Episode 138: More Than Memory: Navigating Dementia, Caregiving & the Road Ahead

When dementia enters a family, it can change far more than memory—it can affect personality, judgment, independence, relationships, finances, and the lives of everyone providing care. 

In this episode, Sandy talks with licensed clinical social worker and Compassion Works founder Kay Adams, who brings more than 30 years of experience in geriatrics, hospice, palliative care, dementia, and caregiver support. 

Kay explains some of the early changes families should watch for, why getting an evaluation and diagnosis can be so important, and why planning ahead with advanced directives, education, and support can help families navigate what comes next.

Kay also shares an important message for caregivers: you cannot—and should not—try to do this alone. From building a “care community” and asking for help early to preparing for changes before a crisis occurs.

Kay offers practical guidance for families facing one of life’s most challenging journeys. She also discusses her work through CompassionWorks and her book Bedside Witness, which uses real-life caregiving stories to educate, encourage, and validate the often-unsung heroes caring for people living with dementia and other serious illnesses.

Resources:

Kay Adams Website

Bedside Witness: Stories of Hope, Healing and Humanity

Playbook AI Partners

Playbook AI Partners - Podcast

AI Tool Fit Check - Free Guide

Want to be a guest on Get Savvy...Demystifying Healthcare? Send Sandy Kibling a message on PodMatch, here: https://www.podmatch.com/hostdetailpreview/getsavvydemystifyinghealthcare

Transcript

SPEAKER_02 0:00

I always start with try to get a diagnosis and try to get that documented because over time someone is going to lose their capacity, their capacity to make decisions, their capacity to be their own spokesperson. What do I want or don't want medically going forward? And if you don't have a diagnosis, even if you've been appointed that person's medical power of attorney, which is the other bandwidth and I, you know, get your advanced directives done. Get this stuff documented. Because as a medical social worker for 25 years, I can tell you those that's the go-to form.

SPEAKER_00 0:35

If healthcare has ever left you feeling frustrated, overwhelmed, or stuff, know it's for you. Welcome to GetStabby, the Mystify Healthcare weekly podcast, where we take complicated healthcare topics and complicated healthcare tests.

SPEAKER_01 1:11

Hello everyone, before we get into the show, just a quick 90-second update. What could you accomplish if you could gain five or even 10 hours every week? And bonus, are you looking for a new podcast? Well, if you haven't heard, I do have a second podcast called Playbook AI Partners. Yes, it's that AI topic. But here's the thing: I believe that AI should make your life easier, not leave you buried in confusing tools, technical jargon, and endless tutorials. As always, I am doing what I do best, and that is demystifying those confusing topics and making them simple. At Playbook AI Partners, I deliver practical conversations, expert insights, and simple AI knowledge nuggets that you can put to work in your business or personal goals right away without becoming a technology expert. And if you're ready to go from listening to doing, Playbook AI Partners also offers the AI Mini Solution Locker that's going to give you that focused, easy-to-follow solutions designed to help you solve a specific problem and accomplish the real goal in 20 minutes or less. And if the topic of AI gives you overwhelmed, guess what? You don't have to do it alone. We also have a community called the Huddle. It is a group of business owners and professionals learning how to use AI with greater clarity and confidence. I don't know about you, but that sounds good to me. Stop spending those hours trying to understand AI on your own. Start using it to get your hours back. Check out Playbook AI Partners Podcast, the AI Solution Locker, and join us in the huddle. I'll drop a link to it. Check it out in the show notes. Let's demystify AI together. And now on with the show. Well, hello everyone, and welcome to the show Compassion Through the Caregiving Journey, Dementia, Grief, and Finding Support. When dementia, serious illness, grief, or caregiving enters your life, the emotional weight can feel overwhelming and isolating. What do you do for your loved one? How can you support them and make sure they get the care they deserve? And how do you take care of yourself? To help us get into this topic, I have Kay Adams on the show. Kay is a licensed clinical social worker and founder of Compassion Works LLC. She has over 30 years of experience counseling and coaching individuals and families around a broad array of complex emotional and health-related challenges. Kay has worked extensively in the fields of geriatrics, hospice, palliative care, and mental health counseling over the course of her career. Since 2001, Kay has served in a variety of capacities with people living with dementia as well as with their families and caregivers. She has a strong passion and expertise for supporting, educating, coaching, and training personal and professional caregivers around issues related to life, limiting illnesses, grief and loss, and the disease of dementia. Welcome to the show, Kay. Thank you so much. I'm excited to be here. Well, what a great bio. And thank you so much for all that you're doing to help others. I think w so many of us this are thinking of andor already caring for a senior loved one. So what you do is so needed. So thank you for doing that.

