With the Public Health Agency of Canada launching an important awareness campaign on dementia this month, Jay Ingram, Canadian author, renowned broadcaster and Member of the Order of Canada, is speaking out. Jay lost his mother to dementia, and has agreed to lend his voice to the cause to raise awareness, reduce negative perceptions about the condition and highlight the abilities of those living with it. —Noa Nichol
Hello Jay; please tell us a bit about yourself to start.
I’m a science writer/broadcaster; I quit a Ph.D to do that (which at the time must have seemed pretty stupid). I’ve done a lot of hosting of science shows: Quirks and Quarks on CBC radio for 12 years, Daily Planet on Discovery Channel Canada for 16 years and I’ve written books for both adults, young adults and kids. I grew up in Winnipeg, and have lived in Edmonton, Toronto and now Calgary. I have three kids and a grandson, Oscar.
January is Alzheimer Awareness Month in Canada, and you are lending your voice to the cause, to help raise awareness about this widely stigmatized condition. Can you tell us, please, about your personal connection to dementia?
Sadly I’ve had many relatives with dementia: my mother, two aunts, a father-in-law and a mother-in-law. So I’ve had plenty of opportunity to learn about the assumptions people make about those living with dementia and how many of those assumptions actually diminish the quality of those relationships. When dementia changes the nature of interactions and communication, as it does, caregivers have to roll with the punches. The loved one living with dementia is still the same person, however much it might not seem that way to you, and still deserves the love and affection you’ve always shared.
A recent survey revealed such startling statistics as: 46% of Canadians do not feel fully comfortable interacting with a person with dementia, and 60% of Canadians fear being treated differently if they are diagnosed. Why do you think this condition is so widely stigmatized, with so many negative perceptions around it?
People don’t feel comfortable because things have changed and it’s very, very hard to accept that. But as I just said, they’re dealing with the same person, a person whose comments and reactions are changing. No one asked for these changes, no one finds them easy to deal with. But the goal always is to ensure that the person with dementia still enjoys life.
Why do you believe we need to eliminate the stigma and normalize the condition of dementia? How do you think we can collectively show empathy toward those who live with it, and make our communities more supportive and inclusive for people living with dementia?
If we don’t reduce the stigma then we’re guaranteeing the continuation of inadequate care. Assuming that the person living with dementia cannot appreciate what used to delight them is just that – an assumption. Just because they don’t react in the way they used to doesn’t mean there is no enjoyment or contentment there. I was told a story of a daughter taking her father, who had dementia, to the zoo, where he spent a long time silently watching the hippos. He didn’t say much; he was engrossed by them. Imagine if she hadn’t bothered, assuming he wouldn’t like it.
Finally, if you could relate just one thing about dementia/the experience of a family member with dementia, what would it be?
I think one of the most important qualities for a caregiver is patience—there’s no rush! If the person living with dementia seems to take thing in more slowly, then slow down. If they see things that aren’t there, or imagine they’re about to take a long vacation, don’t disagree! What is the point of that? It might seem strange at first but it’s much more harmful to be constantly correcting someone than it is to play along. Here’s a story: a man visits his father in a long term care home. Father brightens up when he enters the room and says, “I had the most fantastic lunch today with Pablo Picasso and Winston Churchill. It was an amazing conversation.” Bad response: “Dad, they’re dead. You couldn’t have had lunch with them.” Good response: “ Wow! That’s a way better lunch than I had.” And the conversation continues.