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I Have Alzheimer’s or Another Dementia
Does anyone remember "Act-Up" for HIV/AIDS?
Act-Up were groups of patients and their families and friends who agitated and advocated for HIV/AIDS patients in the 1980s and 1990s when these patients had no hope and were succumbing soon after diagnosis. They advocated aggressively for treatment and change in the way HIV/AIDS peatients were looked at. They didn't take NO for an answer!
The dementia world needs Act-Up-type advocates. We need to make better progress in medical treatment and in treatment within the community. What are we going to do?
All of us who are able need to personally get to know our legislator, both at he state level and nationally.
From your local chapter, find out the track record of each, so you know who to push and who to thank.
Write your own letter, telling your own story. Legislators pay much more attention to these than to a form letter you merely put a signature on.
Follow up your letter with a phone call to the nearest office. Call once a month. The staff will get to know you.
If at all possible, visit the office in person. Even if you only get to talk to a staff person, they do have their boss's ear. And the odds are the dementia has touched their family.
Keep track of your contacts. Keep your local Alz. Chapter informed. There may be local group visits to legislators offices. You will want to be part of that if possible.
The 2012 Facts and Figures recently was published. The second section is focused on Early Stage and the too many people struggling at home alone, many not having their needs met.
However, for me, stats are meaningless, unless one brings it down to a personal level.
What is your story? What are your needs now that aren't being met? What are your future needs that you will need help with? And what can research do to make sure your children and grandchildren will not follow in your footsteps!
Thank you for responding, Mimi. This is good information.