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Breaking free from stigma.

Oh, dear God, I hope I never get diagnosed with this.”

That was a common statement among Christine Thelker and her peers when they’d chat over lunch. Thelker was a nursing assistant in Vernon, BC, at the time and had spent much of her career in dementia care. While she was passionate about improving the lives of people living with dementia, she, like many of her co-workers, was terrified at the notion that she would someday experience the same symptoms as those she cared for.

Eventually, her worry became reality. In 2015, she was diagnosed with vascular dementia at just 56 years old. She says she was shocked and numbed by the fear of what was to come. Her career ended abruptly, and her loved ones began worrying about how she would navigate daily life.

“Things just started happening around me, and I stood there, unable to think far enough ahead to know the right things to do,” says Thelker. “I was just listening to people who thought they were caring for me and making good decisions for me, but those [decisions] were all based on stigmatized ideas of what dementia looks like.”

Loved ones advised Thelker to sell her house, expecting that soon she’d be unable to function in daily life. This, in turn, led her to stress over when she’d need to move to a care home, and which one she should choose.

Christine Thelker

For the first two years following her diagnosis, the stress caused by the fear of her future led Thelker to isolate herself from others in order to avoid judgment and difficult conversations. 

But now, seven years later, it’s clear to Thelker that the concerns she had about dementia rapidly rendering her incapable were unfounded. Though she needed an adjustment period to adapt to her new reality, today, Thelker still lives alone, with a volunteer coming to her home once a week to help her with technology. She also belongs to several dementia-related committees and advocacy groups, and she’s an accomplished writer whose abstracts were presented in a conference in London in the spring of 2022.

As she looks back, Thelker says her early fears, and those of her loved ones, were fuelled by stigma and misconceptions about what the dementia journey looks like, and by thinking only about the late stages of the disease.

"I was just listening to people who thought they were caring for me and making good decisions for me, but those [decisions] were all based on stigmatized ideas of what dementia looks like."

– Christine Thelker

What do we fear?

Dr. Francesca Farina, a neuroscientist in Dublin, Ireland, and a Senior Atlantic Fellow for Equity in Brain Health for the Global Brain Health Institute (GBHI), confirms people tend to fast-forward immediately to the end-of-life stage when thinking about dementia. 

Dr. Francesca Farina

“People still have the perception that you get a diagnosis of dementia and then [your life is over],” she says.

Farina, who dedicates much of her work to understanding the individual and societal impacts of fearing dementia, aimed to dig deeper into the relationship between fear, memory and quality of life in her 2020 study titled “Fear of memory loss predicts increased memory failures and lower quality of life in older adults: preliminary findings from a fear-avoidance of memory loss (FAM) scale.”

Using a sample of older adults from the Dublin community, Farina was able to find the common reasons people fear dementia. They include loss of identity and personhood, becoming dependent on others, being treated differently by friends and colleagues, embarrassing oneself and causing embarrassment for loved ones.

Farina says these fears are caused by negative perceptions of dementia that stem from old, stigmatized ideas and treatment methods. For instance, in the past, the media has shown people with dementia confined to institutionalized environments or in vegetative states. 

“I think some people are still very confused about what dementia is,” Farina says. “When you have that confusion, that can spur fear — a fear of the unknown.”

The impacts of stigma and fear

According to Farina, stigma and fear go hand-in-hand, which leads to discrimination for those already living with dementia. This can occur in the form of basic human rights being denied to them. 

Photo courtesy of Getty Images.

“[Due to fearful loved ones], people may no longer have control over their own affairs, even when they feel that they still have a lot of capacity,” Farina says. “Those rights are taken away from them.”

Thelker’s experience serves as an example of this form of discrimination. Not only did her diagnosis end her career, but her loved ones immediately began to take control of certain affairs based on what they’d seen and heard about dementia. They couldn’t imagine that post-diagnosis she’d be capable of accomplishing all that she has in the last seven years, or that she’d still be living alone with minimal assistance. 

Because society views dementia in a stigmatized way, Thelker’s voice was quieted in planning for her own future.

Ursula Ryan, a retired teacher in rural Nova Scotia, feared her husband, Dan, would experience the same sort of discrimination after he was diagnosed with dementia at age 66. 

