Alzheimer’s plan emphasizes biology over behaviorThe National Psychologist March/April 2012 Vol. 21. No. 2, pp 1, 3
The most recent draft released Feb. 22 for a massive federal plan to address Alzheimer’s disease is considered “woefully inadequate” in incorporating psychology and behavioral health into prevention and treatment. The national plan stems from the National Alzheimer’s Project Act (NAPA) signed into law in January of last year.
NAPA makes the secretary of Health and Human Services (HHS) responsible for the “creation and maintenance of an integrated national plan to overcome Alzheimer’s, provide information and coordination of Alzheimer’s research and accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s.”
But the emphasis so far on biological approaches and the short shrift given non-pharmacological interventions has generated a torrent of criticisms from the mental health community, which is seeking wider support during the current public comment phase that is open through March 30.
NAPA established an advisory council to develop an ambitious national plan without waiting for Congress to act, and the most recent draft of the plan includes five goals for preventing and effectively treating Alzheimer’s by 2025, optimizing the quality and efficiency of care, expanding support for people with Alzheimer’s as well as their families, enhancing public awareness and tracking progress.
According to an HHS press release, the goals as well as the supporting strategies and action steps proposed in the plan reflect input from the Advisory Council on Alzheimer’s Research, Care, and Services and almost 100 public comments received on an initial draft released Jan. 9.
The first draft from the National Alzheimer’s Association barely acknowledged mental health and non-pharmacological interventions and made no mention of the role of psychology in research, practice or diagnosing of Alzheimer’s.
In response, APA CEO Norman B. Anderson, Ph.D., sent 13 pages of comments to HHS. He wrote, “It is surprising that there is no mention of the role of psychology in the draft framework. Most notably, neuropsychological evaluation, a component of the original and current gold standard for AD diagnosis, is not mentioned.”
According to Debbie Digilio, director of the APA Office on Aging, APA will again provide detailed comments on this new draft. She said, “It is encouraging that at least psychologists are now listed multiple times and that there is a tiny bit more about behavioral research and non-pharmacological interventions, but it is still woefully inadequate in many things such as the area of neuropsychological assessment, research beyond biomarkers, the proposed public education campaign addressing risk factors and geriatric workforce funding.”
According to Michael Friedman, LMSW, co-founder of the Geriatric Mental Health Alliance of New York, “The revised national plan acknowledges that mental health problems occur in dementia, but the authors of the plan don’t seem to understand how common anxiety, apathy, moodiness and behavioral difficulties are.” He said the plan is not specific about what good practice is and what people should be trained to do.
In a recent phone interview Peter Whitehouse, M.D., Ph.D. geriatric neurologist at Case Western Reserve University in Cleveland, Ohio, said, “The national plan is dominated by the old thinking that with enough research Alzheimer’s can be eradicated, tending to make people think a cure is close. There is no honesty that this is complicated and multifactorial.”
Whitehouse added that the Cochrane Collaboration recently published a 77-page review on the positive impact of cognitive stimulation on cognitive functioning in people with dementia.
In another phone interview, John Zeisel, Ph.D., founder of Hearthstone in New York City, voiced a similar perspective. Zeisel said, “The emphasis on biology in the national plan is short-sighted because it treats dementia as if it could be cured or prevented through a serum similar to the cure for polio virus.”
“Whether the etiology of Alzheimer’s is tau or amyloid (marker deposits in the brain) or a combination, it will still take 10 to 20 years before anything comes of this development into biopharmaceutical research. There are at least 7 million people today with some degree of dementia and in 10 to 15 years there will be 20 million with dementia. Those people need a life worth living. The only way we can do this is to emphasize the role of behavioral science.”
Adam Brickman, Ph.D., a neuropsychologist at Columbia University, also was reached by phone. “The best interventions that we have to help diminish or slow down the progression are all behavioral, Brickman said. “Everything we know about prevention or treatment focuses on behavioral strategies. They are not slam dunk, but in this day and age, the best we have is behavior.”
Hector Gonzalez, Ph.D., an associate professor at Wayne State University’s Institute of Gerontology in Detroit, Mich., is a member of the APA Task Force to update the Guidelines for the Evaluation of Dementia and Age-Related Cognitive Decline published in the January issue of The American Psychologist.
In an email interview, Gonzalez said, “Of all the 6,713 studies of risks and protective factors for cognitive decline examined in a task force charged by the National Institutes of Health, only cognitive training and behavioral factors were associated with sizable risk reduction.”
Plan calls for worldwide coordination
The national plan announced that in May 2012 an Alzheimer’s Research Summit will take place that will include national and international experts.
According to Zeisel, a groundbreaking global effort began in Spain and Portugal in September 2011. “At this conference we had an equal number of non-pharmacological and pharmacological interventions.” “The second version of the National Plan acknowledges that non-pharmacological interventions exist, he said. “The problem, I fear, is that when it comes to major public events such as an international conference, the behavioral health issues will be relegated to the children’s table.”
Zeisel said that he along with Whitehouse and others debated the use of the term non-pharmacological. To characterize a whole other dimension of interventions Whitehouse created a new term, “ecopsychosocial (EPS).”
Nancy Pachana, Ph.D., is a clinical psychologist and neuropsychologist who is an associate professor at the University of Queensland in Brisbane, Australia. She is national chair of the Australian Psychological Society’s Psychology and Aging Interest Group and a member of the APA Task Force to update the Guidelines for the Evaluation of Dementia and Age-Related Cognitive Decline.
In an email interview Pachana said, “In Australia the federal government has had several funding rounds targeting dementia, some of which have specified psychosocial research and excluded more basic neurobiological research.” She said the “Mind your Mind” program that emphasizes life style factors in cognitive health is still going strong in Australia.
In 2011 the U.S. National Alzheimer Association withdrew its public education program, “Maintain your Brain,” that emphasized behavioral lifestyle factors for cognitive health. When asked why, Erin Heintz, senior associate director of public relations for the association said, “There is no definitive way to prevent Alzheimer’s.”
New funding allocated
On Feb. 7 the Obama administration announced allocation of $50 million for research on Alzheimer’s. The press release from HHS said its 2013 budget will provide an additional $80 million, including an additional $26 million in caregiver support, provider education.
The priorities of the funding are controversial. According to Whitehouse, $50 million is being shuffled from money allocated for general genetic research with some of it likely to fund a trial for intra-nasal insulin.
Zeisel said, “Some of the new money should be going to study meditation and other innovative behavioral strategies.”
Friedman said, “Of the $156 million added to the budget for AD, $130 million is for research; $26 million is for all the other goals – such as improved care, training and public education. That amounts to $4.81 per person with AD. It is still striking how unbalanced the priorities really are and how much apparent indifference there is to improving care now despite the fact that there’s very little on the horizon by way of prevention or cure.”
Public comments accepted through March
Public comment on the National Plan will be accepted through March 30 and should be submitted to HHS’ assistant secretary for planning and evaluation, Helen Lamont, Ph.D., at email@example.com. In addition to submitting comments, interested persons can use the email to register for attending the May summit.
One of the 12 non-federal members on the NAPA advisory council is Jennifer Manly, Ph.D., associate professor of neuropsychology at Columbia University Medical Center. “I can say that the advisory council is committed to an ongoing process that includes public comments and feedback,” Manley said.
Paula E. Hartman-Stein, Ph.D., is a member of the APA Task Force to update the Guidelines for the Evaluation of Dementia and Age-Related Cognitive Decline. She is co-editor of the 2011 book, Enhancing Cognitive Fitness in Adults. She may be reached through her website, www.centerforhealthyaging.com.