(I’m still working on loading the video clips of Dad in action)
Adrienne: While COVID has been hard on all of us, it has presented very unique challenges to those with dementia. As his parent’s care-giver, our Wellness Columnist, Scott McPherson got to witness first hand, how the pandemic slowly erased his parents sense of a larger world. Fortunately, he is here today to discuss a discovery he’s made that about a very surprising, COVID-friendly way to create a sense of activity AND community for his parents. Hi Scott.
Scott: Hello Adrienne.
Adrienne: Let’s start by establishing where your parents were at before the pandemic?
Scott: For about 15 years, my Dad’s been largely unaware of the larger ‘world.’ So he only knew his little routine of lunches and card games with friends. But he had no other ‘reality.’ And until about four months into the lockdown, Mom had a normal conception of the world. But her memory’s bad. So if she was watching the news, she’d often need the context explained.
Adrienne: And what sort of effects did you see the lockdowns having on them?
Scott: I should start by saying that all three of us supported Dr. Hinshaw and the safety measures. But we also knew it wasn’t going to be easy. People with dementia rely a lot on sequential, geographic memory. So their sense of the world gets created by their schedules, and locations, and faces, and activities that keep re-creating their sense of reality. And even for healthy people, after about four months, the whole city was having trouble remembering what day it was. The whole social-schedule part of our brains shut down. That’s when Dad just got sadder and less interested in his shows or books. Mom started drifting in space and time. Real and fictional events were sliding around her memory on top of each other, out of order. She found that quite stressful. Over time, things like phone calls or video got more and more abstract. They lost the attachments to people and their voices. And it was all so intensely boring.
Adrienne: Was there any literature or research to turn to that might have helped?
Scott: In 1918 Psychology was still just starting as a field, so there wasn’t a lot of data. And scientists today were asking the same questions I was. We were all looking for ways to create a larger sense of the world, and activity, and of the passage of time. So, like most people, I started with a rigid schedule. Get up at the same time, eat at the same time, move into the other room for certain types of shows. Then back again. In each case, I tried to make each day, or section, seem as separate and discrete as possible.
Adrienne: How did that work?
Scott: It did add a bit more of a sense of ‘life’ to their lives. They got more interested in their phone calls after that because they felt like they had something to talk about. Their days felt more… eventful. So that was good. But they would get bored with their surroundings, and they really missed seeing people. And life had no point. After a while, video wasn’t working, and the phone wasn’t working. So I kept looking for a way to create a larger sense of activity, and of time with friends.
Adrienne: That seems like a tall order during a pandemic. How did you approach solving that?
Scott: I imagined my problem as an advantage. I realized, if their minds can’t lock into reality, then there’s no point in spending each day dragging them back to the worst reality since WWII. Since it would need to be constantly re-created each day, they just needed a reality that was enjoyable, that included time with friends. And that’s when I noticed that Mom often got happier when she inserted herself into the plots of the shows she was watching.
Adrienne: Oh, that’s weird. But how did that help you develop a sense of community or activity?
Scott: When my buddy Mike bought a new Xbox and he kindly gave me his old one. (Thanks Mike!) I hadn’t had a console since Intellivision. But I did have a theory. So I started experimenting with Dad. He served in the war, so I got the WWII version of Call of Duty. It looks photo-realistic. But it’s a first person shooter, which means you’re looking out the eyes of your character. And Dad struggled to translate that idea. Plus the graphics were too complex for his eyesight. Then I tried hockey. I plugged in NHL18. It has a mode called ‘Be a Pro’ where you can build a player. You can choose where they are from, their name, their height, their weight. But also their chin, cheekbones, or nose. Eye shape, eye colour, eyebrows. Plus equipment. So I built Dad. Including his grey hair.
Adrienne: You mean as a 94 year old? Or as a young version of himself?
Scott: See, that’s the great thing. He doesn’t notice either way. So I made him 17, like all of the other players in Junior. Then I assigned him to the Medicine Hat Tigers, where my Mom grew up. Dad’s a Center. Number 4.
Adrienne: So how does this work? Your Dad sees himself playing hockey?
