Episode 13: Transcript

"It's hard to lie to the person who taught you not to lie." - with Emily Gavin

Doug French (00:00):

I hear peeping. 

Magda Pecsenye (00:01):

You hear the cat. (To cat): Do you want to see Doug?

Doug (00:03):

But now, when we talk about dementia, how did you find Emily?

Magda (00:07):

I found Emily because she is friends with people that I am friends with from college. And so she opened this new practice and I was like, ”Oh whoa, this is a perfect topic to talk about on the podcast!” So I reached out to her and I was like “Hi. Do you want to come on the podcast and talk to us about this?” Because I hadn't seen anybody else talking about this same topic.

Doug (00:30):

Well, especially since you just saw your dad.

Magda (00:33):

Yes. I just saw my dad. 

Doug (00:34):

He's got Alzheimer's, which fits in the umbrella of dementia, which is an important distinction. Right. Dementia isn't one specific thing, it's an umbrella thing. Right. With lots of separate strains that people diagnose for the sake of insurance and Medicare and stuff. What kind of symptoms are you seeing in your dad?

Magda (00:50):

He had a stroke, let's see, it was about 20 years ago. 'cause Robert was 18 months old, and had a full recovery from that stroke, but then kept having some TIAs. TIAs are transitory ischemic arrests, something like that. Basically mini strokes. And a lot of times people don't have any idea that they've had them. And if you have just like one or two, maybe nothing happens and there's like no repercussion. But if you keep having them repeatedly, like my dad was, you just lose some ground mentally. And so we think he was just having TIAs for years and years and years. Plus his mother died of dementia, of Alzheimer's specifically, that kind of dementia. He was having mobility problems, too. He's got balance problems, which is all related. And so yeah, he got the diagnosis of Alzheimer's about a year ago. That's actually why Mike and I are getting married in the town that my parents live in. So my dad won't have to travel. 

Magda (01:48):

It's interesting to watch the progression of this. Like, there's some stuff that he can still completely a hundred percent do. And then there's other stuff that I wouldn't have thought of as being a higher function that he's having problems with now or is really challenged with. And it's interesting, Emily talks in this episode about how you develop the skills as a baby and then the ones that you develop later, the higher level, the more detailed skills are the first to go on your way out. So it's like “last in first out” is what she calls it. And it's been interesting to watch this and it's a very different process than it was with his mother. I would say with his mother, it was sort of like classically what you think of as dementia, going almost in a really linear progression. But my grandmother was not as interested in as many things as my dad is. So when I got diagnosed with ADHD, it made a lot of stuff about my dad make sense. And so it's more of a, I don't know, a diffuse process with my dad than it was with my grandmother. 

Doug (03:05):

Well that's what I wanted to ask. Especially since you have a lot of experience caring for people who suffer from it and I mean, that was the real thing that struck me was that the real challenge comes from those of us who are watching our parents, our loved ones, kind of walk through a door. And kind of lose their faculties in some form or another and how we're supposed to cope with that. The heartbreak, the frustration, right. Knowing there's no cure, knowing there's no bringing them back. Yeah. You just have to adapt.

Magda (03:36):

Yeah. I mean this episode is not about clinical care for people with dementia. It's not that at all. So what Emily's whole practice is about is helping caregivers of people with dementia to do real self-care by setting things up to make things easier or smoother so that they can focus more on the relationship and not be as frustrated while they're caring for people. And that was something I hadn't seen people talking about before.

Doug (04:05):

Yeah. And I've talked to my cousins a bit. My aunt has got really late-stage Alzheimer's. Through their relationship, through their testimony, a lot of what Emily said rang true for me. Just the whole idea of the whole LIFO thing especially, right? You retain kind of your longer-term memories, but your shorter-term ones, you're not sure you get your generations confused. It's like it's not your sister, it's your daughter. 

Magda (04:28):

But at the same time, they still know that you're someone that they love. Right? Right. Like the love is still always there. Even if they couldn't tell you exactly how they're related to you.

Doug (04:39):

And you can tell the same stories over and over again and they'll appreciate them brand new all over again. <Laugh>.

Magda (04:44):

Yes. Yes.

Doug (04:46):

Apart from when you and I talk and it's like, yeah, you told me that <laugh>

Magda (04:52):

To me, it's very interesting that a lot of the discussion about aging and aging processes is led by MDs who have just sort of happened to observe things in their practice when in reality it's the people who are on the ground, like Emily, who are having these major insights and also big progress in how to deal with these situations for people so that it's a matter of caring for our loved ones, not dealing with them.

Doug (05:25):

It's so in line with Being Mortal, too. Because Being Mortal is all about making your parents comfortable and recognizing it's about them. Yeah. And how we have to adapt to that. We have to be the cartilage in the kneecap and just kind of roll with it. And I think once you come to terms with that, there's some peace that comes with that.

Magda (05:43):

Yeah, I agree.

Doug (05:45):

So yeah. I'm not all that stressed about the professionalism of the audio. I kind of want to make it sound as good as it can and I've figured out some tricks on how to do that. But some of these recordings that we do on the fly, I mean, it's fun. I kind of like it because all we care about is what people say and making sure that it's reasonably pleasant enough to listen to without thinking, my God, why is this person talking out of a pillowcase <laugh> Because neither of our guests was kidnapped <laugh>. Right. It's true. <Laugh>, I think we should establish that. You know, that's the When The Flames Go Up Difference.

Theme music fades in, plays for 20 seconds, then fades out.

