In this first recording, we’re diving into dementia with Christina Marsack Topolewski— talking to a dementia researcher and clinical social worker about what it really means to support someone with memory loss, both clinically and emotionally. If you like what you hear, be sure to follow, subscribe to our newsletter, and share — we’ve got so much more coming.
Dr. Marsack-Topolewski is one of our most popular speakers at Make An Impact, both with the team and with our customers. She’s an Associate Professor of Social Work at Eastern Michigan University and received her Bachelor of Science in Special Education from Wayne State University, a Master’s degree in Social Work from the University of Michigan, and a PhD in Social Work with a dual title in Gerontology from Wayne State University. With 20 years of experience supporting individuals with disabilities and their family caregivers, Dr. Marsack-Topolewski has worked as a professor, clinical therapist, teacher, consultant, and speaker, and has published over 80 research articles in scholarly journals and encyclopedias on individuals with disabilities, family caregiving, dementia, and aging. Click to listen or read the transcript below to hear Dr. Chrissy's thoughts on:
- The biggest misconceptions people have about dementia
- What’s the healthiest way for family members to communicate with someone in the early or middle stages of dementia?
- How caregivers can handle repeated questions or memory loss without causing shame or frustration
- Therapeutic fibbing
- Guiding families through the grief of watching someone change while still alive
- Helping caregivers or family members avoid burnout or resentment
- Trauma responses or old wounds that resurface as dementia progresses
- How families can set boundaries with a loved one who’s becoming difficult or aggressive?
- Compassionate ways to manage guilt when making decisions that the person wouldn’t have agreed with in the past?
- What keeps Dr. Chrissy hopeful in such a challenging field
Audio Transcript
[Intro] Welcome to Impact CE, your trusted partner in continuing education for health and well-being professionals. At Impact CE, we believe that informed clinicians create lasting change. Let's dive in.
Welcome to Impact CE, your trusted partner in continuing education for health and well-being professionals. At Impact CE, we believe that informed clinicians create lasting change.
Let's dive in.
Hey, everyone. Welcome to our very first audio recording. We're so glad that you're here with us. I'm Shannon Douglas, your host today, and these recordings are all about honest conversations around mental health with experts in their fields.
In this first recording, we're diving into dementia with doctor Christina Marsack-Topolewski, talking to a dementia researcher and clinical social worker about what it really means to support someone with memory loss, both clinically and emotionally.
If you like what you hear, be sure to follow, subscribe to our newsletter, and share because we have got a lot more coming up.
So Doctor Chrissy is one of our most popular speakers at Make an Impact both with the team and with our customers.
She is an associate professor of social work at Eastern Michigan University and received her bachelor's of science in special education from Wayne State University, her master's in social work from the University of Michigan, and PhD in social work with a dual title in Chrissy, I'm actually gonna ask you Gerontology. Gerontology from Wayne State University.
She's got over twenty years of experience supporting individuals with disabilities and their family caregivers and has worked as a professor, clinical therapist, teacher, consultant, and speaker, and has published over eighty research articles in scholarly journals and encyclopedias on individuals with disabilities, family caregiving, dementia, and aging.
So thanks for being here today, and I know that wasn't even your full credentials. So if you want to go ahead and speak any more to what brought you to this field and what you've done, Doctor Chrissy, go for it.
Yeah. Thank you so much, Shannon, and thanks for everybody for chiming in today and taking some time to listen. Yeah. I I love this work.
When I was probably gosh, I was in high school and I was very interested in disability and aging and I looked for many years on how I could bring kind of both of them together and I'm so excited for some of the work that I've done, not only as a researcher but also as a consultant as somebody who's worked with disabilities for many years. I was actually out in Croatia speaking at a conference and it was then that I first learned about dementia and some of these other ways that were pretty unique and at that point I started researching dementia as it relates to individuals with intellectual disabilities.
