Season 1, Episode 11
The Caregiver Trending podcast features discussions on caregiving topics, interviews with thought leaders, and provides expert advice for caregivers from Homethrive’s in-house Care Guides. Episodes are available on Apple Podcasts, Spotify, or wherever you listen to podcasts.
Dr. Budson is Professor of Neurology at the Boston University School of Medicine and Lecturer in Neurology at Harvard Medical School. His current research uses the techniques of experimental psychology and cognitive neuroscience to understand memory and consciousness in patients with Alzheimer’s disease and related disorders.
He has co-authored several books that focus on normal memory, aging memory, Alzheimer’s disease, dementia, and related disorders. Some of these titles include Why We Forget and How to Remember Better, Seven Steps to Managing Your Aging Memory, and Six Steps to Managing Alzheimer’s Disease and Dementia.
With over 750 academic talks under his belt, along with over 150 published papers to his name, Dr. Budson joins us today to help us break down dementia for caregivers.
Episode Transcript
Ali Habashi: Now, you have tons of research under your belt when it comes to Alzheimer’s and dementia, but I think for this episode, I’d like to hone in on one particular book that you co-authored: Six Steps to Managing Alzheimer’s Disease and Dementia.
So I thought for this episode that maybe we could run through each of these six steps in your book. Sound good?
So step one is understanding dementia. So let’s start with the basics. What is the difference between Alzheimer’s and dementia?
Dr. Andrew Budson: Yeah, so that is actually a great question to start with as it is the most common question that I get asked when I go and give a talk. So dementia is simply a general term that means there is a decline in thinking and memory that leads to difficulties with day-to-day function.
And the way I think about this general term, dementia, I think about it like another general term. Let’s say like a headache. Now a headache can be due to a lot of different things. You could have a muscle tension headache, or a migraine headache, neither of which are very serious.
But you could also have a headache due to a stroke or a brain tumor, which obviously are serious. And with dementia it’s the same way. One can actually develop dementia from something as simple and as treatable as a vitamin deficiency or a thyroid disorder. But one can also develop dementia from a number of different brain diseases, including Alzheimer’s disease, frontotemporal dementia, Lewy body dementia, which is similar to Parkinson’s disease, vascular dementia (which is dementia due to strokes), and there’s many other types as well. So Alzheimer’s disease is one type or one cause of dementia, whereas dementia is the general term.
Ali: So I don’t have to tell you this, but Alzheimer’s I know often dominates the conversation when it comes to dementia. Are there any other common types of dementia that we should be cognizant of?
Dr. Budson: Absolutely. So the next most common type of dementia is vascular dementia. That’s dementia due to strokes.
And although not a lot of people have dementia that’s totally due to strokes, a very large number of people have dementia where the strokes are playing a little contributing role. Now, as you’re listening to this, you might be thinking, well, I know a lot of people with dementia, but I don’t know very many people with strokes.
It turns out that some strokes are noticeable and people are aware of them and other strokes are like these little teeny tiny mini strokes. And if you just have a couple of mini strokes, even a dozen probably is of no consequence whatsoever. But people who get hundreds of these strokes…then that can be a problem.
And unfortunately, mini strokes are quite common when people have medical problems, including being obese or overweight, hypertension, that’s high blood pressure, high cholesterol, smoking, all of these things can increase one’s risk of developing strokes, whether they’re mini strokes or large strokes.
Ali: Oh my gosh, how do I know if I’ve had a mini stroke?
Dr. Budson: Well, what I would say is I wouldn’t worry about it unless you’re having some trouble with your thinking and memory. And then it would be reasonable to go to your doctor and talk about your memory problems. And one of the things that doctors should do is to get a scan of your brain and look for signs of these mini strokes.
But if you want to be proactive, as I hope everyone listening to this does, to reduce your risk of developing strokes, you want to make sure that you keep a healthy body weight, that your blood pressure is very definitely controlled. So your blood pressure is not in an elevated range, but is really in a normal range.
And the same thing with cholesterol, get that cholesterol to be in a normal range. And those are the most important things to do to reduce one’s risk of developing strokes.
Ali: Alright, now that we’ve got a bit of a basis to go off of, and now that I’m scared of little mini strokes, let’s move on to step two: managing problems. There are so many changes that arise with a diagnosis, memory is the obvious one, but struggles can also arise with behavior, vision, speech, sleep, incontinence, among other changes.
What are some ways that we can manage the issues that arise following a dementia diagnosis?