SPEAKER_02 4:32

You're welcome. It's my pleasure.

SPEAKER_01 4:35

Well, why don't we start by having you just tell us our your story and how it led you on the journey you are on today?

SPEAKER_02 4:43

Well, so I have had a lot of different jobs, more like a patchwork quilt than a streamlined career path. But the big change for me came after working in youth corrections for 10 years with really hardcore delinquent youth, both in Minnesota and in Colorado. Uh everything short of murder kids I was working with in mental health as a therapist in a locked uh maximum security setting. And I was extremely burned out and kind of had lost my faith in humanity based on the stuff these kids were getting into. And and I did that career at the time that the Columbine shooting was happening here in Colorado. And I was just like, I have got to get out of this. I have got to do something different. This work at the time was just killing my spirit. And so I quit without another job. I had no idea what I was gonna do. And I just knew I had to get out of there because I had I was threatened really seriously by one of the kids I worked with, and he was gonna hunt me down and cut me into pieces, he said, when he got out. And I thought, you know, they don't pay me enough for this. This is insane. I I that was my I call it a cosmic two by four, right? Like, I can't do this anymore. I cannot do this anymore. So I about six months went by. I was interviewing for different jobs. Everybody always wanted to hire me to work with teenagers again, and I was like, nope, nope, nope, nope, taking a timeout, not doing that. And then I found myself applying for a job in hospice, and I had no idea why. I only knew one person who'd ever worked hospice, and that was when I was in graduate school. And she did an internship in hospice, and I thought she was nuts, and I was working with inner city gangbangers, and she thought I was nuts. So anyway, but I found myself applying and somehow or another they hired me, and that was in the fall of 2001. And I had never worked with older people, I'd never worked with people that were dying, I've never worked with people that were sick, I'd never hung out in nursing homes, assisted livings, memory care, any of that. Uh and another big thing that happened was six weeks into that job, my dad was diagnosed with terminal cancer and then died six months later. So that was quite a curveball in a new career path. But it really developed my passion for working with patients and families with life-limiting illnesses. And one of the things that happened in that eight and a half years I spent at bedside in hospice was that the majority of the patients I worked with were 75 to 103 years old. And just by virtue of that, a whole lot of them were impacted by dementia. And it could have been the primary reason they're on hospice, or it could have been in addition to their cancer or lung disease or heart disease. But I really saw how devastating that illness is for the people living with it and for the families. And I thought I'd retire in hospice, but the universe said nope, we're gonna pluck you out of there and put you over in Kaiser with no plans on on changing jobs. And so I went to Kaiser for eight and a half years, and four plus of those years was in the diagnostic memory clinic. So I got to work with this high-level group of professionals. We were the diagnosis arm of Kaiser here in Denver for folks with cognitive changes and and stuff. And so then I was more at the front end, but it was only two appointments, and people never let go of my card. And they kept calling month after month. Now what do we do? Now what do we do? So that was hard. And then my last year and a half in Kaiser, I was the home-based dementia specialist. And so then I was driving all over Denver doing home visits, education, support, and I loved it. It was like a dream job. Only there were thousands of Kaiser members with a dementia diagnosis and one of me. And I found the internal discord really hard to live with because people would beg me to come do another home visit, beg me to do another clinic visit or phone call, and I literally couldn't do it. And I couldn't live with it. So I jumped ship in the fall of 2018 from Kaiser and then started my own business, Compassion Works, in the spring of 2019. Possibly I would have hung out in Kaiser longer if I knew a pandemic was around the corner. But but I didn't know that. So so I was just out there um on my own, uh, you know, a year into a pandemic.

