a term on the council. The secretary would be hard-pressed to find a more dedicated, knowledgeable and articulate advocate to represent Lewy Body and the other "related dementias" to advise and inform the National Plan.
Ms. Taylor's selection is an excellent step toward continued inclusion of the non-Alzheimer's dementias in the National Plan. Her perspective and expertise will continue to ensure that NAPA benefits all those affected by dementia.
While we congratulate the Secretary for adding such an excellent advocate to the council AFTD still recognizes the need for additional expertise and perspectives regarding the related dementias and especially FTD. As AFTD and Ms. Taylor suggested at prior council meetings adding a seat on the advisory council specifically for the related dementias is perhaps the simplest way to ensure that all relevant perspectives are brought to bear on the immense task before the council and will help accomplish the ultimate goal of the ending Alzheimer's disease and related dementias by 2025.
On another note, I am excited to share with Council the news that with the help of a generous donor AFTD is initiating a $5 million biomarkers initiative. Dedicated to stimulating discovery and development of biomarkers specifically for the various FTD clinical disorders and pathologies, we anticipate investing these funds October 20, 2015 over the course of the next 5 years and plan to leverage this investment to attract additional funding from various parties in the private sector.
I will also note that the AFTD Biomarkers Initiative is directly responsive to one of the recommendations to come out of the 2013 NAPA ADRD conference, which was--and I quote--to Develop FTD biomarkers for diagnosis and disease progression. In this, as in all programs we sponsor, AFTD is pleased to represent our community and cognizant that success in developing biomarkers to accurately diagnose or track progression of any of the FTD subtypes will also inform similar initiatives for Alzheimer's and all of the related neurodegenerative disorders, including Lewy body dementia, Parkinson's disease and ALS.
I look forward to keeping this council apprised of our progress and, as always, appreciate the opportunity to speak on behalf of our patients, their families, and the professionals who work with them.
Matthew F. Sharp, M.S.S.
Association for Frontotemporal Degeneration
DATE: October 20, 2015
SUBJECT: Public Comment for October 26 NAPA Advisory Council meeting
Good afternoon. My name is Ian Kremer and I serve as executive director of Leaders Engaged on Alzheimer's Disease (the LEAD Coalition). The LEAD Coalition is a diverse and growing national coalition of 77 member organizations [http://www.leadcoalition.org/who-we-are/our-members/] including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, home and residential care providers, and biotechnology and pharmaceutical companies. LEAD is co-convened by the Alzheimer's Foundation of America and USAgainstAlzheimer's. The coalition works collaboratively to focus the nation's strategic attention on Alzheimer's disease and related dementias and to accelerate transformational progress in: detection and diagnosis; care and support to enrich quality of life; and research leading to prevention, effective treatment and eventual cure. For more information about the LEAD Coalition, please contact me.
Congratulations and best wishes to the newly appointed members of the Advisory Council. We look forward to you building on the strong legacy of your predecessors, forging even more productive bonds with your colleagues, and being the catalysts for truly transformational progress in the quality of life for people facing dementia and the scientific pursuit of a world without dementia.
For the past several years, I have said during the public comment portion of Advisory Council meetings that the National Plan needed to match the aspirational and transformative 2025 goal for biomedical progress with similarly aspirational and transformative goals for clinical care and long term services and supports. At the Advisory Council's July 27 meeting, that conviction appeared to have sunk in with quite a few of the Council members. In particular, I want to thank Laurel Coleman and Harry Johns for their expressions not only of exasperation but of determination that this Advisory Council, this National Plan, and this country must achieve vast improvements in quality of life for those living with dementia and for their families.
With that in mind, I'll offer a sample of a dozen actions that might help the Advisory Council get started (I'll be happy to flesh out any of these points):
- Because the National Plan should be about person-centered progress that improves lives, not about issuing reports, holding events, and delivering units of training or service: work with public and private stakeholders to establish an ambitious national goal -- with metrics and milestones -- for lowering rates (among people with dementia and their caregivers) of isolation; neglect, abuse, and exploitation; falls; wandering; premature institutional placement; depression; pain; impoverishment; and inappropriate use of anti-psychotics in home and community-based care settings.
- Because transformative innovation requires multi-sector collaboration, strong coordination, and a purposeful confluence of priority-setting, resource commitment, and accountability: recommend that the National Plan include creation of a dementia care a services parallel to the Accelerating Medicines Partnership (being led by NIH in the biomedical research sphere).
- Because people living with dementia and family caregivers should have an easier time participating in and contributing to the Advisory Council process ("Nothing About Us Without Us"): the Advisory Council should conduct regularly scheduled public listening sessions in-person around the country or at least by web-conference and social media (e.g. Google Hangouts, Twitter Chats); add a "Comments" form to its ASPE website; add to each workgroup additional members (non-voting, if statutorily necessary) who are living with dementia or are caregivers; and consult with disabilities experts about other accommodations that would facilitate greater access and participation.
- Because there is dignity in knowing your diagnosis and because diagnosis is the door to quality care, self-determination, and advancing social and biomedical research: work with public and private stakeholders to establish an ambitious national goal -- with metrics and milestones -- for rates of accurate, timely, and actionable diagnosis.
- Because this is a national plan -- not a federal plan -- and quality of life issues are in no small measure defined by state and local policies and practices: actively engage in the National Plan process the National Governors Association, the National Council of State Legislatures, the National Association of Counties, the U.S. Conference of Mayors, and the National League of Cities to determine their capacity, interests, and best-practices.
- Because, by statute and by common sense, Congress is a stakeholder in the NAPA process: work with the relevant congressional committees, the House and Senate Alzheimer's Task Forces, the congressional caregiver caucus, and the congressional neuroscience caucus to more deeply engage them in the advisory council's work whether by attending meetings, appearing as guest presenters, or simply making sure they receive meeting agendas, announcements and links to materials and meeting videos.
- Because dementia is an enormous and under-addressed workplace challenge both for employers and employees: actively engage in the National Plan process the Office of Personnel Management, the Department of Labor, the Department of Commerce, the Society of Human Resource Managers, and representatives of both the business and labor communities to quantify those challenges and identify best-practices to change outcomes.
- Because most people living with dementia and their caregivers have additional health challenges: actively engage public and private stakeholders focused on commonly co-occurring medical conditions -- such as diabetes, cardio-vascular disease, mental health disorders, hearing loss, and mobility loss -- to participate in the NAPA process of developing recommendations and action plans to improve quality of life.
- Because dementia does note respect state borders: help states not only to share best-practices but also to form inter-state collaborations to address the needs of people living with dementia and their families who cross those state borders for services and for reasons of shared family caregiving.
- Because dementia does not respect international borders either in its challenges or its solutions: formalize the National Plan goals and objectives with milestones and metrics about fostering international collaboration on research investments and priorities, regulatory harmonization, and translation and scaling of clinical and care practices.
- Because living with dementia and caregiving for people with dementia is hard enough under normal circumstances but far more difficult during, or in the wake of, natural disasters: encourage the Federal Emergency Management Agency to participate in the NAPA Process to help develop recommendations and action plans to meet the ongoing and emerging needs of individuals, families, and institutions.
- Because the Advisory Council is a bully pulpit: be vocal, candid, and relentless is pressing Congress to end sequestration and lift the budget caps that do very real harm to millions of people living with dementia today and in the future.
In closing, I offer my apologies for topics I have failed to address and I offer my thanks to others making public comments addressing such omissions. I offer my appreciation to Advisory Council members and staff who give of their minds and hearts beyond what words can express. I offer my hope to all those living with dementia and their loved ones that they will be heard, heeded, and healed through the work we all do together.
Ian N. Kremer
Leaders Engaged on Alzheimer's Disease
DATE: October 20, 2015
SUBJECT: Sorry it's a little late
My name is Dayne DuVall, I'm the Chief Operating Officer of the National Certification Board for Alzheimer Care (NCBAC). For over 11 years, our organization has been at the forefront of setting benchmarks in dementia care for direct care workers and the professionals who train them. We are the only organization that offers dementia care certifications based on the healthcare licensure model.
I want to offer my welcome to the new members of the Council, and thank ALL the members of the Council for their dedication. While much of the attention nationwide is placed on finding a cure for Alzheimer's disease, I want to ask this Council to concentrate on the CARE of people with ADRD and their families. As many of you know, my father died from Alzheimer's disease. It was a 13-year gut-wrenching and tormented journey that devastated our family.
In my opinion, the care of people and their families going through this fatal disease doesn't get enough attention. Compared to research dollars, resources for proper care and support of people with this disease is relatively non-existent. Ask a family what they need most to help their loved one, and their number one concern is NOT finding a cure. In fact, a recent survey conducted by the University of Buffalo found that the #1 concern was money and help to support caregiving, followed by financial aid and other help for long term care and aging in place. Research dollars ranked lower than these concerns. According to the study published by the University, in 2014, "hundreds of millions of federal dollars were spent on science and drug development," but only "$10 million to care, services, and education". The author continues, [That] "represents less than $2 per person for care-related support…Are these the priorities that people and families living with dementia want? Their voices have not been heard over the clamor for research dollars." I know that this Council has advocated for long term support and services (LTSS) in the past, but the families have told us that this is what they need most!
One area that needs more attention on the national and state level is training of the direct care workforce. Dementia education is greatly lacking in most states. I believe federal dollars should be devoted to making sure that everyone who provides care to people with ADRD -- whether they work in skilled nursing facilities, hospice, adult day care, assisted living and ESPECIALLY home care -- should be required to prove their competence in providing care. CMS has highlighted competency training in their proposed regulations for nursing facilities; I am told that they will provide specific guidelines for dementia care.
I know that we all want to see the day when we don't have to have these meetings. However, I think that day is far into the future. I believe that the work that this diverse group of individuals, along with those of us who work daily to advocate for proper care and support for people with Alzheimer's and related disorders AND their families, will help secure more resources from federal, and thereby, state governments to make the lives of these individuals more manageable.
Thanks, again, for your dedication to the fight for the millions of people suffering from ADRD. And, yes, I said, SUFFERING. I know that in certain circles that is not politically correct. However, if you have been through this with a loved one, that is indeed what you, your family, and more importantly, the person who you love experiences. Yes, they LIVE with Alzheimer's, but we all SUFFER the disastrous effects of this disease and we should never forget the physical, financial, and emotional toll it takes on all of us.
Dayne DuVall, LMT, CAEd, CRTS
Chief Operating Officer
National Certification Board for Alzheimer Care
DATE: October 19, 2015
SUBJECT: RSVP for 10/26 Meeting
Good afternoon and thank you for your time today. My name is Grace Whiting and I am the Director of Strategic Partnerships at the National Alliance for Caregiving. The Alliance is a national non-profit organization dedicated to the mission of advancing family caregiving through research, innovation, and advocacy. By way of introduction to the new members of this body, we have over 40 national and multinational organizations in our membership, including four federal agencies and both not-for-profit and corporate organizations.
Together, we firmly believe that if our society is to rely on family caregivers to provide long-term care, then it is our duty to provide support for family caregivers -- at home, within models of healthcare delivery, in the workplace, and in the workplace. To that end, there are three comments I'd like to make today.
First, I would encourage you to consider international perspectives through your work on this council. As Secretariat of the International Alliance of CarerOrganizations, the Alliance often learns about new models of support for caregivers of people with Alzheimer's and related dementias. These models offer insight into how we can better support families in the United States who are managing this terrible disease.
For example, Scotland's "Focus on Dementia" model provides a meaningful framework for integrating a diagnosis for dementia into care and support. The Focus on Dementia model creates a "hub" for the patient and family to navigate the challenges of the disease. The hub has eight domains, including: a Dementia Practice Coordinator; therapeutic interventions; general health care; mental health care; environmental adaptations; community connections and engagement; personalized support; and support for caregivers. Diagnosis operates as a touchpoint to refer the individual with dementia to the Dementia Practice Coordinator, and it allows both that individual and their caregiver to become eligible for services. As many of these services are government-provided, there is data captured on both the caregiver and the care recipient (or patient) that can address the effectiveness of the support provided and received.
The Scotland model reminds us that diagnosis can serve as launching point for referral to information, resources, and caregiver supports. While our long-term care system is not as robust, there are existing community, private, and government resources that could help the newly diagnosed. For example, diagnosis could activate referrals to: disease-specific advocacy organizations; information about the National Family Caregiver Support Program and Lifespan Respite program; or information about family and medical leave or other workplace supports.
