ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Public Comments on Advisory Council Meeting, July 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.
S. Peschin | 07-24-2015
I've attached my comment for Monday.
Thanks and have a good weekend!
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.
W. Lum | 07-24-2015
Attached please find NAPCA's comments for Monday's meeting. Thanks again for working with us on this issue!
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.
M. Leahy | 07-24-2015
Attached please find Matt Sharp's comments.
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.
M. Hogan | 07-23-2015
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:
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.
K. O'Donnell | 07-22-2015
I have attached the public comments I plan to share at the Advisory Council meeting on July 27th, 2015.
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.
I. Kremer | 07-22-2015
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!
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.
M. Sterling | 07-22-2015
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.
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.
M. Ellenbogen | 07-22-2015
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.
C. Rodgers | 07-26-2015
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:
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.
K. Love | 07-22-2015
Attached is a copy of my Public Comments for Monday's Advisory Council meeting.
Public Comments to the NAPA Advisory Council
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.
G. Whiting | 07-21-2015
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.
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.
D. DuVall | 07-17-2015
Attached, please find my prepared remarks for the FACA meeting on JUL 27, 2015.
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!