Prior to that point, when I was doing my masters and when I was doing my PhD, I was on an aging fellowship when I was at the University of Michigan and I did do as Shannon mentioned a dual title in gerontology. So I was always very very interested in dementia but I was really really interested in caregiving. And so when I learned more about some of the neurological propensity that really occurs in certain populations when we even think about individuals with intellectual disabilities, I became fascinated with the topic. And so from there I started working in different ways.
I did a few different national studies looking at some of these what we consider invisible caregiving populations.
I've been a part, I was appointed to the US national task group on intellectual disabilities and dementia practices. I've been a part of that for a number of years as a board member and have done different work in dementia for a number of years. But I became really interested in it because we see this societally. We see this in a number of different ways. I was really doing a lot of work in caregiving and dementia made a lot of sense given my background in juvenile onset conditions and given my background in some of these lifelong conditions. And so a lot of the work I do has really sat and, dovetail nicely with not only family caregiving, but with disability and any form of cognitive regression.
That's fantastic. It's so interesting to hear you speak about that and, your, you know, extensive background along with your cheery personalities. I think why we enjoy you so much and why you're such a popular speaker with us.
So let's go ahead and dive in, and I'd love to get started by just building an understanding of dementia generally. So can you speak a little bit to what are some misconceptions people might have explaining the difference between things like dementia and things that are commonly confused with, for example, Alzheimer's.
Yes. Yeah. Yeah. Absolutely. Well, there are a lot of misconceptions. One of the things that's really interesting is I was talking to a family and the family started to see some just subtle differences in in the way that person was starting to interact and to function in their daily life and these changes went on for a period of time.
I would say four or five plus years. And one of the misconceptions that I always just like to even remind myself of that I think is helpful just as people living in today's world just when we know we think about the the really elevated propensity of things like dementia and specific types and some types of dementia. It's just understanding a few things. First, we think about dementia, thinking about it as an overall term to think about very specific symptoms.
So we think about symptoms of dementia, we can think about memory. This is something that oftentimes come into comes into play. Things like language, things like problem solving and dementia is this overarching umbrella term. And then we have over two hundred types subtypes of dementia which is really really interesting.
So Alzheimer's happens to be the most common cause of dementia and so when we think about sixty to eighty percent roughly of dementia is gonna be due to Alzheimer's disease.
And so that's why we see so much on Alzheimer's and so forth, but what's really really interesting to me is there are other types of dementia. So we think about two hundred plus subtypes, that's so many and I often times like to think about these four common subtypes just to make things really easy. Most commonly, we're gonna see Alzheimer's and then behind that, dementia such as vascular dementia, Lewy body dementia and frontotemporal dementia. And so that's really helpful for me to even think about because as people come and ask all sorts of questions either personally or professionally, the symptomatology is gonna look differently.
The other thing when we think about misconceptions is that oftentimes people think that loss of cognition is part of normal aging. And then so there are some things to kind of think about on a more granular level there. So a major misconception is that this is part of a natural process or a natural part of aging, but what we do know is sure, there are normative and non normative aspects of aging. And so it sometimes can be possible for any of us, right, to forget things.
But to a more elevated sense, when we think about dementia, in reality, it is a disease. It is not part of typical neurological functioning or development of the brain when we start to think about the aging trajectory from a cognitive standpoint.
The other thing that's really for me at least interesting, but I think interesting as we think about either our work as clinical providers or just the work that we do in our everyday life. In our informal social support networks with our family, our friends, our neighbors, our people that people that might call and ask for resources and supports just in kind of these inner inner inner circles of our life is that memory loss is not always dementia. And that's really really important to think about and so there can be some other things that come into mind. Some of the experts that I've worked with is part of our US national task group and intellectual developmental disabilities and I would say a lot of their expertise lends not only specifically to that specific population, but even more generally to some of these other nonspecific individuals who do acquire dementia or who are at risk for dementia.
It it'll say things like, hey, are we ruling out all of these other things? Some things that are really really important to rule out are things like hearing loss. Right? If I can't hear you, Shannon, you might get a response from me and be like, wait.
