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

 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

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.   

 

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
 

Medicaid-related resources

 Publication Analyzing Bush Medicaid Proposal (3 pages)
The Bush Administration's Medicaid Proposal Would Shift Risks and Costs To States. Center on Budget and Policy Priorities.

 HCBS Waiver Chart (4 pages)
A list of states providing Medicaid HCBS waivers serving the elderly and disabled. Excerpt from 2005 Advocates Guide.

AARP State HCBS Waiver Report
An AARP report summarizing a study to determine if states' Level of Care criteria for Medicaid eligibility present barriers to nursing home care and HCBS waiver services for people with dementia who need long-term care services.

Home and Community Based Services (HCBS)
The HCBS facilitates communication between states and consumers, providing data, research and summaries HCBS programs.

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.

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 

 

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.