How Stigma Makes Alzheimer’s More Difficult for Everyone

Date: Summer of 1995

Place: Jefferson County, Colorado

Setting:  Inside one of the many nursing homes I visited as a mental health consultant

Rosemary* had a grand time at the outing to the minor league baseball game. I knew this because as soon as I entered the facility, she walked up to me with a look of excitement I had rarely seen from her before. She had middle-stage Alzheimer’s and had been experiencing mood changes, especially depressed and agitated moods. She told me about the players, the field, and about how much she liked the hot dogs they had for lunch. Rosemary was having a good day.

I entered the dual office of the social worker and activity director and commented on how much Rosemary had enjoyed the outing. The two looked at each other and rolled their eyes.

“What’s wrong?” I asked.

“Rosemary embarrassed the hell out of us, as usual,” the social worker explained. “She was too loud, got too excited, and couldn’t keep her hot dog in her mouth.”

The activity director agreed. “Everyone was looking at us as if we shouldn’t be there. It was really embarrassing.”

“Maybe we shouldn’t take her out anymore,” the social worker suggested. “It’s not like she’ll remember going anyway.”

*Name changed to honor confidentiality

© Loretta Humble
Don't let stigma stop you from enjoying life with your loved one. © Loretta Humble

Although this true story occurred 17 years ago, the stigma that oozed from the staff members’ mouths can still be witnessed today – not only in long-term care facilities, but among the general public too.

Stigma about any disease is often criticized in the way that it stunts research funding and policy development, but we don’t often talk about the more intimate way that stigma surrounding conditions like Alzheimer’s affects those with the disease, their families, and their communities.

Interestingly, researchers in faraway places are asking those same questions. A study recently published in the American Journal of Alzheimer’s Disease and Other Dementias involved a sample of 1000 people living in Belgium who were asked to evaluate two different campaign advertisements about Alzheimer’s disease. One advertisement projected a message of fear of degeneration and death, while the other promoted a message that those with the disease could still enjoy simple things like a card game.

I like the second ad, don’t you? Unfortunately, the participants did not warm up to it as much as I’d hoped. Results showed that the group found the fear-based campaign more attention-grabbing, easier to understand, and more credible.

Ugh! Let’s think this through. Admittedly, fear and other intense emotions tend to sear ideas into our memory and cause people to act. I suppose this could help move people to advocacy under some circumstances. But when it comes to how people view and treat individuals with Alzheimer’s on a day-to-day basis, is this kind of message really helpful?

Sadly, a lot of people still see those with Alzheimer’s as pitiful, embarrassing, and a lost cause – and this stigma fuels the insensitive or indifferent way they treat those with the disease. Ultimately, stigma makes Alzheimer’s disease more difficult for everyone. But what I’ve come to realize over the years is that although stigma is seemingly about the people being stigmatized, it’s really about those perpetuating the stigma.

Yep, when we engage in stigma (and as humans, we all have done this regarding some difficult issue at some point in our lives), we are making the issue about us. We are scared it will happen to us too, we are embarrassed by another’s behavior, or we feel our time is being drained by a lost cause. In essence, stigma is a selfish cognition.

What do we do about it? We don’t give in to stigma or its assaults on us and the people we love. If you are caring for someone with Alzheimer’s disease, you already know that stigma is out there. You’ve seen the sideways looks at the grocery store and heard the mutterings at restaurants.

But I’m encouraging you to stand tall and keep taking your loved one into the world, unafraid. Please don’t give a damn about the stares unless your family member is upset by them. When you stomp on stigma by continuing to live your lives as caregiver and care receiver (a precious team), you are providing your loved one with joyful experiences, which brings you joy as well.

And you’re teaching society a very important lesson.

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