The Dementia Care Conversation Every Family Needs with Carlyn Lenfestey — Full Episode Transcript

I think there's still a lot of stigma and shame around dementia. We don't talk about it a lot. People can have a discussion about cancer or have a discussion about heart disease or heart attacks or different surgeries that are happening. But when it comes to dementia, I think it's such a personal thing — because when people start forgetting or being able to do things that they always did, starting to forget people, it's just a whole different emotion. And so it makes it really difficult to talk about.

When caregiving feels overwhelming and the system feels impossible to navigate, this is your guide. Here, you'll learn ways to navigate long-term care planning, find real support for caregiving, and prepare for the road ahead. I'm your host, Lindsay Friedman, and now you're not in this alone. Let's get started.

Hello and welcome back to another episode of LT CareNav's Care Compass. I'm your host, Lindsay Friedman. And today we're here with Carlyn Lenfestey from A Better Way Dementia. I'm so excited to have this conversation with you, and I'm so glad you could join us.

Thank you for having me. I'm very happy to be here.

We always start the episode with three rapid fire questions, so I'm gonna just throw them at you. Who are you? What do you do? And most importantly, why do you do it?

My name is Carlyn, and I am a physical therapist of now 25 years, with the last 15 specializing in dementia care. I am a dementia care educator and coach. I work with families one-on-one for coaching, and then I also train professionals through workshops — or more formally through the Alzheimer's Disease and Dementia Care Seminar offered through the NCCDP.

The reason why I do what I do: I had my first experience with dementia way, way back when I was a very little girl, with my grandfather. He was the first one that I ever knew who had dementia. I didn't know what that meant at the time — I know much, much better now. So I watched that change him, and I watched my grandmother take care of him. And then I watched as the remaining three of my grandparents also had dementia. I vividly remember that our family didn't have the support or the education, the help that we needed. And so my work now is to change that. I am working hard to be the person that we didn't have, for people.

I absolutely love that. Because I think dementia, when it comes to caregiving, is probably one of the hardest things you're ever gonna have to face — and you had more experience than most as a dementia family caregiver. So from that, what is the number one thing that you learned the first time around — or maybe even the second, because you were pretty young that first time — that you never would have expected?

Just understanding that dementia is really a brain disease. I think people think of it as just a memory disorder — I mean, we name units after it, and we talk about memory care and all that — but there's just so much more to dementia than that. And really realizing that, and how much that impacts the ability to effectively care for somebody without burning out — I've learned that. And I know my family, my grandmother certainly did not have that information at all.

So when you sit down to talk to a family — from knowing what you didn't know — what is the first thing that you talk to them about after a recent diagnosis?

I try to get kind of a barometer of where they're at in terms of their knowledge, because some people might have been fortunate enough to stumble upon a doctor that spent some time with them, or maybe have had some experience in the past. I find that to be rare. So I really try to figure out, okay, where are they starting from? Most people are just starting from, I don't understand what's happening to them — and they just know dementia as a blanket term.

So I really start back with, okay, what is dementia — breaking it down. And I'm a physical therapist, so I look at it that way. We think about function, and what does that mean and what does that entail? There are so many things that have to go well for us — even us with normal functioning brains — to be able to function effectively. So I really start breaking it down that way. I use a wheel. If function is kind of the outer part of the wheel, there are different components within that wheel that give function support and keep it rolling smoothly. And when those different components start to break down, that's where we start seeing our person start to struggle. That's where we might see those behaviors.

And then I quickly move into transitioning to what a behavior is. And it's really just a signal or a form of communication that they're trying to get out to us, because their brains don't allow them to use the words effectively anymore.

I really like that — it's a great visualization of what's happening. Now, do you talk to families about what happens when that behavior comes along? Now we know why there's the behavior, but it's really how we handle the behavior and how we move forward. So how do you deal with that next step with families?

Identifying the root cause is the first thing. I think a lot of times in dementia care we learn what to say, what not to say, or a tip or an activity to try or redirect. And sometimes those can work — sometimes. But when they don't work, most of the time it's because we haven't figured out the why that it's happening in the first place. So that's where those spokes come in — really using that to figure out what's happened. Because if we just divert attention and we fill it in with a tip and a distraction or an activity, the root cause of that behavior never goes away. It just kind of gets swept aside, and it usually recurs and keeps coming back. And then the frustration starts to build.

