Tick, talk: It’s time to shift public conversation about dementia toward respect

This article originally appeared in the Toronto Star on March 29, 2022. It has been re-shared here with the Star's permission.

Billions of TikTok users, who create videos on the app and then share them across social media platforms, create personal vignettes that are usually fun, often educational and even refreshingly uplifting.

But like other online networks, TikTok has a mean streak; some users are exacerbating the stigma around dementia by ridiculing those with memory loss, filming their confusion or anger without their knowledge or consent. In one, a woman with dementia was recorded trying earnestly to give water to a doll as the TikTok user chuckles. The lack of respect is disturbing and the many comments appalling.

Even well-meaning TikTok clips — those that try to show how life with a person who has dementia has its ups and downs — can objectify the person and are usually taken and posted without the informed consent of the person with dementia. This violates their rights while reinforcing and extending harmful stereotypes.

And it’s not just family members hitting the record and post buttons. Last year, CTV News reported on an investigation that found a personal support worker was posting dehumanizing photos of long-term care residents on her TikTok account. The account is now private after the backlash received.

Denigrating videos and postings say more about their creators than their subjects. Even after COVID-19 showed us the damage that ageism causes, the hallmarks of much public discourse about dementia and aging that flow through popular culture — books, news, films, TV series — tell stories based on fear, confusion and ignorance.

In fact, if people are diagnosed earlier rather than later and have supportive networks of caregivers, family and friends, they can live meaningful lives with dementia. In Canada, about 750,000 people have memory loss; that number will double in 10 years. Our fear about dementia is misplaced; the threat is stigma.

Those of us working as advocates and researchers in the field deplore these unkind, unethical and uninformed depictions. We argue for a new narrative about dementia — including public conversations that include voices of people with dementia.

This is not to sugar-coat problems but to challenge stereotypes and prejudices that reduce the identities and contributions of those living with dementia to their diagnosis rather than the complex individuals they are.

For three decades, the Alzheimer Society of Canada has funded research projects specifically focused on enhancing the quality of life of people living with dementia and promoting the arts to help people flourish by focusing on strengths and engagement in their communities.

The Society supported the initial launch of the intergenerational Voices in Motion dementia choirs, which celebrate the full potential of living with dementia by connecting music, old and young people, and joyful purpose. At the well-attended public concerts, the audience is often surprised that they can’t tell who has dementia and who doesn’t.

A University of British Columbia research group has just launched a website, FlippingStigma.com. It is by and for people with dementia to share resources on identifying stigma and what to do about it helping change society’s misconceptions about memory loss.

If Canadians are willing to support this new wave of dementia research and the growing number of people it serves, we can move the narrative away from continuous decline, caregiver burden and public fear. We will begin to see the contributions, joy and love in the lives of those with memory loss and in their families, as well.