To the larger point at hand, Scotland's Focus on Dementia is an example of what we could learn from other nations. Groups like the Global CEO Initiative, the Global Dementia Framework, and caregiving groups like the International Alliance of Carers Organizations can offer insight into the issues this council is currently wrestling with.
Second, I would encourage the council to prioritize a national Care and Support Summit. It has been acknowledged by academic experts and drug innovators alike that we are still many years from a disease-modifying therapy for Alzheimer's and dementia. While we work towards research that will improve our future, there remains unmet needs now. Please remember the needs of families who are caring for individuals with dementia in our midst and the costs inherent in their contribution such as lost income, foregone retirement, and worsened health.
Finally, I would like you to join the Alliance and the Alzheimer's Foundation of America in an ongoing social media discussion during November on brain health and brain screenings. #TalkBrainHealth is an educational campaign to encourage family caregivers to talk with their families about brain screenings for older adults over the holiday season. We will be sharing a one pager that can be used as "talking points" for caregivers of older adults to discuss brain health and the role of screenings, which draws from key resources like the Institute of Medicine report on cognitive aging. More information is available at http://www.caregiving.org/talkbrainhealth or you can find us on Twitter at #TalkBrainHealth.
Thank you again for your time and for your continued commitment to the people and families living with dementia.
C. Grace Whiting, JD
Director, Strategic Partnerships
National Alliance for Caregiving
DATE: October 19, 2015
SUBJECT: October 26 Meeting Attendance
At the last meeting I was so excited waiting to hear how much money the NIH was going to recommend to Congress for research into treatment for dementia. I was then so very disappointed when they asked for just 326 million dollars be added to the budget. Why so little in comparison to what they did for cancer or HIV, and with the counsel's recommendation of 2 billion dollars? Others agreed with the 2 billion dollar figure, which is why it is so surprising. After everyone has tried so hard, and we finally get the opportunity of a lifetime, we are let down by NIH. If I understand it correctly, part of the reason seemed to be that they would not be able to deal with it if they had more money coming in. It is my hope that the council will send their own record to the congress and let them know how this recommendation is wrong and that it should be much higher.
On a side note, 2 billion is not even enough. What about the people here today? Why are there no advertising campaigns for dementia awareness yet? Some of you think I am too critical of you, and I have paid dearly for that, but please don't you think we should have some sort of dementia awareness campaign?
I have mentioned this before. I once had access to being able to call in, but the new administration has decided that it is not possible. Some of theCounsel members even recommended this should be addressed as the technology available today makes it very simple. I want to make it happen. When I reached out to the ADA they said a government agency must provide reasonable accommodations for a person like me. If I can no longer write or have problems driving, reasonable accommodations must be made. When they were all ready to help reinforce this, I was told they could not because it was HHS. They said they could help with any other government agency but not HHS. I am starting to wonder why things are different for HHS alone. HHS can take the lead here. Sending in an email is not the same as me being able to verbalize what I want to say. An email sent in advance also fails to capture what happens just before and during the meeting. Please reconsider your decision as I would like to be able to call in for our next meeting.
I am very grateful to be given the opportunity to be here again after having been banned from the last meeting. In life I have always tried to learn from my mistakes. While I heard you loud and clear on your expectations, I don't believe you fully understand what can be expected from people with dementia. If you are going to write policies and procedures on this issue, then you must clearly understand what this disease will do to people like me. We do lose our filters and say the wrong things at times. We also will do strange things in public that we would never have done when our brains were fully functioning. If you are going to educate the rest of the world then it is important for you to understand it first. Only then can you shed light on these issues and encourage others on how best to deal with us without trying to remove us from society. Please don't create more negative stigma, and don't make us feel worse because you don't understand how horrible this disease can be.
Before all this happened I was doing really great in my advocacy and knew what I needed to do each day. This action had a huge impact on me. I went from having a purpose to being completely derailed. I don't even know how to explain it, but I just cannot seem to get back on track to do what I once did best. I had reinvented myself to have a new purpose in life, which was not easy. While I cannot prove it, I do believe this incident has led to a much faster decline in the course of my disease. It is so important to realize this as your actions could have significant impact when dealing with those with dementia. I have lost my purpose and just can't seem to get back to where I was.
I belong to many groups, and I would like to share one post I recently read. It is called "Desperately Need to Share My Letter to God"
" Dear Heavenly Father,
I've reached my point of final desperation. I cannot go on like this much longer. I truly hate the disease that is taking my mother from me and Satan has taken hold of my leg and won't let me go making it even more difficult to handle.
For much of my life I never really knew my mom, but in the last 5 years that she has been living with me, I've come to learn that I love her more than anything. I am at the point where I can't bear to watch her suffer like this. It is tearing me up inside both physically and mentally.
While she is not in any physical pain, this disease is wreaking havoc with her brain. She is on an emotional roller coaster and is taking me along on its chaotic ride.
I am thankful to still have her but it is destroying me to see her struggle like this. I'm also still thankful that she can still take direction, but the unknown is for how much longer.
I finally accept the fact that I am fast becoming unable to care for her and in spite of how I have felt about her doctors telling me she needs to be in a nursing home, I fear they are right. I don't want to be my mother's caregiver any longer as it is just too painful. What I want is to just be her daughter again.
Her quality of life is just about zero. There isn't anything that she can do on her own any more . . . she needs help with everything. She has lost interest in her computer and she's bored with tv. She spends about 90% of her life sleeping. And when she is awake she's continually asking me why I hate her so much. How can I hate her so much if I keep taking her home rather than leaving her in the nursing homes, I've virtually given up living in my own home to be with her, I see that she gets to the doctor, I see that she gets dressed, that she has her 3 meals a day and her snacks and then sit here listening to her tell me that I don't love her, and again, why do I hate her so much (and each time it feels like a knife being stabbed into my already hurting heart).
I hear her cry out in her sleep for you to please take her in her sleep. She thinks that you too don't want her. She keeps asking me to help her because she doesn't understand what is happening to her brain and all I can say is that it's slowing down now that she is 95.
Please Heavenly Father, I really don't want to put her into a nursing home as I know that she will believe that I don't want her any more and that couldn't be further from the truth. I know it is your decision as to when it's time for us to enter this world and to leave it and I pray that you will soon answer her prayer and allow her to pass as she lay in my arms and not alone in a nursing home.
I'm sure you're aware that I have not been the best Catholic, but I am sure I don't fall into the classification of being the worst either. I beg on bended knees that you please answer her prayer and take her back home to those of her family who have already left this earth.
With love and reverence,
I remain your Daughter "
I see this all the time. Caregivers and patients are desperate and they have nowhere to turn. I think the answer is so simple. With the right website posing the right questions we could easily help people like this that are crying out for assistance.
JULY 2015 COMMENTS
DATE: July 24, 2015
SUBJECT: NAPA comment
I've attached my comment for Monday.
Thanks and have a good weekend!
Susan Peschin, MHS
President and CEO
Alliance for Aging Research
There is much to praise and to be grateful for in the 2015 National Plan to Address Alzheimer's Disease. Thanks to Secretary Burwell, Assistant Secretary Frank, Deputy Assistant Secretary Elam for their leadership on the plan and the impressive progress that has been made since 2011 in all areas.
Calls for additional investment in Alzheimer's disease research and care have been a consistent theme in the 3.5 years since the National Alzheimer's Project Act was implemented. The 25% increase in AD research funding at the NIH since 2011 is significant and appreciated.
A larger issue that we've been discussing around NIH funding prioritization is for NIH to consider costs to public healthcare programs (i.e. Medicare and Medicaid) as part of its prioritization for research investment in specific conditions. Economic burden on public healthcare programs is not currently considered as part of the existing strategic planning process at NIH. An April 2014 GAO [http://www.gao.gov/products/gao-14-246] study found that the five selected ICs--awarding the largest amount of research funding--that it reviewed did so considering similar factors and using various priority-setting approaches. In priority setting, IC officials reported taking into consideration scientific needs and opportunities, gaps in funded research, the burden of disease in a population, and public health need, such as an emerging public health threat like influenza that needs to be addressed. Those are all very valid and important considerations, but we would argue that costs to healthcare programs should also be a part of the research funding prioritization equation.
We encourage everyone here to take up this issue as part of the request for comment to the NIH-wide Strategic Plan by August 16, and I would ask that ASPE provide the RFI and instructions on how to submit comments at http://grants.nih.gov/grants/rfi/rfi.cfm?ID=46
Additionally, I want to call everyone's attention to the report FDA released about a week ago called "Targeted Drug Development: Why are Many Diseases Lagging Behind?" that specifically points to the scientific challenges that are thwarting drug development in complex diseases. Alzheimer's is one disease they mentioned http://www.fda.gov/AboutFDA/ReportsManualsForms/Reports/ucm454955.htm. The piece basically say FDA is doing all it can but they need more science: "Like many other diseases of the brain, Alzheimer's illustrates the obstacles to development of biomarkers and targeted drugs when scientific research has not yet uncovered the underlying causes or pathways of a disease." It is sobering report, but very much on point and we look forward to exploring these issues further with the Neurology Review division at our September 16 ACT-AD meeting.
I was excited to see the reference to "expansion and enhancement" of Lifespan Respite Care in the plan as well as the regulatory review of adult day services. Both respite and adult day services are incredibly important aspects of family caregiver support that may reduce or delay institutionalization among individuals with dementia. While the initial work has been promising, these programs need much wider support and coverage in order to meet the huge demand.
I want to say a more specific word about the Resources for Enhancing Alzheimer Caregiver Health (REACH) program. Believe it or not, this program was first funded by the NIA and NINR in 1995--20 years ago. There has been a REACH I study and a sequel, REACH II. It has been a VA-wide program since 2011 and AoA has also funded REACH programs throughout the country. Findings from the REACH studies showed improvements across many areas. Caregivers reported less "burden" and depression, and improved emotional well-being overall. They also reported gains in the areas of self-care and healthy behaviors, social support, and management of problem behaviors on the part of their loved ones with Alzheimer's disease. Plus, they gained an hour a day of time that was not consumed with caregiving duties.
While expanding REACH to Indian Country is another great step for this awesome program, I am wondering why HHS has not yet taken the step of making this a CMMI model program, or better yet, just going for it and implementing REACH CMS-wide. How many more years do folks have to wait?
Last, it is terrific that HHS is refreshing the Alzheimer.gov website. Two things I noticed: 1) it takes several clicks to get to specific info on research studies. It would be great if this could be more streamlined and if folks could access it more directly from the home page with a "find out about research studies in your area" subhead.
And 2) the tagline for the site- "alzheimers.gov- for the people helping people with Alzheimer's" seems to unintentionally overlook individuals with the disease, as well as others who may know someone dealing with it, or just want to learn about it. I'd love to see another tagline that invites everyone in. The community needs it, and it's getting bigger and bigger every day.
DATE: July 24, 2015
Attached please find NAPCA's comments for Monday's meeting. Thanks again for working with us on this issue!
Have a great weekend!
Wesley Lum, PhD, MPH
President and CEO
National Asian Pacific Center on Aging
Alzheimer's disease and related dementias are a growing concern within the Asian American and Pacific Islander (AAPI) community. Age is considered the greatest risk factor for Alzheimer's disease and AAPI women have the highest life expectancy (85.8 years) of any ethnic group.i Barriers that prevent the early diagnosis and timely interventions and care of Alzheimer's disease and related dementias among AAPIs include: cultural beliefs and language, lack of awareness that contributes to stigma, and limited accessible and culturally proficient services.ii Further, many AAPI older immigrants may feel discouraged to access aging and healthcare services (including screening for dementia) for several reasons: unfamiliarity with medical practices, having to locate interpreters, and the fear of miscommunication that may lead to misdiagnosis and improper treatment.iii Language and cultural barriers prevent them from full participation to the U.S. healthcare system, and studies have shown that "linguistic discordance," or miscommunication between patients and practitioners, is an implication of health outcomes and quality of care.iv
The National Asian Pacific Center on Aging (NAPCA), which is the nation's leading advocacy and service organization committed to the dignity, well-being, and quality of life of AAPIs as they age, respectfully requests that the Advisory Council on Alzheimer's Research, Care, and Services dedicate a council meeting to discuss (1) the effects of dementia on and (2) how to outreach to AAPI and other diverse minority communities.