I use an example of why that's important. As a PT, I would get consulted quite often when people would be falling on the memory care unit. It was like, okay, they're falling — what can you do as a PT to come help them stop falling? And I think we immediately think if someone's falling, it's their balance. And what happened was I went in and I looked and I'm like, okay, what's going on? When are they falling? Where are they falling? It was only happening after they had been sleeping, and it was only happening in their room by their bed. So I'm like, okay, that doesn't sound like balance — that sounds like environment to me.

So I look at that environment spoke: the whole room was maroon — shades that were drawn, a maroon bedspread, and a maroon mat on the floor. And we know visual perceptual skills change — depth perception, contrast, being able to do that. So that's the sensory spoke that's failing, and then we have an environment that is not catered to what's happening. And honestly, we just changed the bedspread and opened the windows — and the falling stopped. If I had just gone in and gone, okay, I need to address balance, the guy would have kept falling. But because of looking at what is the breakdown, what's the cause, we were really able to effectively fix the issue. It can be really effective if it's used consistently.

That's great. And you mentioned spokes — and I know spokes is something that you talk about, especially in your framework. So can you talk a little bit about the different kinds of spokes and how they apply?

Sure. The whole purpose of spokes is to give structure to the tire and keep things rolling smoothly. In the framework I've come up with, it's five. I'm a very visual person — I think it's very helpful when you have a tool that you can visualize and then take and put it into practice.

The first one would be emotional — how are people feeling generally? At any given time, what is the mood of the person that is in front of us? Are they happy? Are they sad? Are they frustrated? Are they afraid, paranoid, agitated, aggressive? All the things.

Then we look at sensory — what is it that they're hearing? What is the lighting like? What are they seeing in front of them? Are there shadows being cast that maybe are causing some confusion? Certainly eating and drinking — how are their taste buds? Are they able to taste anymore? How is their sensation? If they're diabetic, that's gonna be impacted, so we have to figure that out. And definitely toward the end, those emotional and sensory spokes are what are gonna carry the person into those later stages, so it's really important to have a good look at what's happening with the person.

And then physical. How are they feeling? Do they have pain? Do they have a history of chronic pain? Do they have arthritis? Do they have balance deficits? Range of motion deficits? All of those things.

And then cognitively — I think that's where we start to think first, and it is very important, but it's just one spoke. It does happen to kind of drive all the others. But oftentimes we think of cognition as just memory, and it's so much more than that. The first thing we have to do is be able to attend to whatever is going on. So if we're trying to get somebody to interact with us or to do a task, we gotta make sure that they're paying attention — lock in with our eyes, make sure they're focused on us, because that really starts to fall apart as the disease progresses.

Their memory comes into play — short term, long term, procedural, working — and those fall apart at different rates. Their sequencing: being able to start a task and end a task and all those little pieces and parts that go in between, being able to go through all of them without getting stuck or forgetting one or forgetting where you're at in the sequence. And then problem solving — that executive functioning: being able to see an issue, figure out what's going on, come up with a plan, execute it, and then think, hmm, did that work? And pivot and make some changes. We can do that much more easily — they can't.

Those are all the internal aspects of a person. And there's one external spoke, and that's the environment — and that's the one thing that we have the most impact on. Things are going to happen with dementia with all the other spokes, and there are things that we can do, but the environment is what we have the most impact with. So we really gotta look at what's going on around them, minimize distractions, look at fall risk if there's some visual impairment, and go from there. When anything starts to fall apart, that wheel starts bumping down the road — and that's where we see the problem.

So it sounds like, for families listening, one, they can come and get in touch with you and help put the whole wheel together. But if they're listening right now, it sounds like the easiest thing to target is the environmental — what can I change in the situation around me that seems off, that seems confusing? Is that correct?

Correct. Absolutely. It's the easiest thing to identify and address, for sure.

So when families are coming to you, my guess is it's already sort of collapsing around them. Is that when you typically start to see them?

