3 Ways We Can Fight the Fear of Alzheimer's
It can feel hopeless to hear an Alzheimer's diagnosis. I've heard many people say they'd rather die any other way than get the disease. A big part of that is because a cure for Alzheimer's hasn't yet been found.
But a diagnosis is really just a shift, a bend in the river that tells us our life is turning one way rather than another. Rather than paralyzing fear or dread, I'd love to see people face a dementia diagnosis more like a cancer one. Rallying family and friends around us and preparing to fight the good fight. Still fearing the risks but also holding out hope for the best possible outcome.
How do we get there? We can tackle the stigma of the dreaded "A" word by some small but important actions. Let's start by addressing our own views of the disease, treating dementia like any other disease, and not being afraid to talk and advocate for awareness and a cure.
1. Look honestly at your personal stigmas
To start, I took a hard look at my own view of the disease. Like many people, I thought of dementia mostly as "memory problems." I didn't understand how the disease worked and I was afraid of it. Some of my older family members lived with it and it tore my family apart.
When my mom was diagnosed with mild cognitive impairment and then, eventually, Alzheimer's dementia, I was crushed. I couldn't help but picture the relational destruction and sad days to come.
After learning more about the disease, my perspective of the disease broadened. I read books that included medical perspectives and personal accounts of caregivers who helped family members cope with the disease.
I learned that the things we think of when we hear "Alzheimer's" - like bad memory or forgetting names - are symptoms of the physical deterioration of the brain. I learned the differences between different types of dementia. I learned other symptoms and ways to prepare for future changes in the disease.
2. Treat dementia like any other disease
Dementia is not just memory problems. A friend in my support group refers to people with dementia as people "with brain damage." She talks about it as a disease like cancer.
It changed the way I think about it and now I try to refer to it in those terms. It helps others understand it better too. And it changes what I expect of my mom and others who live with the disease.
I used to think that testing my mom when she struggled with a word or name was helpful. But I'd never expect someone with a broken leg to run down the street to meet me. I've learned that we shouldn't expect people with dementia to act or function like they used to. Instead, we should accept them where they are now and help them continue to live the fullest, richest life possible.
3. Talk about the "A" word!
A big way to defeat stigma is to talk about it! At first, I was afraid to talk about my mom’s diagnosis. I shared it only with my family.
Then I found a community of dementia caregivers and met people who were passionate about advocacy and education. I joined a support group and learned a lot more about the disease. I started talking about it more myself and slowly it gets less and less scary. When I encounter misinformation or stereotypes, I speak up and defend those living with the disease.
When you do start talking about it more, be prepared for pushback. Once I started telling my mom's close friends about my mom's diagnosis and her problems living at home alone, they did not believe me or were in denial. Early symptoms of dementia can be easy to hide and even those you see regularly may not notice because the changes are so slight and gradual.
I received a lot of criticism and hostility about how I was helping my mom, and I realized much of it was because those people themselves were scared of the disease. They were scared that someone they knew was diagnosed with it because it brought it closer to home.
That made me realize I need to share about it even more. I can help fight the stigma by talking about the disease and respectfully educating others about the facts.
Tackle the stigma while we hope for a cure
Over time, I hope that the disease dementia will be treated like any other diagnosis. Then maybe it will get more attention in research, by medical providers, and in resources that can help people with dementia live full and respected lives.
We continue to hope for a cure but we can start with addressing the stigma of dementia and Alzheimer’s disease and taking steps toward a world that isn’t so fearful of that diagnosis.
Does humor help you cope?