ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Public Comments on Advisory Council Meeting, October 2015
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PLEASE NOTE: The Public Comments included here are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in this project.
T. Buckley | 10-23-2015
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.
E. Sokol | 10-21-2015
M. Janicki | 10-21-2015
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:
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.
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.
M. Sharp | 10-20-2015
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.
I. Kremer | 10-20-2015
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):
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.
D. DuVall | 10-20-2015
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.
C. Whiting | 10-19-2015
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.
M. Ellenbogen | 10-19-2015
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.