What? Wait. It's like totally incongruent. It sounds like something's going on. Is Chrissy okay? Right?
So some of these other sensory realities and we know that with aging, oftentimes, there's sensory implications and sensory changes both normative and non normative such as hearing loss, vision loss, and and declines in those regards that can come into play. Other things that we would wanna look at are declines and things like park, you know, or sorry we don't wanna rule out things like Parkinson's and other health issues. Certainly from a nutritional standpoint, is somebody getting the vitamin dietary, you know, intake that's necessary to able to thrive and function even from a memory standpoint, but as well as some of these other things.
With dementia, sometimes we see these physical characteristics that will begin to come into play at some point in the trajectory and in the progression of that dementia process. And so if somebody's not getting dietary intake, we also might see some of these physical things. So it's really important to rule some of these things out.
That's fascinating. Thank you for such a a well thought explanation.
I you know, as you know, because you're a part of it, we have our aging summit coming up here in the end of September. And one thing that we're focusing a lot on and spoke with you about is, you know, the importance of diet and nutrition. So it's really interesting to hear you bring that up and how that ties into this because it does feel like something that is frequently overlooked.
Yeah. No. It's really interesting. We think about, like, a a lot of the work I do at the university as an associate professor of social work is we work with other professions.
Right? Occupational therapy, dietetics, speech therapy, and it's fascinating when we think about the power that we have as clinical providers to really do more, to really leverage. We're working in a really robust comprehensive interprofessional capacity. And so when we can work with other health care providers, other behavioral health providers, we can just do more. So that's oftentimes some of the work that I do is we work on how do we really train our students efficaciously to consider these these things when we're thinking about normative and non normative aging.
Yeah. Fascinating. And a big focus on the physical aspects like you're saying sensory, it sounds like as well. Yeah.
No. It's fascinating when you think about like how we could all function and perform different under certain conditions, and we're looking at really getting acute diagnosis for things like dementia. Is it dementia or is it something else going on?
Yeah. Fascinating.
Let's dive into a little bit about ways to support loved ones with dementia because this is a big topic, and I know you've got such a background in caregiving as well.
Communication being something that a lot of people struggle with knowing how to go about as they have someone moving into, the earlier middle stages of dementia.
How do you suggest, caregivers handle things like repeated questions, memory loss, in ways that don't cause shame or frustration.
Yeah.
No. That's such a great question. And it is it's hard for both the caregiver and that care recipient.
So thanks for that. Such a great question. I think first and foremost for that caregiver to really have the right information.
We can respond more empathically, more kindly, more calmly when we're better grounded. There's a lot of work being done as we start to look across the country, a different caregiver initiative. So I would say anything that's gonna provide informational support to that caregiver is huge. The second piece is as we work with caregivers in whatever ways in terms of informational support or instrumental support, Thinking about ways to support our caregivers to understand different strategies specifically. So, you know, first and foremost, how can they acknowledge and validate empathically?
Mhmm. How can they respond calmly?
And those responses be reassuring and clear, but also brief. There is a lot that we need to think about as we start to think about neurological decline and the importance of brevity and clarity in those responses.
The other thing is for for individuals who are struggling to recall something, they sometimes have to be redirected.
And and there is an art to redirecting and so our family caregivers and there are many many throughout the country, The bulk of caregiving in the United States and I'm just gonna make a make a little nod to this here, Shannon, because it's such a just such a point of salience. I think when we think about this topic, the bulk of caregiving in this country is really done by our family caregivers, our unpaid formal networks. But even as we start to think about our paid networks, oftentimes those individuals who are doing the direct work, they oftentimes have the least amount of support and service and education around how do we do this and how do we do this well. And so they can be really at risk for being frustrated. So I think, you know, having the right information for people and then for our caregivers, having a way that they have kind of the tools and verbiage for really exercising with calm, reassuring, empathic responses, but those that are brief.