Scott: Yeah. They say nonsense to me all the time. So I just sat down one day with the controller and I turned to Dad and asked him, “Do you feel like watching one of your old games on TV?”
He looked a little confused, and asked “What games?”
So I had the game loaded and it was his first game as a Tiger. I said, “See? There you are at centre, taking the face off. Number 4.” Now keep in mind, in the game, it’s the NBC TV crew announcing. And the full NBC graphics. And we watch hockey, so it’s all familiar to Mom and Dad. Except now they hear stuff like, “McPherson will be taking the starting face-off at Center.” And there’s Dad. In uniform. It’s his face. When he scores they announcer says his name. And the TV cameras focus on him and show his current stats. It all looks very real. And so they think it is. Mom will even mention seeing herself in the stands. She loves that.
Adrienne: So they’re actually watching your Dad play a season with the Medicine Hat Tigers?
Scott: Ya, a full one. They’re enjoying it. He got knocked out of the Championship in the 2nd round. It’s created a bigger, more active reality. Things are happening. He ended up getting drafted by the Chicago Blackhawks. I’m not very good so he went in the 3rd round –sorry Dad. If people want to see it, I’m going to be putting up highlights of him on my blog (I’m still working on technically how to do that).
Adrienne: But how does this have them spending time with friends?
Scott: I realized a few games into it, that Dad’s teammates would be with Mom and Dad all season. So I started referring to them in familiar ways, by their first names. It didn’t take long before they were excited any time anyone on Dad’s line scored. It was like they knew them. As long as they’re not too tired, to them, the games mean they’re actually going somewhere. And when they’re there, they perceive they’re spending time with Dad’s teammates. They look forward to it. In the morning Mom will ask what time Dad’s game starts. And they feel really good when Dad wins, and Dad feels proud when he scores. And since they always live in the present moment, if I didn’t keep reminding them of it, it would all just vanish, which is what we’ll do when they can get back to their social groups. For now I just have to do him proud and try to win a cup. He’ll feel genuine pride.
Adrienne: Do you feel that this could work for other people?
Scott: That’s mainly why I’m mentioning it, because potentially yes. With all kinds of games. Who knows? Future ‘happiness attendants’ at Retirement Homes might be gamers. They could help the dementia patients become a team of pro athletes. People with advanced dementia struggle to live in ‘our world.’ But that’s more our issue. As long as they are happy and okay in their reality, that’s better for them than constantly battling us as we try to drag them into our reality. Bottom line, they enjoy their time at the games. Dad feels accomplished. And now Mike’s talking about bringing over his Oculus VR setup. So who knows how good this could get?
Adrienne: Well thanks so much for telling us about this Scott. It’s really interesting.
Scott: Yeah, who’d ever think they’d see their 94 year old Dad get drafted into the NHL?
For those who may be unaware of it, I regularly have the pleasure of discussing mindfulness practices with Adrienne Pan, the co-host of Radio Active on CBC Radio One.
Once the show has aired, if there is an audio version available I will add a link to it here. A listing of all of the columns is here. For those without audio versions, I will attach a transcript of the column to this post, after its airing.
During COVID, without a schedule, regular activities, and time with friends, my parents saw the effects of their dementia increase. The impacts were quite negative, and numerous efforts to buoy their spirits only worked in small part. In search of a way to create a greater sense of changing locations, and of community and activity, I stumbled into a very strange approach that ended up paying big dividends when it came to giving them something to look forward to. It’s something that’s allowed them to spend time with ‘friends,’ they’ve enjoyed it, and it has even allowed them to have a sense of achievement. And the best part is, if it worked for them, it will likely work for others.
Consider checking us out. If you’ve never heard the CBC Radio Active show before, I’m sure you’ll enjoy it. They have a great team.
Take care everyone.
A serious childhood brain injury lead Scott to spend his entire life meditating on the concepts of thought, consciousness, reality and identity. It made others as strange to him as he was to them. When he realized people were confused by their own over-thinking, Scott began teaching others to understand reality. He is currently CBC Radio Active’s Wellness Columnist, as well as a writer, speaker and mindfulness instructor based in Edmonton, AB where he still finds it strange to write about himself in the third person.