Good News York by Growth Mode Content - GNY EP.170 | feat. Sheila Ohstrom from Living with Dementia CNY

Episode Date: April 28, 2026

Sheila on Living With Dementia CNY: Caregiver Support, Training, and Upcoming Events Host Noah Chrysler interviews Sheila, president and co-founder of Living With Dementia CNY, which serves caregivers across seven counties by providing dementia training, a virtual support group every Tuesday, caregiver summits with separate programming for caregivers and loved ones with dementia, and help paying for respite care. Sheila describes common caregiver experiences of isolation, depression, unspoken anger, and the need for judgment-free spaces, noting caregivers often neglect their own health. She shares her background: her mother died of vascular dementia, and she later ran a dementia-focused home care company for 15 years before selling it to focus on the nonprofit. They connect families to resources like Offices of the Aging and memory care cafes, and emphasize accurate dementia diagnosis and prevention through healthier living, exercise, and stress reduction. Upcoming items include an Oct. 29 annual conference with Adria Thompson, June 4 Heritage Hill fundraiser, a September golf tournament, and summits May 5 (Onondaga) and May 19 (Madison/Oneida). 00:00 Welcome and Introductions 00:23 Mission and Services 01:50 Caregiver Emotions 04:24 Summits and Respite 06:30 Sheila’s Personal Journey 09:08 Finding Resources Fast 09:59 Memory Care Cafes 11:51 Dementia Myths and Diagnosis 13:14 Prevention and Self Care 15:59 How Friends Can Help 16:57 Events and Fundraisers 19:17 Closing and Sponsor

Ladies and gentlemen, welcome to Good News York. My name is Noah Chrysler. Today I am with Sheila. Sheila, how are you doing? I'm good. Thanks for having me. Absolutely. Cool.

Sheila, what is the organization that you're with? It's living with dementia CNY. And we help people within seven counties. Wow. I heard that you were the president and co-founder. Is that correct? Correct. Beautiful.

Tell me about the organization. Tell me about living with dementia CNY. So living with dementia CNY is an organization that will help caregivers who are are taking care of people with dementia, all types of dementia. And our mission is to provide training so that people, when they are working with people with dementia, so that they have better tips and tricks of what works and what doesn't.

We also provide support. So we have a virtual support group that happens every Tuesday. And people can just come and virtually and talk or not talk or ask questions, because for some it's more listening thing than a talking thing. That's how they get their kind of their support. Their support.

And then we also provide caregiver summits in each of the seven counties that we support. And at those caregiver summits, we bring together the caregivers and then also their loved ones that they're taking care of with dementia. And we put them in two separate rooms. And we do engagement in things for the people with dementia. and then the caregivers, we do different workshops depending on what we're talking about in that county at that time. Oh, interesting.

And lastly, we help pay for respite care as we grow and are funded for different territories. Wonderful. Very cool. That sounds fascinating. When people come to these support groups specifically, when they have family members affected with dementia, what are some of the common stories that you hear? What are some of the feelings that these people? have when they show up? The biggest thing is that they don't feel heard a lot of times is caregivers

it's very isolating and it's very it's depressing and there's a lot of anger that they don't voice because they think this is my job this is my parent and I have to do this. It's expected that I am going to take care of this parent or this loved one and I'm not going to complain about it and especially for spouses who are taking care of their loved one, it's very hard for them because they never signed up to be a caregiver, ever. And now all of a sudden they're dumped into this role, and they feel very angry, and they're giving up every part of themselves in order to do that.

So a lot of the caregiving support group has conversations about frustrations in a safe place so that they don't feel. judged because you can't go around telling people, yeah, I'm taking it for my dad and it's awful. I'm taking care of him and I can't stand him. You can't say that out loud and not have a lot of judgment. So it gives people a safe space to talk about what they're struggling with without the judgment. Yeah. I think that's very powerful. I think, I don't know, me personally, if somebody told me, hey, one of my close family members has dementia and I have to take care of them and and I hate it.