Yeah. Can you speak to the importance of brevity there a little bit? Like, what is the correlation and the need?
Yeah. I think sometimes, I mean, brevity is great for all of us in some regards. Right? But especially for individuals who who do have some neurological decline, there is elevation of frustration. There are times when language is difficult for all different ways when we start to think about expressive and receptive language. The other thing when we think about brevity that there are ways to really support a loved one, even ourselves as as care caregivers. If that's if that's part of you know your journey today is thinking about how to even bring in things like visual cues.
So helping them either have a visible calendar or a whiteboard or I've seen a number of different visuals done in a number of different really unique ways that align with somebody's abilities and diminish things like frustration. There are times when that oral language piece can become really really frustrating for all sorts of people with with various types of disabilities in the use of visual cues and visual supports and visual routines can be helpful. The other thing while I'm on it that I'm just gonna kinda throw in is the use of structures and routines is really important for most of us. When we think about going about our day daily life, having a sense of what's gonna happen on any day, avoiding frustration.
And so with somebody with dementia, even for the support of that caregiver, establishing a predictable routine can really help with diminishing that frustration that you mentioned, reducing anxiety, reducing confusion, but also feeds back and ties in really nicely with what you're asking when we start to think about the verbal language. But it really does it is associated with kind of the minimization of repetitive questioning.
Fascinating. You know, it, I don't have the same professional background as you at all.
So but it makes my brain jump to things like, you know, ADD and brevity there and just just just start Yeah.
No. It's fascinating. You think about the stressors on the brain. Right? If something feels disorganized or something feels chaotic, it can certainly elevate even things like, anxiety anxiety and other signs of psychological distress but also behavioral symptomatology which we know in some cases can be at play when there is where in the when there is dementia.
Fascinating. Let's get a little bit into do you have advice for helping to guide families through the grief of watching someone change while still alive and with us?
Yeah. No. It it can be really really hard to pretty drastic extents. There certainly is, I I would say a variance and how people sense and feel this. Some feel at least feel more prepared. For some, dementia seems to have crept up and crept up quickly and it feels sudden.
When we think about the loss, I think about acknowledging and validating the feelings, but the totality of feelings. Each of those different individual feelings because there are so many different types of loss that come into play And the losses are going to have different meaning to each person. So certainly if families can work with perhaps outside providers or perhaps for some, they just need that informational support to understand.
For many families, a large piece of this is the challenges that they assume because of the loss in previous functional aptitudes and abilities. And so there are losses there or where somebody's assuming a lot of caregiving duties that they perhaps don't even feel equipped to be doing or perhaps feel like they have the time to be doing this. Some of the work I publish on looks at what we would call compound caregivers. So somebody who's caregiving for somebody perhaps with, you know, a lifelong condition who then assumes care for somebody else.
An aging spouse, an aging parent. And we can start to think what that might look like in the context of of dementia and when we think about how we guide families through watching not only their loved one grieve, but also themselves grieve. So for the the loved one with dementia, you know, acknowledging and validating those feelings I think is huge. The other piece is offering practical support and strategies.
We wanna ensure that to the extent possible that individuals able to do what they can do and and have opportunities to do things that they like to do.
I've seen a lot of benefit and there's a lot of empirical research to support even utilizing things like music. Music can bring our minds to all different places but interestingly, when we look at the brain, the parts of the aspects of the brain that are impacted by music are very different than those when we think about language. And so there are ways to support grieving in these other ways when we just start to think about the normative day to day routines and activities like using music.
I think it can really help and it can really serve as a way to, maybe bring somebody out of some of those grief stages.
The other thing I mentioned, Shannon, is just encouraging reminiscing. So there are some things when we look at not only what we've seen in everyday practice, but also that are really well grounded in the literature looking at the importance of encouraging reminiscing.
