In 2008, my mother was diagnosed with Alzheimer’s. At the time I knew little about the disease other than it had to do with forgetfulness and old age. As I become more familiar with the disease, I realized its effects were insidious, as it slowly but surely robbed me of one of the best people I knew, my Mom. Like most patients in the later stages, she was there only to smile. Speech had left her. She finally succumbed to the disease in 2013 after a long journey and a very long goodbye. After mourning her passing for a couple of months I decided that NOTHING messes with my Mom and gets away with it. At that point I got involved with the Miami Valley chapter of the Alzheimer’s Association and eventually became a member of one of the most caring Boards of Directors that I have ever participated in. Every day, both staff and board fight for one thing — the end of this tragic disease that kills people like my mother.
Initially, my efforts were focused exclusively on fundraising and, while I’m still involved in that effort, I also was introduced to another aspect of the organization: public policy advocacy. Compared to most major diseases Alzheimer’s research and care are underfunded. Sadly, each year the number of people affected by the disease continues to grow, facing a disease with no real treatment and no cure. In addition to local fundraising efforts our hope also rests in garnering the power of government funds to support research and assist caregivers. Getting the attention of politicians takes money and voices in order to be heard, raise awareness, and get the funds needed to beat Alzheimer’s and other dementias. That is where public policy advocacy REALLY matters.
While we have thousands of advocates for the Alzheimer’s Association, another way the advocacy arm of the Association manifests itself is in the Alzheimer’s Impact Movement (AIM), its sister organization that has more flexibility to influence legislation and politicians. AIM is a big part of our voice in Washington, D.C. Compared to other diseases and causes, AIM membership is woefully small. In January 2017, total AIM membership was less than 1,500 people. To be truly effective with legislators the AIM membership number needs to be 100 or even 1000 times larger. Even with the small number of members, AIM has helped achieve important progress in Washington. In the last several years Congress has doubled its funding for Alzheimer’s research, and Medicare regulations have recently been changed to include reimbursement for physicians to perform care planning for people with dementia.
Joining AIM is one of the best ways I’ve found to make a difference, and it took little money and time to join. When I learned how effective we could be through AIM, I used my smartphone to visit alzimpact.org, paid my $20 and within a couple of minutes I was a member, and this year I’m serving as the AIM chairperson for the Dayton Walk to End Alzheimer’s in an effort to help educate and engage people in advocacy. AIM gives me and others a louder voice in Washington to help make sure that the disease that messed with my Mom — and others like her — becomes simply part of the history books.
To learn more about the Alzheimer’s Impact Movement, please visit alzimpact.org.
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