SPEAKER_01 8:37

Wow. Well, I believe in God wink. So you had a few of those. So uh again, I think there's such a great need to help people um with dementia. It is very, very challenging in it. And, you know, I speak of that. My husband and I took care of my father-in-law. We lost two and a half years ago who had dementia. And it was very hard going and visit and trying to understand how to care for him, care facilities, guilt, all the things that that you struggle with and frustration, uh, I'm not gonna lie, because sometimes we didn't know what to say or how to deal with it. So, with that, I know I, you know, my husband and I aren't alone. I'm sure my many of my listeners say, yep, me too. So, with that, what are signs that maybe caregivers need to look for if they're concerned that mom's not remembering things very well or I'm beginning to see this happening? What are those signs that you would uh uh tell folks to look for?

SPEAKER_02 9:33

Sure. I just want to preface this by saying there's over 120 different kinds of dementias. Okay. And I don't know what they all are, but there's a handful that are the most common. Yeah. The of that handful, the one that's most prevalent is Alzheimer's type of dementia. It's the it's the seventh leading cause of death in our country, 65 and older. Uh, then there's all kinds of other dementias too, like vascular dementia from strokes or Lewy body dementia, frontotemporal dementia, alcohol-related dementia. There's all kinds, and they don't all act the same, and each person goes through it differently. So I just want to preface that because a lot of people make the um mistake of saying, oh well, my grandmother died of Alzheimer's, and now my cousin has Alzheimer's, and so it's gonna look the same, not necessarily at all. What I what I coach people to look for are changes, and most people think a dementia equals just a memory problem. That's the stereotype, but it isn't at that at all. It's it can affect memory for sure, but it also if you think about our brains, our brains are the control center, right? It controls everything. So with a dementia, depending on what part of the brain it's attacking, what what part of the brain is dying over time, it can affect mood, it can affect personality, it affects uh executive functioning skills, being able to process information, sequence tasks, balance a checkbook, follow a recipe, it can affect um our being are being able to regulate our bodies, our blood pressure, there's all kinds of things. But the the things that are most common for people to notice are usually starting with memory for a lot of folks, uh short-term memory in particular with Alzheimer's type disease. But if they start seeing any significant real personality changes, impulsivity, things that never really were characteristics of that person before, it's a red flag. But what happens, I find, is that people they just write it off. They write it off to stress, they write it off to old age, they write it off to all kinds of things, and it's only when you look back with 2020 vision and you start putting the puzzle pieces together that you realize, oh wow, this was the start. They were missing appointments, they were forgetting to pay the mortgage, they were getting lost in familiar places, they were getting our kids the kids in the family's names mixed up. Uh, they got financially exploited over the phone. And they would have always been very wary of something like that in the past. So it can come in lots of different guises for different people. But what I find is that we don't usually put those puzzle pieces together until later, unless it's something really obvious like a stroke that changes the course of the person's life overnight from being maybe totally independent to being, you know, confined to a wheelchair and needing to be fed and dressed and bathed and everything else from from that point on.

SPEAKER_01 12:30

Oh my goodness. I am so blown away by your knowledge. Okay, this is just amazing. And thank you for sharing with us. It's I'm I'm still living on the profound cloud or it here because I didn't know there were 120 different types of dementia. And, you know, everything you said just resonated. I mean, you want to first go to denial because you it's your mom or your dad or or cousin or whatever, but your senior loved one. And then I you you medically just go to what you know, which obviously, you know, for me as a lay person, not much. And so I appreciate you sharing that with us and the different different uh things. But let's just carry that that through if we can kind of just take that scenario. You've now observed the signs. Um, we're not going to diagnose what type of dementia it is, but you've observed the signs, you have concern. What does a caregiver do? Let's say that senior loved one's living in a home. Are we immediately looking at memory care? What what a what is what does a caregiver who's overwhelmed do to help out their senior loved one?

