What can one do, concretely, about advocating for Alzheimer’s disease support?

This year as we gear up for another Virginia General Assembly session it seemed timely to ask advocates across Virginia for their advice on getting involved. Advocacy does not have to be an intimidating endeavor. In fact, you would probably be surprised to learn that you advocate and don’t even know it or recognize it as such. Have you ever asked for more specific support for a loved in a facility? Have you ever helped a loved one navigate insurance and other benefit processes? Have you ever participated in a loved one’s care plan meeting? Then you’ve definitely been an advocate and you’re on your way to successfully advocating for policy changes!

 

Here we’ve asked some of our favorite advocates for their tips and tricks for doing it. From advocacy within your local communities to statewide legislatures, our experts have compiled some of their best advice to get you started. We hope that you find them to be not only useful, but inspiring. One person can make a surprising difference and that person could be you.

 

Charlotte Arbogast, MSG
Dementia Services Coordinator
Virginia Department for Aging and Rehabilitative Services
Division for Aging

If you have a question that you think our colleagues ought to answer, please submit it through the Contact Us section.


 

Martha Watkins, Alzheimer’s Advocate and former member of the Virginia Alzheimer’s Disease and Related Disorders Commission

 

Martha_WatkinsBuild your relationship with your State Delegate, State Senator and Congressman/woman

Determine your approach to the official by knowing their interests and committees they serve.  For example, a Delegate or Senator may be interested in the cost of care, impact on community, or they may be interested in hearing your story and the impact Alzheimer’s had on your loved one and family.  In other words, know your audience.  Additionally, if they wish to tell their story, listen.

 

Know the legislative priorities of the Alzheimer’s Association

Be prepared to speak to the priorities in a brief amount of time.  Often an elected official will not have a substantial amount of time to discuss the issues with an advocate.  It is helpful to hand them a business card with the bill number written on the card.

 

Always introduce yourself as a constituent

Elected officials want to work for their constituents and they do appreciate knowing the issues important to the public.  It is meaningful to indicate you are from a locality where an number of folks are interested in Alzheimer’s caregivers, walks to end Alzheimer’s, etc.  Tell them how many volunteers turned out for an event and then invite them or a staff member to join you at the next event.

 

Know the staff

It is equally important to develop a positive relationship with staff.  They schedule appointments and can also act as an advocate in you behalf.  Hand a staff member additional information  such as factsheets for their review.  Let them know you can provide them with additional facts about how Alzheimer’s effects their constituents.  Ask the staff to serve on Alzheimer’s committees.  Maintain contact with the office throughout the year.  Identify the best way to communicate with the office – telephone call, email, or an actual letter.

 

General guidelines:

Be prepared and informed – if the elected official or staff want to know more tell them in an organized and timely fashion.  (Don’t ramble)  Be persistent,  while showing awareness of their time.  And lastly, be thankful and follow up.  (Many individuals ask for support of their issues, separate yourself by always thanking them for their time or especially vote.)

 


 

Sue Friedman, President and CEO, Alzheimer’s Association Central and Western Virginia Chapter

 

Be informed.  Be involved.  Be an advocate for the cause.

Know the Alzheimer’s Association federal and state legislative and policy goals.   Share details with family, friends and coworkers and ask them to join in supporting these important goals.

Get involved through Walk To End Alzheimer’s, The Longest Day, volunteering, be a Board member, attend Reasons To Hope, serve as a leader, register to participate in research studies, and more.   www.alz.org

Register as an advocate or Ambassador to share the Alzheimer’s Association goals with our state and federal elected officials.   www.alz.org/advocacy

Everyone with a brain is at risk of Alzheimer’s.  Everyone has a reason to join the fight against this devastating disease.


 

Carter Harrison, Virginia Public Policy Director, Alzheimer’s Association

 

CarterHarrison x 150Advocacy is the art of translating your experience into action by policymakers. This can be done in three easy steps.

First, seek out other people with a similar experience and join with them. Your voice combined with the voices of others will make your message stronger.

Second, share your story. Policymakers need to hear from you. They need to understand the issue in a way that only you can describe.

Third, ask for change. If you don’t ask for improvement, it will not happen.

If you are ready to take action, please contact the Alzheimer’s Association. You can join with other advocates, receive training on how to effectively tell your story and demand change. Together we can improve the lives of people with dementia and their caregivers.

Join us!