Dementia is often defined by what people lose, but a more helpful question is what abilities remain. In a recent episode of Varsity’s Roundtable Talk, Derek sat down with Teepa Snow, occupational therapist, educator and founder of Positive Approach to Care, one of the most influential voices in dementia care.
Their conversation explored why fear still shapes public perceptions of dementia, how communication must adapt as brain changes occur and why Snow prefers the term “care partner” over caregiver. She also discusses caregiver burnout and the importance of building stronger community support around people living with dementia. The following are some fresh perspectives from their conversation. Check out the full episode here.
WHAT DOES IT MEAN TO TAKE A POSITIVE APPROACH TO DEMENTIA CARE?
Well, in my experience, I can’t use what you can’t do. It’s not possible. What I can do is engage with you and see what you have. And that’s where we can come into a relationship and I can work with you. I need to tune in to the reality of who you are now, not just who you were and what you’re capable of, because that’s what we have to work with and come together with.
WHY IS FEAR STILL THE DOMINANT EMOTION PEOPLE ASSOCIATE WITH DEMENTIA?
I think human beings, as a rule, like the predictable. They like once they master something, they don’t have to think about it so much. And I think what dementia does is rob us of our knowingness. It forces us back into a space of paying attention, being observant. The reality is dementia is ever changing. You don’t get to relax into routine. You have to stay alert, and maybe people don’t want to be on the job so much.
WHAT MISCONCEPTIONS ABOUT DEMENTIA DO THE MOST HARM?
The idea that everybody experiences the same kind of losses and changes in the same order. Alzheimer’s tends to take the front seat, but if I’m living with Lewy body or vascular dementia, my symptoms may be very different. It pays to get a pattern established of what I’m living with and how it’s going. And people also think it only happens to older adults and that it’s all about memory. Memory is just this much. There’s a whole lot more going on.
HOW EARLY SHOULD PEOPLE START LEARNING ABOUT BRAIN HEALTH AND CHANGE?
I would like us to learn more about brain health and wellness when we’re younger. Kids know their body parts, but they don’t know the brain parts, and those are super important. If I know how my brain’s supposed to work, then I can notice when it’s doing something unusual. We tend to wait until there’s so much evidence something isn’t going well, and by then we’re past screening and dealing with significant change.
WHY DO YOU PREFER THE TERM “CARE PARTNER” OVER “CAREGIVER”
I believe there is no care about me without me. It’s time to quit treating someone living with dementia like they’re a football and we’re passing them around. It’s their life, their care. I’ve got to figure out how to work with that human being. I can’t just give care because if I give it, you have to receive it. If you don’t want it, you don’t want it. So I have to partner with you.
WHAT ARE EARLY SIGNS OF CARE PARTNER BURNOUT?
If I were to ask you to tell me three things you’ve done today for yourself and you can’t, that’s a sign. If you can’t tell me something you feel good about in your relationship or something that brings you pleasure, it’s time to have a conversation. We don’t train people for this work. We drop them into it and they keep going until they drop. We need to build community around this, not expect one person to carry it all.
Want to hear more from Teepa? Check out the full episode of Roundtable Talk for more fresh perspectives. Watch new episodes of Roundtable Talk on the Varsity website and on Apple Podcasts, Spotify, and iHeartRadio.