SPEAKER_02 13:32

Well, I'm always on the bandwagon that if possible, get a diagnosis. Get the person to go get some cognitive testing, even a even a dementia screening test in the PCP's office is a start. But here's the deal 50% of people, even in the early stages of a dementia, have no idea anything's different. And it's not denial. It's a thing called anasygnosia, where they literally cannot see the changes in themselves. My mom was living with dementia her last five years before she died a year ago, December, and she thought she was good as gold. She thought she was just fine, and there were all kinds of things that were off. And she could not see what the rest of us could see. So she would not go in for testing. She would not go in for an evaluation. So we had to kind of do some workarounds with her PCP to get the information to him that all is not well with her brain. But if you can get a diagnosis, because they don't all act the same or look the same, and medicine, some medicines that might be a little bit beneficial for Alzheimer's could be anything but beneficial for Lewy body dementia. So I always start with try to get a diagnosis and try to get that documented because over time someone is going to lose their capacity, their capacity to make decisions, their capacity to be their own spokesperson, what I want or don't want medically going forward. And if you don't have a diagnosis, even if you've been appointed that person's medical power of attorney, which is the other bandwagon, you know, get your advanced directives done. Get this stuff documented. Because as a medical social worker for 25 years, I can tell you those, that's the go-to form. So, and then have conversations with the person about what's going on. If they won't go and get an evaluation, or if they have no access, because it could be nine months, a year out, depending on where you live. We don't have enough neurologists or anything right now for the numbers of people facing this illness, at least start documenting what's going on so you can kind of maybe see a pattern. And then I think it's super important for caregivers to get educated. I do a lot of free classes that are sponsored online about dementia so people can understand what it is they're dealing with, because like I said, the stereotype is it's just a memory problem. And the class I do nearly every month is called More Than Memory, Understanding Brain Change and Dementia from the Inside Out. And I called it that because it's more than memory. If that's all you're thinking is going to happen, you are not ready for what's coming. And so I think getting the diagnosis, getting your advanced directives done, trying to get some sort of an evaluation and getting your ducks in a row is a really good place to start. And then for caregivers, you really need to find support because this is a really tough illness. It's not the same as caring for someone whose cognition is still intact, whose logic and reasoning is still intact. It's really the opposite of that and quite challenging for most folks.

SPEAKER_01 16:28

No, I appreciate that. So those are some great steps for people to think about. And it's nice to know you can go to your D your primary care physician and get that request, that cognitive test if you have concerns about that. Um and and yeah, I did really appreciate those next steps because you're right, it's kind of like putting those puzzle pieces together, but you don't know which piece goes next if you don't start with those three things. So that is great. Now let's talk about that caregiver piece because you know, um, I'm also a health insurance broker, so I deal several of my clients are caregivers of a senior loved one. And and and having been one, and frankly, I am today of my 85-year-old sweet mom. And it it's a lot, it's a big burden. You're managing your life, you're managing um your your that of your senior loved one. Uh how how do you care for someone, right, who's struggling, let's say that they have now a diagnosis dementia. How do you care for them and care for yourself and your family at the same time?

SPEAKER_02 17:30

It's extremely challenging because unlike some other illnesses, I think it's unique with the dementias because caregivers' worlds become so small. As the disease progresses, there comes a point where the person is not safe being left alone at all. And I'm working with a family right now where the the gentleman who was diagnosed is only 55 with early onset Alzheimer's. It's a second marriage of two and a half years. They have six kids. The wife had to go back into the workforce, he's no longer able to work, he's no longer able to drive. It's changing everything in the family with this dynamic. And so I again I think trying to get help for the caregiver because they're gonna need it. I say it takes a village with this illness. But what happens is people don't plan for that. And they say, Well, I gotta do this, it's my job as the wife or the partner or the daughter or whatever. But you can't just do it all by yourself. So I always like start early building a care community, start early asking other people for help. Can you just come and hang out with my husband for two hours so I can get a cup of coffee or go to the gym or take a nap or or do things because the burden of care is really high with this disease as it goes on. And so folks think I can't even take five minutes for a shower because they may be out the front door or start the burner on fire or start overflowing the bathtub or falling or or whatever. And so I just think that's why I'm I'm a pretty straight shooter with everybody I work with. I'm like, if you have the ostrich approach to this, then you probably don't want to work with me as a coach because I'm like, how do you prepare for stuff if you don't want to know what's coming? And I'm I'm all on the camp of let's try to avoid the crisis if we possibly can for the person going through this illness and for the family. And that's not always possible, but a lot of times it is. But it takes pre-planning and it takes shining the flashlight down the path a little bit about these are some changes you might expect coming over time. And this is how you could pret prepare and put some things in place so that you're ready when those things happen.