Usually, yeah. I wish we got in before, because I think it would make things so much easier. But the reality is you don't know what you don't know. And typically we don't ask for help until we're in dire straits — so I get it.

So for families listening who are maybe starting the journey: when is the right time? When can they start putting structure in place? When should they reach out to someone like you or an expert?

I think the moment that you have that diagnosis and you have kind of a concrete, this is what's happening. It comes in stages. The first is really getting hands-on: okay, what is this disease that you're dealing with? What does it look like? How does it progress? How much time typically is it going to take? What are things that you're going to see?

And then setting up that care plan from day one — really starting to get a group in place, a support system. And that doesn't necessarily have to be the direct caregiver all the time, but this is something that cannot be done by one person well, because people will burn out. So really getting the structure in place — typically, if we can do that early, it really helps things along the way.

And as things start to change — and they will, that's the other part, this is a progressive disease, things are going to change — teaching them what's coming, how to pivot when things start to change. People can drive and still work and do things in the earlier stages of dementia that they can't do in the middle. So what is that going to look like? Those are big decision conversations. I always say, if you're finding out earlier on and the person still has the ability to participate in making those decisions, do it. Get it in writing, so that you know in your heart what they wanted — and it's much easier to make those decisions down the line.

And then check-ins, I think, are really effective — as things progress, making those changes. And then helping with the referral sources. When it gets really hard to keep somebody home — a lot of times that's when the sleeping starts to flip and the person's not sleeping at all. The caregiver has to get sleep. So a lot of times what's happening when people need to go into a facility is the sleep cycle has just completely gone off track and the caregiver is not getting any sleep and they just physically can't do it anymore. Then helping guide and support — I'm not an expert in that, but I know those — and pointing them in the right direction to get the help that they need to find the right care, the right match for their person and for themselves.

So people get this very scary diagnosis. And we all in our minds sort of have an idea of what this looks like — the person who has the diagnosis, the family around them. Why do you think so many families, at that point, don't sit down and have the conversation — especially with the person who's gonna go through it — to make sure that their wishes are being met?

I think there's still a lot of stigma and shame around dementia. We don't talk about it a lot. People can have a discussion about cancer, or heart disease, or heart attacks, or different surgeries that are happening. But when it comes to dementia, I think it's such a personal thing — because when people start forgetting or not being able to do things that they always did, starting to forget people, it's just a whole different emotion. And so it makes it really difficult to talk about.

I've done group sessions with families to help everyone kind of get on board with how to have these conversations — how to talk amongst each other, how to talk with their person — so that it's not this big mountain they have to climb. It's just something that they're prepared to do along the way. And there's going to be a lot of different conversations along the way — and it's gonna change.

While we know there's gonna be a lot of things that are gonna change — when we come to stigma, what is the biggest misconception about dementia and what you see with families?

I think a lot of times people — especially when the person starts to forget who they are, their name, or understanding their relationship in the family — the misconception is, well, what's the point? They don't remember me anymore. So why am I gonna go visit if they're not gonna remember? Why am I gonna have these conversations or do these activities if they're not gonna remember?

The thing that people need to understand is that there's so much growth and joy that can come from the person with dementia and the caregiver and the family when they have those interactions. Like I said earlier, the emotional part of the brain is maintained. And so even though they might not remember your name, your face — they know how you make them feel. And just giving them that opportunity to feel joy in the presence of a really hard, devastating diagnosis is just so important. It just helps, as the transition goes, to be able to find the moments of joy where you can.

I absolutely love that — because finding joy on both sides of this is going to be so important. Even if it's just little and unarticulated.

Even if it's few and far between. Just those little glimpses when they're there and they're locked in — those are the things that you'll remember. And they will too. They will, deep down — they remember that feeling.

So let's switch to the caregivers, because we already talked about the exhaustion and all that kind of stuff. For somebody who's already in the middle of this or making decisions, what would be your biggest words of advice to them during this caregiving journey — when they've already lost the opportunity to have the conversation with their loved one who's going through that?

Just having a plan and getting things kind of locked in. There's so much — financially, the home that they live in, knowing as things progress what the next step is. Because if they constantly are operating in crisis mode, those are not the times that we make our best decisions.