Raising awareness of the impact of Alzheimer's disease and related dementias on 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 and equity in the service, benefits, and programs that are available to all American seniors. Thank you for considering this request.
- Administration on Aging. Serving Asian and Pacific Islander families. Home and Community-based services for people with dementia and their caregivers. http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/docs/Toolkit5_AsianPacificIslanders.pdf
- Alzheimer's Association of Los Angeles Riverside and San Bernardino Counties. Asian and Pacific Islander Dementia Care Network Project. Phase 1 Focus Group Report. http://www.alz.org/national/documents/C_EDU-APIDementiaCare.pdf
- Clough, J., Lee, S., Chae, D., Barriers to health care among Asian immigrants in the US: A traditional Review. http://muse.jhu.edu/journals/journal_of_health_care_for_the_poor_and_underserved/v024/24.1.clough.html
Wesley Lum, PhD, MPH
President and CEO
DATE: July 24, 2015
SUBJECT: FW: Matt Sharp's comments
Attached please find Matt Sharp's comments.
Association for Frontotemporal Degeneration
Hello. My name is Matthew Sharp. I am the Program Manager for The Association for Frontotemporal Degeneration (or AFTD). I would like to take today's focus on the related dementias as an opportunity to share some more details about the work AFTD does and the resources and information available to help people living or working with FTD understand this complex disease and connect with others for help and support.
But first I want to acknowledge the time and attention given to the Related Dementias today and express AFTD's gratitude to this morning's speakers, for sharing their time, knowledge and expertise. Opportunities to hear from expert physicians with experience diagnosing and treating people with FTD or LBD are nearly as rare as these related dementias are. AFTD recognizes the council's commitment to understand the related dementias and appreciates the efforts made to find and invite this morning's speakers to today's meeting.
AFTD is a small, but growing, non-profit disease advocacy organization based outside of Philadelphia. We were founded in 2002 in order to support people living and working with FTD, provide current and accurate information about the disease and caring for a loved-one, and promote and support medical research to develop effective treatments and ultimately find a cure for FTD.
AFTD supports clinical and basic science research on FTD through a Pilot Grant program and a Post-doctoral Fellowship. We also offer a drug discovery grant in collaboration with the Alzheimer's Drug Discovery Foundation (ADDF) to accelerate and support innovative drug discovery programs and biomarker development for FTD. Our newest grant program, currently in development, will support an Economic Burden Study on FTD, to look at the toll FTD imposes across many levels of society and provide objective information to clarify the real costs of the disease.
AFTD is also excited to be one of the primary advocacy organizations involved with The Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) consortium. With funding awarded through NIH last fall, the ARTFL consortium will join advocacy organizations like AFTD together with academic research centers for the purpose of conducting clinical trials in FTD. The ARTFL consortium is, without a doubt, the most exciting and hopeful FTD research projects ever and AFTD is honored to be involved.
In addition to promoting research AFTD is dedicated to helping anyone coping with FTD find the support, information and resources needed to maintain as high a quality of life as possible for both themselves and their loved-ones. AFTD's website offers up-to-date and reliable information about the disease and appropriate care, and we will send printed material to anyone who requests it. All the medical information on the site is reviewed by expert physicians and neurologists from our Medical Advisory Board (which includes Dr. Lippa) and is updated as needed to reflect the progress being made by research on FTD and related neurological diseases. We also include regional listings of medical centers in the US (plus a few in Canada) with a special interest in FTD research. These centers offer diagnostic expertise for anyone worried about having FTD as well as opportunities for people with FTD to participate in clinical trials or other types of medical research. Whenever possible we include the name and contact information of the individual to follow-up with to enroll in a research study, schedule an appointment for a diagnostic evaluation, or access other services that may be available. I am pleased to report that we currently struggling to come up with the best way to respond to medical centers and neurological practices that ASK US to be listed on the website. For the first decade or so of AFTD's life we faced the opposite problem and didn't know enough centers doing FTD research as we would like to list on the website. And while there are still some large sections of the country without any specialized medical resources for FTD this is definitely a good problem to have and another sign of progress.
In addition to the website, the primary point of contact for people to learn more about the resources available from AFTD is our Helpline. The Helpline is not "live" but people may call (toll-free) or email the Helpline as needed with questions or concerns and an AFTD staff member will respond as soon as possible. On average, AFTD staff respond to about 40 Helpline cases per week, and provide answers and information, help finding necessary services or connecting to others for support, as well as material and resources as requested. If we cannot answer a question or find a resource we will try to connect callers to someone who can. While fewer than in the past, there are still too many Helpline calls for which we can only offer our time to listen with a sympathetic ear. It is our sincere hope that the number of these cases will continue to decrease as awareness spreads and resources grow, but, nothing else AFTDs Helpline still provides a doorway through which people struggling with FTD can connect to a growing network of caregivers, people with the disease, and knowledgeable professionals for help and support.
Thanks again for this opportunity to describe the resources available through AFTD, as well as the interest and attention given to FTD today. The Councils continued commitment to including the related dementias in the work and scope of NAPA is deeply appreciated.
DATE: July 23, 2015
SUBJECT: Monday's presentation
Attached is presentation which will require editing at the time of presentation in order to honor time limit. Will talk fast and the photos will help me do so naturally.
Please let me know if I should make plans to do handouts here. I do believe that the faces are worth a 1000 words.
You have been patient and flexible and I greatly appreciate it. You will see that I could not figure out how to avoid having name "Georgie" recognized by dictionary...still working on that.
See you Monday and hope to hear from you beforehand so that I know how to proceed.
NAPA Advisory Council Meeting
Thank you for the opportunity to address the Council today. Some of you may remember me as a regular attendee during the first two years after the NAPA was implemented. It is a privilege to be back again today.
I am here as a family advocate for individuals with intellectual disabilities and their families. I also come as a member of the NTG, a grass roots organization designed to increase the awareness of and services for those with ID who face the challenges of aging and further cognitive decline, including dementia.
My Brother Bill had Down syndrome and died of complications of Alzheimer's disease at age 49. (Page 1 handout). As advocates, our family was dedicated to insuring quality of life and quality of care across his life span, with a focus on physical, mental, emotional and spiritual wellbeing. The diagnosis of Alzheimer's disease required intensified efforts that we could barely muster and was the greatest challenge that we faced as a family in Bill's lifetime. It was a cruel and painful journey, filled with many unanticipated obstacles. After Bill's death I vowed that I would work hard so that other individuals and families would be spared this same experience. Today I am joined in spirit by the NTG and many families as I appeal to you to further include this special population in all aspects of research, care planning and funding.
Over the course of the past five years I have been blessed to meet many families from across the country. Some have been siblings and some aging parents who have continued to care for their loved ones as they all age simultaneously. There are a number of common concerns (Page 2 handout) that have been expressed. These include:
- Lack of information, especially at time of diagnosis
- Profound sense of Loss with further diagnosis
- Fear about future-including financial fears
- Difficulty formulating long term plan
- Struggle to access community based coordinated care
- Difficulty partnering with medical community
- Being overwhelmed by demands of caregiving
- Isolation and abandonment
- End of life issues
During my last public statement at a Council meeting a little over two years ago in the spring of 2013, I spoke of the urgent need of aging caregivers. I told of Betty, currently age 86, Frank, currently age 90 and Richard, soon to be 49, a special family who lives in a very small mid-western town (Page 3 handout).
Despite the presence of a small group home for medically fragile in their former community, Richard was not able to access the facility because of his diagnosis of AD. In April 2013, with family care giving resources depleted, Richard made the move to a 60-bed nursing home that was designed to meet the needs of individuals with ID and physical and mental health challenges. Richard was one of very few patients with AD and the staff was not specifically trained in the disease process. He was initially treated with Risperdal, as he was mobile at the time of admission and deemed a "challenging patient". Soon after he exhibited an adverse drug reaction. His parents alerted the staff to the observable changes and the medication was Dc'd. However, within 4 months of his admission to the facility, Richard had declined rapidly. By August 2013, Richard became wheel chair bound, had limited oral or physical responses and was totally dependent on others for all care. He experienced more frequent seizures and has been on increased medications.
Because of the distance of the facility from the family home and failing health, Betty, age 86, and Frank, age 90, relocated to the town of 1500 where Richard currently resides. They are a presence in the facility and committed to being there for Richard as he continues his decline. They are grateful for the care that Richard receives but mourn the loss of their socially active, garrulous son who can no longer utter a word. Formerly a man with a robust appetite, he can no longer lift a spoon to feed himself. They are pained by the emptiness in his once sparkling eyes. Richard will mark his 49th birthday in August of this year. (Page 4 handout)
Mr. S., age 87, still works part time including as a statistician for a major league football team, despite Parkinson's disease. His wife, soon to be age 84, has Alzheimer's disease. Their son Georgie, who had Down's syndrome and Alzheimer's disease, died at home, this past March with his parents and sisters at his bedside. He was 51 years old and succumbed to aspiration pneumonia, a common complication of AD. (Page 5 handout)
Georgie's parents paid for 24 hour private care and they honored his wish to stay home for over 3 years, as he declined. The only other option was a nursing home, where he did have a short stay after a broken foot. His sister Mary reported that every day after the nursing home stay, Georgie would wake up and he'd ask his Dad..."I stay home, Daddy?" Three of Georgie's sisters, Nancy, Pattie and Debbie live nearby and were instrumental in his care and that of their Mother. Georgie also had two special caregivers, Chris and Mark who helped to make home care possible. For all it was a labor of love, performed without question. The high cost was heartbreak. (Page 6 handout)
Georgie's family misses his smile and his sense of humor. And when they think of him, they remember his favorite song... I've got that joy, joy, joy, joy down in my heart...Down in my heart to stay!
I close with a brief recount of Fran and her family. She notes that 4 generations have been impacted by aging and concomitant decline. Fran's mother had been in a nursing home for a prolonged period of time and diagnosed with Parkinson's diseases and Lewy Body Dementia. The family assumed the cost of her care up until the time of her death. (Page 7 handout)
Fran's only sibling is a brother, age 65. He lives 7 hours away from her, has Down syndrome and is in the end stages of AD. Efforts to bring her brother closer to her were complicated by funding restraints from state to state and guardianship challenges. When her brother was no longer able to stay in the group home in which he had lived for 2 decades, a crises occurred. Where would he live? Who would cover the cost? What happened to his former funding stream? Her brother is now in a nursing home and the family worries from month to month about how the costs will be covered. Hospice came and went when he no longer met their criteria, taking a greatly needed wheel chair with them. The family then funded a $3500 chair so that he would not be bed ridden. Exhausting advocacy issues have intensified as his disease has progressed.
Fran, like many others, is emotionally overwhelmed and plagued by guilt over lost time with and attention to her husband, children and grandchildren as she tends to issues of intergenerational decline. She laments the fact that her brother, with his lifetime of cognitive impairment, was never able to communicate end of life wishes. She is often is faced with guardianship issues that may have best been modified years ago.
Their plight is real...the needs of individuals and families great. Families who have been lifetime caregivers often feel abandoned in the end. They have worked hard to independently provide care in the past. They now need extensive support that they struggle to access. I urge you to leave here today, more than 4 years after NAPA was signed and implemented, with a renewed awareness of the critical needs that remain in existence today for this underserved group of people.
Documents were previously provided for today's presentations. I am hopeful that Director Hoffman of the Dept. of Health, State of NY will review the populations identified as "disproportionately impacted" in the ADCSI initiative and consider including family members with ID. This could serve as a model of what might be done across the USA. Director Hoffman and many other Advisory Council Members have been our great champions in the past and I am hoping to count on all of you in the future. Thanks for this opportunity to be the voice of many who would otherwise not be heard.
DATE: July 22, 2015
SUBJECT: Public Comments
I have attached the public comments I plan to share at the Advisory Council meeting on July 27th, 2015.
B.S., neuroscience (May 2016)
Christopher Newport University
NAPA Advisory Council Public Comments for July 27th, 2015
My name is Kennedy O'Donnell. I am a student at Christopher Newport University and I am speaking on behalf of the Dementia Action Alliance. Thank you, NAPA Advisory Council, for giving the public an opportunity to voice their opinions about dementia in the United States.