Dr. Budson: So, at some point in the disease, one’s loved one, the individual with dementia, will often start to have some types of problems, such as they’re trying to leave the house to go to what they think is their home, even when they’re already home.
They don’t want to do something that you want them to do, like take a bath or go to the doctors or get into the car or get out of the car. All sorts of problems like this can come up. And I’ll just mention briefly a couple of general strategies that can be helpful for families when they’re in these types of situations.
And I should say this is just a a tiny taste of the types of techniques that we work to teach family members in terms of how to get through the day with their loved one with dementia. This is actually the bulk of the book is managing these different problems.
But the first one I want to teach everyone right now, we call the four R’s. The idea is, let’s say we’re in that situation where, your loved one is trying to leave the house and maybe it’s 7 PM in the evening. It’s getting dark outside and they’re rattling the door. They’re trying to leave the house. And although we might feel like yelling at them, “Honey, stop trying to leave the house. You’re already home.” We sort of know that’s not really going to work. And so we use the four R’s.
We want to first Reassure our loved one that everything is okay.
We want to Reconsider things from their point of view. So perhaps the reason they’re trying to leave the house to go “home” is that because of their dementia. They are not thinking of their current home. They’re thinking about the home that they lived in 30 years ago, or perhaps the home that they grew up in. And then it makes a little more sense as to why they’re trying to leave.
We want to third, Redirect them to things that are both distracting and calming. Perhaps that’s having a little bit of a snack. Perhaps it’s listening to some music they like. Maybe it’s looking through some old photo albums or doing a little dancing. Doing whatever activity will be both distracting and calming.
And then fourth is Relax. And that’s for all of us caregivers to take in a deep breath and relax. Because if we are frustrated or upset or irritated that this is continuing to go on, we will often reflect those emotions to our loved one and just get them even more upset and escalate the situation.
So that’s one very helpful strategy. I’m going to teach you all just one more strategy that can be helpful when there’s stubbornness or willfulness. And so let’s say you’re trying to give dad a bath and dad’s like, “I don’t want to have a bath.” And you’re like, “Come on dad. It it’s time to take a bath.”
“I don’t want to have a bath.”
“Okay dad fine well, you know, maybe I can just get this little bit of dirt off your nose? I’m just going to wet this washcloth put a little soap on it. I’m just going to clean your nose. And look you got some dirt on your cheek. I’m going to clean that off and on your chin and here’s a little bit on your neck. Let me just get that clean. And look, I’m getting your shirt wet. Let’s just take your shirt off so it doesn’t get wet.”
And hopefully with small steps, you can get dad ultimately undressed and in the bathtub.
So those are some sort of general strategies that we can use. And then finally, there is a more systematic approach that we sometimes recommend when these sort of in-the-moment approaches aren’t working. And we call these the ABCs. And we did not invent these, but we adapted them for this purpose.
And the ABCs stands for Antecedents, Behaviors, and Consequences. And the idea is that we generally consider the antecedents that come before a behavior. In other words, we think about the fact that if our loved one got very upset and we realized that they missed a meal, maybe that’s why they got upset, right?
So the The ABCs helps us to sort of break down and think about not only the behavior itself, but what came before, the antecedents. But it also helps us think about what came after, the consequences. And we don’t usually think about the consequences as being important. In terms of behaviors, usually we think about what came before, but the consequences, what came after, can be equally or more important.
So as an example, let’s say we’re in the same situation I described before, where we’re trying to get dad a bath. But let’s say this time, instead of using small steps to manage dad, dad’s like, “I don’t want to have a bath. I don’t want to have a bath.” And we’re just like, “Come on, dad, let’s have a bath.”
“I don’t want to have a bath. I’m not going to take a bath.” And he begins yelling and screaming and pounding his feet and stomping up and down, and then we say, “Okay, dad, fine. Let’s skip the bath for today.”
So what did we just do by allowing dad to skip the bath? Well, we have just taught dad, perhaps in an unconscious way, that if he yells and screams and stomps his feet long enough and loud enough, he can get out of doing something he doesn’t want to do.
So it turns out that paying attention to the consequences are important as well.
Ali: Was there anything that you learned about managing behaviors in dementia patients that surprised you?
Dr. Budson: The biggest thing I learned, that surprised me, is how many people think it’s normal for one’s loved one with dementia to sleep a lot of hours. So I saw someone in my clinic and his daughter said, “You gotta help me with my father. Give him a sleeping pill because he is up at 2:00 AM to 4:00 AM every night, and he’s going downstairs and he’s making a snack. He’s making oatmeal at two in the morning. You got to give him something so we can sleep through the night.”