I think that that to me would be like completely reasonable. But I do, I do think that, I don't know, I could definitely see people struggling to vocalize that, right? Around our friends and our networks, we try to positive. Everything's fine.

Yeah, everything's great. I'm great. Everything is fine. Yeah. It's not the worst couple years of my life at all. No, everything is wonderful and everything's great. Be polite and say the right things.

So I bet that that is a huge relief and very needed for these people. Very much. so. Yeah. Do you see people change over time? Is there a part of this group? Does that support change their lives in certain ways? You hope that it does. But, you know, a virtual support group can only do so much. The one thing that's nice is that friendships form. Some people ended up, you know, getting to know each other outside of the support group and things of that nature. So those relationships do develop. And that's something we also try to do with our summits. Wonderful. Yeah. So how often are the summer?

So we just started our series of summits. So we have one scheduled in every county. We've done a couple of them so far. And especially our summit, the first one we did was in Herkimer County. Herkimer County, we had about 40 people attend caregivers and their loved ones. And it was amazing to see how much people connected with each other. People left with phone numbers of a new friend that they thought they could actually. talked to who's also going through the same thing as them and walked away with some skills to try and get a little piece of them back in their life because they end up not taking care of themselves and it is very common for caregivers especially for those helping people with dementia that they end up not living as long as the person with dementia because they stop taking care of themselves and the stress and the lack of their normal medical appointments just goes to the wayside. Wow.

Yeah, I mean, that doesn't surprise me at all. You know, I think that caring for people with that much care required, right? It's a very high bill of, you know, hours required and focus required and attention required. And I think it's that thing about like put the face mask on yourself, right, before. They have no downtime. Yeah. They really don't. Yeah.

And that is the hardest part. And a lot of them don't get a lot of sleep. So it just compounds it. Yeah. You know how cranky you get when you don't sleep. Right. And these people are generally, you know, older who are taking care of their loved ones. So it has even more of an effect on them.

For sure. And their families. Yeah. Well, it's wonderful that you're, you know, providing them a way to connect with other people, right? Not just education, but like that connection in the community with other people who are experiencing the same things. I bet that's a very powerful force. Yeah. The peer-to-peer support, I think, happens organically, especially when we have our summits,

because they're all there and they're all facing similar problems. So that's been wonderful to see. Yeah. So Sheila, tell me about your personal story. You mentioned that you kind of have a background in this world. So I want to hear more about that. Yeah. So my personal background, there's a couple of things.

So my mom passed away from vascular dementia when I was in my 20s. And she had some other things wrong too, but vascular dementia was a big part of it. And how this all happened is I didn't know anything when I was in my 20s. You think you know things. But honestly, you really don't. And it was just a really hard time and very difficult. And when I turned 40, I wanted to do something better with my life. So I started a home care company that specialized in helping people with dementia.

And I ran that for 15 years. and then I sold it a year and a half ago so I could really focus on this nonprofit, the living with dementia C&Y, so that we can help more people. It's just my passion. And I know how much of an impact we can make on caregivers who are trying their best to deal with their loved ones with dementia

and especially those with behaviors. Absolutely. Absolutely. You mentioned that as you were growing your business, you said that at its peak you had 16, employees. Yes. When I sold it, we had 60 employees. But when we started, it was just me and one lady that I was helping. Wow. How many years did you run that for? 15. Wow. So 15 years running a home care company, right? Working with home care professionals

and training them, I would assume, and probably seeing them struggle from time to time with people who might have had dementia, right? And that kind of informed to the work that you're embarking on now. Absolutely. Our partnerships that we have, over the place with different offices like the offices of the aging, different facilities where people have memory care units, other home care companies that help people, whether they need medical assistance or if they just need companion level assistance. You know, all the different companies that I used to work with, now it really folds nicely into the nonprofit and it's in more counties. And that is a wonderful thing.

because we're trying to help caregivers. So people are very willing to help us find those caregivers in those different counties. Wonderful. Yes. Wonderful. People are willing to help you find. So basically the connections that you've had, they're helping you find caregivers so that you connect more families to their proper care.