Magda (06:41):

Okay, we're recording. Doug didn't tell us we're recording, but we're recording. 

Doug (06:45):

Well, we were busy reminiscing about all the people, you know, even though you don't know each other and I figured I just couldn't say anything.

Magda (06:49):

Well, we haven't talked about dementia yet. We've been talking about becoming a sudden caregiver of your parents. But we hadn't talked about dementia and I know that both you and I, Doug, have some intersections with dementia. And so when I saw Emily talking about her new program, I said Yes, let's talk about it. So Emily, let's tell us about your new program and Doug and I will not talk over you.

Emily (07:14):

<Laugh>. Alright. So I'm an occupational therapist and I provide coaching and consulting for caregivers of people who live with dementia. The goal is really to reduce stress for both the caregiver and the person with dementia. And the biggest way that we do that is by teaching better methods of dementia care, teaching better ways to communicate, better ways to set up the environment so that the person with dementia experiences less stress and therefore when they're happier and calmer, they produce fewer upsetting, distressing, aggravating behaviors.

Doug (08:08):

I imagine there are one or two of those <laugh>

Emily (08:11):

And there are one or two. Yes.

Magda (08:13):

Yeah, that makes so much sense. My grandmother died of Alzheimer's in 2014. Yeah. I was one of her caregivers. She was in a care facility, a memory care facility, but my uncle and I were the ones who were visiting her the most and were there a lot with her. And a lot of what happens is hurtful. It's just hurtful to have your person not know who you are and not have all of your interactions in the back of their mind, even if they do know who you are, like all of that kind of stuff. Not have expectations that you were used to them having

Emily (08:51):

And not react in the same way to, to relational patterns that you've had for decades.

Magda (08:59):

Right.

Emily (09:01):

In my wife's family, one of the very favorite things to do around the dinner table is quizzes. <Laugh> like, okay, okay. “Okay, tell me who was in these three movies,” you know, and you gotta be up on your pop culture in order to survive at that dinner table <laugh>. And one of the very first rules of dealing with people with dementia and communicating with people with dementia is Do Not Quiz Them. You know, don't. 

Doug (09:31):

Because they get what's wrong. They feel bad about it. Yeah. Right.

Emily (09:33):

Exactly. It's a way to produce shame. Yeah. And that doesn't make somebody feel good. And if they don't feel good, they're going to communicate it to you in one way or another.

Magda (09:44):

So your wife's entire family would have to change their way of doing mealtimes that they have always done. And that has been the unifying thing for them. Wow.

Emily (09:55):

Exactly. It's just like, okay, we need to find a new game <laugh> that everybody can win at.

Magda (10:03):

Right.

Doug (10:03):

How did you get drawn into the career of helping people cope with dementia? I mean is that, how far back did those roots go?

Emily (10:10):

Occupational therapy is a second career for me. I was in IT for 17 years and then moved on to OT. And

Doug (10:20):

So it's just a change of vowel really.

Emily (10:22):

Yeah. That's really all. It's so close.<laugh> So in 2010 I went to grad school and I got my degree in OT. I graduated in 2012 with a Master's and I got a job in a skilled nursing facility. And one of the things that I noticed right away was that I needed more information.

Doug (10:52):

Right after you got your grad degree.

Emily (10:54):

Yeah. Because the healthcare system in general does not do this well. There is an initiative that just came out yesterday from the Center for Medicare and Medicaid called something like The Guide Model. I believe that's supposed to improve, at least eventually, how our healthcare system supports caregivers of people with dementia. It's very interesting. I'll be interested to see how it plays out. But as it is now, medical education, the medical structures in our country do not do this well.

Magda (11:36):

We got nothing. I mean we got nothing from anything. We got, “Put her on Aricept and then pray, and well, she's in this memory care facility. That's the best we can do.” Like, not even a one-pager. It was stunning to me that so many people had been through this, that there were so many people who end up developing dementia, and there's nothing for the caregivers.

Emily (12:01):

Yeah. We're looking at 6 million plus people have Alzheimer's disease and related dementias in the US right now, and that's going to go way up. And about 11 million unpaid caregivers.

Magda (12:16):

Wow.

Emily (12:18):

So in 2014, I became one of those caregivers for my mother-in-law who had Parkinson's and Parkinson's dementia. So my wife and I moved in with her parents and we were able to keep her at home until she died in 2019 and she died at home. Which feels like a huge accomplishment.

Doug (12:41):

And it is. I mean, you talk about practical experience to aid your profession, that's got this extraordinary, if we were to try to counterbalance the unrelenting downer you just started with <laugh> <laugh>. I mean, you're not looking to sugarcoat stuff, but I think it's important to kind of lay the base there. You've been at this for about 10 years, both as a profession and with practical experience. So is there anything you could point to to say that as poor as things may be, has there been any improvement in the past decade that we can at least hang our hats on here? Or are we still kind of floundering looking for the light switch?

Emily (13:17):

There are a couple of researchers that are very near and dear. Laura Gitlin and Kathy Pearsall have developed a couple of evidence-based programs that work sort of in different contexts. There's three of them in different areas. And I am trained to administer a program called Skills2Care. It's Skills with a 2 and then Care.

Doug (13:46):

Of course it's 2,

Emily (13:47):

Yeah, of course it's 2. 

Magda (13:49):

Lasting legacy of Prince: Skills 2 Care 4 U

Emily (13:52):

Oh, right. There we go. Yeah, yeah, yeah.

