Introduction
This section contains key advocacy resources for Alzheimer advocates. This ever-expanding list is just a sampling. If you need a resource that's not on this page, please contact us.
General resources
2008 Alzheimer Advocates Guide (106 pages)
2008 National Program (2 pages)
Advocacy Handbook (17 pages)
Simple tips on communicating with elected officials, influencing the media and a glossary of policy terms.
National Congressional Task Force on Alzheimer's Disease (4 pages)
Report: African-Americans and Alzheimer's (7 pages)
The Silent Epidemic: Prevalence of Alzheimer's disease among African-Americans released by the Alzheimer's Association and the Congressional Black Caucus.
Report: Cost to U.S. Business (29 pages)
Cost to Business 2002: Alzheimer's Disease Cost to American Businesses released by the Alzheimer's Association and the U.S. Chamber of Commerce
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Research-related resources
Research Talking Points (3 pages)
Facts and statistics about Alzheimer's disease and research for use by advocates as they speak out and educate people on supporting an immediate $1 billion federal investment in Alzheimer research.
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Medicare-related resources
Alzheimer's Disease and Chronic Health Conditions: The Real Challenge for the 21st Century Medicare (9 pages)
An analysis of Medicare fee-for-service claims data connecting Alzheimer's disease, chronic conditions and Medicare costs.
Medicare and Medicaid section
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Medicaid-related resources
Home and Community Based Services (HCBS)
The Community Living Exchange Collaborative Web site provides a wealth of information about state home and community-based services programs. Their site has program descriptions, the latest research and data, and technical assistance documents.
This Kaiser Family Foundation
This site provides a wealth of fact sheets, reports and data on Medicaid long-term care programs across the states. It also contains a state Medicaid benefits database in the lower right hand corner.
The National Citizens' Coalition for Nursing Home Reform (NCCNHR)
This site provides comprehensive information about nursing home quality with a small amount of state specific information.
National Association of State Medicaid Directors
Web site providing information on communication between the states and the federal government on issues pertinent to the Medicaid program.
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Long-term care related resources
Exploring Pathways to Long-Term Care Staffing Solutions (15 pages)
A paper by Judith A. Riggs, Alzheimer's Association
Assisted Living and Alzheimer's (1 page)
Information about the prevalence of Alzheimer's disease and dementia in assisted living facilities.
Assisted Living Policy Recommendations (4 pages)
Provides eight policy recommendations most critical in state assisted living law and regulation.
SCU Model Legislation (2 pages)
Special Care Unit Legislation adopted by the state of Rhode Island in 1994.
Long-Term Care Principles (1 page)
Alzheimer's Association-endorsed principles that promote comprehensive long-term care financing.
Long-Term Care Workforce Principles (2 pages)
Alzheimer's Association-endorse principles for direct care staffing that support quality dementia care across care settings.
National Clearinghouse on the Direct Care Workforce
The National Clearinghouse on the Direct Care Workforce Web site provides news on efforts to improve the quality of jobs for direct care workers.
National Academy for State Health Policy
This Web site maintains regulations for assisted living by state and links to other relevant sites.
Quality Care Initiative
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Family support-related resources
Driving (3 pages)
An Alzheimer's Association fact sheet designed to assist family caregivers.
A Practical Guide to Alzheimer’s, Dementia and Driving
The Hartford
The Hartford Insurance Company offers advice on assessing the driver, transitioning to not driving and understanding how family members play a role in the transition.
Administration on Aging (AoA) Demonstration Grants
The AoA's Web site provides in-depth information about the Alzheimer's Demonstration Grants.
National Respite Network and Resources
This Web site provides coalition contacts by state as well as other respite resources.
The Family Caregiver Alliance
State-by-state list of caregiver-related bills including respite information.
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