Yes. In resources. Because generally people who are caring for loved ones with dementia are in crisis. Because you don't plan ahead for dementia. It kind of sneaks up on you. and then you're in crisis. And it's very hard to find things when you are in crisis because you don't have the time. Right.

So we try to help them find memory care cafes that are free help for them and also get them a support network. We try to help find different programs that might be a good fit for them or an adult daycare center that would give them some respite. So we really try to help them connect with all those places and the Office of the Aging, no matter what county you live, is a great first place to start because there's so many different programs and they vary significantly across the different counties. Can you tell me what is a, you said the term, a memory care cafe,

what is that? So a memory care cafe, and we have, we have two very strong memory care cafes right here in Onondaga County. We have one in Baldwin'sville that Reflections puts on. And then we have the Syracuse Memory Cafe, which is at the church across from MPH and DeWitt. That one has been existence for a long time, and the Bowensville one is only a little over a year old. And at a memory cafe, the person with dementia comes with their caregiver, whether that's a spouse or a friend or a paid caregiver. And it's a couple of hours of getting together with like-minded people who are going

through the same thing and they usually do an activity. There's always some singing because music is a real thing for anyone living with dementia. And then they have a light snack. It's kind of like a mini lunch. And just time of connection and being able to spend time with other people and enjoy that time. Wonderful. Yeah, I've heard that too, right? Music therapy, it activates different parts of the brain.

It helps people remember, you know, It brings them back to a different time. And yeah, that's wonderful. And with dementia, you do not lose rhythm. And rhythm is on the right side of the brain. And that's part of the brain that where rhythm is, you don't lose that. It's one of the last things you lose no matter what you die from. So rhythm is poetry, music, prayer.

All those types of things are the things that bring comfort. And you keep those. even when you can't communicate anymore, you still have those. Wow. That's fascinating. That's very, very interesting. So yeah, so let's also, I'm sure that you are a dementia expert and know a lot about it. What are things that people get wrong?

What are things that might be helpful for people to know who don't know a lot about dementia? What would be the most helpful things for them to understand? I think the most helpful thing for people who are living with dementia is get an accurate diagnosis. A lot of people have forgetfulness or, you know, they used to call it signality, and they don't actually get an accurate diagnosis. So when you have cancer, you find out what kind of cancer. When you have dementia, most people don't find out what kind. And that matters for preventative measures, what you can do.

There is a lot of good things going on in the real. research world right now for dementia. So I think we'll see more and more people actually find out what type of dementia they have. Because dementia is an umbrella term that describes a set of symptoms. And Alzheimer's is only one of those types of dementia. The most common are Alzheimer's, Lewy body, frontal temporal, and then vascular. Those are the ones that you hear most about. But there's over 120 types of dementia. Wow. Really? Really? Oh my good. I did not know there was that many. That's fascinating. If I am a adult in my, you know, let's say I'm like middle age, maybe late middle age, right? And I am nervous about potentially contracting dementia and having memory problems

and that sort of thing. What preventative things can I do to delay that or make that not happen? I know in some of your other podcasts that you've talked to other people about the brain-gut connection. That is a real thing. What we put into our bodies definitely affects our brain. chemicals and things that are in things that we put on our bodies, they definitely affect that. The biggest thing for any disease for prevention is less sugar, less salt, less fat, eating healthy, or the most healthy that we can in the environment we're in. And exercise, it's a big part of keeping your brain healthy.

Got it. So diet and exercise, living a healthy lifestyle, probably reduce stress too. Is that a thing? Stress is definitely becoming more of an issue as the research comes out. If you can reduce your stress, that's really important. And the most important thing I can say to caregivers is you have to find a way to carve out a piece of time for yourself. And I know how hard that is, but it has to be done so you can live a full life and stay healthy yourself. Yeah.

