Draft National Plan to Address Alzheimer’s Disease
March 30, 2012
Helen Lamont, PhD
HHS Office of the Assistant Secretary for Planning and Evaluation
Room 424E, Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201
Dear Dr. Lamont:
The American Association for Geriatric Psychiatry (AAGP) is submitting these comments in response to the call for comments to the Draft National Plan to Address Alzheimer’s Disease. The American Association for Geriatric Psychiatry (AAGP), established in 1978, is a membership association of nearly 2000 geriatric psychiatrists, geriatricians, nurses, family physicians, psychologists, neurologists, social workers, pharmacists and other health professionals interested in mental health and older adults. AAGP promotes the mental health and well-being of older people through professional education, public advocacy, and support of career development for clinicians, educators, and researchers in geriatric psychiatry and mental health. AAGP’s activities include substantial attention to Alzheimer’s disease.
Geriatric psychiatrists and others in AAGP are involved in all aspects of national activities addressing Alzheimer’s disease. Specifically, members in our organization are principal investigators of federally supported basic science and clinical services investigations regarding Alzheimer’s disease; AAGP members are local and national advocates for individuals suffering with dementia and their family caregivers; AAGP members teach and train clinicians at all levels who care for patients with dementia; and, clinician members of AAGP often become the primary coordinator for care management of outpatients with moderate to severe illness, and necessary consultants in residential nursing home care.
From this perspective, AAGP applauds the efforts of the Department of Health and Human Services (HHS) in implementing aspects of The National Alzheimer’s Project Act, including the development of the current Draft National Plan to Address Alzheimer’s Disease (National Plan). Overall, in AAGP’s opinion, the Draft National Plan in its current form has appropriate and commendable goals, and provides an excellent foundation for efforts towards achievement. AAGP remains concerned, however, that this ambitious plan has no explicit funds to implement the goals. The $50 million directed toward this program in 2012 and the proposed additional funding of $80 million will fall billions of dollars short of the appropriations needed to make the National Plan a reality. We urge the HHS to identify sources of funding in order to strengthen it. AAGP would contend that promulgating a plan of this importance without commensurate funding attached to its implementation creates a contradiction in the public’s mind and can be demoralizing to everyone impacted by the National Plan including patients, families, clinicians, and the many others involved with the care and support of patients with Alzheimer’s disease.
As noted, AAGP members are at the forefront of the research, clinical, and education arenas of Alzheimer’s disease in the United States. However, as Constantine G. Lyketsos, MD, and David S. Miller, MD, (both long time members of the AAGP) noted in their article in Alzheimer’s & Dementia (2012), Alzheimer’s disease is not simply “a memory or cognitive disorder, (as) almost all individuals with AD develop one or more Neuropsychiatric Syndromes at some point in their disease.” The lack of discussion in the National Plan of Alzheimer’s disease as a mental health issue is startling and one that needs to be remedied. Neuropsychiatric syndromes of Alzheimer’s disease are difficult to manage clinically and have a serious and disabling impact on both the patient as well as the caregiver. At the same time, there is a significant lack of knowledge on how to manage these conditions effectively. Health providers must be experts at managing these behaviors with non-pharmacologic therapies until evidence-based pharmacologic interventions are discovered. The National Plan must also recognize that it is the onset of the neuropsychiatric syndromes that often leads to assisted living or nursing home (long-term care) placement for patients with Alzheimer’s disease. The current long-term care population includes a majority of patients with dementia and a large percentage of those patients have such behavioral abnormalities. In these settings issues that relate to these syndromes is the central component that worsens quality of life and leads to morbidity and mortality. Research needs to be conducted on a new long-term care model that accommodates these patients in environments that are not only safe, but also can help manage these symptoms so quality of life improves even as Alzheimer’s progresses. AAGP believes it is critical that the National Plan both recognizes the existence of AD neuropsychiatric syndromes, and includes research and clinical care strategies on how to address them.
In addition to addressing the mental health of the patient with Alzheimer’s disease, AAGP believes it is critical to also address the mental health of the family caregiver. Too often the caregivers of patients with AD suffer from depression, which can lead to disability and/or physical health issues as well as to the development of dementia. In any comprehensive plan on AD, the mental health of the caregiver must be included.
AAGP applauds HHS for including a section on the education of health care providers, recognizing the needs for training specific to the treatment and management of patients with AD. It is well known that all primary care health providers need better education/training in the treatment of patients with AD, but in certain cases subspecialist care by geriatric psychiatrists is necessary. For example, when a patient requires acute psychiatric care with a comorbid diagnosis of AD, a specially trained physician is required. However, due to several factors including insufficient Medicare reimbursement, the number of geriatric psychiatrists in the U.S. is decreasing concurrent with the increasing need for additional specialists to address the growing incidences of dementia. The Institute of Medicine will address some of these issues in its forthcoming report on the needed workforce for mental health of older adults, but the National Plan should also include additional specific strategies for this specialized care. The time is now to invest funds into both training of health care providers as well develop models of care to ensure that there are community care programs to provide quality care for individuals with AD. Although it will require an initial investment of funds, ultimately the community and the health care systems will save money as there will be a decreased burden on the family and health care system.
AAGP offers its assistance to HHS as it begins to implement the National Plan. We are in a position to assist in the dissemination of research as well as actively participate in the education initiatives. We have worked on developing dementia-based curricula as well as conducted hundreds of workshops on the diagnosis and treatment of AD, including the neuropsychiatric syndromes of AD. We offer AAGP as a partner organization to HHS in any and all of these efforts.
We applaud HHS for the development of the National Plan to Address Alzheimer’s Disease. We agree that it is necessary for all of us to work together to be successful to address the many challenges facing people with Alzheimer’s disease and their families. Please contact us if we can provide further information or support in the execution of the National Plan.
Paul Kirwin, MD