Doug (13:55):

<Laugh> and a special shout out to Sinead O'Connor. Right?

Magda (13:59):

Yes.

Emily (13:59):

Yes indeed. Nothing Compares 2 Skills2Care <laugh>. 

Magda (14:05):

So is Skills2Care, is that a program that you teach caregivers to do with their loved one? With the patient? Or is it something that you do with the patient or is it something that is for the caregivers to do themselves?

Emily (14:24):

It's something that I do with the dyad, the caregiver and the person with dementia. Depending on a couple of different factors, I can also do it just with the caregiver. Skills2Care is a process that I go through with a caregiver and a person with dementia to identify the cognitive status of the person with dementia. The problems that the caregiver prioritizes, the things that are really bugging them, behaviors that the person with dementia is exhibiting that may not be so desirable for the caregiver. Right. I'm doing a lot of investigating to examine the home environment, how these two people communicate with each other and what the problems are. And once I've got all that information, including the caregiver's level of readiness for change

Magda (15:34):

I would think that would be a big issue. 

Emily (15:36):

Sometimes that's key and it determines sort of what direction I'll go in for somebody who sort of knows that things aren't ideal but doesn't really think there's a big problem, doesn't know enough about dementia, who know that the things that are happening in their household are because of the disease and not because of sort of an active will.

Magda (16:03):

Right. 

Emily (16:04):

I’ll start with a lot of education.

Doug (16:06):

That's a good place to start here as well. I think especially. And first, I'd also like to thank you for becoming the first guest ever to use the word “dyad.” I think that's cool.

Emily (16:16):

<Laugh>. <laugh>. You're so welcome.

Doug (16:18):

So if I look at this from the perspective of someone my age who has an older parent and start seeing certain behaviors that set off some warning flags, what are specifics of that disease that someone who diagnoses dementia would look for?

Emily (16:33):

First of all, dementia is an umbrella term. Under the umbrella are well over a hundred different diagnoses. The most common one is Alzheimer's disease. And we often talk about ADRD, which is “Alzheimer's disease and related dementias.”

Magda (16:54):

Oh, okay.

Emily (16:55):

That sort of encapsulates everything under the dementia umbrella. But there are other kinds of dementia that, other than Alzheimer's, that have really different characteristics. I mentioned Parkinson's dementia or Lewy Body dementia that has a prominent characteristic of things like paranoia and hallucinations and delusions. There's, vascular dementia is really super-common. The rule of thumb is that cognitive decline is cognitive development in reverse. It's a “last in first out” kind of situation. So if you think about it, some of the last things that we develop cognitively really into our early- to mid-twenties are executive function planning. Being able to think out a problem in your head, being able to foresee consequences, being able to reason. All of those things are unfortunately the first to go. And those things becoming somewhat impaired doesn't necessarily mean dementia. It can mean mild cognitive impairment, which is kind of the stage that a lot of older people have. And there are definitely memory impairments involved that don't always progress to dementia.

Emily (18:33):

So the next level that we get to would be mild dementia. Somebody can still be pretty independent, but their memory is more impaired. They may start having difficulty doing things like initiating regular activities or sustaining them or stopping them. So for instance, somebody who's living on their own, you might find that they're not necessarily bathing as regularly. And that may be because they don't remember when the last time they bathed was. Actually knowing what to do first is difficult. So they can get in the shower and bathe, but they might need somebody to say, “Hey, it's time for you to take a shower.”

Magda (19:25):

They might need checklists,

Emily (19:27):

They might need a checklist. You know, it would have to be a really simple checklist.

Magda (19:31):

Right.

Emily (19:32):

Because sometimes at a certain point, translating from the written word to actual three-dimensional life can become a little bit impaired. There's things like, if they take medications that they're not really taking 'em every day like they're supposed to. And you see a backlog of medications they have not taken, bills are not getting paid. Finances are getting a little kind of vague and out of control, not necessarily in terms of spending, but in terms of doing those routine things that keep a household running.

Doug (20:14):

And then as it progresses you might see something like leaving a door open or having a conversation then having no memory of it. I mean I do that. So I am <laugh> and I used to, so I'm just marking this all down. Big piece question. <Laugh>.

Emily (20:30):

Yeah. I mean those are not truly severe symptoms. 

Doug (20:35):

Well then, what would you say is the more severe symptom and what are the dangers of letting it get too serious? If you see something like that happen,

Emily (20:45):

Things like wandering, leaving the house at night, getting lost, not knowing where you're going.  Earlier on in the disease, it might be because somebody thinks that they have a purpose. They have a place that they think they're going, they're looking for somebody. They used to do something where they left the house every day. They think it's time to get up and go to work. So they're leaving.  Later on in the disease, we see that people might wander just because they're walking and they happen to be walking outside. They lose the goal direction. They're just, their body wants to move.

Doug (21:24):

And do they move based upon muscle memory from a previous time that might not apply now? Like there used to be a door there and there isn't anymore. But their awareness of their space is based upon what they knew several decades ago, that kind of thing?

Emily (21:39):

Absolutely. A lot of times people have trouble finding the bathroom because they're thinking about the home that they grew up in and where the bathroom was in that house. And one of the main points I think is that there are many, many, many manifestations of dementia. There are many triggers for difficult behaviors. People can get verbally or physically aggressive because something's wrong and they have to express that in some way. And they don't have the language or the reasoning to express it in a way that they may have done when they had all their faculties in touch.