So some of the work I did as a graduate student, we would do life reviews where people could share their story and they could reminisce and they could share positive memories and they could sure share, you know, short or long anecdotal stories about their life. And this was really helpful when we start to think about preservation of their own identity.
Their identity was what perhaps they could do on their best day.
And so through this process of life reviews and encouraging reminiscing, it really provides comfort for a lot of people. It provides, you know, see yourself on your best day, those kind of things. And so I just wanted to mention that as well.
That's lovely. You know, it brings up like a personal memory for me actually. I had a family member, get dementia some years back, and one of the things that I found that was really wonderful for everybody was getting one of those, just speaking to your visual cues, getting one of those digital photo frames that just cycled through, you know, two hundred photos.
Yes. Yes.
It was lovely.
Yeah.
At any point in time, it was like you could look over there and there was just and and it was such a nice, reminder to just put somebody back, you know, where they had been before.
Yes. Oh, that's beautiful.
Yeah.
It makes me think of that.
It's really beautiful. You know, I have a great colleague and friend who will also be speaking at your aging summit, Doctor Jillian Graves. But when we we we co we co author and work on a number of pieces together and have for a number of years. But one of the things that she's always said just in the context of what we do as clinical providers is sometimes we see people on their worst days.
And when we can reimagine and help bring them back to maybe a happier moment that this moment that might feel hard and heavy is not forever and we can help with maybe even these small reminders or these these moments of joy that we see in these pictures, you know, these pictures that you talk about flashing, Shannon. I think that's really, really incredible. I even think about some of the work when we think about patients or somebody who might be in a dementia unit of I think probably all of us could feel what it's like to be a patient. Maybe being in a hospital with that really kind of horrific gown hoping that this is not how we look every day and this is how we might be in that moment because we're the patient but it's not that everyday life and so if we can bring our loved ones, our clients, our, you know, our neighbors to these places that really offer some reminiscence and some joy, I think there's a lot there.
That's that's lovely and and very, hopeful and uplifting sounding.
I'd love to to hear your thoughts on certain kinds of therapy or emotional support that works for someone with, dementia, especially in perhaps the earlier stages.
Another thing that came up actually for me while researching this was a term called therapeutic fibbing, and I'm curious if you could speak to that.
Sure. Sure. I'll first speak to if you'd like, I can kinda talk to some of the emotional support and therapy. Certainly, I wanna just make this plug.
We can do a lot for our family caregivers, but we can also do a lot for our direct service providers and professionals just in terms of understanding dementia because those are the people that are oftentimes really directly there for that individual with dementia. So even beyond specific dementia, our our dementia patients or individuals with dementia having their own therapy just supporting our family caregivers and support supporting our direct providers is really, really huge. In terms of kinds of therapy or emotional support that can work with somebody with dementia, especially in those earlier stages, things like talk therapy, cognitive stimulation therapy, or even that reminiscence work that I just briefly mentioned earlier.
The other thing that's really important to think about are these other things. So when we think about anything we can do to promote our brains in terms of its movement, whether it be card games or chess, if that was something that somebody liked previously, or this light exercise. And some part times part of exercise is that that social piece to it. There's a number of different things that perhaps individuals, you know, as long as it was in line with what they could do physically and medically, there is light exercise.
And so they have a number of groups for seniors to even engage in, different things that would get them out of the community, get them with other people, perhaps, and kind of an intergenerational way that they're around other people intergenerationally, but even with other seniors as well in terms of kind of that light exercise.
But other therapies, you know, when we think about talk therapy, things like counseling or cognitive behavioral therapy, CBT, these can start to address, especially for those with earlier signs of dementia, some of the anxiety and depression.
Sometimes there is an informational need. We wanna, you know, certainly go about that in a really efficacious way. With the reminiscence work that I talked about earlier is like allowing somebody the ability and the space to recall and discuss some of those happy, joyous previous memories. For some, it might not always be happy and joyous, but something they wanna walk through.
