Co-Authored by Michael B. Friedman, MSW and Constantine G. Lyketsos, M.D.
Over the next quarter-century the population of people 65 and older will double. As this happens, the number of people with Alzheimer's or other dementias will more than double because people 85 and older are the fastest-growing portion of America's aging population. In response to this fact, the National Alzheimer's Project Act was signed into law at the beginning of 2011. The act calls for the development of a National Alzheimer's Plan.
We are, of course, pleased that our nation is preparing to meet the needs of millions of people who will have dementia over the coming decades and their family caregivers. We share the hope that scientific breakthroughs will eventually enable us to prevent, cure, or slow the progression of dementia.
But we are disappointed in the draft plan, which largely ignores the psycho-social dimensions of dementia and thereby misses opportunities to improve quality of life both for those with dementia and for their family caregivers.
There are three major inadequacies with the draft plan.
1.) Imbalance of Use of Funding: The draft plan does not specify how much funding will be available to deal with Alzheimer's and other dementias in the future, but it does provide some information about new federal funding that has been committed prior to the completion of the plan. $156 million will be made available for the five major goals of the plan. Of this, $130 million (83 percent) is designated for one goal -- research. $26 million is designated for enhanced services and supports, provider education, public education, and improved data collection. Of this, $10.7 million is designated for improved care and treatment of 5.4 million people who currently have dementia and their family caregivers. That's less than $2 per person. This is simply not adequate.
2.) Inadequate Attention to Research About, and Implementation of, Psychosocial Interventions: The clear tilt of the draft plan is towards research to find a cure for Alzheimer's. It seems to focus heavily on bio-medical research and the development of effective pharmacological treatments. Prevention, cure, or effective slowing of the progression of dementia are, of course, much to be desired. But we believe it is unlikely that this will be achieved by 2025 -- the goal of this plan. Even if it is, the millions of people who now have or will develop dementia prior to that will not be helped at all.
It is well established that psychosocial interventions can do much to improve the quality of life of people with dementia and their family caregivers.[1] It also helps them live longer in their homes. But we need to know more -- to develop better evidence-based practices especially about how to translate their use into the health care system. When a full research plan is developed, it is critical that include much more emphasis on psycho-social interventions
Unfortunately, a number of psycho-social interventions are not covered by Medicare, Medicaid, or other health insurance plans. Widespread use of them in the real world will require changes in funding structures.
This is not just the right thing to do. It is likely to save a lot of money by delaying or reducing the need for hospital care or nursing home placement.
Funding and cost-benefits should certainly be included in the final research plan.
3.) Lack of Attention to Mental Disorders Commonly Experienced by People with Dementia and their Caregivers: People with dementia often have co-occurring mental health conditions such as major depression, anxiety disorders, or psychosis. Almost all exhibit neuropsychiatric symptoms such as depression, anxiety, apathy, irritability, delusions, hallucinations, agitation, aggression, and sleep disorders.[2] When this happens, those who care for people with dementia turn to mental health providers for help. When appropriately trained, these providers often can provide effective treatment that benefits both people with dementia and their caregivers. Yet, the role of the mental health system is barely reflected in the draft plan.
In addition, family caregivers are at high risk for depression, anxiety, and stress related physical disorders. There are evidence-based family support interventions.[3] The need for supports for family caregivers is noted in the plan, but briefly and with little substance.
Mental disorders and neuropsychiatric symptoms often lead to emergency room visits, hospitalization, and tremendous caregiver stress, and they are a major reason that people with dementia enter nursing homes.
Failure to address issues of mental health will result in continued failure to meet fundamental needs of people with dementia and their families.
We need a National Alzheimer's Plan that reflects the psychosocial/mental health needs of Americans with dementia and their families, and that creates opportunities for them to have a vastly improved quality of life. With adequate investment in psycho-social interventions, life can improve for them. We hope the final plan helps to make this possible.
Michael B. Friedman is the Founder and Honorary Chair of the Geriatric Mental Health Alliance and Adjunct Associate Professor, Columbia University Schools of Social Work and Public Health. Mf395@columbia.edu. Constantine Lyketsos, M.D. is Director, Memory and Alzheimer's Treatment Center, Department of Psychiatry and Behavioral Sciences, Johns Hopkins University. Kostas@jhmi.edu
Endorsed by:
This essay has been endorsed by a significant majority of the national experts on dementia and behavioral health who were convened by the Substance Abuse and Mental Health Services Administration (SAMHSA) in mid-December 2011 to advise SAMHSA regarding its input into the Plan. As of today (April 9, 2012), SAMHSA has not yet released the report of that meeting. Those endorsing this essay are:
Christopher Callahan, M.D.