SPEAKER_01 19:43

Great thought. So, Kay, let's talk about you and and what you're doing with Compassion Works and the services that you offer. Now, you talked a little bit about a course you do a week, free courses, coaching. Tell us more about those who are listening who say, I I need a call Kay.

unknown 20:01

Yeah.

SPEAKER_02 20:02

So I, you know, COVID changed everything. I was a year in in my business when COVID happened, and my my business almost died 100% practically that first year of COVID. But I had to pivot like everybody else. And so before I was just Denver based and just worked with people in person here, but now I work with people currently 35, 40 states. I've had 20 countries represented in my classes in the last year, because dementia knows no borders. So I work with individual family members or entire families who have a loved one or somebody in their life who has cognitive change or dementia. It may not even have been diagnosed yet, but tr there's trouble in paradise and everybody sees it all the way to somebody might already be in memory care or thinking about that. So it's anywhere in between those things because there's common stressors that happen. I think about coaching as the person with dementia is in the middle of the circle, and there's all kind of spokes that come out. So it affects relationships, it affects finances, it affects stress, it affects your golden years and your ability to travel, be independent, all of those things. So I help folks with just the emotional support, with strategies, with trying to link them to some resources, with let's, you know, when am I going to be ready to move somebody? Do I have to move somebody to memory care? All of those kinds of things is what I do with the coaching element. And then I do a lot, a lot of classes in person and online. I do a lot of keynote speaking. I wrote a book that came out four years ago. So I do a lot of um stories around the caregiving and trying to elevate the people living with really difficult illnesses, and especially my heroes are absolutely the care partners in this scenario. They're my absolute heroes. So they're why I get up and do what I do every day, because they're the unsung heroes. And they're doing an impossibly difficult job, usually alone, usually with not a lot of validation, usually with people not understanding the shoes they're walking in. Are really having a tough time. And so my goal in life is just to like up if I can empower and educate the care partners, the person living with dementia is going to do better. So that's the angle I come at in my business.

SPEAKER_01 22:11

We will make sure and link to that so people can uh learn more about you, your services and classes and all the above. Now you mentioned your book, uh Bedside Witness. Can you tell us more about that?

SPEAKER_02 22:23

Yeah, I ever since I started in hospice in the fall of 2001, somebody put a book in my hand when my dad was diagnosed with terminal cancer. And the book was called Final Gifts. Never remember the subtitle, something about communicating with the dying. It was written by a couple hospice nurses from Colorado, and it became like my Bible. It was all vignettes. It was vignettes about how to communicate with people that are really sick and dying and you can't do the normal communication. So I made my mom read it. I made my brother read it. I referred families to that book every single day. And I thought someday, someday I'm going to write a book of vignettes from the social work family perspective about stories. And it took a pandemic till I had time. So that's what I did in 2020 and 2021. There's 35 vignettes written about 20 years of my career. So there's stories from all my hospice days. And I try to really, it's the stories that inspired me that were funny, sad, poignant, whatever, that stood out for me all these years. Then I have a bunch of stories from when I worked in the memory clinic in Kaiser and the Palette of Care. So about what it's like to be in a room when someone's diagnosed and that news is delivered and what's happening with the families. And then I the last part of my book is all about the coaching stories, what I do in my work with people. So the whole goal of it was really to elevate caregivers. And that I I embedded purposely a bunch of education in there that people don't even know they're being educated, but they are, so that you don't have to have my years of 25 years as a medical social worker to get a glimpse inside the living room window of people that are struggling with caregiving. In particular, two-thirds of the stories have a dementia-related theme. So I think it just really validates people. The book is well, very well received. I won a uh gold medal and an international award for inspirational nonfiction, and I won a bronze in death, dying, and grief. And I've never written a book, so that was pretty thrilling. But I think it's been very beneficial for care, you know, for people that work in hospice or palliative care or medicine, geriatrics. It's super helpful for family members and the layperson. I wrote it so anybody could read it. And the feedback I get a lot is it's great because it's for the short attention span, because the stories aren't longer than 10 minutes and they're not connected. So therefore, you can, while you're waiting for the you know, spaghetti water to boil, you can read one story, put the book down for six months, doesn't matter, pick it back up again, and you won't have missed anything.

