Letter Supporting Alzheimer’s Beneficiary and Caregivers Support Act

2016-08-18T09:33:00+00:00August 18th, 2016|Letters 114th|
   

*a copy of this letter was also sent to the House of Representatives

August 18, 2016

The Honorable Shelly Moore Capito
United States Senate
172 Dirksen Senate Office Building
Washington, DC 20510

The Honorable Debbie Stabenow
United States Senate 
731 Hart Senate Office Building
Washington, DC 20510

Dear Senator Capito and Senator Stabenow:

We write to express our strong support for the Alzheimer’s Beneficiary and Caregiver Support Act (S.3137). The Act would help improve quality of life for people living with Alzheimer’s disease and other forms of dementia, support family care partners, and reduce costs to federal and state health programs.

Your keen understanding of dementia’s enormous personal and societal toll is demonstrated in each of the legislation’s key features. The Act addresses dementia in all its forms including Alzheimer’s disease, vascular disease, Lewy body dementia, frontotemporal degeneration, and mixed etiologies. Equally important, the Act recognizes that a one-size-fits all approach to care and quality of life must become more tailored and responsive to the heterogeneity of people facing dementia including: women, people in medically under-served areas or ethnically and culturally diverse communities, those with intellectual and developmental disabilities, or with younger-onset disease. In that spirit, the bill calls on the Centers for Medicare and Medicaid Services (CMS) to launch pilot projects using a variety of caregiver support services to help people living with dementia stay in their preferred home setting for longer periods of time, resulting in lower Medicare and Medicaid program costs.

Your bipartisan legislation recognizes that targeted counseling and supportive services delivered to family care partners can delay the use of institutional care. Under the Act, CMS would test such supportive models for family caregivers of Medicare beneficiaries diagnosed with dementia. The models would include individual and family counseling sessions, followup assessments, support groups and ad hoc counseling or consultations, depending on the health of the applicable Medicare beneficiary. One such model, evaluated over more than two decades in New York and replicated in other settings, demonstrated that targeted supports enable people with dementia to remain at home longer – averaging a year and-ahalf longer — than people whose care partners did not receive such supports.

This is a time of great and deserved hope as Congress and the National Institutes of Health have begun to address chronic underfunding of research aiming for scientific breakthroughs to prevent or stop dementia in its tracks by 2025. People living with dementia want breakthroughs and many participate in clinical trails to advance the science. But people living with dementia today cannot rest all their hopes in what science will produce in the coming years. They need what the Act can deliver now. The Act strengthens the ability of family care partners to improve quality of life for people facing dementia today. The Act strengthens the LEAD Leaders Engaged on Alzheimer’s Disease ability of people living with dementia and their families to access tailored, effective, personcentered services and training where and when it matters most.

We all know the public health, budgetary and macro-economic statistics about dementia. All too many people know first-hand the individual human toll. You have been vocal, powerful and effective voices for millions of people across this country whose personal stories demand attention and demand change. The Act gives voice to the fundamental truth that people living with dementia need not only hope for the future but also improved quality of life today.

Thank you for considering our views and for your commitment to overcoming Alzheimer’s
disease and other forms of dementia. Please contact Ian Kremer, executive director of Leaders Engaged on Alzheimer's Disease (the LEAD Coalition), ikremer@leadcoalition.org or (571) 383-9916, with questions or for additional information.

