Podcast #114 Dementia – How Do We Approach This Long Road? Kay Adams, Dementia Coach and Author

Dementia is disruptive, incredibly so. You can’t get help for what you don’t understand, so this path requires gathering information, pushing for an accurate diagnosis, educating yourself and those around you, and finding new approaches for everyone involved. Kay Adams shares valuable information from her extensive experience as a dementia coach: Why does getting an accurate diagnosis matter? Why is neurological screening by itself not enough? What is helpful for caregivers/carepartners to realize about their experience? Why is dementia on the rise, and what can we do? As Kay says in her book, Bedside Witness: Stories of Hope, Healing and Humanity: “This heartbreaking illness and the collateral damage it can leave in its wake is one of the most complicated journeys any human being may ever have to take.”

More about Kay here ⁠www.kaymadams.com⁠


#114 Dementia – How Do We Approach This Long Road? Kay Adams, Dementia Coach and Author

Diane Hullet:

Hi, I’m Diane Hullet, and you’re listening to the Best Life, Best Death podcast. Today I’ve got a guest who I met at a conference recently in Denver, and we happened to sit by each other at lunch and then just had a great connection. And I immediately. bought her book and wanted to have a podcast conversation.

So hi Kay. 

Kay Adams: Hi Diane. 

Diane Hullet: This is Kay Adams and Kay is a dementia coach and an educator and she’s a trainer and speaker and she’s now an author. She’s written this wonderful book called Bedside Witness Stories of Hope Healing and Humanity. This is really all about the dementia world and I think such powerful work.

So I think dementia is really on people’s minds and I want to keep putting up episodes that help people to think through how they walk this journey and how they support their loved ones who are, you know, in this place. So Kay, just tell us about, you know, how did you get into dementia 

Kay Adams: work? Well, it wasn’t a straight line.

I’ve had a very interesting path over the years. I grew up in Nebraska. I majored in psychology in college and my dad was a police officer and he thought it would be a great idea for me if I was trying to understand how people tick to get a job as a corrections officer in the maximum security jail. So I did that for two and a half years and I learned a lot of things I wish I didn’t know.

But I, it really It kind of was the root of my social work interest, I think seeing all the different kinds of oppression and things that happen in those settings. And then I went on eventually to get my master’s in social work. anD I swore that I wouldn’t do any more corrections, but I found myself doing 10 years of youth corrections.

And I was working as a counselor therapist with kids that were. in the community in Minneapolis who are felony level offenders and then who were sent to residential treatment out of home placement. And then I moved to Colorado and I worked with those same kind of kids, only they were up to five year sentences, [00:02:00] everything short of murder kind of kids, really serious offenders from around the state at a place called Lookout Mountain and Golden.

And I was really, really burned out. I, I It made me feel like there was no hope in the world that every kid was going to turn out bad. I just got a really negative attitude and I just knew I needed to quit, that I just wasn’t being effective anymore, but I had no idea what to do. And one day a kid threatened me really severely, threatening to take my life in a very graphic way.

And I went home that weekend and I rethought my life and thought, this is crazy. They don’t pay me enough for this. And I gave notice. without another job or anything. And it took about six months, I think, for that kind of toxic energy in my body to release enough to attract a new career that was good.

And that new career happened to be hospice in the fall of 2001. So I wasn’t really prepared for it because I’d never been around people that were sick or dying. I’d never hung out in nursing homes for assisted livings and memory [00:03:00] care or any of that. But it was like a breath of fresh air for me coming from the background that I had just left.


Diane Hullet: And so you’ve been over 20 years in the hospice and dementia field and then recently wrote this book and let’s, let’s kind of I don’t know. Let’s start with why did you write a book? 

Kay Adams: Well, so when I started in hospice in the fall of 2001, the first week I was there, somebody put a book in my hands called Final Gifts.

And I always forget the subtitle, but it’s something about the special awareness and communicating with the dying. And it became like my Bible. I It helped me so much because it was written by three nurses, it was in vignette form. So it explained things that were commonly found when people were transitioning or getting close to death.

So six weeks into the job, my dad got diagnosed with terminal cancer, so I made my mom read it and my brother read it. I referred families to it seriously every day for eight and a half years. But when I read it, I thought someday I’m going to write my own book in vignette fashion from a social [00:04:00] worker family perspective.