I recently was talking to an individual, who shared a story about one of his clients, and it was very interesting because part of that was was really unraveling. How do we go about when somebody with dementia has these moments and these things that they're holding out that are not happy? And we can do this in a clinical way, sometimes really effectively as well. In terms of other therapies, Shannon, even looking at things like music therapy, art therapy, I do some intergenerational work, and I've followed some of the intergenerational programming that's going to affect individuals who are, you know, are older adults with younger populations.
And I'm really, really fascinated about this because I think we can get a lot of both health, physical health, but also mental health outcomes and rewards and then different rewards kind of across generations. But some of the work that I'm following is how we can use things like art and music therapy even in generational capacities.
So when we think about things like therapeutic fibbing, this could be very, very interesting. What we would think about these are really what we would think about as little white lies.
And sometimes we think about how caregivers might do this to reduce distress but also to really improve how somebody's doing from a health and overall well-being standpoint.
We know that this can be really hard. So sometimes therapeutic fibbing can be used when we think about, you know, somebody is really really upset or they might be, really hyper focusing or perseverating on something and an individual is repeatedly asking about someone. So I'm gonna give an example of when an individual with dementia continues to ask about a deceased loved one. And there are ways that caregivers can use therapeutic fibbing to perhaps redirect, perhaps to calm someone down, perhaps to avoid some of these increasingly elevated, stances of emotional distress.
So instead of confronting the belief, they're kind of sideswiping it a little bit. So, you know, those therapeutic fibbings are really those little white lies, but they can be done in a way to reduce distress. They can also be done in ways to to prevent other harmful things that might be happening in terms of perhaps behavioral harms or, and other ways we could think about it as ways to really support that caregiver with their loved one with dementia in terms of strengthening that bond.
Interesting.
Thanks for clarifying that. It it brings me to another question, which is, are there trauma responses or old wounds that tend to resurface as dementia progresses?
Yes. This can be the case, and it's really can be really hard and really painful, I think, for a lot of people. Certainly, for individuals with dementia and as that dementia, you know, may or may not progress and intensify, unresolved wounds can resurface. They can be intensified as that dementia progresses.
This is not always the case. So that's a hopeful, maybe silver lining there. But what we do know is that neurologically changes happen in a brain that is perhaps struggling with things like memory or things like overall functioning when we look at some of these cognitive aspects and cognitive, coinciding elements.
It can be really overwhelming when somebody is experiencing kind of these past traumas. And a trauma could even be reliving, the death of somebody.
That is traumatic.
Right? Because that was traumatic when it happened perhaps for that person but to relive it. Right? It could be really, really hard. And so this can lead to all sorts of different things. So we think about from perhaps more of a psychological standpoint, the heightened anxiety, but then behaviorally, right, we might see changes. For some people, they might even experience things like flashbacks.
That kind of brings me to another question, which is as we move into some of these more challenging, realities that people have to navigate, how can families set boundaries with a loved one who's becoming difficult or aggressive, and what are some compassionate ways to manage guilt when making these hard decisions?
Yeah. So I I think there's a few considerations. One of the things that I see in my work and I predominantly publish on topics of family caregiving is that oftentimes we as caregivers will assume so much. And when I say we as caregivers, I'm talking about our our caregivers, our family caregivers across the United States who are doing a tremendous amount as they assume and they assume and they assume and they assume and it becomes too much. And so the frustration gets high perhaps for a lot of people.
And in the the context of that family, right, maybe somebody's caring for, their mother in some ways and it doesn't necessarily even mean that that mother has to be living in their own home to be a family caregiver. There's all sorts of different financial instrumental support that might be offered in different ways. But when that caregiving is occurring and the demands continue to escalate or they change, right? Somebody might be in and out because of a urinary tract infection of a hospital And then they might be in a post acute, you know, sub acute rehab facility, perhaps somebody had a fall.
