Breaking Down Stigma

Three months ago, when I started my position as an intern at Dementia Connections, my knowledge about the disease was slim. At the time, I’d only had first-hand experience with one person with dementia — my neighbour Gilly. 

When I was growing up, Gilly would pick me up from the school bus whenever my parents weren't available. Over the years, he developed dementia and eventually succumbed to the disease. I watched this man who took such pride in caring for me lose his ability to care for himself.

Because Gilly was the only person I knew who had dementia, I thought he was an outlier. I didn't know, until my position here at Dementia Connections, that dementia is quite common. Indeed, around 50 million people have dementia worldwide, according to the World Health Organization.

            Denée Seaton

As I learned new facts about the disease every day and interacted with individuals with lived experience, I began to bring up topics surrounding dementia with my friends and family.

I particularly remember this one scenario: A close friend FaceTimed me about five minutes after I'd completed an interview with an individual living with frontotemporal dementia.

In excitement, I told her what I had just done. Her eyes widened and practically pierced through the screen. "You were talking with someone who had dementia?" she asked. "How? That must've been very hard."

But the interview hadn't been hard at all; it was just as easy as any other interview I'd done. At that moment, I realized that there is indeed a stigma surrounding dementia. It stems from the fact that dementia isn't spoken about enough.  

 Stigma against dementia

Stigma related to dementia encompasses any negative attribute an individual has toward a person living with dementia simply because they have the disease. Often, the stigma is partially rooted in a poor understanding of what dementia is and how it may look.

             Photo Courtesy Canva

For example, my friend had assumed it was challenging to speak to a person with dementia because they lacked comprehension. Although she wasn't entirely wrong in this assumption, she wasn't aware that difficulty understanding usually occurs over time, at the later stages of one's dementia journey. 

Stigma arises when misinformation is spread, which can then result in negative labels. For example, people commonly use the phrase "suffering with dementia" rather than "living with dementia."

Other negative labels, such as "senile" and "crazy," are often used to describe an individual who has been diagnosed. 

These negative labels directly impact how people believe life after a dementia diagnosis might be. In fact, one in two Canadians don't believe they could live well with dementia, according to a 2017 awareness survey conducted by the Alzheimer's Society of Canada. The same survey relayed that one in four Canadians believe their life would be over after getting a diagnosis. 

In an interview she did with Dementia Connections in Fall 2020, Laura Bowley, whose mother passed away from vascular dementia, mentions that her family avoided talking about the disease when her mother was alive. The stigma resulted in difficulty getting the initial diagnosis for her mother and planning for the future.

Misinformation and negative labels can often cause friends and family to refuse to believe their loved one’s diagnosis is true, leaving the person with dementia feeling stigmatized and isolated.  

This isolation can also arise from feeling like an outcast. For instance, friends and family may begin reaching out to caregivers to ask about the well-being of the person living with dementia, rather than contacting them directly. 

"When a person is diagnosed with dementia, they often become an 'it.' They tend to be objectified and lose their personhood," says Bowley, who is also the director and partner of To Whom I May Concern, an interactive theatre program for people with dementia. 

" As an intern, I was fortunate to be put into a position where I learned about dementia through people with lived experience. Now, I try to educate people regarding dementia, especially in marginalized communities, where they are more likely to develop the disease. "

– Denée Seaton

Stigma can prevent people from

• Having a solid support system
• Preparing for the future
• Trying available treatments or participating in clinical trials
• Getting an early diagnosis
• Living the best quality of life possible

Why It Matters

 Stigma associated with dementia can make a person feel isolated and sad, but stigma can (and does) lead to other highly negative consequences as well.

         Photo Courtesy Canva

In a survey of over 1,000 people conducted by the Alzheimer's Society of Canada in 2011, 44 percent of the respondents report that they waited a year to talk about their symptoms with their doctors.

The hesitancy occurs for a variety of reasons. For example, associating the symptoms with old age or believing that a diagnosis means life is over. Hesitancy could also be due to the fear of losing one’s job or not wanting to tell friends and family. 

For whatever reason it may be, the hesitancy is concerning because, while there's no cure for dementia, an early diagnosis can help "slow" the disease and significantly lessen a person's symptoms.

Dementia-related stigma can also put a strain on health care. With fewer people addressing their early symptoms, for example, doctors may be less aware or adequately trained to spot those early signs.

And, as the number of people living with dementia continues to rise due to growth in Canada's senior population, there will be an increase in demands on Canada's health care system. 

This is partly because seniors with dementia need complex care, which results in more frequent and more prolonged emergency department stays. Longer stays result in 1.5 percent of seniors experiencing hospital harm, such as urinary tract infections, pneumonia and falls. 

Therefore, breaking the stigma is more critical now than ever before.

Fighting Stigma

So, how can we break dementia-related stigma?

Krista Schiefler, whose dad, John Poole, was diagnosed with vascular dementia in 2012, has the right idea.

From left Krista Poole with her husband, Mark Schiefler, daughter Eva, father John and Daughter Sophia.

"As a family, we made a decision early on to keep life as normal, active and happy as possible for my dad. We didn't want him to become defined or limited by his dementia diagnosis. Instead, we wanted to be open about it and to push boundaries to normalize dementia for those around us," she says.

 Schiefler made it a priority to inform herself, and to talk about it with family, even her daughters, who at the time of her interview with Dementia Connections were 12 and 15 years old.

 By having an open dialogue about the disease with everyone in the family, the Schieflers could break the stigma and allow Poole to live well with dementia.

 This small step made a significant impact on Poole, as well as on his family, friends and colleagues. They may have never learned about dementia otherwise.

 Here are three things we can all do to fight stigma:

1. Unlearn old assumptions by educating yourself. Put negative labels regarding dementia behind you. Consider visiting the Dementia Connections Listings page to learn about the many educational, dementia-related webinars available to you.
2. Speak to those with lived experience. If possible, have conversations with individuals living with dementia. (See the "learn more" section for information).
3. Support Caregivers. Be a listening ear and helping hand to caregivers.

 As an intern, I was fortunate to be put into a position where I learned about dementia through people with lived experience. Now, I try to educate people regarding dementia, especially in marginalized communities, where they are more likely to develop the disease. 

A study that tracked 6,000 seniors over a 12-year period in England found those who had accumulated the least wealth were 50 percent more likely to develop dementia than those who earned more.

The study, completed by the  English Longitudinal Study of Ageing, also emphasized that people of lower socioeconomic status typically have poorer diets and exercise less. However, it's important to note that this is often due to factors beyond their control. 

With dementia cases in Canada expecting to double over the next 10 years, education regarding the disease is crucial, especially to help in breaking the stigma.

With my newfound knowledge and connections within the community, I will continue to voice these concerns and educate the people in my communities. But, even more importantly, I will make educating myself about dementia a lifelong learning and unlearning process.