Because I come from a family of storytellers. And I just knew someday I’d write it, but that someday just kept getting further and further away until I got grounded at home with our son during COVID, who was finishing fourth grade when the pandemic started and going into fifth grade, and I was the stay at home parent, and he was literally only in physical school three days in 10 months.

So my business pretty much died on the vine for a while there, and I found myself with a couple of synchronistic experiences that led me to a self publisher in Denver, and suddenly I found myself signing a contract to write a book with no plans to do it. But for the first time, I actually had time on my hands, so it made that part of COVID easier to withstand and to get through, and I actually had something to show for my efforts of living through the pandemic.

Diane Hullet: Well, and you did have the plan in the sense of like this, this connection to narratives from Final Gifts, and [00:05:00] I think there’s something so beautiful about the way you’ve written your book, because each chapter is a story of a family and your experience with them. And it kind of runs the gamut of dementia work, right?

From diagnosis through what’s happening in sort of middle stages. And some of them you’re experiencing the family situation through the death of the person. So these stories kind of serve to illuminate certain things about dementia. And I was very struck by the chapters that were about really the intake.

You know that there’s something happening. People are noticing changes in somebody. And then there’s this moment where you were working at a memory care kind of clinic. And I wonder if you can just talk in general terms about like, how do people, how do people get diagnosed? Not everybody lives in a big city like Denver that has these kinds of facilities that can do an intake and help people understand what’s happening.

But yeah, say a little about what, what do you do if you’re noticing changes in yourself [00:06:00] or a friend or a 

Kay Adams: loved one. Well, I think the biggest thing is if you have access to get a cognitive screen of some sort, so there’s a lot of different ones, like a mini cog test. It’s like 10 or 15 questions. There’s a test called a slums test.

It’s. That stands for St. Louis University Mental Status Test they’re commonly given in lots of places. It’s takes like five minutes, 10 minutes, 30 questions. It doesn’t give you a great diagnosis, but it gives you a baseline. It gives you an understanding if you take it periodically, like every six months about what might be going on with the person.

But even if you live in a city like Denver, it doesn’t mean that people are getting diagnosed early or diagnosed at all, in my opinion. It gets missed so often, and there’s a whole lot of factors for that. But one of the most important things is, if you do get some sort of screening or test, I have kind of a prejudice that it’s important to also get collateral information from close family members or friends.

Because the folks that have [00:07:00] even early stages are for sure in the middle stages are not necessarily accurate historians. So if you are asking them questions about, well, how’s your driving going? Oh, just fine. And the families in the background going, Oh, no, no, no, no, no, that’s not true. Because they may have forgotten the three fender benders they were just in, or that they’ve been financially exploited, or those kinds of things.

And so, I don’t think a screening test, or even just a cognitive workup, if it’s done independently without any other collateral information collected, in my opinion, it doesn’t tell you the whole picture. Getting that other story from people to know the person adds a lot of value to that test because we had some brilliant people come through the memory clinic, a lot of people that were like aeronautical engineers, or I mean, just highly, highly, so that they could just, they could just, you know, score really high on those cognitive screens, and yet couldn’t find their car in the parking lot, couldn’t balance their checkbook anymore, right?

Made a lot of poor decisions, all [00:08:00] kinds of things that wasn’t reflected in the numbers. on the screen. So we had to talk to the family members who were like, oh my gosh, you know, we’ve lived in the same neighborhood for 40 years and he keeps getting lost five minutes from home and all these things are happening.

But the test scores alone would not have reflected that. Right. 

Diane Hullet: And is that something that a typical, like a PCP, a primary care physician would even recommend or have access to? Like, I’m sort of struck, like, Why isn’t this sort of standard operating procedure for everyone over 60 at a yearly or bi yearly exam to just take these baseline tests?

But I don’t think it 

Kay Adams: is. Well, I, I come from the Kaiser system here in Denver, where I worked for over eight years. And I can tell you there, there’s lots and lots of conversations about it. But I think healthcare, as we know, is broken all over the place and PCPs have so much pressure on them and so little time in that 12 minute visit or 15 minute clinic visit or whatever it is [00:09:00] that those it’s like, what are what’s on fire?