And I say, “Oh, okay. Well, let’s go slow. What time does he go to bed?”
“Oh, you know, he goes to bed at 10 PM.”
“Okay. And what time does he get up?”
“Well, it usually gets up around 8 AM.”
And I’m thinking to myself, okay, well that sort of sounds normal, right? Go to bed at 10 PM, get up at 8 AM. But if you add up the hours he’s in bed, or supposed to be in bed, for 10 hours. And I explained to the daughter that that it’s actually not any more complicated that he only needs to be in bed for eight hours to sleep and his routine is to be in bed for 10 hours.
And so he’s up for two hours in the middle of the night because he doesn’t need to sleep for 10 hours. So the sleep problems. That was what surprised me the most. And most of these sleep problems can be managed quite easily with simple things like that.
For this particular gentleman, I said, “Let’s simply try going to bed at 11 and getting up at 7, and see if that doesn’t take care of the problem.”
Ali: Alright. Let’s move on to step three.
When it comes to medications, which ones help and which ones should be avoided?
Dr. Budson: Yeah, absolutely. So the first thing to say is there are a lot of good medications out there that can really make a difference. And the first class of medications that are helpful for people with dementia are medications that increase the level of a chemical in the brain called acetylcholine.
And these are medications that I bet many people have heard of. These include Donepezil, brand name is Aricept, Rivastigmine, whose brand name is Exelon, and Galantamine. Now from the perspective of the individual and their family, the way these medications work is they can turn the clock back on the individual’s memory loss by six to 12 months.
So when I see someone in the office and I give them one of these prescriptions, I can make their memory like it was six months ago, or maybe even a full year ago. And if they were beginning to have trouble with behaviors, by turning the clock back on their thinking and memory, I can make their behaviors the way they were six to 12 months ago as well.
Another good medication are some of the so called SSRI medications, which stands for Selective Serotonin Reuptake Inhibitors, which are better known as the Prozac family of medications.
But there’s a couple in this family that are particularly good, and these include Sertraline, brand name Zoloft, and Escitalopram, brand name Lexapro. And these medications are useful because many behaviors are due to anxiety. And these are medications that do not cause sedation, but help people to feel less anxious.
As you can imagine, if you’re beginning to lose your memory, you’re looking around the room where you are and you don’t really recognize it, that can be sort of scary. So if you have a medication that just makes people say, “Ah, whatever,” it can be very helpful.
And then of course there’s all of these medications that can make things worse. And one big class of these are so-called anticholinergic medications.
And the way you can have an educated guess that one of these medications may be anticholinergic is that it causes either dry mouth, constipation, or both. So if your loved one is suffering from dry mouth or constipation or both, there’s a good chance that they’re taking one or more anticholinergic medications.
And I do think it’s important to say that if you find your loved one is on one of these harmful medications or potentially harmful medications, it’s important not to simply stop it.
You need to speak with the doctor who prescribed it and ask can it be stopped? Can the dose be lowered? Can a different medication be used that won’t have these types of side effects?
Ali: So the next step is a big one. Not just for those taking care of someone with dementia, but for anyone who is caregiving. It is building a care team. So where can caregivers find communities for dementia?
Dr. Budson: The Alzheimer’s association and other groups can be very helpful.
But when you’re building your care team, one of the things that we talk about in the book is that are the things that are not obvious for people. You can think about your neighbors, maybe helping keep an eye on your loved one if you need to run out. In this day and age where it’s so easy to connect over the internet, why do you have to do all the bill paying and also be the one with caregiving duties? You know, maybe there is a a friend or a family member somewhere else in the country that can take over the online bill paying.
Same thing with scheduling appointments. I think it’s important to go with your loved one to the appointment if that’s possible, but do you have to do all the logistical work on the scheduling? Let someone else take care of the administrative tasks of it.
So there’s a lot of different ways that you can get help and really build your care team in addition to the obvious sources.
Ali: Let’s move on to step five. So, I feel like this is a little bit related to the step previous: sustaining your relationship. One of the most emotional aspects of dementia is probably the personality change that comes with it.
So how can we prepare for that and maintain that relationship with our loved one?
Dr. Budson: It’s funny that you say that it’s, it’s closely related to the step four, build your care team. On the one hand, of course, you’re absolutely right. And it’s directly related, but on the other hand, it’s very different. And the reason it’s different is in step four, where you’re working on building your care team, you’re really, thinking about yourself and your team as doing caregiving.