At almost every summit and conference on dementia in America, the main discourse revolves around cure and treatment. Leaders present the same fearful statistics about the rise of dementia diagnoses in the United States, and urge researchers to put their best foot forward. While researchers are hard at work to eradicate Alzheimer's and related dementias, it is the job of everyone else to truly care for those who currently have dementia. This is a multipronged process that (to name only a few) involves eliminating the heavy negative stigmas of living with dementia, creating support networks, and really listening to what people with dementia have to say.
I want to emphasize the importance of this last point with an anecdote that comes from a video conference call that was hosted by the Dementia Action Alliance just last week. As the call was about to finish, a caregiver informed the group that a man living with Alzheimer's had been listening to the discussion for the past hour, and wanted to speak. After he introduced himself and informed us of the severity of his memory loss, he began to tell us about all the wonderful times children come to his residence and simply sit down and read books with him. He told us that it is the greatest enjoyment he can receive because it makes him "feel like a grandfather again for 20 minutes." Now, I don't know this man personally, and I don't know his family, but I am almost certain he is still a grandfather. He didn't stop being a grandfather just because he was diagnosed with Alzheimer's.
This man's comments serve as a reminder that a support network for those with dementia should reach beyond their own sons and daughters. As a society, we need to make sure our kids know that they are an integral part of their grandparents' livelihood. Dementia should not change the way a child loves their grandparents, and it is our job to help them continue to feel connected to their whole family. By addressing the importance of the connections between these two generations, we will be educating children, correcting negative stigmas, and, ultimately, helping those with dementia live fully.
The current National Plan to Address Alzheimer's mentions nothing specifically of the disparities between our young and old generations. I am here to ask that NAPA please promote the benefits of intergenerational connectedness for both young children and our older population with dementia.
DATE: July 22, 2015
SUBJECT: Re: July 27 Meeting Attendance
I've attached my written public comments for the July 27 NAPA Advisory Council meetings per the request and reminder below. I'll endeavor not to stray too far off script when speaking on July 27 but it is hard to anticipate what might rise in importance between today and that moment.
Many thanks and best wishes!
Ian N. Kremer
Leaders Engaged on Alzheimer's Disease
Ian N. Kremer, Esq.
Leaders Engaged on Alzheimer's Disease (LEAD Coalition)
Good afternoon. My name is Ian Kremer and I serve as executive director of Leaders Engaged on Alzheimer's Disease (the LEAD Coalition). The LEAD Coalition is a diverse and growing national coalition of 76 member organizations [http://www.leadcoalition.org/who-we-are/our-members/] including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, home and residential care providers, and biotechnology and pharmaceutical companies. LEAD is co-convened by the Alzheimer's Foundation of America and USAgainstAlzheimer's. The coalition works collaboratively to focus the nation's strategic attention on Alzheimer's disease and related dementias and to accelerate transformational progress in: detection and diagnosis; care and support to enrich quality of life; and research leading to prevention, effective treatment and eventual cure. For more information about the LEAD Coalition, please contact me at: firstname.lastname@example.org.
Typically, my public comments at the Advisory Council on Alzheimer's Research, Care, and Services meetings are based on what has been presented and discussed by Advisory Council members to that point in the meeting day. In light of the recent request for comments to be submitted several days in advance of the meeting, this document submitted on July 22 attempts to anticipate what I might wish to say on July 27. I hope that the Advisory Council will forgive me any extemporaneous remarks that I might offer during the public comment session on July 27.
I must begin by recognizing HHS staff and Secretary Burwell for the recently published National Plan to Address Alzheimer's Disease: 2015 Update [http://aspe.hhs.gov/daltcp/napa/NatlPlan2015.shtml]. The 2015 Update reflects enormous good work done to date and constructive work being planned. It is particularly valuable that the 2015 Update reminds us all that the National Alzheimer's Project Act called for a 'national' rather than 'federal' plan. While many of us outside government will continue to call for even more robust federal efforts in a number of areas (including and particularly areas in which the 2015 Update appears to come up short of the Advisory Council's recommendations), it is essential that those of us in the private sector continue to look for ways in which we can collaborate with federal partners and work to fill gaps in federal efforts. Exemplary of productive collaboration between private and federal partners is the recently announced launch of the Dementia Friendly America initiative [http://www.dfamerica.org/] to build dementia friendly communities across the country. More than 50 national organizations and several federal agencies have worked together closely to reach this starting point. Our success depends on that collaboration growing more robust, more imbedded in the organizational cultures of our public and private partners, and on us sustaining our moral and substantive commitment to be guided in our work by those who rightly measure our results: people with dementia and their loved ones whose quality of life we seek to transform. National organizations interested in learning more about the Dementia Friendly America initiative are encouraged to contact us at: email@example.com.
I also want to take a moment to thank the organizers, sponsors, attendees, presenters, and journalists reporting on last week's Alzheimer's Association International Conference [https://www.alz.org/aaic/]. It isn't enough that important science be conducted. It must be exposed to scrutiny, put in context, disseminated among colleagues, and understood by those who fund, who volunteer, who stand to benefit. Children wonder how Santa delivers all those packages in a single night; I wonder how Maria Carrillo herds 4,000 scientists for a week. Somehow -- perhaps with the help of Alzheimer's Association elves -- magic happens and we're all the better for it.
Today's Advisory Council meeting focus on non-Alzheimer's dementias [http://aspe.hhs.gov/daltcp/napa/meetings.shtml#Jul2015] -- while overdue -- is highly encouraging. I hope it represents a sustained commitment both to discuss and to substantively address these issues more consistently in the Advisory Council and National Plan Update processes. Certainly, the upcoming ADRD Summit organized by NINDS provides another important pivot point for the Advisory Council and Plan Update processes to engage non-Alzheimer's dementias more effectively.
While we all ought to be sympathetic to the limitations of time and other resources available to the Advisory Council, to make the Plan genuinely 'national' and not only 'federal,' it is essential to find creative, manageable and productive ways to add more -- and more diverse -- voices. A number of us have encouraged expansion of the Advisory Council to include both more appointees living with dementia and more representatives from non-Alzheimer's dementia communities. Those remain good, constructive, and achievable recommendations; as private sector stakeholders, we are ready to work with our federal partners to achieve the achievable. Similarly, I would encourage collaboration between private sector stakeholders and our federal partners to find new and better ways for people to participate in the Advisory Council process even if they are unable to attend the quarterly meetings in Washington or do not want to be limited to submitting written comments or watching a live-streaming video. While those options may be sufficient for some, clearly they are inadequate for many. Just to offer one example (and I have others), with support from private sector stakeholders, it ought to possible to conduct regularly scheduled public input listening sessions around the country, attended by Advisory Council members either in person or at least by video feed who then could report back to the full Advisory Council.
This is a time of great and deserved hope in dementia. No one could miss the depth and breadth of attention devoted to dementia throughout the White House Conference on Aging (thank you Nora Super, AARP, and everyone else who led and contributed). We all anticipate anxiously NIH's so-called "bypass budget" [https://www.nia.nih.gov/alzheimers/features/nih-estimate-total-funding-needs-alzheimers-research] recommendation for federal funding needed to reach the 2025 goal. The advocacy and research communities have been vigorous in encouraging NIH to be bold in its recommendation and take confidence in the legislation put forward by the House and Senate appropriations committees along with the 21st Century Cures legislation. Shortly after the Advisory Council's last meeting, 137 LEAD Coalition member organizations and other supporters submitted to HHS a recommendation that federal agencies and private sector stakeholders partner to organize and conduct a dementia care and services research summit [http://www.leadcoalition.org/?wpfb_dl=158]. HHS recently responded that Secretary Burwell will ask the Advisory Council for guidance so -- on behalf of those 137 signatories -- I'll take this opportunity to encourage the Advisory Council to advise the Secretary to be bold in collaborating with us to identify research gaps and priorities as well as opportunities to translate and scale what we know already to be effective in improving the quality of life for the most important stakeholders: people living with dementia and their care partners. And in the best interests of those most important stakeholders, we will begin now with our private sector partners to develop the resources necessary to conduct such a summit as soon as our federal partners are ready to join us.
The need for wide dissemination of effective care and services interventions is highlighted in part by the recently released report Caregiving in the U.S. 2015 [http://www.caregiving.org/caregiving2015/]. I would encourage the Advisory Council to invite Gail Hunt from the National Alliance for Caregiving and Susan Reinhard from AARP to provide a briefing about the report at an upcoming Advisory Council meeting, with a particular focus on care involving people with dementia.
In closing, I offer my apologies for topics I have failed to address and my thanks to others making public comments addressing my omissions. I offer my appreciation to Advisory Council members and staff who give of their minds and hearts beyond what words can express. I offer my hope to all those living with dementia and their loved ones that they will be heard, heeded, and healed through the work we all do together.
DATE: July 22, 2015
SUBJECT: RE: July 27 Meeting Attendance
My comments are attached. I'm disappointed in the urgency to provide these pre-meeting as I typically react to the topics discussed in the meeting when I make my remarks. I'm curious as to this sudden change of process.
Mary Anne Sterling, CEA
Connected Health Resources
Alzheimer's Advisory Council Meeting_072715_Public Comment
An exciting development has transpired quietly this week in the Alzheimer's research community. It won't be quiet for long. A team led by UsAgainstAlzheimers and the Mayo Clinic was awarded a grant from PCORI to form the first patient- AND CAREGIVER-powered-research-network for Alzheimer's and other forms of dementia.
Why is this important?
Patient-Powered Research Networks (PPRNs) are operated and governed by patient groups and their partners and are focused on a particular condition or characteristic. This ushers in a new era in Alzheimer's research that shifts this discipline from researcher-driven to patient-centered research.
This is research done differently.
For those of you who are not familiar with PCORnet, this is shorthand for the National Patient-Centered Clinical Research Network, an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI).
PCORnet is a large national network for conducting clinical comparative effectiveness research (CER) and other types of patient-centered health research. It fosters 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.
Imagine what we can achieve when patients, family caregivers, clinicians, health systems, and researchers are working collaboratively. This is a monumental step forward and one that the Alzheimer's community can be proud of. It is now up to us to participate.
DATE: July 22, 2015
SUBJECT: Michael Ellenbogen speech for the July 27 Advisory Council meeting
Attached is my speech for the July 27 Advisory Council meeting. Is there a way I can add additional comments if needed as I hear them speak at the meeting on that day? I would still like to read it myself if I can dial in on the conference line.
My name is Michael Ellenbogen and this speech is being read on my behalf because of what I believe to be a failure of the NAPA committee to set the best example for others when working with those living with dementia.
About 6 years ago I was an Early Stage Advisory Group member for my local Alzheimer's Association. We were encouraged to identify issues for people with dementia so we could make a difference. I identified that Minorities were being discriminated against at a local hospital in my area. The Association didn't want to explore my concern as this hospital contributed money to them. That day will stay in my mind forever as that is what got me so angry that I started my advocacy. I soon realized that many of the agencies that tried to make themselves look good in others' eyes actually failed the very people they were claiming to support.
I took on many roles over the years and became vocal, as I realized that was the only thing that seemed to work. I did not like doing that but I did not have time on my side. I needed action quickly. I have tried to enlist many others with dementia over the years but they were afraid that they would be treated unfairly for being honest.
A few weeks ago our government made a deal with Iran after they said they wanted to kill us. We even offered to give them 150 billion dollars after that. The president recently said we need to release convicts and give them a second chance. But they feel I am a threat.
I live with Alzheimer's and I am saddened to realize our government is contributing to keeping people with dementia from getting the rights they deserve. Yes, I wanted my words to get your attention. I apologized very quickly when I realized I may have offended someone even though I had no harm intended in my words. Not one person from HHS ever asked me what I meant by my statement. Not one. I, a person living with dementia, am instead being treated like a crazy person, rather than being treated with respect. I knew of the stigma associated with this disease. I and many of my friends, also living with dementia, never had this type of stigma in our minds.
I have since reached out to many who have always spoken to me in the past. All my emails and calls have been ignored. Most of you have known me for over 3 years now, I am no stranger. And for your information, before I submit my speeches they are vetted by others who do not have dementia. I have always tried to do what was right.
I have been able to bring others to these meetings with me from time to time. I so wish there were many others with dementia at this meeting. If there were, I would not feel the need to be here. Your actions have resulted in scaring them off even more. Others living with this disease have told me this was the treatment they were afraid of. You, the committee, should be ashamed for not doing what is right for all of those with dementia. In my opinion you get an F for failure. You have lost the respect of many by the action you took so heartlessly.