That’s what we’re going to deal with today. And these other ones and people are reluctant to bring it up. Families are reluctant. The person may or may not be aware of the brain changes they’re having. And so they may or may not say anything to their doctor. And then if I had one PCP I used to work with who said, well, if I figure out they have dementia, then I have to do something.

It’s easier not to. And that was an honest answer. Thank you. Because they don’t have the time, it’s complicated. So even when you have the resources around, it doesn’t mean much because when I was in Kaiser, I had access to people’s electronic medical records. And you could put in a screen. So I could put in Diane Hullett, and I could put in a screen for dementia, the word dementia or Alzheimer’s, and see how many times that word popped up.

So I would look at some people’s charts, it might, it might pop up 20, 30, 40 times, and there was never a dementia diagnosis on the chart. Never a formal. Diagnosis and that drove me crazy because [00:10:00] these people are missing their meds. All sorts of things are happening. The doc suspects it, but there’s been nothing done.

And so this person doesn’t have anybody looking after them or anybody else aware that. Hey, because it could be out of state family or no family. That they’re really vulnerable to all kinds of things happening, and we’re just ignoring it. And I found that to be true, and not because there’s anything wrong with people in Kaiser, it’s because that happens everywhere.

I work with caregivers across the country, and I hear the exact same story no matter what, if they’re in a rural environment, in a big city, or what state they’re in. 

Diane Hullet: Wow. So, so this is huge just in terms of even understanding what’s happening and, and maybe there’s also sort of truth to the fact that, eh, what good does it do to know?

On the other hand, it helps to know, right? So it’s this, it’s this kind of a duality and this ambivalence of like, we don’t want to know, but if we know it might actually help things. I, I’m so struck too by, like you said, how, you know, if the person doesn’t realize changes are happening. And [00:11:00] the person has memory issues that even if a son or daughter is having a conversation with them, but they don’t remember the conversation the next time, how, you know, how do you get the 90 year old to agree to this kind of cognitive testing and take a bigger look as you said it, other people can contribute to the 

Kay Adams: story.

It’s really difficult. It’s really difficult, sometimes impossible, but the thing is. People with any kind of progressive dementia, which they all are at this point, they’re going to get to the point, some earlier than others, where they lose decisional capacity to make decisions for themselves. Simple decisions and really important decisions.

So, let’s say someone has a mid stage dementia, let’s say an Alzheimer’s disease, and they get a new cancer diagnosis. And they’re alone in the PCP’s office or the oncologist’s office, and they’re giving them all this information. Well, with this sort of cancer, you need, you know, [00:12:00] chemo three times a week, some radiation, you know, all these different things.

Here are the side effects. Here’s the trajectory of time frame that we might be doing this treatment in. Right. All these things, there’s no way they can take in that information, retain that information, and then use the executive functioning skills to make good decisions. But if there’s no diagnosis on their chart, you can’t come in with as the medical proxy, even if it’s someone’s filled out the paperwork saying I want my son or daughter or spouse to be the medical proxy, but they don’t get to come in and take over if the person is deemed as still having decisional capacity.

And so You know, or if they’re unsafe to live at home or all kinds of things. So if you don’t have that diagnosis, you don’t have legs to stand on a lot of times to actually intervene on your loved one’s behalf. Wow. And 

Diane Hullet: this gets really complicated if the dementia has kind of a component of paranoia, right?

If it is a component of like, why are people trying to tell me what to do? Or why are my children [00:13:00] getting in my business in a way they don’t need to? And, and, and I would say you probably do have children who swoop in from out of state and have all kinds of big opinions that maybe are too fast and too much for mom or dad to take in or grandma, right?

So, yeah. So if you suspect dementia because, you know, you’re seeing changes in yourself or a loved one, what are the first 

Kay Adams: steps? Well, I think, again, if you can get any kind of screening, and then I think as family, we need to advocate for that. We have to be a squeaky wheel, because, for instance, you know, if someone’s having some cognitive changes, but they show well in the doctor’s office, the twice a year that they go, the adult child or spouse may have to call the PCP, try to get on their HIPAA, so that they can get information released.

But medical professionals can take information we give them, they may not be able to give it back to us on their patient confidentiality, but we could say, I’m really concerned about my mom or my dad or my brother, [00:14:00] that there’s all these changes going on with them. And we can tell them that they can record that in the record and have an awareness of it.