Magda (22:25):

And we're so used to giving leeway to little kids who are trying to get language for stuff as it develops. But it's just really hard to process the fact that your parent or an older relative or somebody that you love doesn't have the same abilities that they had five years ago or a year ago or something like that. And it almost seems like they're doing it on purpose. Like they're trying to frustrate you to punish you somehow. 

Emily (22:53):

You bring up a couple of really, really important points. Even though you would never treat an older adult with dementia like a child because they have a lifetime of experience and they deserve the respect and dignity that should come with that, you can in some sense map cognitive decline onto a developmental age level. Draw some useful parallels to help you understand what this person's current cognitive capabilities are. As an occupational therapist, I'm always looking for what are the remaining abilities? What can this person do well and what would they be able to do with a little extra support? We talk about scaffolding and it's talked about sort of throughout the lifespan in order to support the abilities that remain. 

Magda (23:52):

'Cause you don't want to throw out the whole experience with the person just because there's stuff that you used to be able to do easily that you can't do anymore.

Emily (24:00):

Exactly.

Doug (24:02):

And training to care for a dementia patient involves some self-care as well. So you can maintain your morale and maintain your own mental health as you adjust to this new reality. Because dementia is progressive. There's no therapy or anything that can help bring somebody back. That's just, you've walked through a door and that's it.

Emily (24:19):

That's correct. Dementia is a progressive terminal illness and that regression that I was talking about goes ‘til somebody is bedbound and really has the cognitive functioning of an infant. But even at that stage, which is end-stage dementia, an infant can make eye contact with you. An infant can feel love. So many people say, well, they're not there anymore. But it's not actually true.

Doug (24:57):

From the inside of a dementia adult brain. That must be terrifying.

Emily (25:02):

Yeah. I think one of the most helpful things to think about is physical approach. This touches on some teachings from an occupational therapist named Teepa Snow, who has a huge YouTube channel. She's very funny, she's very smart. She talks a lot about physical approach. She teaches people how to approach a person with dementia without freaking them out. Because there are sensory functions that also decline with dementia vision and visual fields declines. You get more and more sort of tunnel vision and it's really easy to get startled when you can't see somebody coming. If you're startled, that ramps up your fight or flight response.

Doug (26:00):

It's gotta be this amazing paradox to be in there enough to know that your faculties are declining. And I imagine at some point the comfort comes when you're too far gone to even know what's happening anymore. But until that happens, and assuming that's destined to happen, how do you counsel caregivers to communicate with people to kind of set them at ease or to help them understand that they're in good hands and even though they may forget where they are and who they're with, that they're in a safe space that they can least relax within, with?

Emily (26:33):

I mean, a lot of what you just said <laugh> saying those things out loud, saying it's okay. And you know, some people have more insight than others when they get dementia. Some people will really, at the early stages, they will really see what's happening and not like it. They may have a lot of sort of subconscious ways to cover and they may have a lot of defenses in place around it. But if you are working with somebody, if you're living with somebody who does have that insight, you're going to want to tell them, “I love you for who you are right now and let's do the things that you can do successfully and let's enjoy them together while we can.”

Doug (27:23):

See that's very Being Mortal. Right. 

Magda (27:26):

It's very Being Mortal. Yeah. We talk about the book Being Mortal a lot.

Emily (27:31):

Atul Gawande. Yes. Yeah. So do I <laugh>. He’s brilliant.

Magda (27:35):

You know, thinking back to my experience with my grandmother, I was talking to a lot of people at the time that it was happening that were in the middle sort of this world of Alzheimer's, right. That you really don't understand until you're in the middle of it. And one of the things I think that trip some people up, and it didn't trip me up because I think I figured out where I wanted to be in the middle of it myself at the beginning, was this idea that they can't remember facts and they get things wrong all the time. And it seems like there are almost two ways to approach it. Like one way is like you're trying to keep them having as much mental capacities for as long as you can. And that it is in some way a help to them to correct them and try to help them remember the facts versus the non-facts.

Magda (28:30):

And I guess I get that. It's the same reason that my mother does a crossword puzzle every day. It's like she's trying to exercise her brain. But I didn't see it that way at all because I knew my grandmother could not remember these facts. And I didn't think, first of all, I was responsible for her mental anything. I was only responsible for loving her and being her granddaughter. So I would just go along with any random things she said and just, you know, if she wanted to tell me stories about my grandfather that I knew were patently false. Hey, it was fine. I just wanted her to feel happy and like, happy to see me all the time. Even when she didn't have any idea who I was. 'cause you know, for a long time she did know who I was. And then for awhile she thought I was her daughter or her niece, and she didn't have a daughter or a niece.

Magda (29:19):

A lot of times I would go with my brother, or my brother and his wife because we had always just visited and she liked to see both of her grandchildren together. And then there was one visit in which she was incredibly confused about who the second woman was. And she couldn't figure out if I was her daughter, if my sister-in-law was her daughter, who my brother was. Like, none of that. And so at that point we just realized we couldn't all go together anymore. But it was this very deliberate decision to just go along with whatever was happening. Like, don't care about the facts at all. And that made it so much easier for me to just be present with her. 

I remember I started sending her, through the mail, greeting cards that just had pictures of puppies and kittens on them 'cause I knew she would think they were cute. And then I would show up the next time to visit her and she would show me these cards that somebody had sent her. And she didn't know who had sent them to her. But she knew when I came in that I would be excited to see them. And so she would show me these cards. I don't know, it was like I had gone through the back of the wardrobe into Narnia and come out Through The Looking Glass and like

Doug (30:32):

Was a looking glass in the wardrobe? Come on now.

