Demystifying Dementia
by Women’s Brain Health Initiative:
Popular Culture Can Help Reduce Stigma.
Literature, cinema, and the news media play a pivotal role in both mirroring and moulding societal perceptions of dementia, consequently influencing the stigma associated with it.
Examples like The Notebook, Away from Her, The Father, and Still Alice readily come to mind. Some of these works excel in authentically depicting the complexities and hardships of dementia, while others inadvertently reinforce prevalent stereotypes.
Those living with dementia have emerged as increasingly vocal advocates, boldly addressing the discrimination and the persistent dearth of knowledge and respect they encounter within the healthcare sector and the broader community.
Endeavouring to “see through the eyes” of someone living with the illness becomes the single most influential insight we can provide to care partners and the broader community, fostering a deeper understanding of their individual experiences and the need for change. Read on to learn about several people who’ve taught us more about dementia by sharing their stories.
GAVIN CRAWFORD
There is a fine line between tragedy and comedy, a line that Gavin Crawford has walked throughout his career as a comic. The host of CBC Radio’s Because News and alumnus of This Hour Has 22 Minutes often infuses a twinge of sadness into his performances.
“The world is a sad and ridiculous place, and that’s where I find a lot of comedy,” he told Mind Over Matter®.
Crawford explored that boundary between tears and laughs in a deeply personal way when he embarked on a podcast about his mother Donna’s experience with Alzheimer’s disease (AD). In the seven episodes of Let's Not Be Kidding, he paints a loving, wry portrait of an endearingly quirky woman who was a tart-tongued, fierce protector of her gay son. He calls his mom his best friend and the inspiration for much of his comedy.
Crawford frankly describes her gradual loss of memory, while finding moments of hilarity, such as when she decided that his husband, Kyle, was the inventor of Christmas trees, or when they gave her marijuana as a possible treatment and saw her expertly inhaling a joint, even though she claimed she had never tried it before.
“A thing that happened was that I could talk about it in a funny way. I learned how to navigate the sadness, grief, and the humour,” he said.
Crawford mixed in conversations with such other entertainers as Jann Arden and Scott Thompson who shared their experiences with parents with dementia. He said part of his motivation for creating the podcast was to give other people facing the same challenges a sense of what they could expect.
“You don’t realize when you’re going through it how little you talk about it with other people, even in your own family. Everyone has a different experience, but we do have similarities that everyone goes through. I thought, this would have been good for me to know, or to understand that you’re not the only one.”
Perhaps the most heartbreaking moment was when he had to take his mother to a long-term care facility for her own safety, and Donna tearfully begged him not to leave her there. In the podcast, the guy who makes a living making people laugh broke down while recalling the memory.
“You’re going to feel like the worst person in the world. But you have to do these really hard things for their safety. You really do feel like a villain out of [a] Roald Dahl [book]. It seems so harsh, but it’s actually the least harsh thing you can do.”
Artists have always drawn upon personal experiences for inspiration. With society speaking more frankly now about dementia, it is a theme that many are exploring.
TONY WANLESS & JUNE HUTTON
When journalist Tony Wanless discovered he had young-onset AD, he told his wife, June Hutton, a journalist and writer, that they should collaborate on a book about the experience.
“He really wanted to be able to reach out to people and teach them. He was very pro-medication after he was prescribed Aricept and found it made a difference for him. He wanted everyone to know it was a good thing and he would love to get on stage to talk about it,” Hutton told Mind Over Matter® in an interview from her home in Vancouver.
“He had this whole plan, including the title, but he kept forgetting.”
The title of their book, Four Umbrellas, A Couple's Journey Into Young-Onset Alzheimer’s, came from an incident when Wanless packed four umbrellas for a trip, a metaphor for what the disease does to the brain.
With his memory constantly eroding, Hutton became the principal narrator, with Wanless’s observations inserted throughout. As the book progresses, the effects of the disease are evident, as he starts making an increasing number of errors in his copy, something that would have never happened before in a man who was a stickler for spelling and grammar.
“It was sometimes exciting, and other times heartbreaking because he was such a smart guy,” said Hutton.
They frankly and honestly mined even the most challenging moments, aiming to give a true account of their experiences.
“When he would get angry with me, I’d say ‘write that down … that’s a perfect nugget.’”
Although they were telling a difficult and painful story, Hutton said writing a book together helped them get through it.
“It all helped when you’re handed something as dreadful [as Alzheimer’s]. We chose a creative response for us. It gave us a project during the pandemic in which we worked together. It was a bonding process.”
Others who were going through a similar experience were hungry for knowledge about dementia.
Early this year, when she finally had to place Wanless in a care home, the staff bought several copies of the book and shared it with other families. In retrospect, Hutton believes that Wanless was showing early signs of AD as much as 20 years earlier, but they believed he was just an “absent-minded professor” type. Now she is angry that they had such difficulty getting his doctors to pay attention, a message she hopes readers will absorb.
“I’m hoping they come at their doctors hard. The doctors don’t take it seriously. People should go in mad as hell, and it’s usually women, because they’re the caregivers.”
JENNIFER DANCE
Jennifer Dance was also motivated to tell a story about the challenges faced by care partners. Her novel Gone but Still Here is infused with insights drawn from her time caring for her longtime partner Feroze.
“It was my personal experience of being a caregiver that drove me to it. I was having such a hard time and wanted to try and give other people a heads up. I tell people that if I had not put Feroze in long-term care three years ago, I think I would be dead now,” Dance told Mind Over Matter®.
In the novel, the character of Mary struggles to finish a book about her late first husband, Keith, and their challenges as an interracial couple coping with bigotry in the 1970s, a story that mirrors Dance’s real-life experiences. She was also married to a Black man named Keith who died young.
Mary’s task is complicated by the progress of dementia. Jennifer Dance does not have Alzheimer’s but was diagnosed with mild cognitive impairment, a precursor to dementia.
“I related to Mary’s struggles to get the story down, and that’s why I wanted to tell the story of Keith. He was my first love, and for me to survive losing him the way that I did, I had to push his memory down. Keith needed to come back into my mind and my story.”
Dance also feels deep gratitude for the people offering support programs through the Alzheimer Society of York Region and wanted to share her experiences to give back to those who helped her and Feroze in a time of deep need. She believes that it’s helpful to see more stories about dementia in popular culture.
“I think it’s great because up until fairly recently, all mental health issues have been taboo, but a whole load of people are going through this, and I don‘t think there’s been enough support for them and the caregiver. It’s such a struggle.”
Jennifer Dance, June Hutton, and Gavin Crawford all said that telling their stories was therapeutic. In Crawford’s case, he finds that he cannot watch movies like Still Alice or The Father that tell fictional stories about dementia. He is always listening to people relating their real-life experiences. Since his podcast came out, many people have contacted him.
“It’s become a much larger thing than I ever anticipated doing. I get feedback almost daily, with people writing, ‘You don’t know me, but this is what’s happening with my loved one.’ They share their stories with me, which is actually great because I know they really need to.”
Reducing stigma is an important step in improving the well-being of people with dementia and helping to protect against social exclusion. By dismantling misconceptions and stereotypes surrounding dementia, we can create a more inclusive and compassionate society that supports those affected by this condition, ultimately enhancing their quality of life, and ensuring their rightful place in our communities.