The U.S. Department of Health and Human Services (HHS) under the Obama administration released the first national plan to address Alzheimer’s disease on May 15, after releasing two drafts earlier this year that received a torrent of criticism about the emphasis on a biochemical cure and not including adequate psychology and behav-ioral health into prevention and treatment.
On April 17, the 11-person advisory council, established by the National Alzheimer’s Project Act (NAPA) that became law in January 2011, submitted 35 detailed recommendations to HHS that provided input on research, clinical care and long-term services and support. HHS released the final plan after considering those proposed action steps plus hundreds of public comments, including a 13-page com-mentary from APA.
The final 69-page version of the plan addresses five goals: prevention and effective treatment of Alzheimer’s disease by 2025, enhancement of care quality and efficiency, expansion of support for patients and their caregivers, increasing public awareness and engagement and tracking progress to drive improvement.
“This is the first time ever we have a national plan or roadmap to work on the goal of prevention and treatment of Alzheimer’s disease or to even try. We’ve never come this far before.” said Mary Guerriero Austrom, Ph.D., the Wesley P. Martin Professor of Alzheimer’s Disease Education and professor of clinical psychology in clinical psychi-atry in Indiana University’s School of Medicine.
Austrom also is director of education for the Indiana Alzheimer Disease Center and secretary of the National Alzheimer’s Association’s board of directors.
In a phone interview, Austrom said, “I think the plan is fairly well-balanced across the spectrum of the disease, from bench to diagnosis to care to community-based long-term care. The plan includes biomedical research, with a focus on genetics, imaging and basic sciences while also addressing hands-on care and psychosocial issues.”
“I personally think there is more honesty in the new plan about the fact we do not know what we are trying to treat, that a systems approach is needed and that the emphasis on the amyloid hypothesis is fading,” said Peter Whitehouse, M.D., Ph.D., geri-atric neurologist at Case Western Reserve University and co-author of The Myth of Alzheimer’s: What You Aren’t Being Told About Today’s Most Dreaded Diagnosis. Whitehouse had criticized the first drafts of the plan for the implication that a cure is close. (See March/April 2012, The National Psychologist.)
According to geriatric psychiatrist, Peter Rabins, M.D., MPH, Johns Hopkins School of Medicine and co-author of The 36-Hour Day, the national plan correctly emphasizes research targeting more effective treatments and a potential preventive strategy as well as offering increased support for family caregivers.
In an email interview, Rabins said, “The plan does not adequately recognize that until there is a method of prevention or treatment that reverses the illness, behavioral and psy-chiatric symptoms are a major source of distress and morbidity for the person with the illness, for family and professional care providers and a major source of the cost of the illness due to long-term care placement.”
Michael Friedman, LMSW, co-founder of the Geriatric Mental Health Alliance of New York, remains critical of the new plan. In an email interview, he said, “I am afraid that this plan is so focused on a doubtful promise of a cure or effective prevention by 2025, that it effectively abandons the 5.5 million people who have dementia now, the 5.5 million or more who will develop it over the next decade and their family caregivers who will continue to bear the burden.”
According to Austrom, the second goal of the plan that addresses enhancing care quality and efficiency is likely to influence current treatment and management strategies in clinical practice. “In addition to identifying best-care practices I think the plan will help integrate care among providers and across providers,” she said.
“The next step is appropriating funds to give the plan some teeth,” Austrom said, adding, “Currently there is no line item in the budget. The president proposed an additional $100 million for Alzheimer’s funding for next year’s budget and it is awaiting Congressional approval. This past February an immediate $50 million was provided to the National Institutes of Health. Will we meet all of the plan’s goals by 2025? Maybe not, but I think it has to help.”
For more information on the plan, please see: http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf (PDF)
The council’s recommendations are at: http://aspe.hhs.gov/daltcp/napa/AdvCounRec.pdf (PDF)
Paula Hartman-Stein, Ph.D. is a clinical geropsychologist, consultant, and trainer at the Center for Healthy Aging in Kent, Ohio. She is co-editor of Enhancing Cognitive Fitness for Adults. She may be reached through her email address at: firstname.lastname@example.org or her website, www.centerforhealthyaging.com.