Fight the Stigma of Dementia—And Protect Your Own Brain Health

Combatting dementia stigmas

We may often hear people talking about an older person having dementia, and we use the term ourselves, but do we really know what dementia is and who is at risk for it?

Simply put, dementia is the death of brain cells that impact memory and brain function, says Dr. Sienna Caspar, an associate professor at the University of Lethbridge in the Bachelor of Therapeutic Recreation program. 

She points out that dementia is not a disease in itself; it is cell death due to other diseases like Alzheimer’s disease or Parkinson’s disease.

Having worked in long-term care facilities in Canada and the United States for over two decades as a consultant and certified therapeutic recreation specialist, Dr. Caspar has seen dementia in a wide range of individuals.

Anyone can get dementia, she notes. It’s not exclusive to older adults. However, age remains the most significant risk factor. 

Other uncontrollable risk factors include gender and genetics: women are affected more significantly than men, and rates are highest among people of African and Hispanic descent. 

Some lifestyle factors like sleep, diet, exercise, and social connections also influence dementia risk.

To reduce your risk for dementia, you can make small changes in your lifestyle, like eating healthier and learning new things.

“Everything that we know that helps decrease the possibility of getting dementia also helps increase the possibility of having a good quality of life,” Dr. Caspar says.

So, ensuring that you take advantage of opportunities for education in later life and sticking with healthy foods are two key steps you can take to age well and prevent dementia. 

If neither describes your current habits, have no fear; Dr. Caspar says it’s never too late to start living a healthier lifestyle.

Why is there a stigma around dementia?

Dr. Caspar says the stigma around dementia arises because “we live in an ageist society.” People’s language about older people and ageing can often be as derogatory as racist or sexist language.

“Go to any card store, and I challenge you to find a birthday card after the age of 21 that is actually positive about ageing, that actually celebrates ageing,” she says. 

Another example of ageism in society is the multi-billion dollar industry of anti-ageing beauty products.

The stigma around ageing, in general, is caused by fear; and when that fear is combined with the fear of losing cognitive faculty, it causes even more stigma.

This fear is perpetuated when we only focus on bad news and unfortunate events associated with dementia rather than success stories. 

“News focuses on that which we are afraid of,” Dr. Caspar says. “That’s more newsworthy than that which celebrates our strengths, celebrates our success.”

Why is an overemphasis on safety in dementia care limiting?

Safety is a major concern for those caring for someone with dementia, whether it’s family caring for a loved one with dementia at home or it’s caregivers at an institution for seniors. But it is possible to go too far in trying to save the person with dementia from all the scenarios one can imagine they can hurt themselves.

Putting the main focus in dementia care on safety takes away what Dr. Caspar calls the “dignity of risk.” Going overboard on safety can rob people of their quality of life.

She recalls working at a facility that did not allow anything to be put on the walls in residents’ rooms for safety reasons. Residents were not even allowed to go out to the garden out of fear that they would eat the dirt!

This overemphasis on safety creates a new risk of individuals not thriving, being healthy, or living well.

“All of this fear around protecting and safety and security takes away so much else, the humanness, and disregards autonomy and the dignity of risk for people with dementia,” Dr. Caspar says.

How to eliminate your fear and engage with family members with dementia

“One of the devastating consequences of receiving the diagnosis of dementia is often friends and family fall away,” Dr. Caspar says. “And I think that they fall away because they are afraid that they don’t know what to say. They don’t know what to do.”

She offers some tips on ways to approach talking with a person with dementia that could make the experience more enjoyable for all.

The first point, Dr. Caspar says, is that it’s crucial to meet the person with dementia where they’re at instead of judging them by your standards. Don’t try to make them act “normal.” Instead, accept who they are in the present moment and how they interact with you. 

“With dementia, there's a golden rule, and that's that you can always find truth in what they're saying when you speak to and listen to the emotion, and you connect with them based on the emotion of what they are talking about,” she says.

Further, Dr. Caspar advises that it’s better not to quiz a person with dementia on what you think they should know (for example, about family history or even about colours or objects) because it’s likely that they’ll fail these quizzes. Instead, you should try to engage in failure-free conversations. Don’t ask things that have right or wrong answers. 

“Failure-free conversations are, like, you wouldn't say, ‘What color is this [marker]?’ because that has a right or right wrong answer,” Dr. Caspar says. “You would say, ‘Do you like this colour?’ There's no right or wrong answer there. [Or,] ‘What does this colour remind you of?’ There's no right or wrong answer there.”

If you’re a caregiver of someone with dementia, try to tailor their day and activities so that they can feel connected to something that gives them meaning and purpose. These have to be individual solutions that are all about honouring who they are as a person.

For some people, folding laundry, setting the table, and doing dishes are very fulfilling and give them a sense of purpose. For some people, that would be the last thing they would want to do, and they would rather make art or work in the garden.

“Always [give] them a sense of choice, control, and empowerment in what you’re doing,” Dr. Caspar says. “If that is taken away, the opportunities for success…are decreased significantly.”

How can we fight the stigma against dementia?

It is possible to change the stigma that surrounds dementia and ageing in general. Dr. Caspar noted, for example, two programs that partnered children and teenagers with older adults to do activities together resulted in a significant change in people’s mindsets.

Before the programs started, the children and teenagers were interviewed to see their thoughts about seniors. They often had negative views, but after the programs ended, their perceptions changed dramatically. Some of their opinions changed from uncooperative to cooperative, from inconsiderate to considerate, and from inflexible to flexible.

The reason that these programs worked so well is that they made younger people understand people with dementia, Dr. Caspar says. 

If you want to do this in your own life, get to know and work with people who have dementia by volunteering at a long-term care home or continuing care setting. Personal experience can change your point of view much more than just hearing about the experiences of others.

Another critical step is to assess whether you have biases and try to change them. You should also call out people around you when they say things that perpetuate the stigma against dementia. Finally, Dr. Caspar says, we should focus more on success stories and good news of people living well with dementia, rather than focusing on unfortunate events.

BIO

Dr. Sienna Caspar is an associate professor at the University of Lethbridge in the Bachelor of Therapeutic Recreation program. She specializes in therapeutic recreation for dementia patients. She has over two decades of experience working in long-term care facilities in Canada and the United States as a consultant and therapeutic recreation specialist. Dr. Caspar is also the author of the Measurable Assessment in Recreation for Resident-Centred Care (MARRCC). MARRCC is the assessment used in long-term care facilities to determine a resident's functional level in the cognitive, social, physical, and emotional domains. 

For more information go to: University of Lethbridge