Erasing the Stigma of Alzheimer's Disease
Last updated: April 2022
When I was 12 years old, my mom was diagnosed with breast cancer. She had to have surgery, chemotherapy, and radiation, all while continuing to manage her household and raise her two young daughters.
I remember how people reacted to the news. Everyone was sad and wanted to know what they could do to help. Family, friends, and neighbors rallied around us and showed their support.
Friends offered to pick my sister and me up from school or take us to practices. Neighbors brought meals over to our house. And family members called to check in on all of us and visited us frequently.
Fortunately, my mom survived her battle with breast cancer. Unfortunately, she was diagnosed with early-onset Alzheimer's several years later, when I was 25 years old.
Stark contrast between diagnoses
I saw a stark contrast in how people reacted to this diagnosis versus her breast cancer diagnosis. Instead of being sad, people were afraid. Instead of wanting to know how they could help, people stayed away. Instead of calling to check in and visit frequently, people stayed quiet and many disappeared.
Although my heart never quite understood why my mind knew exactly why people reacted this way: They didn't know anything about Alzheimer's and they probably never knew anyone who had it, especially someone as young as my mom who was diagnosed at age 62.
Battling the uncertainty
That uncertainty scared them. They didn't know what to expect, how to act around my mom, or around us. It was just safer and easier for them to stay away.
I can't say I blame them entirely. Before my mom was diagnosed, I didn't know anything about Alzheimer's myself, and I had never known anyone who had it. I didn't know how to act around my mom either. I was forced to learn about the disease and navigate the progression because I had no other choice.
I wasn't afraid anymore
After learning about the disease and experiencing it firsthand - I wasn't afraid of it anymore.
I still never knew what to expect from my mom, but I was no longer afraid of her or her behavior. I knew it was all a part of the disease and that she wasn't doing it on purpose.
I became more comfortable around other people who had the disease, as well. I learned how to talk to them and to have a lot of compassion for them. I was no longer afraid of what they might say or how they would react to something I said or did.
All of that came from learning and becoming more aware of the disease.
Erasing the stigma of Alzheimer's
I believe that if more people were educated about Alzheimer's or had some experience being around someone who has it, then there would be a lot less fear and stigma surrounding the disease.
I believe that friends and family members would be more likely to step up to help than they would be to stay away. I believe that people would be much more understanding and compassionate toward families who are dealing with Alzheimer's. And I believe that the only way to erase the stigma around Alzheimer's disease is to stop whispering about it and start shouting instead.
We should stop feeling ashamed of it and start showing the world that a person with Alzheimer's is still a person. They are still capable of giving and receiving love - living a meaningful life. They are not to be feared. They are to be loved.
Awareness is key. I hope you'll join me in raising it.
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