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Be a board member and spokesperson for your Alzheimer's Association chapter

The idea: Amy went to her local Alzheimer's Association chapter for information about Alzheimer's after diagnosis, and through her perseverance, became a board member and a spokesperson. She encourages others with dementia to do the same.

Hello:

My name is Amy Shives. My husband and I live in Spokane, Washington, in the USA. I am 54 and have been diagnosed with early-onset Alzheimer’s disease.

For 27 years I worked at Spokane Community College, where I was tenured faculty and a nursing/allied health counselor. I retired last summer, after receiving the Alzheimer’s diagnosis. My two children are in college.

Now I am a member of the Board of the Inland Northwest Chapter of the Alzheimer’s Association and I speak to the media about what it’s like to have Alzheimer’s disease. My purpose in writing this idea is to let people know how and why I became a board member and a spokesperson for our local chapter of the Alzheimer’s Association, and to encourage other people with dementia to do the same.

I first approached the Alzheimer’s Association as a newly-diagnosed person seeking information about the disease. A good part of my job at the college involved looking for resources and teaching students how to find resources, so it was natural for me to go and look for resources for myself, a person with Alzheimer’s. I have to say that my physician and neurologist did not refer me to the Alzheimer’s Association; I went there myself with no introduction.

I asked the lady at the front desk how all this works—what can the Alzheimer’s Association do for me, a person with Alzheimer’s disease? Someone who could explain everything to me was found, and in the course of our conversation, I discovered that there was no person with Alzheimer’s on the chapter board. I made inquiries about what was involved with being on the board, and was invited to apply. It goes to show that you only have to ask the question….

Each year our chapter has a huge fundraising Gala with a dinner and an auction. Last year I was on the Gala committee, and I decided that I could best contribute by being the “voice” of the Gala. I worked with another woman to find contacts in the media. We looked for journalists who were writing about health issues and e-mailed them about the Gala and Alzheimer’s disease, and we also pursued the contacts of friends. For example, the newscaster who interviews me in the news video below was the MC at our Gala!

In addition to the local news interview, I have been a spokesperson at our local Walk to End Alzheimer’s (video posted below), and I was interviewed about my experience with Alzheimer’s by The Spokesman-Review. Click here to read the article.

I plan on doing as much speaking out as I can and as I am allowed to do! I hope to “step it up” and be a huge contributor to our local Walks. But, I need “new blood,” new faces, so that the local community won’t get bored with listening to me!

My long-term goal in speaking out is to eliminate the stigma of Alzheimer’s and other forms of dementia. I still get jokes about memory loss and Alzheimer’s said right to my face. People’s words can be very hurtful. I’m hoping that if the general public sees and listens to more people with dementia, they will come to understand the condition, feel more at ease, and stop making jokes. I also hope that people will do a better job of helping others. I am particularly concerned about those people with Alzheimer’s who live alone, who do not have any family to help them. Also, who helps the children of people like myself, who must now live with a parent with early onset Alzheimer’s disease? And finally, I’d like to see more compassion on the part of the physicians who make the diagnosis. Unfortunately, from personal experience, I know that too many physicians simply say, “You have this, now go home.” This has to change.

I’d like to encourage more people with Alzheimer’s and other forms of dementia to go to their local Alzheimer’s Association office and to volunteer in whatever capacity they can. By being a board member, you can be the important voice of this disease on the board. By being a spokesperson, you help to put a face on the disease, increase understanding and reduce the stigma. By volunteering, you are creating purpose in your life, which can help you to stay involved and active, both of which are important with this disease.