Welcome to Mayo Clinic podcast. Our topic today is tips about caring for someone with Alzheimer's disease. I'm your host, Rich Dietman.
In today's podcast, we're talking about some things that you can do to be a more effective caregiver for someone with Alzheimer's disease. My guest is Dr. Glenn Smith. Dr. Smith is a Mayo Clinic neuropsychologist who specializes in the treatment of Alzheimer's disease. He's also a consultant in the Department of Psychiatry and Psychology at Mayo and a professor of psychology at Mayo Clinic College of Medicine. Dr. Smith, thanks for joining us.
Dr. Smith: My pleasure.
Rich Dietman: To begin with, caring for someone with Alzheimer's disease is often an extremely demanding commitment. For people fairly new at providing such care, how important is it to remember that their loved one may not be able to do the things that he or she once did?
Dr. Smith: Rich, I think this is one of the greatest challenges. It's recognizing that, for 50 years, 60 years sometimes, you knew this person — if it's your spouse that's affected or if it's your parent that's affected — in one way. And it's very hard to change your view of that person and understand that they now have some thinking challenges or memory problems. So as I work with families, many, many times they tell me about an interaction with their loved one where they say, "You know, I started this sentence by saying 'Don't you remember,' " and of course they know that the person can't remember. So they know that the person doesn't remember, but they're still responding to them as if they're the person they once were. It's a real challenge. And we call that, psychologists call that, denial. It's not meant in a pejorative way to say that the person is experiencing denial or in denial. It's just the recognition that that habit, that view of the person they knew, is so hard to change. But that's the fundamental first step in caring, is coming to accept that this person now has limitations that they didn't once have.
Rich Dietman: Is there a technique for shaping a situation that makes use of a person's existing abilities? Let's say a person who's a caregiver does what you say, and that is recognize the denial element, and then tries to go past that and tries to adapt to their parent or loved one's situation. Is there a way to go about doing that so that there's a successful outcome in any given behavior?
Dr. Smith: Rich, you've used the key word, and that's "success." A person who's having cognitive failures daily — frankly virtually every hour of the day — needs to have some opportunities to succeed created for them, so they're not experiencing failure after failure. So we work with families to try and adjust the expectations of the person so that they're constantly experiencing success, rather than failure. So say my spouse has a memory problem and say my spouse has been the one to always prepare the meals. So now she's starting to struggle to put together the dinner. Well, we could change the expectations so that I might lay out all the ingredients so that she didn't have to remember all the ingredients. But she could still put them together in order to cook that meal. And as the disease progresses, if she starts to fail at that, maybe I could put all the ingredients together, but she could set it on the table — so on and so forth. So we keep adjusting the expectations so that we're making activities failure-free, and we're manufacturing success. An important part of manufacturing success is to frequently praise the person and to express appreciation for them. Their failures are happening enough, and oftentimes in their own awareness, that we don't need to emphasize those. We need to emphasize what are the opportunities to create success for this person. Eventually the activities we have them do may not have a positive impact on the flow of the day. Say we get to a point where we just ask them to set the table, and they're not setting it correctly. Well we shouldn't focus on the outcome of whether the fork is in the right place and the knife is in the right place, but rather, were they engaged in some activity that was meaningful to them that we can praise? Because it's easy enough to reset the fork and the knife all on our own. So manufacturing success and recognizing that that changes over time, what they can accomplish changes over time, is another key part of the care process.
Rich Dietman: So it's important for the caregiver to recognize the change and also to set aside, for lack of a better term, judgment.
Dr. Smith: Right.
Rich Dietman: At least, judgment in the way that it might have originally — judgment right or wrong kind of thing.
Dr. Smith: And to focus on the process, not necessarily the outcome.
Rich Dietman: Talk about what is termed problematic behavior in a person with Alzheimer's disease, and that's a pretty broad term, but as the disease progresses, at least in some people, there are behaviors that cause problems.