Magda (30:34):

Yeah. But like, you know, she was,

Emily (30:36):

You were spot on.

Magda (30:37):

She was happy to see me! And then sometimes I would, she'd ask me questions and I would just lie. I mean, I think I told her one time that Newt Gingrich was president 'cause she liked Newt Gingrich. Right? Like <laugh> just make her happy.

Doug (30:51):

Emily spent much of that last soliloquy touching her nose in agreement.

Magda (30:55):

<Laugh>. Alright. That's good. Okay. So what do you call it? You call it a therapeutic what?

Emily (31:00):

A “therapeutic fiblet.”

Magda (31:02):

<Laugh>. Okay.

Doug (31:04):

I love the extended lexicon that we're putting together. We should put like a page on the Substack of just terms we've learned. 

Magda (31:13):

“Therapeutic fiblet.”

Doug (31:14):

<Laugh>.

Emily (31:14):

Yeah. Yeah. It, because, you know, I worked with a dyad <laugh>. I know. I know. What can I do? I worked with a caregiver whose mother would come into the room repeatedly many times an hour and ask, “Where's my sister? Where's my mom? Where's my son?” And all of these people were dead. And the caregiver felt that she had to tell the truth. 

Magda (31:48):

Oh, no. So the mother was so sad. Every time.

Emily (31:52):

Every time. And that was all day every day. In one sense, the very simple answer is, “Please lie, because you are not doing anything kind by telling this person the truth.” It's really hard to lie to the person who taught you not to lie.

Magda (32:10):

Oh yeah. I didn't think about that <laugh>.

Doug (32:13):

Well, it's just, it's an entirely different context. Right. You have to recognize this is apples and oranges.

Emily (32:18):

Yeah. You really do. Man. I think that all the things that you did with your grandmother were exactly what I would recommend. And beautiful.

Magda (32:28):

That's good to hear.

Magda (32:30):

At the time it felt like the right thing to do. Right? To make somebody who had no control over her situation feel better about things. I remember <laugh>. Yeah. I didn't get in to visit her one Easter Sunday, 'cause things spun out of control. And I was feeling guilty about it. And then I was like, “Oh wait, no, she doesn't know that it's Easter!”  'Cause she was in, now we call that point in time “the fun time” because we could just tell her anything and she didn't have any way to know the difference. So I waited for half price candy the next day, and I went and bought the candy that she had always liked when she was younger and giving me Easter candy. And she would buy this kind for herself. And I came in and, you know, they were trying to control her diet and all this kind of crap at that point. And like, I understand it, you know, she had to go down to the dining center and eat these low sodium whatever. But I showed up in her room and I handed her the candy and I said, “Mamama, it's Easter.” And she said, ”Oh, He is risen!” Like, that came out of her mind. Right. <laugh>

Emily (33:37):

Boom.

Magda (33:38):

And I said, “Here's your Easter candy.” I brought this Easter candy and I let her eat the entire thing. Like, I would've been in massive trouble if any of the attendants had come in at that point. But I let her eat the entire thing. And she was thrilled and it didn't cost me anything. I was able to make her so happy with this half price Easter candy. 'Cause she hadn't known. And if I couldn't get in to see her very often, when I would come instead of saying like, “Oh, I'm sorry I didn't come to see you,” because I figured that might make her feel like she was forgotten, I would say, “Oh, I'm so glad I got to come twice this week! I really liked seeing you two days ago,” <laugh>, because she would've had no memory. But then she felt excited that I came in to see her twice in one week.

Emily (34:31):

That's beautiful.

Doug (34:32):

Now you're making me wish I didn't love licorice jelly beans as much as I do. Because

Magda (34:36):

Why?

Doug (34:37):

<Laugh>, if I'm lucky enough for someone to sneak them into me in the home, I can't hide those from the medical staff. You know, I'll just open my mouth and smile with these huge gray teeth.

Magda (34:47):

You'll have black teeth.

Doug (34:48):

Teeth, licorice, jelly beans, whatcha talking about. Right.

Emily (34:53):

You have so got the point. And with apologies to Maya Angelou, ‘They may not know who you are and they may not know what day it is, but they will remember how you made them feel.”

Magda (35:04):

I like that a lot. Yeah.

Doug (35:06):

And again, now it's our first Maya Angelou reference. So we are breaking all kinds of new ground <laugh>.

Magda (35:11):

Totally.

Doug (35:12):

I wanted to ask, given the nature of elder care, we can't not talk about the finances involved, the insurance that's involved. 'cause I'm sure when it's time to incur some serious expense to care for someone who has dementia and you're dealing with insurance and Medicare and Medicaid and all sorts of things. I imagine there has to be a rubric whereby someone is technically evaluated and diagnosed with dementia. So that that whole phase of making sure the care that your loved one needs is paid for. What does that rubric look like and what should we look for? Like when, when it's time to have insurance cover some of these therapies? Yeah. What should be in place for that to happen?

Emily (35:58):

You're going to want a diagnosis from a doctor. Here in the Philly area, I know there are places that, like the University of Pennsylvania, have neurology practices that are specifically devoted to memory care. Like, on an outpatient basis, you're going to want probably a neurologist to give a diagnosis of dementia. Now, I, as a physical therapist who specializes in dementia, can do some interesting evaluations. And I can tell you what someone's level of functional cognition is. The tests that are done by doctors will give you a number progression. And you can get a sense of whether somebody is, you know, in the mild stage or the moderate stage or the severe stage. And, you know, you can break that down into specific things that aspects of cognition that are compromised and how compromised they are. The thing that an occupational therapist does, it's funny, the screening tool is a leather lacing activity.