“I didn’t want to be isolated, and I didn’t want him to be,” Ursula says. “I didn’t want this stigma.”

As time passed, she indeed watched stigma and fear chase people away. “Friends that I've had in the past don't come around anymore and haven't been around for three years,” she says. “That was a big shock to me. You know it’s just because they can't accept it.”

Still, Ursula finds hope and comfort in the fact that not everybody has stayed away. For example, as she continued to bring Dan to church with her, other congregants were welcoming and accepting of his presence, even when he would become confused or slightly disruptive. “They are all comfortable enough that I’m not hiding him in a closet,” she says. 

Farina’s study revealed that, not only does fear cause discrimination for persons living with dementia (as Thelker and Dan Ryan’s stories show), it can also become a factor for decreased health in people who live without dementia.

In fact, the participants who feared dementia the most reported more memory problems and were linked to reduced overall well-being, despite having performed averagely on an objective memory test. 

These findings suggest that fearing dementia can cause excessive self-monitoring of potential symptoms, leading to distress and fatigue, which can then increase real cognitive failures. 

For example, when we worry about forgetting a name and then fixate on what forgetting a name may represent, we may increase the likelihood of forgetting that name, thus strengthening our fear of cognitive decline.

"If we don't see people with dementia living their lives in neighbourhoods with supports that make sense, and help them to maintain their dignity, then we're never going to reduce the fear."

– Dr. Francesca Farina

Photo courtesy of Getty Images.

Farina says this self-fulfilling cycle can lead to unnecessary and unproductive behaviour, such as avoiding social engagements or steering clear of activities requiring cognitive effort, like card games and other once-loved hobbies. Avoidance may provide short-term relief, she says, but the long-term impact can be quite harmful. 

“Your world becomes smaller and smaller because you're trying to keep yourself safe,” Farina says. “You're not getting cognitive stimulation, you're not making those social connections with people, you’re not challenging yourself to break that cycle.”

And yet, Farina points out that a certain level of fear of dementia is not something to be dismissed entirely. After all, it can motivate people to seek assistance and understanding, to adopt healthy lifestyle behaviours and to support and empathize with others. 

“The fear we’re [concerned] about is a higher level of fear — fear that is really persistent, intense and starts to interfere with our day-to-day well-being,” she says.

Shattering stigma to end fear

Addressing the stigma associated with dementia will help to break down this fear and build more responsive, compassionate communities that better support everyone.

Farina suggests some strategies for challenging the societal stigma, rather than sticking to the old ways of looking at dementia. These include increasing public education around what dementia really is, how common it is, its symptoms, and what people can do to keep their brains healthy and active. 

Farina also says it would help if people living with dementia were seen more often outside of institutionalized settings.

“If we don't see people with dementia living their lives in neighbourhoods with supports that make sense, and help them to maintain their dignity, then we're never going to reduce the fear,” Farina says. 

"I, in many ways, have a deeper, richer life than I did before, and it no longer matters to me how long the journey is."

– Christine Thelker

Ursula Ryan agrees with this notion and is doing her best to speak out about ending stigma in her community. In fact, when Dan’s favourite bench was removed by city workers, Ursula fought to have it replaced. She explained to civic leaders that, over the last couple of years, the bench had served as a social hub for Dan — people passing by would often stop to talk to him as he sat there.

Photo courtesy of Getty Images.

Fostering conversation about Dan’s lived experience led to the bench’s return, and notably, to greater understanding. Ursula says if there were more social engagement activities for people living with dementia and their care partners, perhaps others would judge less and be more comfortable around them. 

As Dan enters his ninth year of living with dementia, Ursula continues to work toward building awareness around the disease and decreasing society’s fear while trying to keep him at home as long as she can.

Thelker, meanwhile, continues to share her lived experiences of dementia with the aim of offering hope to people who worry they will one day receive their own diagnosis.

“As time goes on, you start to redefine yourself,” says Thelker. “I, in many ways, have a deeper, richer life than I did before, and it no longer matters to me how long the journey is.”

She acknowledges that the path may be hard, but perhaps her story of adapting can help to break down the stigma and dampen the fear of living with dementia. 

“I found my laughter again, I found my joy again,” she says. “I found out that, although I'd been handed this diagnosis, I could still live, and I could still be happy.”

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