June is Alzheimer's Awareness Month. A Sheridan-based organization is helping those with various forms of dementia, their families, and communities to better understand and cope with memory loss. Wyoming Public Radio’s Hugh Cook spoke with Heather Comstock of Dementia Friendly Wyoming about what they’re doing.
Editor’s note: This interview has been lightly edited for brevity and clarity.
Heather Comstock: Dementia Friendly Wyoming is a department of the Hub on Smith, and it actually has history that stretches all the way back to 2016. When a group of individuals wrote a grant, and we had a chance to run this grant for three yearsThe point of it was to look at building a dementia-capable community. So, by that, I mean, speaking with various points of the community, whether it's businesses, care partners, individuals living with dementia, really helping people get more comfortable with talking about a subject that has been historically stigmatized and less accessible in casual conversation.
Hugh Cook: Is your focus just there in Sheridan County?
Comstock: We reach further than that. I have done educational pieces [and] I do a lot of workshops within the community. I also do workshops on Zoom. So I can do them all over the United States, and in fact, I've even talked to people in other parts of the world. So, our reach goes as far as people desire. So, for instance, I have some things I've been doing in Buffalo, or in other counties. The benefit of technology, especially during COVID, we really did not have walls, and that was a real benefit considering the situation at that time. Our work actually, during COVID, moved from sitting with people, [and] we were able to move immediately to Zoom. We have a conversation group with people living with dementia, called the Harvest Group, and as soon as COVID hit and the restrictions started to take place, we just moved our weekly conversations online. And that was interesting because we were actually able to go from once a week to twice a week during much of that period, so that was an interesting pivot for us.
Cook: Could you describe a little bit about the differences between and the similarities between dementia and Alzheimer's in some of those popular characterizations, or mischaracterizations of those?
Comstock: This can be really confusing, especially if you're not really focused on this subject. Dementia is a term for a collection of symptoms, and so if we consider the analogy that's often given is an umbrella. So, dementia in itself is not a diagnosis, it is a term. When we find different parts of the brain that are not functioning to their best ability, then we're able to categorize and label that. So, Alzheimer's would be identifying a certain point of the brain --a certain kind of function ability. That's not the way it used to be.
Frontotemporal dementia would be another example of that, or Lewy body dementia. We're really looking at when we're doing an assessment, which is quite different from a diagnosis process, but we're really seeing, ‘Okay, is there something different about what's going on with this person?’ And then the next step is what specifically might be different about this person.
And so, it's not an exact analogy, but if you think about the word cancer, there's different types of cancer. So dementia, again, is a catch-all term, and then the various boxes within it sort of describe the point of the brain that might be having trouble.
Cook: There in Sheridan County, with the collaboration with the Hub on Smith, what are some of the programs or initiatives that are being undertaken locally for people who have dementia?
Comstock: We have a lot of great programming, and it's also going to be customized to what the family or the person needs. So, in terms of support, we do have within the Dementia Friendly Wyoming department, I have conversations with people who are just starting to wonder what's happening. So there's coaching and then a consultation if there's something really immediate that needs addressed. There's educational workshops. This month I did one on demystifying the signs and symptoms of dementia. Yesterday, I did one on preparing for doctor visits. So, workshops for care partners.
And also, people living with dementia come to these workshops in addition, and when they do, I'm really excited because then we have an expert in the room. And that facilitates a lot of interesting conversation. At the same time it destigmatizes old concepts of what a person living with a form of brain change is going through. A lot of people don't know that you can have a really good conversation with someone [with dementia] and that they can be quite self-reflective about their experience. And so, when we're able to mix groups of people, professionals, care partners, and people living with this condition, then we have the experience of all perspectives in the room.
One of our favorite programs is calledOpening Minds through Art. It's an evidence-based art program that was designed by Professor [Elizabeth] Lokon and she comes out of theScripps Gerontology program out of Miami [University of Ohio]. This program actually is a lot of fun. We train volunteers and we get together and you have a wonderful art experience where it's a fail-safe environment where everybody involved comes in, people living with a form of brain change become artists. And if they're quite progressed in their condition, then they'll have a partner and they do art together and the scene is pretty interesting in that all art supplies are delivered like it's a five-course meal, and you go through this experience. And at the end, everyone loves their art because it is designed specifically so that no matter what happens, it is beautiful in the end. And it also does this funny thing where it shows the best ability to function and it creates a conversation. The funny thing about the Opening Minds through Art program is it's not actually about the art. It's about conversation and connection.
Another program we work with isShare. This is an evidence-based program where you can have a series of conversations, five conversations with the person living with a form of brain change, and their primary care partner where we discussed communication, accessing local resources, and really looking at daily activities that we want to engage in separate and together so that we can maintain a sense of autonomy, decision making, and choice, and also paying attention to what are the future challenges and decisions [such as] to start thinking about whether that's creating a power of attorney, or looking at our will.
We have some work that we do with theCrisis Prevention Institute, and specifically a dementia-capable care program that enables us to talk openly with care partners and professionals about how we as part of the environment work really hard to not create a stressful situation that would need a de-escalation in the future.
Cook: One of the major tenets of Dementia Friendly Wyoming is not only raising awareness of dementia and Alzheimer's, but also trying to help people in the community there live, you could say with more dignity almost, and raising awareness of how to deal with people with dementia or Alzheimer's.
Comstock: All related forms of brain change and sometimes it's easier just to say brain change, because we don't know exactly what might be going on. And as time progresses, more of the brain is probably going to be affected, so it may not be just one type. It might be multiple types, which is really confusing. So, to your question about the mission, originally, it was to raise awareness. So, there's a point in the trajectory of all major pieces of work. There's awareness, there's education, and there's behavior change. And so, the original act of our program was to really say, ‘Let's start talking about this.’ And we're lucky in our community, we have a group called theCenter for [a] Vital Community, and they hosted a group of community conversations we were able to see as a community, [and to ask] is this a subject? Is this an area we really want to work on, and we're ready to? And it was obvious at that point that our community was ready to have this conversation. At that point, we were able to say, ‘Okay, let's get serious, let's write a grant.’
And we were awarded the grant, and so we're able to really move through levels of awareness, whether that's going to each business and working with businesses to help staff with a one or two-hour training to have some awareness. And they got a sticker that they're able to put in their window, which really indicates to families, care partners, and people living with dementia, that this is a safe place to go into if you're having a moment of confusion, or you need to sit down, or you're not sure how people react if you're not completely the way other people are acting in a shopping atmosphere. So, when you see this sticker in the window, you know this is a safe place to go in if you have a cognitive change. And I've actually had that reflected back to me, in my conversations with people living with dementia, they feel safer when they see these stickers in the windows of the buildings that they're walking around and visiting during the day downtown.
The thing about Dementia Friendly Wyoming is it has a lot of interest in helping people not just get aware of what's happening, but also get comfortable with it. So, when we think about this term dementia, it's a very scary term. And when we break it down, and we think about, ‘Well, what is a person experiencing when they're going through this?’ They're experiencing fluctuating awareness, they may or may not know full extent what their best ability to function is or what their deficits might be. They might be having fluctuating ability [or] some forms of this condition. You have a lot of energy one minute and the next minute, you're completely bottomed out, you need to just sit down and rest. So, when we start looking at this condition as more of a sensory processing problem, like maybe I'm having trouble with all of my senses, maybe the light and the sound, and just even my ability to feel balanced is starting to feel wonky. When we look at this condition through the lens of what is the lived experience, then we not only can adapt to the environments and adapt ourselves, we get less scared of what's happening.
