Advocacy and Reframing Alzheimer’s Disease

November 30, 2020

For National Alzheimer’s Awareness Month, I’d like to reframe our view of Alzheimer’s disease. It’s one of the most feared diseases and the 6th leading cause of death in the United States. There’s a huge focus on the tragedy of the disease: what’s lost during the disease progression, what can no longer be done, and what can no longer be remembered. It’s true, it is a life-altering diagnosis. There’s a lot of grief, loss, and changing of roles throughout the progress of the disease. Alzheimer’s is not easy to navigate.

However, I’d advocate for a shift in the narrative using the social work strengths perspective. Without negating the difficulties that one faces with dementia, it’s also important to recognize the strengths, abilities, and passions of each person. Creativity can flourish as dementia progresses and the inhibitions that once held people back from exploring the arts diminish. There is joy to be found throughout the disease. There is humor! There is hope and there is beauty. I’ve worked closely with people living with dementia for over a decade and I’ve seen this firsthand.

Recognizing the strengths of each person can help decrease the stigma associated with the disease. As its stigma declines, more people who have been diagnosed with Alzheimer’s disease are coming forward. These advocates choose to speak up and provide an insider’s view of dementia. They give people with Alzheimer’s a voice, demand that they are not overlooked, and ask to be understood by the community at large. Dementia advocates provide a way for others who are struggling with their own diagnosis to see the possibilities beyond the “tragedy” narrative. 

In 2014, a group of people diagnosed with various dementias founded the Dementia Alliance International (DAI). DAI is an amazing resource for those who are interested in connecting with others who share this diagnosis or who want to participate in dementia advocacy. Their philosophy is that representation is key. As their website says, “We are very keen to represent ourselves in all matters concerning dementia, in the philosophy of ‘Nothing about us, without us.’ Many persons with dementia are very capable of representing themselves, or speaking up for those who are no longer able to do so.”

If you’d like to better understand what dementia advocates want to communicate, Dementia Alliance International has compiled a list of resources and blogs written by people who are living with dementia. Reading these can help reframe our perception of the disease to include the input of someone who is living with the disease. You can find the list here

If you’re interested in learning more about dementia advocacy, here’s a video that features some active dementia advocates with tips for how to speak out when you’ve been diagnosed with dementia 

So this month, instead of relying on our outsider’s perspective of dementia and falling back on the tragedy narrative, let’s expand our knowledge base and listen to what people with Alzheimer’s disease have to say.

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