Many have spoken to me about this, even some on other committees, who believe the wrong decision was made. What I cannot understand is why no one can be professional and undo this error. Your actions here have shown me even more how NAPA has failed the people living with dementia in the US and should not be used as any model.
I have even been removed from the list serve emails so I no longer receive update emails from NAPA. Let's speak the real truth here. It was not my words that caused fear here; someone just did not like a person with dementia speaking so honestly.
And, secondary to my banning, the Alzheimer's Association decided to strip me of my position with them and I am banned from their public meetings. The two leading organizations, HHS and the Alzheimer's Association, who are supposed to support people with dementia, just threw a person right under the bus. This is a poor example set by the same people helping to create dementia-friendly communities.
As a person with dementia I am proud.
As a person with Alzheimer's I have many difficulties.
As a person living with a disease I still have my pride and dignity.
Don't take that away from me by saying things I did not say and treating me like a crazy person.
You should have received the World Purple Angel pin today which was given to you by Abington hospital. It is my hope you will wear it proudly in support of all types of dementia.
DATE: July 26, 2015
SUBJECT: Is age-related excess brain iron causing Alzheimer's disease? Comments by Caroline Rodgers for 7-27-2015
Attached please find the comments I intend to present on Monday at the Advisory Council on Alzheimer's Research, Care and Services. Kindly let me know you have received them and have no difficulty opening the file.
Is age-related excess brain iron causing Alzheimer's disease?
Good afternoon. My name is Caroline Rodgers. Some of you may remember me from previous presentations regarding ionizing radiation. Today I am confining my comments to work done by scientists -- some of them giants in the field -- investigating the role of excess brain iron in Alzheimer's disease.
We know that excess brain iron is associated with Alzheimer's disease and other dementias and that iron stores accumulate with age 1-6. Many diseases that are risk factors for Alzheimer's, such as cardiovascular disease and type 2 diabetes, also are associated with accumulated iron stores 3. Studies have shown consistent correlations between iron overload and cognitive deficits, with the reduction of iron stores via chelation showing some cognitive improvement 5.
There is evidence that health issues associated with Alzheimer's that affect seniors, such as the onset of epilepsy 7,8 or age-related macular degeneration 9, 10, also involve excess iron, making one wonder whether many diseases considered "age-related" would be more accurately termed "iron-related."
In terms of Alzheimer's distinctive neuropathology, investigators have found evidence that its two hallmarks, amyloid plaques and tau tangles, are involved with iron regulation 1, 2, 4-6, 11, 12.
On the genetic front, scientists have found that Alzheimer's and hemachromatosis, which causes iron overload, have genes in common 3, 6. Even more interesting is the discovery earlier this year suggesting that the APOE gene is involved in iron regulation. In the study, the APOE4 allele -- the one most clearly associated with Alzheimer's -- was linked to higher cerebrospinal ferritin levels, which are considered a marker for brain iron load 13. Perhaps analyzing the iron levels of individuals with the APOE4 variation would shed light on why some, but not all carriers of this allele develop dementia.
If excess brain iron is the key to what has become such a major threat to individual and national health, it opens up many promising avenues for diagnosis, intervention and prevention. For instance:
- Blood tests can be used to detect when iron excesses are developing 13, 14
- MRIs can identify those most at risk of Alzheimer's in time for interventions 5
- Geneticists can devise gene therapies for variations that cause iron dysregulation
- Pharmaceutical companies can develop more effective chelators that reduce side effects 1, 2, 5, 6
- Phlebotomy can be employed as a non-toxic, long-term means of reducing iron stores 3
- Dietary initiatives can reduce iron absorption 6
A national campaign to address dementia by monitoring and safely minimizing iron accumulation in adults could simultaneously reduce the prevalence of other costly diseases that impair quality of life or cause premature death. If the key to Alzheimer's disease is made of iron, it could open many doors.
- Raven EP, Lu PH, Tishler TA, Heydari P, Bartzokis G. Increased iron levels and decreased tissue integrity in hippocampus of Alzheimer's disease detected in vivo with magnetic resonance imaging. J Alzheimers Dis. 2013;37(1):127-36.
- Oshiro S, Morioka MS, Kikuchi M. Dysregulation of iron metabolism in Alzheimer's disease, Parkinson's disease, and amyotrophic lateral sclerosis. Adv Pharmacol Sci. 2011;2011:378278. Epub 2011 Oct 12.
- Dwyer BE, Zacharski LR, Balestra DJ, Lerner AJ, Perry G, Zhu X, Smith MA. Getting the iron out: Phlebotomy for Alzheimer's disease? Med Hypotheses. 2009 May;72(5):504-9. Epub 2009 Feb 4.
- Mesquita SD, Ferreira AC, Sousa JC, Santos NC, Correia-Neves M, Sousa N, Palha JA, Marques F. Modulation of iron metabolism in aging and in Alzheimer's disease: relevance of the choroid plexus. Front Cell Neurosci. 2012 May 22;6:25. doi: 10.3389/fncel.2012.00025. eCollection 2012.
- Schröder N, Figueiredo LS, de Lima MN. Role of brain iron accumulation in cognitive dysfunction: Evidence from animal models and human studies. J Alzheimers Dis. 2013;34(4):797-812.
- Sadrzadeh SM, Saffari Y. Iron and brain disorders. Am J Clin Pathol. 2004;121(Suppl1):S64-S70.
- Vélez L, Selwa LM. Seizure disorders in the elderly. Am Fam Physician. 2003 Jan 15;67(2):325-32.
- Zhang Z, Liao W, Bernhardt B, Wang Z, Sun K, Yang F, Liu Y, Lu G. Brain iron redistribution in mesial temporal lobe epilepsy: a susceptibility-weighted magnetic resonance imaging study. BMC Neurosci. 2014 Nov 21;15:117.
- Klaver CC, Ott A, Hofman A, Assink JJ, Breteler MM, de Jong PT. Is age-related maculopathy associated with Alzheimer's Disease? The Rotterdam Study. Am J Epidemiol. 1999 Nov 1;150(9):963-8.
- He X, Hahn P, Iacovelli J, Wong R, King C, Bhisitkul R, Massaro-Giordano M, Dunaief JL. Iron homeostasis and toxicity in retinal degeneration. Prog Retin Eye Res. 2007 Nov;26(6):649-73. Epub 2007 Aug 11.
- Duce JA, Tsatsanis A, Cater MA, James SA, Robb E, Wikhe K, Leong SL, Perez K, Johanssen T, Greenough MA, Cho HH, Galatis D, Moir RD, Masters CL, McLean C, Tanzi RE, Cappai R, Barnham KJ, Ciccotosto GD, Rogers JT, Bush AI. Iron-export ferroxidase activity of β-amyloid precursor protein is inhibited by zinc in Alzheimer's disease. Cell. 2010 Sep 17;142(6):857-67.
- Li L, Wang W, Welford S, Zhang T, Wang X, Zhu X. Ionizing radiation causes increased tau phosphorylation in primary neurons. J Neurochem. 2014 Oct;131(1):86-93. Epub 2014 Jun 16.
- Ayton S, Faux NG, Bush AI; Alzheimer's Disease Neuroimaging Initiative. Ferritin levels in the cerebrospinal fluid predict Alzheimer's disease outcomes and are regulated by APOE. Nat Commun. 2015 May 19;6:6760.
- Bester J, Buys AV, Lipinski B, Kell DB, Pretorius E. High ferritin levels have major effects on the morphology of erythrocytes in Alzheimer's disease. Front Aging Neurosci. 2013 Dec 6;5:88. doi: 10.3389/fnagi.2013.00088. eCollection 2013.
DATE: July 22, 2015
SUBJECT: Public Comments for 7.27.2015
Attached is a copy of my Public Comments for Monday's Advisory Council meeting. Thank you, Karen Love
CCAL - Advancing Person-Centered Living
Falls Church, VA
Dementia Action Alliance
Public Comments to the NAPA Advisory Council
July 27, 2015
My name is Karen Love and I am here representing the Dementia Action Alliance. Thank you, NAPA Advisory Council members, for the opportunity to provide comments today. The release of the 2015 National Alzheimer's Plan is a testament to the amount of work undertaken by federal agencies since 2011 as well as the many efforts currently underway. Thank you, Dr. Elam and Dr. Petersen, for your committed and able leadership.
To date NAPA has not yet addressed the need for a coordinated, national plan to address societal misperceptions and stigmas about dementia, including Alzheimer's that affects how people live with this chronic condition. The internet has provided a valuable way for people who are living with dementia in the early stages to write about their lived experiences and express how stigmas impact their well-being.
Sandy Halperin, who you met during the April Advisory Council meeting, often has to remind people that he is still living and not dead yet, so please treat him as a living human being. Another outspoken advocate, Harry Urban, writes, "Don't stereotype me or underestimate me because I have Alzheimer's...help us regain respect and dignity so we may have a better quality of life". Imagine having a life-altering health condition AND having to advocate to be treated normally!
Kate Swaffer, diagnosed with young-onset dementia at the age of 49, was told by health care professionals to put her affairs in order and to begin looking into long term care options for later on. Others, including Harry Urban, are given prescriptions and told to come back in six months. Kate coined the term "prescribed disengagement" to describe this mindset. She say, "This sets us up to live a life without hope, without a sense of a future and destroys the notion of well-being." Christine Bryden, in her 2005 book "Dancing with Dementia: My Story of Living Positively with Dementia," says -- "How you relate to us has a big impact on the course of the disease. You can restore our personhood, and give us a sense of being needed and valued...Give us reassurance, hugs, support, a meaning in life. Value us for what we can still do and be."
Most people do not realize they have misperceptions about living with dementia let alone realize the impact the misperceptions have on the emotional and social well-being of individuals who are living with the condition. Understanding how important it is for them to be meaningfully engaged in things they find interesting in daily life, having purpose and being valued are as vital to their well-being as their physical health.
Additionally, many of the words that are widely used are stigmatizing. Often words such as "victim," "demented," and "sufferer" are used to describe a person who has dementia and words including "dementing illness," "tragedy," and "affliction" to define the condition. This type of language can make a tremendous impact on how people living with dementia feel about themselves, and how they are treated and considered by others. Using appropriate words is respectful, supportive, and non-discriminatory.
Under GOAL 4 of the National Plan -- Enhance Public Awareness and Engagement -- we ask you to please include this year in your planning the development of a coordinated public-private, national awareness campaign to educate the public about living with dementia including addressing the stigmas and misperceptions.
Co-Leader, Dementia Action Alliance
DATE: July 21, 2015
SUBJECT: RE: July 27 Meeting Attendance
Please see my attached written comments for public remarks at the July 27th NAPA Advisory Council Meeting. My colleague Charlotte Dodge will not be makind comments and can be removed from the docket.
National Alliance for Caregiving
Good afternoon. My name is Grace Whiting and I am the Director of Strategic Partnerships at the National Alliance for Caregiving. I appreciate the opportunity today to share some new research on family caregiving and to offer insight from the caregiving community. Thank you for giving me this time.
As you may know, the National Alliance for Caregiving was founded in 1996 by AARP, the American Society on Aging, the National Association of Area Agencies on Aging, the National Council on Aging, the U.S. Department of Veterans Affairs, and our CEO, Gail Gibson Hunt. Currently, more than forty organizations are in our membership, all of whom support our mission to elevate the national conversation on family caregiving through research, innovation, and advocacy. Under Ms. Hunt's leadership, we conduct public policy research, support the development of state and local caregiving coalitions in the U.S., and convene an international coalition dedicated to caregiving issues across the globe.
As part of that mission, we conduct a report every five years with AARP on the state of caregiving in the United States. The 2015 edition of this report provides quantitative data on 1,248 family caregivers who currently provide or provided within the last year, unpaid support to a loved one. I have shared copies of the Executive Summary with each of you and the full study can be found at http://www.caregiving.org/caregiving2015.
Of particular interest to this community are the findings related to caregivers of persons with Alzheimer's or dementia. Twenty two percent (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 Alzheimer's, dementia, or other mental confusion often provide support for a variety of tasks, including helping with (on average) 2.2 Activities of Daily Living (such as bathing and dressing), 4.6 Instrumental Activities of Daily Living (such as running errands or managing finances), and medical or nursing tasks (such as wound care and giving injections). 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.