Magda:

Oh, wow.

Emily (37:20):

It's a big piece of leather with holes punched around the edge and there's three different stitches. And by taking them through this standardized assessment, I can tell you how they're doing with following directions, how they're doing with memory, how they're doing with executive function. If somebody at the very top of the scale can figure out how to do a complicated stitch without a demonstration, and somebody at the very bottom of the scale maybe can't do a running stitch, maybe they just can hold the leather card, push the the needle through and pull it through once. And that tells us so much. And it's a functional test, which is very rare.

Magda (38:13):

It's so interesting though, it goes back to that LIFO thing because I remember doing the lacing cards as a little kid to practice dexterity, right? Yeah. So here it is showing up again on the way out.

Emily (38:28):

It's a phenomenal test. And there are many other activities that are in the same category, that can sort of refine an assessment and a score to give you an even better idea of, like, whether somebody is in that goal-directed phase or whether they're in the phase where they're really not goal-directed. They're more doing repetitive actions.

Magda (38:57):

Well, and things like Alzheimer's, you're not supposed to be able to diagnose except retroactively because it's brain changes that you can't tell on the front end. So if somebody gets a diagnosis of Alzheimer's, that's just because the practitioner has seen enough Alzheimer's to know that this is, but it's not like diagnosing against official criteria, is it?

Emily (39:20):

It's not a hundred percent. It's not like they can say, “Yes, absolutely, this is Alzheimer's. There's absolutely no question about it.” Right.

Emily (39:29):

But they can get pretty close. They want to rule out other things. They want to rule out things that could be reversible. There's something called Normal Pressure Hydrocephalus that sometimes looks like Alzheimer's and is treatable with an internal shunt. It's like a fluid buildup in the brain. But when all is said and done, if you're looking at the scans and you're pretty much ruling that out, if you've got all the cognitive testing data, if blood work looks consistent with everything, then you're going to be able to get a diagnosis. Now there's also combined forms of dementia and often you'll see Alzheimer's combined with vascular dementia, which would have to do with basically lots of little strokes.

Magda (40:24):

Oh, okay.

Doug (40:25):

This is a second career for you and for you to have amassed all of this medical knowledge in a relatively short time. I think when you first pivoted from IT to OT, and you've been at this now for over a decade, what do you think the biggest change has been or what have you, what's the most important thing you've learned about treating dementia patients and what you might not have anticipated when you first got on board?

Emily (40:48):

When I first chose OT, I was thinking a lot more in terms of physical disability. I had really bad fibromyalgia in my twenties. And for a period I really couldn't use my hands because that was the focus of my pain. I had to kind of figure out what I needed and what kind of adaptations I needed to make me independent again. And later on when I was looking for a new career, I looked back and I was like, you mean there's something where somebody could have helped me figure that out? <Laugh>, I could have had an OT <laugh>.

Magda (41:27):

Right.

Doug (41:28):

It's the classic story, right? Be the change you want to see.

Emily (41:33):

I really wasn't focusing on the cognition aspect of things until I got out of school and I really started working with older adults and I said, “What the heck am I supposed to do here? Why don't I know and why doesn't everybody know?” And that's really been kind of my mission for the last 11 years because for the past eight years I was the manager of the rehab department at a PACE program, which is a “program of all-inclusive care” for the elderly, really interesting model of care. It's truly a preventative model of care for low-income older adults. So as a manager in that facility, which was focused around a senior day center, I decided I'm going to go get trained to be an instructor on dementia and I'm going to train as many of my colleagues as I can. And I did that with a couple of different curricula over the course of the years because I started with one and, and felt like it was good.

Emily (42:45):

I gave a lot of good information, but I didn't feel like it really changed people's behavior. And then I moved into Teepa Snow's curriculum and I liked her curriculum because it was much more relational. It was much more like hands-on type skills. But still, I felt like, and one of the things that I ended up doing was getting more specific, doing problem-focused training. In one case, every time they tried to toilet a woman who had pretty severe dementia, she was becoming very aggressive. She was kicking, biting, screaming. And I went and observed that specific situation and learned a lot about that woman and found out that she had a history of sexual trauma. So I did a training specifically with those aides to teach them how to approach her without causing her to relive her past experience.

Doug (43:59):

I was actually curious about your interest in brain science, how the brain works. Just because I was lucky enough, I had a conversation with David Eagleman, who's a pretty noted brain scientist. He actually was part of a six part PBS series about how the brain works. The main takeaway from that discussion was how little we know about why the brain does what it does. And so if you pursue extra education or anything that could make your job easier and create a more informed situation for you and the people you counsel, where do you think you'd focus your attention?

Emily (44:34):

Well, I am pursuing my doctorate right now. My clinical doctorate.

Doug (44:39):

That's the ticket. There you go.

Emily (44:42):

<Laugh>. I was thinking that I was going to do an elective track in neuroscience, and I did take a doctoral level neuroscience class. That was awesome. It's so amazing.

Doug (44:55):

It's amazing, isn't it? You just, the more you know, the less you know. There's just more to discover. The frontier is endless, it seems. 