Dr. Smith: Right, problematic behavior is a very broad range of things. But it can range from the person, you know, having no focus, wandering, from the person maybe beginning to shadow the caregiver so that the caregiver can't even go to the bathroom without this person wanting to be in their presence. It can range from agitation, refusing to engage in certain activities like bathing, changing clothes, etc. So those problematic behaviors are bound to happen. We can get so focused on them that we forget that what competes with problematic behaviors are those very successes that we were just talking about in terms of manufacturing success. If as caregivers we get so focused on what we don't want the person to do that we're trying to, what I describe as, create a behavioral vacuum — in other words, suppress all problematic behaviors without increasing those success behaviors — we're bound to be frustrated. So recognizing that the more we emphasize "How do I create successful behaviors?" the more the problematic behaviors are going to be interfered with by those successful behaviors.
Rich Dietman: So less "Don't do that" and more ... what?
Dr. Smith: More finding opportunities to engage the person in meaningful behaviors, so having an exercise time during the day. One of my favorite all-time caregivers was struggling with evening activities. His wife would get more agitated in the late afternoon — the so-called sundowning phenomenon — and he realized at some point during the course of her care that she used to love to dance. And he hated dancing, actually, but it occurred to him, he needed the exercise, she needed the structure, so they started having a dance every evening where they'd put on some old music she could relate to and just dance. So for at least those 30 minutes of dance time, she wasn't engaged in the agitated behavior that he had been struggling with. So focusing on what you can do, instead of what you don't want to do, is a key part of the caregiver's repertoire.
Rich Dietman: Something that you've talked about before that seemed like a very simple thing but that many people might not think about — you talked about the shadowing a bit ago, you know, where the person wants to literally follow you everywhere, and you talked about giving a card with just some basic information on it — talk about that a little bit.
Dr. Smith: Right. Well, imagine if our memories were failing us. We would be living moment to moment in the most literal sense of the word — you know, that we used to talk about: Live in the moment. Well that's actually all persons with Alzheimer's can do. So if I'm living in the moment, I need something or someone to reconnect me to what's happening in the world because I can't remember what happened five minutes ago. I can't necessarily remember what's going to happen in 10 minutes. That's why we think people begin to shadow, because they look to that person they love and trust to be the connector to their place in time. So if you are that person and you go to go to the bathroom, I'm suddenly without my memory, floating in time and space. So giving people a connector to help them know what's happening — like a card that simply says "I'm in the bathroom. I'll be back in just a couple minutes" — can help reconnect that person to time and space. Without that card, they need to go in search of you because they can't remember that you're going to be in the bathroom. So we talk about that as sort of creating anchors for the person, to re-anchor them into the reality of the time.
Rich Dietman: Dr. Smith, we've been talking about tips for caregivers, things that they can do for their loved one. Are there some things that caregivers can do or should be thinking about doing for themselves?
Dr. Smith: Yes, Rich. I'm glad you brought that up because one of the most important things to recognize in the course of being a caregiver is that this is not a sprint — it's a marathon. Caregivers want to provide care for as long as they can. And to be able to do that, you've really got to take care of yourself. One of my caregivers once gave this analogy: When you get on an airplane and you're traveling with dependents, if an emergency arises, the oxygen masks will drop down. Whose mask are you supposed to put on first? If you're the caregiver, you have to put on your own, because if you don't, you're not going to be available to put on the other person's mask. And that's an important parable for being a caregiver. You've got to take some time to do some things for yourself so that you have the energy and the emotional reserve to be able to care for that other person in the long run. So whether that's maintaining your exercise schedule or whether that's having a care, an additional friend or paid professional come in so that you can get away and maintain your bridge club, whether that's taking short trips on your own without your loved one anymore, and having the family help you out — doing those things that sustain yourself is very difficult. You feel some guilt because your loved one can't enjoy that with you. And yet you have to recognize that when you're doing that for yourself, you're actually doing that for your loved one so that you can continue along this path for as long as possible.
Rich Dietman: Thanks very much, Dr. Smith. We've been talking about caregiving for someone with Alzheimer's with Dr. Glenn Smith, a neuropsychologist who specializes in treating Alzheimer's disease at Mayo Clinic. You've been listening to Mayo Clinic podcast. I'm Rich Dietman.
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