Just Released: Dementia Care for Caregivers from Dr. Kenneth Robbins and Real Caregivers

Kenneth Robbins (0:00)

But I think that becomes very challenging with dementia caregiving. It requires one's full attention, in part to be there to support the person, but also to understand what they're going through.

Oh, Charlie had a story, a tale to be told.

Charles Levin (0:26)

Welcome to The Munn Avenue Muse. Today, I'm joined by Dr. Kenneth Robbins, co-author of Until You're In It, Dementia Care, Real Stories, and Expert Guidance for Caregivers.

Ken is a good friend and a physician board certified in both psychiatry and internal medicine. Over the course of his career, he's worked extensively with geriatric patients, particularly people living with dementia, and has also helped lead healthcare system efforts to better integrate psychiatry and medical care. His approach is rooted in team-based treatment that looks at the whole person, not just the diagnosis. In Until You're In It, Ken combines decades of clinical experience with the real stories of caregivers who've lived through the uncertainty, exhaustion, difficult decisions, and unexpected moments of connection that come with dementia care. Ken, welcome to the Munn Avenue Muse.

Kenneth Robbins (1:32)

Thanks so much, Charlie. It's a pleasure to be here.

Charles Levin (1:35)

Well, full disclosure, I am a co-author on this book with Ken and two other wonderful people, which you'll hear a little bit more about.

So I'm definitely biased, and I've been a good friend of Ken's for many, many years. So you'll hear a little bit more about that too. But Ken, you spent decades caring for people with dementia. What finally motivated you to say, I'm going to write a book?

Kenneth Robbins (2:05)

Yeah, it's a great question. And one of the things I've learned in working with people with dementia is that knowledge is critical. And getting through caregiving with a dementia patients, if you don't understand the process of dementia, if you don't understand how to assess somebody's skills and deficits, if you don't anticipate what's likely to come next, it is so much more difficult to be a caregiver.

And I really wanted to try to help caregivers get the information that I think is so hard to get on your own. And the idea that you and I developed together of interviewing caregivers and understanding what they themselves have learned and hearing some of their stories, and then writing a commentary to go with those stories, I thought might really make a difference for people managing dementia and the caregivers who are trying to help them.

Charles Levin (3:06)

Yeah, yeah. The stories are quite poignant and in some cases, heartbreaking in other cases, inspiring in many cases both.

The title is Until You're In It, which Alison Colson, one of our co-authors, came up with, and it's very descriptive. I mean, what is it about dementia caregiving that people simply don't understand until they're in the middle of it?

Kenneth Robbins (3:37)

Well, so that title came from several of the caregivers themselves who used that phrase when they described their experience. And I think it's hard to recognize how all-encompassing caregiving is when you're working with somebody with dementia. I think we live in a time where all of us try to multitask. And, you know, while you and I are doing an interview, you know, perhaps I'd have my phone on with looking at something. And, you know, I watch my kids and rarely are they just doing one thing at a time. But I think that becomes very challenging with dementia caregiving. It requires one's full attention in part to be there to support the person, but also to understand what they're going through.

You learn a new language. You learn a new way of interacting. And you really have to be paying attention in order to be helpful.

You can't do it while you're distracted.

Charles Levin (4:42)

Yeah, that's probably is a surprise even if you know it's coming. Just because it requires a change in your basic behavior as a human, right? To accommodate this. But, you know, then there's some joy in it too, which is I think one thing that you taught me that I've even seen it on TV shows. Oh, somebody has dementia. Let's figure out how to do euthanasia and early suicide or something.

Can you talk a little bit about the reasons not to do that and what some of the upside is of this experience?

Kenneth Robbins (5:28)

Yeah, thanks for asking that, Charlie, because that was really, aside from you and I talking about the potential of helping people, one of the things that really got me interested in writing this book was that it became popular to write books, and there's several out there now about how to get euthanasia while you're still competent after you get a diagnosis of dementia. And I get that there's a hopelessness that people feel, but I think it's largely because they're uneducated and they think of all the worst things that could happen. And the truth is that if you're educated, if you know what's coming, if you know how to help, you can avoid those pitfalls in large part. You can catch things early before they become so dramatic. And I think one of the things that people learn as dementia progresses is how important it is to just be together.