Diane Hullet: That’s really key because HIPAA has made everything more complicated. So, but as the adult child, you might be able to give the information, even if you can’t get info back. And that could be 

Kay Adams: helpful. I what I say to families all the time is doctors don’t have any time. So it’s concisely as possible. If it’s an email, if it’s a letter, if it’s something bullet points.

A very quick read, but succinct and to the point, uh, so that they have, they can digest that information quickly and not to do it in front of the person with the cognitive change of dementia, because that’s kind of throwing them under the bus. That’s creating a lot of anxiety or paranoia or, you know, other kinds of things that we don’t want to have happen with them.

But I think it’s, there’s not a, it’s not easy to do this. Even if you live in the same town, even if you have the same doctor as your family member, does not mean this is easy. And so I, [00:15:00] I spend an inordinate amount of time on coaching calls, just trying to give people some advice on how to go about that so that they might be successful, even with neurologists or whoever.

And I think also some people choose to get like an MRI or a PET scan to find out more information. I’m always trying to say advocate if you can to find out what specific form of dementia it is, because there’s over 120 different kinds of dementias, there’s a handful that are the most common, but they don’t all look and act alike.

So in the later stages, like one of my coaching clients out. I was on a call with her yesterday and her mom’s in memory care here in Denver. And she had to place her there in July. And she asked me, she said, it just says dementia on my mom’s chart. It doesn’t say anything specific. And she’s never seen a neurologist.

Do you think I need to do that? Well, to me, not at that point, because she’s already in memory care. We already know there were all these problems that were, she was unsafe and couldn’t be independent anymore. But if it’s earlier on, [00:16:00] there’s some medications that might work for Alzheimer’s. But would be contraindicated for like Lewy body dementia and make them worse.

So in the late stages of any dementia, they look pretty darn similar, but not so leading up to it. And so how do you plan? How do you prepare if you have no idea what you’re dealing with? But what happens all too often, in my opinion, is people just on the chart, if that says anything, it will just say dementia.

It’s just like saying cancer. Okay, where is it? What’s it doing? How serious? What stage? Dementia just by itself is just kind of a, it just, it says, okay, yes, there’s a problem. Something’s going on, but where is it located? What is it doing? What parts of the brain is it impacting? Because then you kind of know more information about what Resources to bring in or or what you might anticipate is lying ahead for you and your family member 

Diane Hullet: that makes so much sense.

And and some people are going to have better access to that than others. It’s just really complicated. And some [00:17:00] families are better resourced, not just financially, but also as team members as family members to get this kind of information, right? For sure. I was so struck reading the narrative, you know, of these stories in your book about the incredible variation.

You know, there’s just a huge, huge variation and dementia experiences. But the common thread that I saw was just massive life disruption and grief and. You know, given that massive disruption and the grief and how disparate families are these days, what do you recommend? 

Kay Adams: Well, I, I call it one big ball of grief from start to finish.

And I think you’re familiar with Tipa Snow. She’s a leading dementia educator. So I was trained under her as a consultant and and a trainer in dementia. One phrase that TIPA uses a lot is if you if you know one person living with dementia, then you know one person living with dementia, right?

Because everybody’s path is different. And also, [00:18:00] if there’s one person living with dementia inside their brain, then everyone around them is living with dementia. It’s an altered reality system we all unfortunately have to join from. And so one of the things I’ve just Learned and adapted over time is I don’t sugarcoat stuff.

I’m very, I’m a straight shooter. I’m very honest, straightforward. And I tell people that from the beginning, if that is a style that doesn’t work for you, perhaps I’m not the right person because what I’ve found over time is even in the Alzheimer’s associations or things like that. We like to just refer to memory problems.

We’d like to just refer to these more general terms. When it’s brain failure, when it’s a terminal illness. So if all you’re prepared for is a memory change, not the fact that your loved one someday won’t be able to walk or talk or communicate or, you know, remain continent, perhaps times many years. How is that helpful?

[00:19:00] So it’s just like I learned in hospice, like there’s always hope, right? Even if someone has a terminal illness, there’s always hope. It might not be hope for a long, longer, a lot longer life, but what is the quality of life, right? What is the context of their life? What’s important to them? What are the values?

