Join the cause

The Alzheimer’s Association, Greater Iowa invites you to become an Alzheimer advocate. Join us and speak up for the needs and rights of people with Alzheimer’s disease and their families.

Add your voice to ours — become an advocate today.

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What is an advocate?

Alzheimer advocates play an important role in improving the quality of care and quality of life for people with Alzheimer’s disease and their families by working to improve dementia care and services; improve access to community-based care; improve quality care in residential settings; and expand funding for research and public programs serving people with dementia.

As an advocate, you will:

• Receive regular updates about current legislative and public policy issues.
• Stay on top of policy and legislative issues through alerts and updates.
• Make calls or write to legislators to forward public policy priorities to improve quality of life for those living with Alzheimer’s.

Iowa advocacy

2009 Public Policy Priorities

Endangered Persons Alert Initiative: Six in 10 people with Alzheimer’s disease will wander throughout the course of the disease. A Silver Alert program would quickly alert the public and law enforcement agencies when an individual with dementia wanders. A Silver Alert program will impact those with Alzheimer’s by providing: 

• Additional safety for those Iowans affected by Alzheimer’s or another dementia.
• Assurance for families that a responsive system exists to assist them if their loved one wanders.
• Coordination of law enforcement resources to expedite the safe return of individuals who have wandered.
• Appropriate public notification when a person with Alzheimer’s or another dementia wanders.

Enactment of the Uniform Adult Guardianship Jurisdiction Act: Adult guardianship is the process through  which a court appoints and oversees an individual to serve as the legal decision maker for another adult who is unable to make decisions for himself, such as an individual with dementia. The process of appointing a guardian is handled in state courts and there are more than 50 different adult guardianship systems in place in the U.S.  Enacting uniform guardianship jurisdiction legislation, a priority for all states, would: 

• Address emergency situations and special cases such as, interstate caregiving.
• Provide a channel to communicate and delegate which court is the most appropriate to handle an interstate adult guardianship case.
• Diminish undue stress to families involved in adult guardianship issues.  Reduce fiscal impact on families and the state, by eliminating paperwork and time in court.

Ensure Access to Medicaid for People with Alzheimer’s and Dementia: As many as 500,000 Americans have early-onset Alzheimer’s or another dementia and this number is growing.  Iowa should protect the quality of life and care for these individuals by ensuring funding and availability of necessary services: 

• Many early-onset individuals lose their jobs because they cannot maintain functioning to keep their current employment. People with early-onset who lose their jobs, often lose their insurance and become uninsurable.
• Due to waiting lists for the existing waiver program, the current system does not provide a sufficient safety net  for this population

Surveillance:  The 2007 Alzheimer’s Disease Task Force recommended establishing a system to collect data regarding prevalence, population trends, service needs and impact of Alzheimer’s disease and other dementias. In 2008, legislation was enacted to conduct surveillance, but funding was not allocated. The Alzheimer’s Association supports allocating funding to gather this important information so that Alzheimer’s programs and services can be targeted to the areas of greatest need. 

Illinois advocacy

2009 Public Policy Priorities

Move the State’s Alzheimer’s Disease Plan Forward Through Advocacy

• Lead the development of the final comprehensive Statewide Alzheimer’s Disease Plan envisioned in SJR 43 through advocacy ultimately leading to legislative or regulatory changes.

 Expand Home and Community Care Options

• Participate in the development of programs and grants through state, federal and private entities to expand availability and accessibility of home and community based care options that are culturally and geographically appropriate.

 Expand Training for Those Interacting with Persons with Dementia

• Develop, promote and provide effective, appropriate, and ongoing education for all persons in direct or indirect contact with or provide services that impact the quality of life of persons with dementia.

 Ensure Quality Care in All Settings

• Monitor and evaluate the impact of long-term care regulations, reimbursement, consumer standards and other compliance activities that impact the lives of persons with dementia and their families in all care settings, formal and informal. 

 Protect Medicaid

• Protect the quality of life for persons on Medicaid with dementia that recognizes consumer choice to provide care in the most effective setting. Ensure that these funds follow the person with dementia as they choose among services through the continuum.

Federal advocacy

•  Federal update
•  National priorities