And we think about as these caregiving needs and demands change, I think it's really helpful when possible is to kinda get ahead of things. We know that as a country here in the United States, people are oftentimes living in, pretty far geographically from their immediate families. And so this can also offer a huge kind of barrier if you will to, perhaps some of the more judicious delegation of caregiving duties within kind of a family unit. And so I would say first and foremost, you know, understanding dementia, understanding what it looks like, getting some support for the caregiver, but then figuring out how do we utilize without burning out fam or formal or paid and our informal or unpaid social support networks.
And I do a lot of work in this space because I think both are really really important. We need both oftentimes, you know, give depending on the types of things. And then from there, families can set boundaries and perhaps an easier way where they're not feeling feeling perhaps guilty. They're not feeling as frustrated.
And so families can set boundaries with that loved one with dementia through some different things. Certainly clear communication, offering calm choices, redirecting when necessary, engaging in those healthy communicative patterns. Perhaps we go back to those visual visual strategies that can be used to help in some ways.
Certainly that communication is important, but also validating their feelings. The other thing that they can do is respect preferences that their loved one has within the context of safety.
Okay. We have to really be mindful, right, of safety. Yep. And so that's huge. And then I think some other things is, you know, sometimes there are boundaries that it's a simple no and there's no explanation.
Sometimes people do need to seek support. There does become a point when perhaps behaviorally the family is going to need more support. There are times like this. And then finally, the other thing I'll say is just, you know, one, that family member getting self care and support but also understanding kind of the triggers of a loved one with dementia and some of those patterns.
Certain times of the day might be more challenging. And so understanding that and really having the supports and mechanisms in place at that time of the day so that that caregiver, right, isn't totally taxed and can have the boundaries they need.
Yeah. Yeah. Really working together.
Okay. So a big question, but one that comes up a lot that I'd love to hear your thoughts on is, what do you wish, more families knew about navigating end of life choices with dignity in dementia cases?
Yes.
This is such a great question. I have, as you know, Shannon, I've done a talk on advanced care planning for your company. It was I think with the first talk that I ever did for Make an Impact and I was so excited about it because I think that there's relevance when we think about end of life and we think about advance care planning for any population. So here's my plug.
What we know is that oftentimes certain demographics have a higher probability to have advanced care planning in place. And so when we think about what that means and we think about like any end of life wishes, whether that be, having the appropriate medical information in place, having a DNR if that's something somebody wants, having, you know, a durable power of attorney, you know, those kind of things in place, having your medical pieces in place, this is so important. But when we think about advance care planning, I think we could use this in a way to have those conversations sometimes earlier.
And I'm not saying, hey, we realize that somebody now has dementia. Quick, let's get the advance care planning. I'm saying, let's start way earlier. And so what we know that our numbers of advanced care planning throughout the country, the percentage of individuals in adulthood who have this are so low.
And so we can think about this, we can think about the different opportunities that will come up for all of us to have our normative and perhaps non normative health changes as we age. You know, I just wanna make that plug for advanced care planning and we could use this in a way really to preserve dignity but to preserve choice. Well we have robust advanced care planning in place. What we know is it takes all sorts of stressors not only on the individual or the patient, but off those family caregivers and the family unit itself because there's a plan and there's clarity, but also medically.
Our medical providers, our doctors, our nurses, they know what to do. And so there's a lot of research on this. I won't go on and on and on forever about this because I'm really really passionate about this, but we've my colleagues and I have published on advanced care planning because we feel that it is so important as we start to think about those final days. And we think about advanced care planning, certainly just offering it ahead of time, having open honest communication and understanding.
We can use this in a way really that those final days, whatever those days look like can be really offered and and lived out with more dignity, more autonomy, and more choice.
That is lovely.
Thank you for providing such a real and, tangible thing that people can can do to bring some dignity and, like you said, preserve choice to something in a very difficult time.
This has been great, and I would love to wrap up our talk today, that you've just, like, flooded with your expertise with some maybe slightly more personal questions about what keeps you hopeful or grounded in such a challenging field and if there's anything that you wanted to share there.
