Don’t Stay Silent About Alzheimer’s – How to Become an Alzheimer’s Advocate

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The calling card of Alzheimer’s is the devastating way it slowly drains the memories and personality away from its victims. In essence, it steals their voice. As the caregiver of someone with Alzheimer’s you don’t have to be silenced, too!

Meet Brenda Bouchard

In many ways, Brenda Bouchard’s personal Alzheimer’s story is not unique. Her husband, Ken, developed early onset Alzheimer’s at age 59, and over the next decade she and her family had to watch him slowly slip away. Additionally, Brenda cares for her mother fulltime, who was diagnosed with mild cognitive impairment.

Today, Brenda is a highly vocal advocate for Alzheimer’s research. She has testified on behalf of bills in her state of New Hampshire, spoken personally with state lawmakers, and even created her own Facebook group to showcase her advocacy. You don’t have to march to the statehouse or give up your day job if you want to make a difference in the Alzheimer’s community. Being an Alzheimer’s advocate, like Brenda, can mean different things to different people. Even the smallest efforts add up.

Share Your Story

The easiest way to become an Alzheimer’s advocate is to simply share your story. According to the Alzheimer’s Association, over five million Americans currently suffer from Alzheimer’s, and many more millions of caregivers provide unpaid care to their loved ones. Too often, family members hide an Alzheimer’s diagnosis. We need to remind our friends, our neighbors, our community members, and our lawmakers that Alzheimer’s is a very real part of our society.

Consider sharing stories of your experiences with Alzheimer’s through social media. Help them wake up to the fact that Alzheimer’s is all around us. Brenda explains that “It was a very big decision to speak out publicly about Ken’s diagnosis because at the outset I felt I was betraying him.” However, as Brenda considered it more she realized that by speaking out, “I was honoring Ken’s life and the person he was and also giving a voice to many people who are in the same situation and yet unable to speak out.”

Participate

Another way to become an Alzheimer’s advocate is to participate in the many programs around the country that seek to raise awareness of Alzheimer’s as well as funds for research and care. The Alzheimer’s Association sponsors a wide variety of events each year to support Alzheimer’s, including The Longest Day, walks in nearly every state, and Casual for a Cause, which allows you to get your entire workplace involved.

Consider searching for and participating in an activity near you, starting a fundraising drive, or volunteering for a local event. Every dollar that you raise can make a difference in the fight against Alzheimer’s.

Advocate

Brenda started her journey as an Alzheimer’s advocate by simply sharing her story, but before long, she got involved in supporting a state bill that would create a plan for Alzheimer’s and dementia in New Hampshire. Local, state, and federal lawmakers all across the country are making decisions that affect people with Alzheimer’s, whether that’s related to funding research, providing money for care, or something else. As someone with direct experience caring for a family member with Alzheimer’s, your voice and your opinion are valuable.

Make the effort to become aware of efforts to support Alzheimer’s research and care in your town, city, state, and on the national level. Write, call, and email your local representatives to support the fight against Alzheimer’s. Check out the Alzheimer’s Association’s Advocacy Center where you can access advocacy resources, learn about policy priorities, visit advocacy forums, and join their advocacy efforts.

We also encourage you to attend our monthly Caregiver Support Group where you can meet other families who have stories to share. If you still aren’t sure whether you should become an Alzheimer’s advocate, remember that’s it okay to start small. As Brenda wrote, “As I watched the grueling losses and changes this disease was wreaking on [my husband] and our family, I recognized I didn’t want to sit idly by and do nothing.”


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Categories: Memory Care

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