And those kinds of things. And to have have conversations, so you know that you can honor that. But with a dementia, people are going to lose ability to tell you all those things as they change. And so folks just will say to me a lot like, wow, I’ve been to all these other groups or these things. No one ever told me that.

Or I learned more in a 1 hour coaching session with you than I have in the last 4 neurologist appointments. Well, I just think that’s because. People, especially medical professionals, because what are they trained to do? Cure, right? Cure and treat. And when you have a disease that no one, despite all the research and money going into it, no one’s unlocked the key yet.

No one’s figured it out. And so they feel kind of impotent. They don’t have much to offer. They can offer a med that does next to nothing, [00:20:00] right? And so there’s a lot of avoidance and denial on both sides of the of the aisle with that kind of stuff. And then I come in there and kind of blow that up and go, listen, it’s not if it’s when.

And I don’t try to take away like kind of shine in the flashlight down the down the path for them. I try not to get too far ahead of them. But I always want to say that, you know, let’s anticipate and there’s people that want to say, you know, I just want enough information to get through this week or the next 6 months.

And there’s some that say, I want to know how this is going to play out. How do I prepare for this? And you just have to meet people where they where they are. But I think because there’s so much complexity to it, and it’s the most financially. impactful disease that we have going on out there that people just really need to get a tribe.

You got to find your tribe. You got to find the people that can support you. And what I hear constantly from the care partners that I work with is let’s say you have 10 people living on the block and 10 out of 10 people are caregiving [00:21:00] for someone in their neighborhood. Okay, but only one of those 10 is caring for someone with a neurological disease like Alzheimer’s.

The rest of it might be cancer or heart disease, lung disease, whatever. They are not all having the same experience, especially the care partner for someone with dementia. But their neighbors… All think they are and so they give well meaning advice to this care partner about you’re so lucky you can still do this and that or whatever with your family member and they’re like, I am not feeling lucky.

Thank you very much. I can’t even get a five minute shower. I’m totally sleep deprived. My husband doesn’t recognize me most days. I mean, there’s all these other things that go with it. And so, because other people don’t understand or are scared of it, Right might be contagious. It’s the most frightening illness that’s out there right now.

It used to be cancer, but now it’s dementia. So folks just get really isolated because of the disease and then they get socially and emotionally isolated because we live in a culture that’s death denying and we’re scared to death and [00:22:00] we don’t know how to talk about it. And so people run away and that adds to the isolation and therefore adds to the Thank you.

health disparities that caregivers go through. And so I’m all about find your tribe, find a non judgment, judgment free zone where you can use however many four letter words you need to about what’s real for you, right? And then invite other people into the world because They too are probably going to enter it at some point either themselves or their family members or their neighbors or, or best friends.

And so the more that we start now kind of building that karma and giving to each other and building those networks. I’m, I’m thinking it’s, it’s going to be so important, right? Because there, but for the grace, it’s going to be us in the next shoes. And then the other thing I would just say is what I say to folks is, you know, when you’re in the middle of the weeds and it’s, Yeah.

So difficult, like when I was in hospice, my dad got diagnosed six weeks into my job with terminal cancer and died six months later, which was a rough start to a job I knew nothing about. I mean, inside out, [00:23:00] horrendously challenging position to be in. I didn’t learn. I would have rather read a hundred books on grief than lose my dad.

But it made me so much more attuned to the patients and families that I worked with, so much better at my job because I lost my dad so early on. And so I tell folks, you know, you can’t see it necessarily now, but there’s profound lessons that can be learned from living with someone or taking care of someone with a life limiting illness.

And and caring for, for somebody learning, learning to be a caregiver and also just the lessons of grief. I believe that the two strongest human, human emotions are love and grief. That’s what I think. And if we can embrace those lessons, not push them away, not numb them out, not avoid them, not do all of those things, they change us.

And they make us better in the end. But we’re in the middle of it, we can’t see that. So we need to have people who have been through [00:24:00] the shoot already before us to let us know that there’s actually some good things that can come from this experience, even though it’s really tough. 

Diane Hullet: Oh, I think that’s so beautifully put Kay, and I’m reminded of this section in your book that I was so moved by because it was a daughter who was talking about sort of, she was so frustrated with her dad, and then in her work with you she kind of found ways to shift that so I want to just read this section.