Emily (45:04):

<Affirmative> That track ended up being more focused on autism and less on dementia. So I didn't end up pursuing that further. What I did do as an elective track was a track in coaching that also fits into this work really nicely. 

Doug (45:23):

How have your conversations with caregivers evolved as this new level of education has taken hold? How do you feel more equipped to help explain what you know, and also using the benefit of how YouTube videos explain things and how you've adapted your own bedside manner?

Emily (45:40):

There's always a balance between giving information, giving suggestions, and helping somebody come around to solve their own problems. There's one article recently about the Skills2Care program that described it as “therapeutic problem solving,” which I thought was a fantastic way to look at it, because that's really what it is. So that even after I'm out of the picture, even after this dementia has progressed to a different level and there are whole different behaviors and experiences that are happening, they have a skill.

Doug (46:25):

And it's not a cookie cutter advice situation anyway. 

Emily (46:30):

You know, it's really not. You've seen one person with dementia, you've seen one person with dementia.

Magda (46:34):

Right. <laugh> My grandmother, when she was in the care facility, she went through this phase of throwing away her socks. She would take her socks out of the drawer and she’d throw 'em all away. And because the people who were working there didn't realize what was happening. And so they were just emptying her trash can in her room. And they didn't realize that they were throwing away all of her socks. And so her socks were just disappearing. And my mother, who was her daughter-in-law, not her daughter, would come and would be like, “Where are her socks?” And they'd be like, “We don’t know where her socks are.” And so we kept buying her more socks and then figured out that she was throwing them away. And so then we would fish them out of her garbage and put 'em back in her drawer. And then she started throwing them away in other people's rooms. And we never figured out why it was that she was throwing away her socks, but she was doing it like it was her job. And I just remember thinking, “I am so relieved that we are not living in the same house” because instead of being this kind of hilarious battle, it would've been constant.

Doug (47:37):

Where else are you going to put that secret stash of licorice jelly beans?

Magda (47:40):

<Laugh>. Right. Exactly. And well, you are going to hide it under the socks in the next, your next door neighbor's sock drawer. Right? That's right. And hope that somebody like my grandmother doesn't come in and throw away the socks. <Laugh>

Emily (47:54):

Socks full of jelly beans. I love it. <Laugh>. And if one of the caregivers makes you mad, you might use it as a weapon. <Laugh>,

Magda (48:04):

Right. Leave, no bruises. 

Doug (48:06):

Thanks for going there.

Emily (48:07):

Sock full of jelly beans. Right.

Doug (48:10):

There's the pillowcase full of oranges and the sock full of jelly beans. <Laugh>.

Magda (48:17):

I feel like there's another question in here still. I feel like there's a question, because to me something you said earlier was about how you help caregivers set things up so that they're less frustrated. And that's a thing that I'm interested in, 'cause that, to me, is real actual self-care. Like, you know, people talk about self-care, “take time for yourself,” “take a bubble bath.” But that's not really self-care. Like to me, self-care is if you're this person's caregiver, you're setting things up, both sort of reframing it for yourself mentally, but also doing physical things and logistical things that are going to make you less frustrated. So can you talk a little bit about that?

Emily (48:56):

Absolutely. The person who taught me Skills2Care is named Rachel Wiley. And she has, and she is brilliant, to be able to put yourself in your grandmother's shoes, to use your imagination and be able to say, why was she throwing away her socks? And come up with a theory and then be able to do something in the environment that will make things more tolerable. The first thing that comes to my mind, not knowing what cognitive level she was at or anything like that, maybe she thought they were dirty and she was putting them in the laundry. So maybe what I want to do is right next to her drawer, put a big laundry basket and put colorful arrows on the wall. <Laugh>, it's maybe a picture of a sock that says here <laugh> and set things up for her to do the thing that she's trying to do, but in a way that is acceptable to everybody else around. It really is self-care, like you said, to understand how to relate to the person with dementia in a way that doesn't upset them and doesn't upset you.

Magda (50:26):

And it's not going to get better. Like, this is the best day that you're going to have with that person. Every day you have is the best day because with Alzheimer's, at least, it's like losing a grain of sand off the beach every day. They're never going to have more cognitive capacity than they have today. And you have to be the one who decides that this is going to be okay. Because if you don't decide that this is going to be okay, then it's going to be worse tomorrow and it's going to be worse every day until they're gone. Doug, your parents listen to the podcast, right?

Doug (51:05):

If they remember where to get it.

Magda (51:08):

<Laugh>. Well, but I mean, that's why you didn't say, 'cause your mom is going through some dementia, isn't she?

Doug (51:13):

I don't know. It would, it may be happening if she's forgetting how angry she is, and I'm just trying to, you know, figure out–'cause you find out where the buttons are and then someone changes the buttons. Right. But I do think if she is becoming more forgetful, she's becoming more forgetful of the things that make her angry.

Emily (51:29):

That's really interesting that you say that she's forgetting the things that make her angry, because some people get meaner and some people get sweeter. When my mother-in-law was becoming more and more impaired, she was British and she lost a lot of the sort of stiff upper lip.

Magda (51:52):

Oh.

Emily (51:53):

She became less inhibited about giving praise to her daughter.

Doug (51:58):

Oh, great. 

Emily (51:59):

My wife always knew that her mother loved her, but there was this sort of veneer, you know, <laugh> and she started just loving the artwork that Eliza produced and saying so, and it was this huge change because she would never have said stuff like that in her right mind <laugh>. But it's because there was this level of inhibition and that was eroded with a certain amount of her cognition. And so that aspect of her personality is kind of mellowing. The things that made her anxious just kind of faded away. She became the sweetest mellowest easiest to be around person.