Sincerely,

National Committee to Preserve Social Security and Medicare
Abe’s Garden
Academy of Radiology Research
ACT on Alzheimer's
Activists Against Alzheimer’s
African American Network Against Alzheimer's
Paul S. Aisen, MD (Keck School of Medicine of USC, Alzheimer's Therapeutic Research Institute*)
Allergan
Alzheimer's & Dementia Alliance of Wisconsin
Alzheimer’s Foundation of America
Alzheimer’s Greater Los Angeles
Alzheimer’s Mississippi
Alzheimer’s Orange County
Alzheimer’s San Diego
Alzheimer's Tennessee
AMDA – The Society for Post-Acute and Long-Term Care Medicine
American Association for Geriatric Psychiatry
ARGENTUM | Expanding Senior Living
Laura D. Baker, PhD (Wake Forest School of Medicine*)
Banner Alzheimer’s Institute
David M. Bass, PhD (Benjamin Rose Institute on Aging*)
Beating Alzheimer's by Embracing Science
Benjamin Rose Institute on Aging
B’nai B’rith International
Soo Borson MD (University of Washington
Schools of Medicine and Nursing*)
James Brewer, M.D., Ph.D. (UC San Diego and Alzheimer’s Disease Cooperative Study*)
BrightFocus Alzheimer’s Disease Research
Christopher M. Callahan, MD (Indiana University Center for Aging Research*)
Caregiver Action Network
CaringKind
Center for Alzheimer Research and Treatment, Harvard Medical School
Center for BrainHealth at The University of Texas at Dallas
Sandra Bond Chapman, PhD (Center for BrainHealth at The University of Texas at Dallas*)
ClergyAgainstAlzheimer's
Coalition for Imaging and Bioengineering Research
CorTechs Labs
Critical Path Institute/ Coalition Against Major Diseases
Cure Alzheimer’s Fund
Darrell K. Royal Fund for Alzheimer's Research
Dementia Alliance International
Dementia Friendly America
Department of Neurology, Washington University School of Medicine
Rachelle S. Doody, MD, PhD (Baylor College of Medicine*)
Gary Epstein-Lubow, MD (Alpert Medical School of Brown University*)
Fujirebio
Sam Gandy, MD, PhD (Icahn School of Medicine at Mount Sinai*)
Joseph E. Gaugler, Ph.D. (School of Nursing, Center on Aging, University of Minnesota*)
Geoffrey Beene Foundation Alzheimer’s Initiative
Georgetown University Medical Center Memory Disorders Program
Georgia Institute on Aging
Gerontological Society of America
Laura N. Gitlin, PhD (Johns Hopkins School of Medicine*)
Lisa P. Gwyther, MSW, LCSW (Duke University Medical Center*)
David Holtzman, MD (Washington University School of Medicine, Department of Neurology*)
Huffington Center on Aging
Indiana University Center for Aging Research
Janssen R&D
Kathy Jedrziewski, PhD (University of Pennsylvania*)
Johns Hopkins Memory and Alzheimer's Treatment Center
Johns Hopkins School of Nursing Center for Innovative Care in Aging
Katherine S. Judge, PhD (Cleveland State University*)
Keck School of Medicine of USC, Alzheimer's Therapeutic Research Institute
Walter A. Kukull, PhD (School of Public Health, University of Washington*)
LatinosAgainstAlzheimer's
Latino Alzheimer’s and Memory Disorders Alliance
LeadingAge
Lewy Body Dementia Association
Linked Senior, Inc.
LuMind Research Down
Syndrome Foundation
Lundbeck
Lutheran Services of America
Kostas Lyketsos, M.D., M.H.S. (Johns Hopkins Memory and Alzheimer's Treatment Center*)
David G. Morgan, PhD (USF Health Byrd Alzheimer's Institute*)
Mount Sinai Center for Cognitive Health
National Alliance for Caregiving
National Asian Pacific Center on Aging
National Association of Activity Professionals
National Association of Nutrition and Aging Services Programs
National Association of States United for Aging and Disabilities
National Caucus and Center on Black Aged, Inc. (NCBA)
National Consumer Voice for Quality Long-Term Care
National Council for Behavioral Health
National Down Syndrome Society
National Hispanic Council On Aging (NHCOA)
National Task Group on Intellectual Disabilities and Dementia Practices
Neurocern
Neurotechnology Industry Organization
NFL Neurological Center
NYU Alzheimer's Disease Center
NYU Langone Center on Cognitive Neurology
NYU Langone Medical Center
Noah Homes
OWL-The Voice of Women 40+
Pat Summitt Foundation
Pioneer Network
Piramal Imaging S.A.
Planetree
Presence Care Project
Prevent Alzheimer’s Disease 2020
Eric Reiman, MD (Banner Alzheimer's Institute*)
ResearchersAgainstAlzheimer's
Stephen Salloway, M.D., M.S. (The Warren Alpert Medical School of Brown University*)
Second Wind Dreams, Inc./ Virtual Dementia Tour
Reisa A. Sperling, MD, MMSc (Center for Alzheimer Research and Treatment, Harvard Medical School*)
Rudolph Tanzi, PhD (Department of Neurology, MGH/Harvard Medical School*)
The Association for Frontotemporal Degeneration
The Eden Alternative
The Evangelical Lutheran Good Samaritan Society
The Youth Movement Against Alzheimer’s Geoffrey Tremont, Ph.D., ABPPCN (Alpert Medical School of Brown University*)
R. Scott Turner, MD, PhD (Georgetown University Memory Disorders Program*)
UsAgainstAlzheimer’s, LEAD Coalition coconvener
USF Health Byrd Alzheimer's Institute
Volunteers of America, LEAD Coalition coconvener
Nancy Wilson, MA LCSW (Baylor College of Medicine*)
WomenAgainstAlzheimer's

* Affiliations of individual researchers are for identification purposes only and do not necessarily represent the endorsement of the affiliated institution. http://www.leadcoalition.org Leaders Engaged on Alzheimer’s Disease (the LEAD Coalition) is a diverse national coalition of member organizations including patient advocacy and voluntary
health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, and home and residential care providers, and biotechnology and pharmaceutical companies. 

The LEAD Coalition works collaboratively to focus the nation’s strategic attention on dementia in all its causes — including Alzheimer’s disease, vascular disease, Lewy body dementia, and frontotemporal degeneration — and to accelerate transformational progress in detection and diagnosis, care and support, and research leading to prevention, effective treatment and eventual cure. One or more participants may have a financial interest in the subjects addressed.