This is from Kay’s book, Bedside Witness. Jasmine told me, I’ve made a lot of progress when it comes to picking my battles with my dad, and I’m learning not to go to the mat with him over something as stupid as putting a burned out light bulb into his underwear drawer. It seems like a small thing, but it’s actually made a huge difference in terms of day to day interactions.

I’m getting better at letting go of all the mistakes dad makes without getting bent out of shape every time he does something wrong. I’m also slowly improving my ability to adjust my [00:25:00] expectations and my approach. So that I don’t ask more of him than he can realistically deliver. The issue I continue to struggle with is figuring out how to be more patient and compassionate with myself when I don’t always show up as a daughter and caregiver in the way I’d like to.

And the guilt I feel when I don’t live up to my own expectations. I guess I’m still a work in progress when it comes to that. But my biggest takeaway of all is coming to terms with the harsh reality that I truly don’t have any control over what happens to dad and his dementia. But I do have control over the choices I make and the actions I take when it comes to caring for him.

So from here on out, that’s where I’m going to put my focus. 

Kay Adams: That was, that’s, that was a good day for me as a dementia coach when, when people can arrive at those light bulbs. And I think what I work with, with care partners about all the time is what [00:26:00] do you actually have control over? Let’s focus on the variables.

And I think I’m always referencing COVID because I think we’re in our country. At least we think we have all this control over our universe and we’re in charge of all these things. And then we have a pandemic. And it’s like, we don’t control anything. That’s how I felt for a long time, and I still don’t feel back in control, right?

It was a huge wake up call, stopped all of us in our tracks. And so, I think we need, and I’m trying to work with folks about, it’s not necessarily lowering your expectations, but it’s adapting your expectations. 

Diane Hullet: Yeah, that’s a great word. It’s not lowering, it’s not less than, but it’s adapting. 

Kay Adams: And shifting, right.

And so if you, so first of all, you have to adapt it about the person you’re living with or caring for with dementia, and that is hard to do. That’s a long road. Because until it’s really, really obvious. And you cannot keep it in your forefront of your brain, Oh, they’re just doing that because they have Alzheimer’s or they’re just doing it because they have vascular [00:27:00] dementia from the stroke or because they have Lewy body.

Our brains as care partners aren’t wired like that we cannot literally keep that in the forefront of our mind all the time, especially when physically it’s not obvious, you know, and so only when it gets really far down the road and progress. Can we. Sometimes remember, oh yeah, they’re, they have a dying brain, they’re doing the best they can with it, but they, they can’t really perform like I’m liking.

But I think even more importantly for care partners, they have a really hard time adapting their own expectations of themselves, especially women. Especially women, I work with both men and women, more women than men as care partners, but women beat themselves up, I mean royally, when they aren’t infinitely patient 24 7 times seven years.

When they get frustrated, when they lose their temper, when they start bawling and lock themselves in the room to get away for a while, whatever it might be. And so I’m like, you have to adapt your expectations because [00:28:00] you’re waking up with a mental tank of gas that isn’t on full every day. Right. Often it’s on fumes by 8am.

And so it’s like we have to, you have to realize that you can’t expect the same for yourselves and I, I reference a lot. My son who’s almost 14 and I know it’s not the same as being a caregiver but we are caregivers and we’re raising kids and One of the things with him and I really lost it. I’m a calm parent parent mostly, but in COVID, I had a really bad day, right?

And I just sort of lost it with him and and yelled and got really frustrated and stuff like that. And I said, so I tell care partners, you know what, I know better, but I didn’t do better. So you get an opportunity to practice apologizing a lot, you know, goes a long way and they may not remember it, but you get an opportunity.

You know, to do that and you, and you have to adapt. So what I said to myself, when I lost my temper with Eli was, you know, this is a jackpot we’re all in right now. I’m stuck at home with this kid. My business has died. [00:29:00] He’s crying all the time. He’s a single child. Hasn’t seen a friend in seven weeks. He’s having meltdowns.

I’m doing the best I can and it doesn’t look pretty. I had to adapt my own expectations of myself because I didn’t need to beat myself up more than I already was. 

Diane Hullet: Right. And then in seeing that it usually shifts it right in seeing it really clearly like, Oh, this is not pretty. And, Oh, I would like to really not go to where I just went.