Doug (52:44):

I really hope I get the chance to tell my mom it's her birthday every three weeks. <Laugh>

Doug (52:52):

Well, this is the point when Emily, the very polite doctor says, I'm afraid we're out of time <laugh>.

Emily (53:00):

No, I love this stuff. That really brings us back to Atul Gawande.

Magda (53:04):

Yeah.

Emily (53:05):

Because I mean, everything that we do when we're dealing with our elders is we want them to be safe and they want to be autonomous.

Magda (53:17):

Yeah.

Emily (53:17):

It's a balancing act of safety versus autonomy. We can jump up and down and turn blue and tell them what they ought to do, but they're actually going to do what they want to.

Doug (53:30):

Are there also support groups? Like nationwide support groups that you can look for local chapters?

Emily (53:36):

The Alzheimer's Association is a really good source for all kinds of dementia. They run support groups. They have like a national list that you can look stuff up. You can also get more specific if you know the type of dementia you're dealing with. There is a Lewy Body Dementia Association that is, I think, LBD.org. The Alzheimer's Association is AZ.org. You can go to stroke.org and get a lot of information about vascular dementia. There's also, I believe FTD, there's frontotemporal dementia. That's one that involves a lot of personality changes. 

Doug (54:17):

Oh, interesting. FTD was a florist, wasn't it? That's a copyright battle <laugh>

.

Emily (54:22):

If somebody wants a place to start, TeepaSnow.com, which is T E E P A S N O W dot com. That's brilliant. OT. Very funny. Very accessible education videos. Good stuff. If you Google something like “10 Commandments of Dementia Care,” you'll get: “Never argue. Always agree. You know, always redirect.”

Doug (54:52):

Sounds a lot like improv training. <Laugh> just 

Emily (54:55):

That is exactly the next thing I was going to say! <laugh> because you're absolutely right. But there's a TEDMed talk on improv and dementia care. This woman was an improv comedian and her mother got Alzheimer's and she realized that the rules overlap. You know, go with the flow step into their reality. Those are all rules for improv. And if you look up improv for dementia, you'll find a ton of stuff.

Doug (55:31):

And if you're going to create this alternate reality, just work hard to sharpen your prop work. <Laugh>, are you still going to be at Philly Care? Or if you're opening your own practice, are you going to have your own URL?

Emily (55:44):

That is my new practice, it’s Philly Care Coaching. I'm on Instagram at Philly Care Coaching and I'm on Facebook at Philly Care Coaching. And you can find out more about me on LinkedIn by looking up Emily S Gavin.

Magda (56:00):

And because this is licensed therapy, people can only work with you one-on-one if they are in the state of Pennsylvania. But they can still click through, look at all your stuff and find other resources and find help for whatever state they're in or province or wherever they're listening from.

Emily (56:17):

That's correct. And some of that is still under development. I am currently private pay for and doing consulting with caregivers. I'm in the process of getting my Medicare credentials, at which point I'll be able to accept Medicare. {Editor’s note: Emily accepts Medicare as of August 2023.] 

Doug (56:32):

And when do you think ,when are you planning for OTR slash L to turn into PhD?

Emily (56:38):

It'll turn into OTD. It's a clinical doctorate. So the OTD hopefully I will be able to pick up again in the spring and finish sometime in 2025.

Doug (56:50):

Well, congratulations. That's wonderful news. And thank you so much for the information you've given us. I think a lot of people our age are just, are becoming acquainted with what dementia is and the big spectrum of dementia from which people suffer. And I want to thank you so much for offering this mountain of knowledge that you've amassed in such a short period of time. I wish you all the best with the new venture and really thanks for the time today.

Emily (57:13):

Thank you so much. I really appreciate the opportunity to do this. It's both really fun and interesting to be able to talk about it and also gives me more insight and perspective on where I'm right now and where I'm going.

Magda (57:29):

I think this is something that's so scary to people our age and so many of us know we're going to encounter it whether with parents or our older relatives. And it's still so terrifying. So it's good to hear some of the concrete things that you can actually do.

Doug (57:45):

Right? 'cause everybody knows somebody who's going through this from a caretaker point of view. If it's not your own parents, it's some close friends’ parents or even close friends. You know, who's to say that you have to wait till you're 70 or 80? You know, the early onset I'm sure.

Emily (58:01):

All sorts of problems can hit very early.

Doug (58:03):

Yeah. As someone looking down the barrel at 60, I'm thinking the same thing. I'm like, okay, well I left the door open and I don't know where my pants are, so I better go get a rubric. <Laugh>.

Emily (58:14):

There's definitely room for those kinds of things in a normal aging scenario. 

Doug (58:21):

I certainly hope so, because you're listing symptoms and I'm like, check, check.

Emily (58:26):

<Laugh>,

Doug (58:27):

<Laugh>. Anyway listeners, thanks so much for listening to Episode Lucky Number 13 of the When The Flames Go Up Podcast with Magda Pecsenye, for now, and me, Doug French. Our guest has been Emily Gavin, not yet a doctor, but well be very soon. Thank you so much for listening and we'll see you next week with another story of how to figure out how to take care of the people you love by getting a comprehensive knowledge of what they're going through and making the whole process a little less fearful. Thanks again. We'll see you next week. Bye-Bye.

Magda (59:29):

That was good.