This care, although unpaid, does not come without cost. Dementia caregivers are more likely than others to have difficulty performing ADLs and medical/nursing tasks. Half report high emotional stress, and many say caregiving has adversely affected their own health. Typically, the dementia caregiver is a 53 year old who expects to continue providing care over the next five years, well into the time most begin preparing for their own retirement.
Likewise, other research has shown that the family caregiver's health declines as the care recipient's dementia advances. Caregivers have their own health and wellness needs that must be met to keep the person with dementia safe. This is not just a retread of what we already know but a fact that bears repeating, as projections about the availability of family caregivers by mid-century show that we face a "caregiving cliff." There are a declining number of family caregivers for every person who needs care. And we know that today, in 2015, nearly a third of caregivers across all disease states are doing more than their "fair share", providing an average of 62.2 hours each week providing care at no small personal cost. The issue of inadequate supply of family caregivers and growing demand will only worsen as family size in the U.S. continues to shrink and families continue to live apart at long-distances.
Other advocates in this space have urged this body to consider new solutions in care and support and we would second those recommendations. We would offer to be a resource where we can be helpful to this council and future members. Additionally, we would urge this body to continue identifying how new technologies and innovations can support caregivers and to look toward the example set by the Department of Veterans Affairs' Caregiver Support Program. New strategies need strong leadership, and we ask that this body continue to remember the needs of those families who are caring for individuals with dementia. Thank you.
DATE: July 17, 2015
SUBJECT: Public Comments
Attached, please find my prepared remarks for the FACA meeting on JUL 27, 2015.
Dayne DuVall, LMT, CAed, CRTS
Chief Operating Officer
National Certification Board for Alzheimer Care
Again, I want to commend the Council on its recommendations to "prepare a workforce that is competent to deliver care to persons with advanced dementia and their families." This, seemingly, was included in the 2015 Plan Update under Goal 2, Strategy 2.A: Build a Workforce with the Skills to Provide High-Quality Care . Specifically, I think the information presented in several sections about the positive impact of the Geriatric Education Centers (GECs) highlights the great work that these institutes have achieved. As I mentioned in previous comments to this Council, the National Certification Board for Alzheimer Care (NCBAC) was encouraged that there would be a greater focus placed on the "training and education of the direct care workforce and lay/family caregivers".
As many of you know, HHS and HRSA announced on Monday at the White House Conference On Aging a new program that would do away with these GECs and replace them with a new 3-year round of funding entitled "Geriatric Workforce Enhancement Program" (GWEP). I want to draw attention to the fact that this newly-announced funding has excluded many of the current GECs. Two cases in point: South Florida, with its 1.5 million residents aged 65 and older, which includes approximately 215,600 residents, and their care partners, who are believed to have Alzheimer's Disease or a related dementia, will no longer have access to educational funding through GWEP. Additionally, the State of Georgia, no longer will receive funding for its residents through the new GWEP funding. There are many other areas of the country that will not have access to funding for geriatric and Alzheimer/dementia education.
I bring this up so that this Council is aware that 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. Less states and regions received funding. In total 23 of the currently funded GECs did not receive funding from the GWEP funding. I hope that the numbers of healthcare professionals and consumers served that were included in the 2015 Update will continue to improve for the 2016 Update, but I'm afraid the Administration will be forced to put an asterisk after these numbers stating that not all areas of the country benefitted from the GWEP funding.
Thank you, again, for the dedication that each of you brings to this devastating disease, of which the numbers are growing from a national and global perspective. I hope that one day there won't be a need to have these meetings because Alzheimer's disease and related dementias will be health concerns of the past!
APRIL 2015 COMMENTS
DATE: April 28, 2015
SUBJECT: April 28 Advisory Council: Public Comment by Jeffrey Imm
Public Comment by Jeffrey Imm, lead of volunteer human rights group, Senior Lives Matter
My name is Jeffrey Imm, I am a caregiver for my 84 year old mother with Alzheimer's Disease. I thank the Advisory Council for the opportunity to provide public comments, and I thank the Advisory Council for the efforts being made to help those affected by this disease. I am especially encouraged to see the efforts of the Department of Justice, which I once worked for, in seeking to look out for the rights and justice of those impacted by Alzheimer's Disease and Dementia.
However, we are still at the starting gates. Alzheimer's Disease was first described in 1906, over 100 years ago. We still do not have the basic science to know the cause of this, an effective treatment, or a cure. The deliberate strides made to combat this illness need to reflect the reality of the emergency that we are now facing.
We need a renewed, publicly visible sense of urgency to gain cooperation, and to obtain the trust of the American people so that that they will be candid with us and help in clinical trials. They need to believe that we are passionately and urgently looking for answers. The Baby Boomer generation will pose a very significant challenge with over 13 million or more victims of this disease. The reality is that this could be significantly worse than the current projections, especially given the long history of under-reporting on Alzheimer's Disease and dementia.
As the leader of the volunteer human rights group, Senior Lives Matter, I am issuing this Declaration of War on the mass-murdering Alzheimer's Disease, on behalf of the American people and all of our fellow human beings. We need a sense of immediate urgency, which is reflected in our priorities, our funding, decision-making, and most of all, our actions as a nation. If it will take decades to find a cure, then we need to find treatments to allow those affected by this human rights-stealing disease to preserve as much of their Constitutional and human rights as possible, to live their lives with as much normalcy as possible.
If anywhere in America, over 5 million of our fellow citizens were being killed, stripped of their identities, and denied their human rights and Constitutional liberties, it would be a state of emergency. If any enemy of our nation attacked our citizens in such a cruel and merciless manner, it would the top priority of our nation's leadership to use its emergency war powers to do everything possible to defeat such an enemy and such a threat to our national and homeland security. We are in such a state of emergency today. We need urgency and nationwide cooperation to do whatever is necessary to defeat this enemy of our shared human rights and dignity. The worst of the attacks on our nation by Alzheimer's Disease will soon be upon the large Baby Boomer generation. Failure to aggressively act will be surrendering our nation and its values to an enemy that seeks nothing less than total destruction of millions of Americans, their families, their communities, and their economies. We cannot and we must not allow this Alzheimer's Disease to dictate the future of our nation and its people. God Bless America.
Senior Lives Matter
DATE: April 13, 2015
SUBJECT: April 28th Meeting Attendance
Hello. The following people would like to attend the April 28th Advisory Council meeting:
- Yvonne Eisner
- Mark Eisner
- Erika Long
Additionally, attached is Yvonne's two minutes speech she plans on giving during the meeting. Thank you and please do not hesitate to contact me with any comments or questions.
Senior Director, Congressional Affairs
Good Morning, my name is Yvonne Eisner. I would like to thank you and the Care More Medical Group for the opportunity to speak today. I am speaking of my experience as a caregiver for my mother Amelia Simpson who suffered from Dementia.
I cannot remember when I first heard my mother was diagnosed with dementia or when I first saw it written. It just seemed to appear without any official acknowledgement of its existence. In some ways dementia affected me the same way it affected her. Little by little your life changes and you become involved in the problem or issue of the moment and you don't see that you are deeply involved in a very daunting and emotionally draining journey. Vascular dementia slowly shut her physical and mental function.
We were referred to Care More's Mental Health Clinic where Monica Cheng the psychiatric nurse practitioner prescribed medication and referred us to the Brain Health Clinic. The clinic not only treated my mother but in a sense treated me, ensuring I would be able to cope and provide her the care she needed. Unfortunately, mom's condition worsened rapidly and she was not able to fully benefit from the program.
As her caregiver I was at a loss, tending to the day to day issues of caring for my mother that I was not able to understand and or deal with her decline. I could have read all the information available on the internet regarding dementia but I could have not been able to process the information until Dr. Debra Hadden and Amy Pound, MSW of the Care More Brain Health Clinic explained it. It was then that I understood the reasons for her behavior. They also taught me how to understand the disease and take better care of her.
Dr. Hadden and Amy, educate patients, family and caregivers on what the disease is, how to cope with it and most importantly provide support. The three Brain Health Classes provided are Disease Management for basic understanding of her individual case; how the dementia affected her ability to swallow and walk and the nuance of dementia such as personality traits can be exaggerated which was making her difficult to deal with and care for. Safety issues of dementia, which had we attended sooner could have avoided urgent care visits and Legal Issues of Dementia, the importance of an advanced directive and power of attorney for health care
This leads me to an example I would like to provide of why educating the patient, family and caregivers early is extremely crucial. My mom was experiencing shortness of breath. She was tested for blockages. The test was inconclusive, the shortness of breath continued. I thought the shortness of breath was minimal and might actually be anxiety. What she was experiencing did not interfere with her quality of life but stents were placed in her arteries. The procedure itself went well, but she lost a lot of blood and needed a transfusion, upon being discharged she had a seizure and was then admitted for observation. If there had been a protocol in place where the Brain Health Clinic had been in the loop, the procedure may have not taken place and she would not have had to experience that ordeal, which was very traumatic for her and me.
Early detection and education is so crucial not only the reasons I mention but mostly to provide the patient with the best quality of life during their last years by educating the family and caregivers to develop the coping skills necessary to care for the patient. Before being a part of the Brain Health Clinic I wasted so much time and energy attempting to reason with her, only to increase her anxiety and paranoia. I worried, cried and became so stressed that I was considering the possibility of admitting her into a nursing home. Something I never wanted for my mother.
Please understand this is very personal to me because if it were not for the support of the Brain Health Clinic I would have not been able to keep my mom at home. So if you can please put yourself in my place and see that without this program my mother would have spent her last year or years living with and being cared for by strangers.
I would like to close this by expressing my most sincere wish. I hope that the words I and speak will lead to a protocol that would include early detection of dementia and Alzheimer's to be placed on the annual physical exam, where a patient can be referred to the Brain Clinic for further evaluation. In the event that dementia or Alzheimer's wasn't detected at least it will bring awareness to the patient and family. In the event that it is, it will provide education of the disease, knowledge of how to handle it and the support to do it successfully.
FEBRUARY 2015 COMMENTS
DATE: February 26, 2015
SUBJECT: New video
Below is a link for a YouTube video I created. Maybe it could be helpful to your case. Feel free to share.
DATE: February 26, 2015
SUBJECT: What are we waiting for
What are we waiting for? This was just shared with me in a news article. Why does it take so long for us to just make the awareness? They had put this together in such a short time. We just keep talking. It's time to take action.
One million Dementia Friends The biggest ever social action movement to change perceptions of dementia happened on 21st February, celebrating creating one million Dementia Friends. Just over two years since it was launched, Alzheimer's Society's Dementia Friends programmeis now transforming the way the nation thinks, talks and acts about the condition. Dementia Friends is one of the many ways that Alzheimer's Society is changing the lives of people with dementia for the better. As well as the development of Dementia Friendly Communities, the charity has committed to spend £100 million on research into care, prevention and a cure over the next 10 years. With nearly two thirds of people with dementia experiencing loneliness and almost half reporting to have lost friends after their diagnosis, Dementia Friends was launched in February 2013 to tackle the stigma and lack of understanding which means that many people with the condition can face social exclusion. The initiative, which is jointly run with Public Health England and funded by the Cabinet Office and Department of Health, combines face to face Information Sessions and online videos to help people learn more about dementia and the small things they can do to make a difference.
This was from another section.
Creating a dementia-friendly generation Young people can play an important role in the creation of dementia-friendly communities. Not only do a third of young people know someone with dementia, but they are the leaders, employers, researchers, carers and adults of tomorrow. Increasing young people's awareness can help reduce stigma and help people to live well with dementia now and in the future. Alzheimer's Society is encouraging all schools and youth groups to include dementia awareness in their activities, to help us create a dementia-friendly generation. The new
DATE: February 4, 2015
SUBJECT: Comments on recommendations from IOM Advanced Dementia Expert Panel Meetings
Attached please find written comments in response to the recommendations made to the NAPA Council from the IOM Advanced Dementia meetings. I was pleased to be an observer at the meetings on behalf of AFTD and the individuals with FTD and their families whom we represent.
Thank you for your efforts and those of all the council members.