Director
Indiana University Center for Aging Research
ccallaha@iupui.edu
Richard H. Fortinsky, Ph.D.
Professor, University of Connecticut Center On Aging
Physicians Health Services Chair in Geriatrics and Gerontology
fortinsky@uchc.edu
Laura N. Gitlin, Ph.D.
Professor, Department of Health systems and Outcomes
School of Nursing and School of Medicine
Director, Center for Innovative Care in Aging
Johns Hopkins University
Lgitlin1@jhu.edu
Geri R. Hall, Ph.D., ARNP, GCNS, FAAN
Clinical Nursing Specialist
Banner Alzheimer's Institute
geri.hall@bannerhealth.com
Mark Kunik, M.D., M.P.H.
Professor, Department of Psychiatry and Behavioral Sciences
Baylor College of Medicine
mkunik@bcm.edu
Katie Maslow, M.S.W.
Scholar-in-Residence
Institute of Medicine
kmaslow@nas.edu
Beth Meyer-Arnold, R.N., M.S.
Director, Adult Day Services
Luther Manor
Wauwatosa, Wisconsin
bmeyerarnold@luthermanor.org
Mary Mittelman, Dr. P.H.
Research Professor, Department of Psychiatry
New York University Langone Medical Center
Mary.mittelman@nyumc.org
Catherine Piersol, M.S., OTR/L
Assistant Professor, Department of Occupational Therapy
Clinical Director, Jefferson Elder Care
Jefferson School of Health Professions
Thomas Jefferson University
catherine.piersol@jefferson.edu
Peter Rabins, M.D., M.P.H.
Director, Geriatric Psychiatry Program
Johns Hopkins Hospital
pvrabins@jhmi.edu
Pierre N. Tariot, M.D.
Director
Banner Alzheimer's Institute
Pierre.tariot@bannerhealth.com
Nancy Wilson, M.A., LMSW
Department of Medicine-Geriatrics
Huffington Center on Aging
Health IDEAS Program Director
Baylor College of Medicine
nwilson@bcm.edu
John Zeisel, Ph.D.
President and Co-Founder
Hearthstone Alzheimer Care
zeisel@thehearth.org
References:
[1] Manepalli, J. et al. "Psychosocial-Environmental Treatments for Alzheimer's Disease." Primary Psychiatry, June 2009.
[2] Lyketsos, C. et al. "Neuropsychiatric symptoms in Alzheimer's disease." Alzheimer's and Dementia, September 2011.
[3] Mittelman, M. et al. "Improving Caregiver Well-Being Delays Nursing Home Placement of Patients with Alzheimer's Disease." Neurology, November 14, 2006.
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I feel for families and the people suffering Alzheimers - but I question why one devastating illness deserves "more" taxpayer money than another. MD (40 diseases), MS, Parkinsons, AIDS, various cancers, Lupus, spinal cord injuries, cystic fibrosis - and on and on.
Every illness has a lobby stating their case why more money is needed. How much money can they actually commit to?
I suggest these people listed who are committed to Alzheimers research and treatment take a different path. The government being kept out of MDA was able to work efficiently (from my personal experience). Since they are close to a cure I don't get the support I did (money being used for research). People with MD pay out of pocket - respirators, wheelchairs, prosthetics, etc. The government money covers such little research that MDA finances the rest. People die with many of the 40 diseases and it's often children. Are they less worthy?
Haven't we learned that when government takes care of us, it costs far too much and we get much less than we can get in the free market (if only government would allow it). Thanks to deregulation of airlines, trucks, railroads and beer (by Carter no less) we now have much less expensive travel options, less expensive shipping, and lots more choices of beer. We should have the same in the health care industry.
Up to 2/3 of Medicaid money, depending on the state, goes to help keep seniors in nursing homes when their own funds run out. Meanwhile, Republicans are trying to slash federal Medicaid funding and block grant the program to the states, while many states are also slashing their Medicaid funds. There seem to be no good solutions, but I agree that the amount of money set aside for Alzheimer's treatment is inadequate. For families dealing with these issues, this is a life and death matter.