It usually can help shift. And I think developing that patience in these kinds of dementia situations. Probably the most difficult thing. And I think what you just said is so powerful that we can’t keep it in mind. I, I, I remember I’ve read some of Tipa Snow’s work and one of her books, she describes a conversation, you know, between a husband and a wife and, and, you know, it’s, it’s like you expect it to be the conversation you always used to have.

You know, you yell from the other room, Hey, what do you want to do for dinner? And she says that no longer worked. So [00:30:00] now it’s stop what you’re doing. Go to where he is. Connect and then say, I’ve got two options for dinner. Would you rather have this or this? And, you know, she’s spun out this whole conversation saying, this is how it looks different.

This is how we adapt so that we’re connecting and speaking together, not just. in sync the way we used to be, because I think there is this, this out of synchness that happens, especially for long, long term spouses. You know, people married 50, 60, 70 years who are now going through this. So gosh, the projected numbers on where dementia is going are, it’s pretty staggering.

And you know, what’s your take on what we can do as individuals or communities? What, what do we need to 

Kay Adams: do? Oh, boy, there’s so many things as individuals. I think it’s being proactive for ourselves. So there are a lot of a lot of research out there about what is good for your heart is good for your head, right?

So doing things like controlling [00:31:00] your blood pressure, diabetes, trying to control your weight, you know, not being obese, those kinds of things, because all of those things increase our probability of having strokes and developing vascular dementia. We need to try to eat healthy, keep physically and mentally active, but eating healthy is a more like decades long thing.

So what I see families try to do is, Oh, my husband just got diagnosed at age 78 with Alzheimer’s. I’m putting him on the Mediterranean diet today when this is a guy that ate fast food three times a week and I’m like, well, probably not so much then, but if he had started in his thirties, maybe right? And there’s all these additives to our food.

We don’t really know. We know that diet is part of it. The risk factor, but it’s not the whole thing, but we can try to start doing that. And we saw in COVID that staying socially active, if we’re isolated, isolation kills, so we need to stay stimulated. We need to stay engaged with other people and with life.

If you have problems with your vision or your hearing, you want to maximize that because if we, [00:32:00] we take in most of our data visually and then auditorily, and if we’re missing stuff. That we could be picking up on if we had some assistance, then it can look like a dementia. If they’re not hearing it, they don’t remember it, right?

And so a hearing aid or some new glasses might really help taking good care of your physical and mental health. We saw that again and with covid. So I kept saying I need a dog during covid. I need a dog. No, you want a dog. No, I need a dog because for me, those animals, dogs are just like therapy, right? And I was like night and day once I got my dog.

It just settles me. It’s like good for my nervous system. We want to try to get good sleep. This is really hard for care partners because a lot of people with progressed dementias are upside down with their days and nights and all that kind of stuff. But we know that lack of sleep is a risk factor for dementia.

We want to protect our heads, wearing seatbelts, wearing bike helmets, fall prevention stuff. So that we don’t hit because those falls are [00:33:00] game changers for seniors. And one of the things that people don’t realize is that with the dementia, like if you or I, I’m, I’m assuming we both have pretty intact brain still, Diane.

So if my hand here is, is my brain, and this is a skull right on top of it with my other hand, if we fall and we hit our head, we have a pretty good protection because there’s not a lot of room. But if you have a dementia and the brain has atrophied or shrunk, there can be space. So one little fall can make a lot of difference.

on the brain. So we want to try to prevent falls. We want to reduce or eliminate alcohol and tobacco use. And again, that’s because of risk factors with strokes. And this is my added thing. That’s all the research. My added thing is try to use humor, try to find a way to laugh. Because every job I’ve had has been so difficult with domestic violence or corrections or mental health or palliative care, dementia work.

There’s, it’s like, you gotta find the humor, you gotta find the ways to laugh, otherwise you go crazy. So I always encourage, what, [00:34:00] what can we find that’s funny in this? What can we, where can we release some endorphins and not just be so sucked into how sad everything is? And then as a society, I think, Just look at the trends.

We’re all living older and unless we die suddenly of a heart attack or getting hit by a bus, we are all going to be caregivers and we’re all going to be care receivers. So again, let’s start now with caring for people. I want people to be curious about other people, not, I call it the hit and run. Hey, how you doing?