We would like to thank and commend Co-chairs Laurel Coleman, M.D., and Susan Mitchell, M.D. as well as the staff of Institute of Medicine, for inviting us to the recently concluded series of meetings on advanced dementia care. Observing the discussions on research, innovative program models and policy was stimulating, and reflected a deep commitment on the part of the presenters and IOM to promoting person-centered dementia care. The Association for Frontotemporal Degeneration (AFTD) strongly supports the resulting recommendations for the 2015 update of the National Plan to address Alzheimer's disease, developed in consultation with the experts invited to speak at the IOM meetings, and presented on January 26 by Dr. Mitchell and Laurel Coleman, M.D. Chair of the clinical care sub-committee of the NAPA advisory council.
Inasmuch as the National Alzheimer's Plan defines "Alzheimer's disease" to include related disorders, it is important to note that existing research, policy and models of care in advanced dementia focus exclusively on an older adult and frail elderly dementia population. Persons with younger-onset dementias and their families face additional complex needs throughout the course of the disease, including in advanced stages. To be consistent with the aims of NAPA, any plan for advanced dementia care must therefore address the needs of the entire dementia population, including those affected by rarer, younger-onset disorders, such as frontotemporal degeneration (FTD).
FTD disorders are distinct from elderly dementia and Alzheimer's disease in two important aspects: they have an earlier age of onset; and cause impairment in executive functioning, language and movement, rather than memory. The age of onset is usually between 45 and 65 years but FTD can affect people as early as their 20's. While the aging services network is the principle provider of services needed by people with FTD, individuals and families are routinely denied services because they do not meet age eligibility, criteria and providers do not understand their needs
Recommendations to improve advanced dementia care including access to palliative care and hospice, preparation of a competent workforce, establishment of quality metrics, and leveraging policy and payment mechanisms to ensure high quality, person-centered care are necessary but grounded in elderly dementia and not sufficient to address the needs of younger persons with dementia and their families. For example:
- Hospice criteria for dementia must reflect an understanding of the erratic course of disease and varied end of life symptoms in a younger person with advanced frontotemporal degeneration. Predicting the last six months of life in persons with FTD can be especially challenging; and the lack of specific criteria for appropriately initiating referrals for hospice services means many medical providers and FTD families do not benefit from this important resource.
- Research has shown that the difficulty obtaining a diagnosis of FTD, the early age of onset, and the presence of behavioral symptoms contribute to greater caregiver burden in FTD compared to Alzheimer's disease. Families facing FTD are more likely to be at the height of careers and family life; coupled with a higher burden of disease management, this can easily preempt discussions around plans for future healthcare needs and reduces the use of advanced directives or other tools to clarify vital care choices prior to medical crises.
- Education on the distinct diagnostic, medical and psychosocial characteristics and needs of persons with FTD disorders is sorely lacking and much needed for geriatricians, palliative care physicians, neurologists, psychiatrists, primary care physicians and other healthcare providers who serve people with advanced dementia across federal and state long-term services and supports.
- People with FTD face many difficult care transitions as the disease progresses. Poor coordination of services and the lack of access to appropriate care in the community frequently result in costly psychiatric inpatient admissions, greater use of psychotropic medications and increased utilization of high-cost care in advanced stages of the disease.
Anecdotally, we know that the medical, behavioral and psychosocial needs of persons with younger-onset dementia differ from elderly persons with advanced dementia; yet health policy research initiatives typically focus on an elderly population and exclude data on individuals under 65. Additional mechanisms are needed to fill knowledge gaps and track the functional and cognitive trajectories of people with FTD or other forms of younger-onset dementia in order to fully inform and improve the quality of advanced dementia care.
As the Advisory Council considers the recommendations developed through the advanced dementia meetings at IOM and the important issues surrounding advanced dementia, AFTD implores you to not neglect the needs of people with FTD and other forms of dementia, many of whom are under age 65 and not adequately represented in current thinking about advanced dementia care focused on the elderly population. Some possible mechanisms to ensure this broader perspective are:
- Include representatives from FTD and other younger-onset dementias in the development and implementation of the goals and strategies in the National Plan to Address Alzheimer's Disease to improve care in advanced dementia
- Promote initiatives to fund and conduct research into the health care utilization of persons under age 65 with dementia and develop innovative models of care for persons with advanced younger-onset dementia.
- Expand and develop services under Title III of the Older Americans Act to include people with younger-onset dementia.
JANUARY 2014 COMMENTS
DATE: January 27, 2015
SUBJECT: Response for NAPA meeting 1-26
I really hate to write these letters but after watching the meeting yesterday I got so frustrated for two reasons. I will only address commitment to this vision for now. I have made many points in my previous emails. Many of these observations pertained to just a few individuals, but sadly I must address the committee as a whole. I do have to say I have seen some great changes in the approach of many of the members and it seems most are now more aware of what they can do. It was so great to see that yesterday.
While I do not want to single in on one person, someone made a comment yesterday as to why something could not be done. They were putting premature limits on the committee by assessing outcomes as they pertain to their existing job resources. I believe Shari jumped in and intervened that we do need to look at it differently. I do not recall the exact words said but just the overall messaging.
My message to that person is that it is imperative that you separate your role on the committee from your everyday position and self-imposed limitations. You need to ask yourself if you are helping or hurting the outcome of the other members who are trying to work so hard for the new vision for the president and congress.
Until we stop this kind of thinking we cannot do right for those living with dementia.
DATE: January 26, 2015
SUBJECT: won't be able to attend
My mom fell yesterday and shattered/dislocated her shoulder, requiring surgery later today. I am working from home to be available to my mom and stepdad for updates and to help advocate as needed.
So, I won't be there in person to make a public comment. If possible, please read my comment, which is pasted below:
Comment by Sue Peschin, President and CEO, Alliance for Aging Research.
I fully support the suggestion by Sheila Burke to move the time frame for National Plan recommendations back to October to give more time to the process. While HHS works hard to get the slides up, seeing them only two days before they are presented hardly provides enough time for thoughtful deliberation, let alone for council members to vote on recommendations that will potentially affect millions of Americans.
On the Long-term services and supports subcommittee recommendations:
The LTSS recommendations are way too general and provide no benchmarks for which agency should specifically execute which task, what the timing of each task should be, or how much federal and/or private funding may be needed. For example, one of the recommendations states that HHS should support state initiatives for dementia-capable systems by "Providing coordinated Alzheimer's disease related activities across state agencies through an identified state lead entity with adequate funding from Congress." What activities should they coordinate? Though which agencies? What would "adequate funding from Congress" mean? The CMS recommendations in particular have tremendous potential but they are not properly mapped out. For example, what needs to happen for CMS to allow for care planning when the patients isn't there--do we need a new code for providers to have time to counsel/train family or is there an existing code that could be expanded?
Big kudos for #5 that calls on Congress to fund the recommendations and even mentions an amount for one of them.Please add the Lifespan Respite Program to calls for funding the ADSSP and NFCSP programs. Estimates for these can be found in the authorizing language and/or with caregiving groups.
On the advanced dementia work:
This work is very impressive and so important. My only comment here is that this community, knowing what we know about Alzheimer's disease and related dementias, has something very important to say to policymakers about the value of giving people with serious illness the freedom to make more informed choices about their care, and the power to have those choices honored. So, whether we might support The Care Planning Act, introduced by Senators Isakson and Warner, and/or the Advanced Planning and Compassionate Care Act, introduced by Senators Collins and Rockefeller--we should include a bold step here that advanced care planning needs to start sooner, along with the patient's healthcare professionals, and it should be covered by Medicare and Medicaid. A lot of complications of care mentioned here could be avoided if more folks had a plan. So, please consider including a bigger picture policy recommendation to help support all of the other great recommendations you suggest.
On clinical care:
A while back, Helen LaMont asked the question about whether HHS should consider creating a public education campaign about recognizing cognitive impairment and getting checked out. It would be great to see something in the 2015 Plan about engaging CMS and CDC in a campaign to encourage providers to look for it as part of the Wellness Visit, and for families to flag problems. The Wellness visit has been in existence for 4 years now and very little to nothing has been done to take advantage of it and get more folks identified. If we said 50 percent of people with CVD were missed by clinicians each year, heart groups would hit the roof.
It's wonderful that you included a request. Policymakers want to know how much these dementia diseases cost for research, clinical care, and long-term care. The professional judgment budget happened because feds from NIH would not provide members of Congress with a straight answer about how much was needed.
ASK FOR WHAT YOU NEED. BE BOLD AND BE SPECIFIC. LOTS OF PEOPLE ARE COUNTING ON YOU. THANK YOU FOR WHAT YOU ARE DOING!
No worries if it cannot be read. I hope all goes well with the meeting and that you all stay warm and safe today.
Susan Peschin, MHS
President and CEO
Alliance for Aging Research
DATE: January 22, 2015
SUBJECT: Comments to NAPA Advisory Board
Please see the attached comments from the Alzheimer's Foundation of America to the NAPA Advisory Board. Please let me know if you have questions or need additional information.
Vice President, Public Policy
Alzheimer's Foundation of America
NATIONAL PLAN GOALS: TIME TO MAKE THEM HAPPEN
I. NAPA Accomplishments
Since the National Plan to Address Alzheimer's Disease was first released,1 there has been progress in establishing a cohesive and comprehensive national strategy to fight the illness. Strides have been made in federal agency interaction and coordination, increasing educational materials and outreach and promoting awareness through social and traditional media. National action has spurred movement at the state level and a vast majority of states now have their own plans to coordinate resources and services, often resulting in dynamic care delivery programs that provide better outcomes at lower costs.
Yet, more must - and needs - to be done. Many of the action steps taken have required little resources. While it's a start, these are merely low-hanging fruit and the heavy lifting remains. In addition to increased federal resources, we need better tools are needed to ensure early and accurate diagnosis of dementia. New, coordinated care delivery models that are more efficient and yield better outcomes must be adopted nationally. States need to be more fully engaged and the US needs to further its commitment to international efforts.
As the NAPA Advisory Board continues its work, we must move beyond the edges of policy. While the national Alzheimer's plan established lofty, but achievable goals, sufficient resources are needed if we are to make real progress in eradicating this devastating brain disorder and developing a cure or meaningful treatment by 2025. Further, federal health programs need to remove barriers to access and recognize the growing need for custodial and long-term care services and supports for individuals living with dementia and their family caregivers.
Solutions are readily available to reduce costs of care while promoting better outcomes for individuals with dementia and their family caregivers. The national Alzheimer's plan already contains a number of such recommendations, which, if implemented could save significant resources. In addition national stakeholders, including the Alzheimer's Foundation of America (AFA), have contributed constructive comments, ideas and proposals for the NAPA Advisory Board to consider when developing their annual report for HHS.2
AFA would like to build upon these past proposals and offer the following new recommendations to further the process and ensure implementation of the national Alzheimer's plan on a credible pathway toward achieving its core objectives. These new proposals, moreover, are not costly, can be quickly implemented and will have an immediate, positive impact in achieving the objectives of the national Alzheimer's plan. They include:
- Calling on CMS to develop and execute a timeline in which they will nationally adopt and broadly implement innovative care delivery models.
- Encouraging states to develop their own Alzheimer's plans and increase states' involvement in the national Alzheimer's plan.
- Promoting and expanding opportunities for cognitive memory screening.
- Increasing the federal commitment to international efforts fighting Alzheimer's disease.
- Increasing resources for Alzheimer's disease research and caregiver supports and services.
II. AFA Recommendations
Adopting innovative care delivery models, expanding transitional care programs, and expanding caregiver supports can reduce hospitalizations, decrease emergency room visits and delay costly nursing home placement.
As outlined in AFA's "Cost of Care: Quantifying Care-Centered Provisions of the 'National Plan to Address Alzheimer's Disease" report,3 recommendations such as medical homes and enhanced caregiver training and supports, will provide significant cost savings--more than $110 billion during a 10-year period--while promoting better health outcomes for individuals with Alzheimer's disease, and improving quality of life for their caregivers.
An independent study of a Minnesota dementia caregiver program found that, if fully implemented, the program would save the state nearly $1 billion over 15 years,4 further underscoring the findings of AFA's "Cost of Care" report.
In the coming year, CMS is expected to release data from demonstration projects, including several involving dementia care delivery models. This should provide the necessary evidence for federal health programs to move ahead with alacrity to implement such programs nationwide. As demonstrated in Minnesota, small investments in supports that provide caregiver tools and strategies yields major savings and better outcomes.
AFA, therefore, urges the NAPA Advisory Board to recommend that CMS develop and execute a timeline in which they will nationally adopt and broadly implement the innovative care models and enhanced caregiver support recommendations that are included in the national Alzheimer's plan.