But in step five, we’re saying, because the dementia has gotten to a certain stage, you have to be a caregiver. How do you remove yourself from the caregiving role and continue to sustain the type of relationship that you previously had with your loved one who now has dementia.
And the secret here is to try to find activities that you both have enjoyed doing together that your loved one can still do, either the exact same activities, or maybe with a slight modification. So perhaps your loved one only has cognitive problems and you’ve always enjoyed going for walks. Well, you can continue to go for walks.
But maybe your loved one has trouble walking. Well, maybe you could enjoy going for a walk even if you’re pushing your loved one in a wheelchair. You could still enjoy it. Maybe you always used to enjoy playing cards with your loved one, and now they’re really too impaired to play cards. But maybe they would enjoy sitting next to you and playing solitaire.
Or maybe even just doing a crossword together, even if they’re not really contributing much, you can still sit next to each other on the couch and enjoy the nice activity together.
And I also want to put a plug in for arts and crafts. I’m a big believer in doing some arts and crafts together. It can be fun even for you, even for the individual who’s the caregiver as something you can do together. So those are some of the ways to be able to sustain your relationship. And I should say it’s hard.
It’s not the easiest thing to do, but there’s all sorts of studies to show that caregivers are more likely to be able to stay in this role longer and enjoy their caregiving responsibilities more if they can sustain their relationship with their loved one.
Ali: That makes sense. I mean, it also sounds like there’s such an overlap with self-care because doing arts and crafts, I think, is very meditative.
I think it’s very calming. So, our last step, naturally, is planning for the future. What comes after a diagnosis? How can caregivers best prepare for the future following one?
Dr. Budson: Immediately after a diagnosis, some of the things that can be done very early and are best done very early is to start to think about medical and legal issues.
Think about a living will, think about a healthcare proxy, think about all of the estate issues, the legal and the financial issues. And if these are done very early on, let’s say right after a diagnosis, as you said, then the individual with dementia, your loved one, can participate and be part of these decisions.
If you wait too long, they’re not going to have the cognitive capacity to participate.
The next thing that I would say is it seems like one of the first things that happens when an individual develops dementia is all of these scams start to occur. People get phone calls on their cell phones, on their home phones. They want donations. There’s a story that there’s a relative in jail. They need to give money to post something. They ask for people’s social security numbers and they steal identities. It’s unfortunate in our society that a lot of these scams go on.
So it’s really important for families to be alert and limit the amount of money that the individual has access to so tens of thousands of dollars or more are not lost. And I’ve unfortunately seen many people, not just one or two, I’ve seen many people who’ve lost a lot of money through these types of scams.
And then some of the next things that you want to consider are having people come into the house, maybe consider a day program, and then of course consider some type of long-term care, whether this is a assisted living or a nursing home or continuing care retirement community.
And I will tell you in a nutshell that I’m a big believer in doing things gradually.
So, for example, if the individual is going to give a try at a day program, you know, the thing to do is to go with them to the day program and just go and you go for maybe maybe 15, 20 minutes. You go, you hang out, maybe you have lunch together with the residents, maybe you get involved in a game but you’re with your loved one when you go there.
And then, another day, maybe it’s the next day or two or three days later, you know, you go and you do it again. And you say, “Oh, you know, honey, I left something in the car. I’ll be right back.” Then you leave for like maybe 15 minutes and then you come back and you finish up the activity and then you go and then you come back another time and, you say, “I’m just going to run to the store, pick up some things that we need for dinner, and I’ll be right back.”
And so you leave for an hour and then you come back and you get them and then you sort of extend the amount of time that you’re away from one hour to, the whole day of the day program. So you ease your loved one into it and we have a similar plan about how you ease your loved one into an overnight, situation.
So those are the six steps to managing Alzheimer’s disease and dementia.
Ali: Amazing. I think we got a lot of really good information on this one interview, and it’s not even the whole book. So, thank you so much for joining us, and for using your expertise to help anybody who has a loved one who is diagnosed with dementia.
I know not everybody can see you in person, but just the books that you’ve written, the papers that you’ve published, the talks that you’ve given, and now this podcast. It’s all extremely helpful.
Dr. Budson: Well, thanks so much for having me. And I did just want to remind folks that if you do want some of the details, please go ahead and check the book out of your local library. I’m very pleased to say that most libraries have a copy of this book. And if you want your own copy, of course you can get it in all the usual places. I always want to support local bookstores, but you can get it from online booksellers as well.
Ali: And once again, that book is called Six Steps to Managing Alzheimer’s Disease and Dementia. Thank you, Dr. Budson.
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