SPEAKER_01 24:44

That sounds amazing, and we will make sure and link to that. Well, as we draw to a close, I would love it if you would just share any final thoughts with listeners that may be struggling with this or concerned or have questions that you would like to leave them with.

SPEAKER_02 25:00

So I'm always saying to people, find your tribe. Find your tribe. You have to have people that understand dementia or are willing to understand it, are willing to be educated who can support you. And most people are scared of this disease. It used to be cancer was the number one fear disease, and now it's dementia across the board. So a lot of people don't want to show up, you know, they don't know how to show up. But I would say what's really important is ask for help. Start doing that, practicing that muscle early of asking for help, ask getting other people involved in the journey is really important. And if they want to check me out, my website, you're gonna have it in the links, but it's kmadams.com. You can sign up for a free discovery call with me, 30 minutes, zoom or phone if you want to understand what's what is coaching comprised of, what might I expect? Is K a good fit? Uh, all the prices and everything are on my website. You can email me off of the website, but I think it's a helpful tool for people to go, oh, I I'm meeting with a family tomorrow who's um Denver based, meeting with the daughters, and both parents have dementia. Both parents have dementia and independent living. They're barely eking by. What do I do next? When do I do we have to move them? Do we just bring in people? It's getting really messy, convoluted, and taking a lot of time of the family. And so they're knowing that something's coming, but they don't know what to do next and what's the bridge, and those kinds of things. So anybody can just sign up for a free coaching call off my website and um and we can talk and see if you know this is something I can help you with or not. You can live anywhere in the world because I almost exclusively work by Zoom in my coaching business.

SPEAKER_01 26:36

Well, that's fantastic. Yeah, we will make sure and linked so people can can access you and again look at your resources. Well, Kay, it has been a pleasure. This has been so enlightening to me. And I'm just again so grateful for your expertise and all that you you do to help others doing during what is really a trying time. And and uh just thank you for all that you do.

SPEAKER_02 26:58

Thank you. Nice being here.

SPEAKER_01 27:00

I enjoyed having Kay on the show. What an informative discussion around dementia and caring for a senior loved one, and just knowing that there are resources out there and people like Kay that are available to help you should you or family member be facing this struggle. Make sure and check out the link in the show notes to Kay's website. Remember, she has that free consult call that you can take advantage of, and also the link to her book, Bedside Witness: Stories of Hope, Healing, and Humanity. In our next episode, what if lasting healing begins beneath the surface of the conscious mind? We will explore how hypnotherapy can help reduce anxiety, release limiting beliefs, manage pain, and create meaningful emotional change. To help us get into this topic, I'm bringing Craig Merriweather on the show. Craig is a clinical hypnotherapist helping people explore deep healing and subconscious transformation. For over 16 years, Craig has been helping people heal from early childhood trauma, helping cancer patients with pain control, veterans with post-traumatic stress disorder, students with test anxiety, entrepreneurs with confidence, athletes with peak performance, and anyone who may be dealing with overwhelm, fear, and anxiety. Make sure and join us for that show. And before I close out, I have a favor to ask of you. If you are enjoying the show, would you be so kind as to leave a quick review? A review helps people find the show. And my mission coming up on four years in October, if you can believe it, I'm so excited and so proud of the episodes that we've had and the wonderful guests that have been on the show. I I've been told through comments and emails that it's helped many people, and I want to make sure to be able to extend that release. And reviewing the show really helps us do that. So thank you for doing that either on Apple or Spotify. I appreciate it. Thank you again for your time, and until next time, get savvy.