In an effort to help advance the goals of the national Alzheimer's plan at the state level, the National Alliance for Caregiving and AFA released a white paper that examines the scope of the Alzheimer's crisis, and the need for wide-scale implementation of state plans that address supportive services specific to state localities.5 The report offers six key recommendations, applicable to both new and existing state plans:
- Establish and maintain a task force of Alzheimer's disease stakeholders, including government officials, community groups, individuals with dementia, and family caregivers.
- Assess the ability of the state Alzheimer's disease community to support diagnosed individuals and their families.
- Develop a state plan for Alzheimer's disease that includes goals specific to the state population, and outlines measures to track progress.
- Keep stakeholders engaged in the design, implementation and evaluation of the plan.
- Recognize that state plans are "living documents," and modify them, as appropriate, over time.
- Learn from the successes and challenges of other states and the national plan.6
States are the often called the laboratory of democracy7 and their freedom to innovate, customize and target policy can produce effective models, some of which can be replicated on both state and federal levels. Yet, there is no process or forum to share successes, discuss failures and identify gaps in policy. There needs to be greater communication, not only between states, but between states and the NAPA Advisory Board so federal officials can be keyed into valuable input from their efforts.
AFA urges further encouragement of states to develop their own plans, increase states' involvement with the NAPA Advisory Board and establish a forum within the National Governors Association or National Council on State Legislatures for states to share best practices and successful recommendations with their peers.
Misdiagnosis of Alzheimer's disease and related dementias is already rampant, leading to unnecessary costs and, most importantly, risks to individuals. Memory screening is necessary, therefore to ensure a timely and accurate diagnosis of Alzheimer's disease. With early detection, individuals with dementia can receive available therapy earlier in the disease progression when most available treatments for Alzheimer's disease are most helpful. Early identification allows optimal therapy with available and emerging medications.
The Food and Drug Administration (FDA), moreover, is focusing more clinical research on individuals earlier in the disease process. AFA can appreciate the difficulty in developing meaningful diagnostic criteria for preclinical Alzheimer's disease. Yet, cognitive screening can help identify pre-symptomatic individuals and others with mild cognitive impairment who can populate these necessary and vital drug trials that give hope to millions with dementia.
Despite these advantages, the U.S. Preventive Services Task Force (USPSTF) has failed to recognize cognitive screening as necessary for older adults.8 While USPSTF found adequate evidence that some screening tools have sufficiently high sensitivity and specificity to be clinically useful in identifying dementia, they found inadequate direct evidence on the benefits and harms of screening for cognitive impairment and of non-pharmacologic interventions.9
Memory screening is gaining ground thanks to increased awareness about Alzheimer's disease, as well as the Medicare Annual Wellness Visit, which includes a cognitive assessment.10 In addition, during AFA's 2014 National Memory Screening Day this past November, more than 6,000 sites across the country provided free confidential screenings, as well as education on good brain health, to tens of thousands of participants.
AFA urges the NAPA Advisory Board to further promote and expand opportunities for memory screening. The NAPA Advisory Board should call for more research on cognitive screening and its impact on individual care choices and identify new technologies that can test and track cognitive functioning.
There has been considerable movement in the worldwide effort to fight Alzheimer's disease. Since the G8 Summit held in London in late 2013, there has been a more coordinated international effort in combating dementia. The G-7 has committed to identifying a cure or a disease modifying therapy by 2025 and to increase funding for dementia research.11 To this end, international policy makers have met at various legacy meetings throughout 2014 (with more scheduled in 2015, including a meeting in February at NIH). In addition, Dr. Dennis Gillings, consultant to the pharmaceutical industry and founder of a drug trial, has been appointed by the UK Prime Minister as the World Dementia Envoy.12
As a leader in Alzheimer's disease research, the US needs to continue its commitment to these international organizations. The sharing of research data, best practices and study results will speed drug development and help achieve the shared 2025 goal. The NAPA Advisory Board acknowledges this need and, in the past year, has heard from international Alzheimer's advocates and has been briefed on worldwide efforts.
It is imperative, therefore, that the 2015 NAPA Advisory Board recommendations include greater commitment to these international efforts. In addition, representatives of the State Department be invited to join the NAPA Advisory Board.
Without adequate resources, getting to the 2025 NAPA goal will be arduous and success will be put in doubt. Investment in promising research is imperative to meet these ambitious, yet achievable goals. Despite the need, spending on Alzheimer's disease research lags far behind research resources spent on other major diseases. In FY 2013, the National Institutes for Health (NIH) spent approximately $504 million for Alzheimer's disease, while $5.2 billion went to cancer research; $2.9 billion for HIV/AIDS; $2 billion for cardiovascular disease; $1.2 billion for heart disease; and more than $1 billion for diabetes.13 Without the same commitment for Alzheimer's disease, costs will continue to rise at unprecedented rates, promising research will remain unfunded, and hope will be diminished for the millions living with dementia.
The NAPA Advisory Board needs to recommend Congress "double down" on Alzheimer's disease research to $1 billion in FY'16 and work with appropriating committees in Congress on a pathway to get Alzheimer's disease research funding at $2 billion by the end of the current decade.
These are challenging times, and limited resources call for creative solutions. Yet, we cannot simply maintain the status quo. Investment in research and caregiving services is the only way to ensure that we, as a nation, can overcome the growing human and fiscal crisis that is Alzheimer's disease. An international, comprehensive and coordinated effort is needed to combat the growing worldwide crisis of dementia impacting individuals and families regardless of race, creed, color or national origin.
The recent worldwide effort against Ebola can be instructive in developing a strategy that can contain and ultimately defeat the disease. In the case of Ebola, after an initial period of unpreparedness, economically advantaged nations took action and developed an international strategy to control the outbreak and develop a vaccine. For its part, the US will spend $5.2 billion in FY'15 alone on care, prevention and development of a viable vaccine to fight Ebola. While it is far from certain whether this current Ebola outbreak can be contained; the international commitment to adequately respond to the crisis, with proper initial resources, cannot be questioned.
Unlike Ebola, however, we know we are facing a growing worldwide dementia crisis and its impact on society is arguably greater. The national Alzheimer's plan sets a stage and provides guideposts and impactful endpoints. Yet, the missing piece is the necessary investment that can change trajectory of this disease and transform outcomes. Progress has already been made in several areas of the plan and some modest goals have been completed, yet we are nowhere near the ultimate prize of finding a treatment or cure, and our time to meet the 2025 goal is ticking away. Now is our time to make it happen, or chances are it never will.
- See, http://aspe.hhs.gov/daltcp/napa/natlplan.shtml. As required by statute, the plan has been annually updated in 2013 and 2014.
- See, AFA publications: The Time to Act is Now (http://www.alzfdn.org/Publications/TheTimeToActIsNow.pdf) and Time to Build (http://alzfdn.org/Publications/TimeToBuild_final.pdf).
- See, http://www.alzfdn.org/documents/Quantifying-Care-Centered-Provisions-of-the-National-Plan-to-Address-Alzheimers-Disease.pdf.
- K. Long, et. al., Estimating The Potential Cost Savings From The New York University Caregiver Intervention In Minnesota, Health Affairs, vol. 33 no. 4 596-604 (April 2014) (http://content.healthaffairs.org/content/33/4/596.full?ijkey=81Sa5vdZNrEvc&keytype=ref&siteid=healthaff).
- From Plan to Practice: Implementing the National Alzheimer's Plan in Your State (July 2014) (http://www.alzfdn.org/documents/AlzheimersStatePlans-7-21-14.pdf).
- U.S. Supreme Court Justice Louis Brandeis in New State Ice Co. v. Liebmann to describe how a "state may, if its citizens choose, serve as a laboratory; and try novel social and economic experiments without risk to the rest of the country."
- Final Recommendation Statement Cognitive Impairment in Older Adults: Screening (http://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/cognitive-impairment-in-older-adults-screening#consider).
- As an example, over 85,000 individuals participated in AFA's 2012 National Memory Screening Day. Over 800,000 Medicare beneficiaries took the Annual Wellness Visit, which includes cognitive screening, as of June, 2011. California Health Advocates, Understanding Medicare's Annual Wellness Visit: Frequently Asked Questions (http://www.cahealthadvocates.org/news/basics/2011/wellness.html).
- G8 Dementia Summit Declaration (issued Dec. 11, 2013) (http://www.gov.uk/government/publications/g8-dementia-summit-agreements/g8-dementia-summit-declaration).
- See, http://dementiachallenge.dh.gov.uk/2014/02/28/dennis-gillings-appointed-world-dementia-envoy/.
- See, Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) (http://report.nih.gov/categorical_spending.aspx).
DATE: January 20, 2015
SUBJECT: Public comment for the record
I will be reading the following public comment out, but can you add it to the archives?
Mary, 57 year of age, has been my domestic partner for the past 9 years. In October of 2012, Mary was diagnosed with Posterior Cortical Atrophy (PCA), a relatively-rare variant of AD.
PCA is a progressive degenerative condition involving the loss and dysfunction of brain cells particularly at the back (posterior) of the brain, where visual processing takes place. In the vast majority of cases, this loss of brain cells is associated with the same pathological brain changes seen in typical Alzheimer's disease, but in addition to memory issues, PCA affects how the brain interprets what the eye sees. It also impacts the ability to access the right words from the brain, making speech difficult.
While Mary's eyes are anatomically-normal, her response to what the eye sees is severely degraded. As examples, Mary can see a chair, but can't figure out how to get into it. She can see a staircase, but has difficulty figuring out how to go up or down. She can see objects in her path but still trips over them. She is effectively becoming "brain-blind"! This horrendous disease has progressed quickly to a point where she is no longer able to care for herself - she needs assistance in dressing, bathing, toileting, and most other ADLs.
Prior to the onset of early symptoms, Mary owned a successful yoga and health business in the Allentown ,PA area for over 16-years. She also ran Yoga and Health programs for the faculty at Lehigh University . While running her business, and as a single mom, she raised her daughter - now 27 and a successful engineer.
When Mary was in her early 50's, she decided to expand her knowledge of healthcare, and pursued a Master of Science Degree in Counseling Psychology. She earned this degree from the Pennsylvania College of Osteopathic Medicine with top honors, and this was only 5 years ago! Today, Mary can barely read!
Next month, Mary will be entering a residence for people with dementias. Sadly, I am no longer able to provide her the level and quality of care she needs and deserves, but will continue to be her advocate and oversee her well-being.
Of major concern to us is the financial component of her continuing care. I was appalled to learn of congress's recent plans to cut Medicare Disability benefits, apparently as a response to significant fraud in the system. Why not address the fraud issue separately, and allow those who really need the benefit to continue receiving it? I have some ideas on how this could be accomplished, such as requiring that the recipient has a disease that is incurable and/or terminal, and require validation from at least 3 physicians. I believe this alone would eliminate much of the fraud. I would gladly work with your committees on this subject as appropriate.
Thank you for your consideration, and the work you are doing on behalf of those 5+ million people in the US - like Mary - suffering from ADRD.
Domestic Partner and Caregiver for Mary
DATE: January 15, 2015
SUBJECT: January 26 Meeting Attendance
During your mid-morning session of public comments, I am requesting to offer comments relating to my domestic partner, Mary Rosenberger.
Five years ago, shortly after Mary (at age 52) earned her Masters degree in Counseling Psychology, she was diagnosed with a rare variant of Alzheimer's Disease, called Posterior Cortical Atrophy. This disease not only affects memory and cognition, but visual and auditory processing. When she hears or sees something, her brain isn't able to respond...so simple tasks like walking up and down steps, getting into or out of a chair, putting clothes on, etc, etc, have become impossible, for her to do without assistance. Sadly, her disease has progressed very quickly...to a point where she will soon have to move to a residence that can provide the 24/7 care she needs.
Mary is on social security disability, and it is distressing to hear that congress is looking at cutting back these benefits. This would be extremely troubling for Mary, as she is counting on this benefit to cover the high cost of her care.
Unfortunately, we will not be able to attend the meeting in person. Might I be able to present using skype or facetime, or participate online in any other way?
Thank you for your consideration.
DATE: January 14, 2015
SUBJECT: Alzheimer's Disease
Alzheimer's disease is the most common form of dementia, a group of disorders that impairs mental functioning. (Dementia literally means loss of mentation, or thinking.) At the moment, Alzheimer's is progressive and irreversible.....
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