I I would say when we think about some of the advances that are happening in dementia and Alzheimer's research, it's incredible.
The other thing I would say while we can't fast forward the button on life and just suddenly have a cure for a disease that impacts billions here in the United States. One of the things that I find is really hopeful is the power of what we can do as individuals in our society as we think about how do we support our neighbors, how do we support our friends, how do we support our clients, how do we support those in our community. When I think about some of the topics I study and research and some of the clients that I've worked with, these are things that impact so many. And when I think about dementia in particular, I think about how we can start to think about things differently and how we can start to better support and better offer information because information can sometimes be a huge key in this.
One of the things that I find is really hopeful is and and it's continued, for me to be really reinforced and really elevated as something and kind of at the forefront of my mind is the power that we have in planning.
Sure. With illness, sometimes it creeps up and it's so fast that we can't even right? We can't pedal fast enough to even just stay afloat. But sometimes with dementia and even some of these really extraneous caregiving situations is we can have and we can support people along the journey not only informationally but in that process of planning.
And so I always say plan for planning. And if we can do this, even when I think about advanced care planning, if we can do this, we are giving somebody the tools. I'm a big fan of family support navigators and those models oftentimes allow one family member through a formalized program to support another family member and that family member has been through that journey. And I see this sometimes in some of the support groups that I follow.
I have institutional review board approval to follow a very specific group of what I would consider invisible caregivers.
Caregivers of individuals who are supporting loved ones oftentimes with Down syndrome and dementia comorbid.
And it's a really unique facet of dementia caregiving.
And one of the things that I find is I find the hope The hope that these other people provide through information, through kind words, through the words of, hey, I've done that. I've been there. I'm here for you. I'm praying for you.
I'm thinking about you. And so I would just say, like, hold on to hope but in a way of in very concrete formalized ways, planning for planning, offering resources that are efficacious, offering steps to really support caregivers in the journey of planning. They oftentimes need somebody to take them by the hand metaphorically and be with them for those pieces. The other thing that I'll say that's hopeful is if there's the ability to reappraise something.
One of the things that I felt was so beautiful and I heard this from a cultural anthropologist in Antarctica.
And she came to our class. I was doing my PhD, and she said some of the most beautiful things. She said, for part of my PhD, I was tasked with living and immersing myself in Antarctica. Wow.
And she lived there. And she said, what happened when people were diagnosed with dementia? We're like, oh, they grieve, they were sad, they went into a depression, and she goes, no.
The community rallied around them. Antarctica is set up very different differently, you know, structurally. It's very community oriented. And so I go back to that.
When there was a need, people everyone kinda bent in and lent what they could. And I think about a spot lock model. And I really see the need, you know, for continued, you know, the ability for our communities to continue to leverage themselves around dementia that we're actually supporting some of these informal and formal caregiving kind of avenues to really support caregiving because the lift in the burden won't feel so much. And so I go back to community, I go back to planning for planning, and I go back to that hope that there are people who are doing this work across the country and finding those people who understand kind of the day and the life of not only patients with dementia and individuals living with dementia, but also those loved ones who are supporting and are paid supports.
Well, that is a beautiful, segue to just let me say thank you for being one of them and for being such a advocate, and sharing everything, with the community and with us and with, your research and what you teach. That is a beautiful, beautiful note to wrap up on, and we adore your passion and, commitment and working with you.
And Thank you, Shannon.
Thank you. Thank you. Yeah. Truly my honor. I love the work, and I'm I'm so happy to be part of your podcast today.
Thank you so much for being here. It was so much fun, and, we are looking forward to more and more working with you.
So Thanks, Shannon.
You take care. Thank you. You too. Thank you.
[Outro] Thank you for joining us at Impact CE. We hope this session has enriched your practice and inspired new perspectives. To explore more courses, access your CE certificates, or stay informed about upcoming events, visit us at www.impactce.com. Keep learning. Keep growing. Keep making an impact.