As they’re walking by. They’re not really asking you how you’re doing, but learning to say, how are you doing, Diane? What’s going on? Can I come in for a cup of coffee? Can I bring you a casserole? Can I learn about your world? How can I help? We need that desperately right now, and on a national level, I think trying to get funding and things for more research around Alzheimer’s disease to try to get resources for care partners, because there’s just, it’s like, it’s like a desert out there for families [00:35:00] dealing with dementia, and they really need the help.

And I think, lastly, I would just say, I’ve read this phrase many times, but do what you can from where you are with what you have, because sooner or later, it’s going to be your turn. So it doesn’t have to be a lot. Yeah, it could be just calling, just texting. I’m thinking about you, you know, dropping off a gift card.

It could be anything, but just to go, Oh, someone remembers me. Someone’s thinking, because I think our culture set up to just ask about the person with whatever the illness is. And they, we totally forget to ask about the caregiver and they are completely the unsung heroes. In my book. 

Diane Hullet: And as you said, more and more people are going to be caregiving.

And I think we’re going to be on both sides of that, right? Oh, that’s such a beautiful quote, Kay. I, I want to mention for sure that Kay, we’re recording this in you know, November of 2023 and Kay’s got a virtual zoom workshop coming up. So, Kay, just talk about these kinds of workshops that you [00:36:00] do, because I think This is part of getting out of isolation and finding tribe and finding a safe place is to show up for something like this.

This is called more than memory, understanding brain change and dementia from the inside out. So, you know, it’s an hour and a half workshop on zoom and might be useful to some people. Yes. You can find out more about Kay’s work at our website, km adams.com. And of course you can find out about the work I do at Best Life, best death.com.

I think this is a conversation we could just continue because there’s so much to say here and we’ve really just scratched the surface, but I think you bring such a wealth of experience to the coaching side of the table and the kind of yes. Supporting families. And I, I think you’re kind of blunt approach of saying this is, this is an end game because I think people, we have a little bit of an attitude.

I hear people say like, well, dementia isn’t terminal or dementia, [00:37:00] you know, they’re just going to live with this for a long time. Well, 

Kay Adams: it is terminal. Yeah. Unless something else happens. And when I do classes, you were mentioning the more than memory class. I do that every month, except December because no one’s coming to anything in December.

But it’s a, I, it used to be two and a half hours and I’ve condensed it to an hour and a half and I go over all the major kind of dementias, all the different symptoms of those. I have tons of brain slides, which are helpful to say, here’s what a normal brain looks like. And here’s what a brain impacted by Alzheimer’s looks like.

This is why when they get lost in familiar places, do you see the changes in the brain, Occipital lobe, that’s changing the vision, you know, those kinds of things. And it really makes a lot of connections for folks. So I have people that come to that, that their family member is newly diagnosed. I have people that come to the class that they’ve maybe been caregiving for a number of years.

And they’re like, I never knew that. And so I think, I think education is power because again, how do you know how to help if you don’t know what you’re dealing with? And if you ask most people on the [00:38:00] street, what is dementia? What is Alzheimer’s? They’re going to say memory. And that’s not, that’s not even beginning to scratch the surface of that.

So if people can get some education and some tools, some tools in their tool belt and some skills, because it’s not logical, the skills we have to learn are like upside down for us, we have to enter their reality, even if it doesn’t make any sense to us. And these kinds of things. And so we don’t learn these habits overnight.

And we’ve been maybe in this relationship with this person for decades. And our brains are, we have well worn grooves of how we interact with that person. And it just doesn’t, we just can’t get the needle on a new groove. It takes a long, long time and practice. And I, I always joke, well, you have lots of time to practice when you’re caring for someone with dementia, because you know, you’ll make a lot of mistakes and you can, you can try again in an hour.

And it’s like a new day for a lot of folks. 

Diane Hullet: Wow. Wow. Well, okay. We’ll definitely talk again. [00:39:00] This has been really helpful in terms of how to think about dementia, how to think about getting the diagnosis and how to sort of big picture, take a look at what’s happening for you or your loved one. So I thank you so much for coming in again.

You can find out more about Kay here ⁠www.kaymadams.com. Thanks for listening. 

Picture of Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.