Making the case for more Alzheimer's research funding
Public policy decisions include funding decisions. Lawmakers decide how much and for what purpose government money will be dedicated in the federal agencies such as the National Institutes of Health, the Food and Drug Administration, the Centers for Disease Control and Prevention, and the Administration on Aging. To convince Congress that Alzheimer's research needs additional investment, the Alzheimer's Association educates decision makers on the economic and emotional toll that Alzheimer's takes on families and the nation.
Policy resources developed by the Association include:
- Alzheimer's Disease Facts and Figures, the first comprehensive statistical brief detailing the burden of Alzheimer's and other dementias on people, local and state government, and the nation's health care system. This key resource is updated annually.
Why should Alzheimer's be a national priority?
- The rapid aging of America as baby boomers enter the age of greatest risk means a dramatic rise in the number of Alzheimer's cases in the coming years.
- There is no cure or preventative treatments.
- There are no disease-modifying drugs to stop, delay or reverse progression.
- The costs for Alzheimer's care and services continue to rise, straining our overwhelmed health care system and threatening to bankrupt Medicare and Medicaid.
- Chronic underinvestment and flat federal funding for research is leaving promising research unfunded and slows scientific progress.
Voicing our message
Our advocates are active throughout the year engaging elected officials at all levels of government. Every spring, they come to Washington, D.C., to participate in the annual Alzheimer's Association Advocacy Forum. The Forum brings together hundreds of advocates from across the country to get briefed on the issues and to meet face-to-face with their members of Congress to push for Alzheimer's legislative priorities. Advocates also work with Alzheimer's Association chapters at the local and state levels to pass legislation.
Alzheimer's Ambassadors, who serve as key contacts to members of Congress for the Association, play a major role in year-around advocacy, meeting regularly with members of Congress and their staff to discuss federal legislative priorities, serve as advocacy spokespeople for local media, and assist chapters in recruiting new grassroots advocates.
Another group of key advocates are our Early Stage Advisory Group (ESAG). These advocates work to educate state and federal officials about the need for improved research funding, care and support programs. ESAG members attend both the Advocacy Forum and many state lobby days organized by chapters.
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Key legislation we are leading
We champion the following legislative priorities:
- The expansion of diagnosis and care planning with the HOPE for Alzheimer's Act - (S. 738/H.R. 1386)
In order to provide better medical care and outcomes for individuals with Alzheimer's and other dementias, possible dementia must first be detected, the disease must then be diagnosed, care must be planned, and the diagnosis must be noted in the patient's medical record. Studies also suggest that early diagnosis and care planning are keys to the improved long-term health of caregivers. The Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act would expand diagnosis of Alzheimer's disease, provide information on medical and non-medical services for newly-diagnosed patients and their families, and require that a diagnosis be noted in a patient's medical record. Learn more at www.alz.org/hopeact.
- The Palliative Care and Hospice Education and Training Act
Nearly half of all people with Alzheimer's and other dementias are in hospice care at the time of their death. Less than half of surveyed nursing homes have some sort of palliative care program. For people with advanced dementia, such care — which focuses on managing and easing symptoms, reducing pain and stress, and increasing comfort — improves quality of life, controls costs and enhances patient and family satisfaction. But, as the demand for such care grows with the aging population, more must be done to ensure an adequately trained workforce. The Palliative Care and Hospice Education and Training Act would increase palliative care and hospice training for health care professionals, launch a national campaign to inform patients and families about the benefits of palliative care and enhance research on improving the delivery of palliative care. Learn more.
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