So thinking ahead, planning ahead, having conversations with siblings or other family members ahead of time — getting those discussions out when things are calm and they're not in crisis, to be able to speak clearly, calmly, get things in writing. And then reach out to other resources. There's so much out there — sometimes it's hard to narrow them in, but there really are so many resources. With networking and working with different people, being able to ask, who would you recommend? I'm sure you have a list as long as you are — I do too. Just having those people, maybe even if you don't need it now. Thinking for the long term and planning ahead.

And if they're able to go and see those places — if that's appropriate still — take them. See how they feel. Maybe they can't make the decision, but bring them and see: how did they react in the space? Were they uncomfortable? Were they comfortable? I think that can give a lot of information. But always being proactive is my recommendation — because it will change. It's gonna get hard. Decisions are gonna have to be made. And the earlier those things are discussed and put in writing and formed as that plan, the better for everybody. It makes caregiving — it's gonna be stressful — but it does take one piece away, because it's already set.

That's what's so important about a plan. Most caregivers end up really burnt out — and the ones who don't are the ones who really thought about it long before burnout was even close to the question. But for those who haven't — because we all don't know what we don't know until we get into it — for those who are already burnt out, or it looks like that: what does burnout look like, and what can they do to try to pull themselves out of it?

Burnout looks a lot like overwhelm. It can be a racing heart. Medically, things start to fall apart health-wise. Statistically, we know that caregivers — often up to 30 to 35 percent of caregivers — pass before the person they're caring for. So you're gonna start to see that deterioration. Depression is a big one, definitely anxiety. When those things start creeping in — especially if they're new for you — those are times that it's like, okay, you have to check yourself.

Find little simple ways. Most of the time, not everyone can get away for a spa weekend — that's just not the reality of most people. But being able to take a 10-minute walk — or bring the person on the walk with you if you can't leave them — journaling, listening to music, calling a friend that gets it, or just is not gonna fix the problem for you but is just gonna hear you. Those little moments can really be helpful.

And then delegating. I very simply have my people fill out a Google Doc of all the things that somebody could easily take off their plate — whether it be picking up the mail for them at the mailbox, or dropping off a meal, or grabbing groceries, or mowing the lawn. One of those things that is just one more thing to think about. Because people really do want to help. So when someone's like, let me know if you need help — just send them the Google Doc. Say, yeah, I've got something for you — pick one. And people really, really truly do want to help. So just being ready and feeling comfortable receiving that help, because it's necessary. You can't continue to do this by yourself without burning out.

I love the Google Doc idea. Because it's really hard when people say, let me know if I can help — it feels very open-ended. And I think people really mean so well when they come from that, but it's hard, and it's already overwhelming for a caregiver. If you already have your list and you're able to send it — that is such great advice. Because then you're also not targeting anyone. It feels very much like, hey, this is just a list of stuff I need help with. You asked — here's the list.

And you can pick. I won't tell you what to do — you can pick what works for you. But something.

And then another thing that I would say for people is therapy. If you can get counseling, get therapy — there are so many ways to do that. I know people can't get out of the home oftentimes, but there are so many good resources online to really help process all of the things that you're going through. There's a lot of stuff that goes with it — a lot of times there's resentment, and changing of how it feels when that relationship with the person you're caring for is changing because you're the caregiver, and what to do with that. Being able to talk with somebody who is trained to help you process those things can be very helpful too.

And what you do is also very helpful — having somebody to support you through the journey is really important. So with that, can you tell people where to find you, for those who are going through this right now?

Absolutely. You can go right to my website at abetterwaydementiacaresolutions.com, or you can reach me at carlyn@abetterwaydementiacaresolutions.com. I'm also on Instagram, Facebook, LinkedIn — all those things. But that's the easiest way.

All that will be in the notes, and we'll get all that out to everybody. Carlyn, thank you so much for coming in and sharing this — it's so important, and the work you do is so wonderful.

Thank you so much for having me.

Thanks everyone for listening, and we'll be back next week together. All right, that's a wrap for today. Until next time, remember: you're not alone. Take things one step at a time, stay centered, and trust your compass. See you next time on LT CareNav's Care Compass.