What are some of the, when a caregiver is carving out time for themselves, right? some self-care so that they can, you know, be available for that person, right, in a way that's healthy and not, when they're not really angry, right? What are some of the most common types? Resentful. Exactly, right, yeah. What are some of the most, like, transformative things that caregivers can do to take care of themselves?

And honestly, you say the word transformative, 10 minutes of quiet without anybody interrupting you can be transformative. In our last summit, one of the women told me, she goes, I just want to take a shower by myself. Because every time she goes to the shower, her husband is coming in. Are you done? What are you doing? Are you done?

What's happening in there? She would give anything to have a 10-minute shower alone without any interruptions. And that is such a minimal thing. For some people, having 15 minutes to read a day is very helpful. Or just 15 minutes of listening to the music. want, but a lot of times they're looking for a break, a 10 to 15 minute break where they can just be themselves. And whether it's going out on their porch and having a glass of water and just being alone

or walking around their yard, they're not big things that caregivers are looking for. Wow. They just need little breaks. Wow. If I know someone who has a relative with dementia and they are probably, to me, you know, suffering silently, right? If they're, you know, if they don't come to me and, you know, are there things that I can do to support that person? Absolutely. It's wonderful if you can say, hey, I'd like to come over and bring coffee and donuts for John. Why don't you take the chance

to get out for an hour? Those types of things can be so helpful. And if it's someone that you know, it's great. And if your family, you know, making sure that you say, I'm going to come over, and take dad to lunch while you go get your hair cut. Those types of things are really, really beneficial. Wonderful. Wonderful. Well, Sheila, is there anything that we didn't touch on that you want to touch on before we wrap up here?

I think basically we touched on a lot, but I think how to support living with dementia CMI would be a great thing for us to touch on. Yeah, how can people help you? So we have a bunch of different things coming up, and I will do one thing I want to mention is we have our large conference that's going to be how. held in the fall this year, October 29th, and we're bringing in a wonderful national speaker. Her name is Adriya Thompson, and you can look her up online

at Be Like Care Consulting. She is going to do a full day of training for caregivers of all kinds. So that's going to be a huge event for us. That information will come out shortly, but you can save the date for October 29th. Cool. And we have a couple of fundraisers coming up.

So we have our Our Heritage Hill does a come out on Thursday nights. They always have a band, and they support a nonprofit by giving a percentage of sales back. We are going to be doing that on Thursday, June 4th. So if you want to know more about us, you can just come on out to that event, and we'll be there to talk to people about what it is we're trying to do. We also have a big golf tournament that we do in September, so more information will be out there. But you can find out about all these things at Living with Dementia, cNY.org, and everything about us is on there and all of our upcoming events. Beautiful.

And you can just make a donation there too. Oh, cool. Wonderful. Well, Sheila, thank you so much. That sounds exciting. You've got a bunch of fundraising things coming up, but also a bunch of really cool, not just fundraising, fundraising, fundraising, but some cool events and things as well that are fun. The heritage of chill thing sounds really fun. Yeah.

And then as well as like the educational workshop summit. happening in October. Is that the summit? That's not the summit. No, that is our annual conference we do once a year. And that's how Living with Dementia at CMI got started. We have a summit in Onondaga County on May 5th. And we have a summit in Madison, Oneida County on May 19th. And that information is all on our website. So we look forward to caregivers and their loved ones signing up for that. Beautiful. Well, Sheila, thank you so much. Seriously, I think that this is a great conversation. And I, you know, I've seen these things up close and I think that this is a necessary conversation. It sounds like the organization that

you're working with is doing a lot of great work and supporting people that really need it. We really are trying to. Wonderful. Wonderful. Ladies and gentlemen, thank you so much for watching. My name is Noah Chrysler. This is a show called Good News York put on by ClickStream Studios. We just took over the new spaghetti warehouse location and or the old spaghetti warehouse location, and we are a full service content marketing agency. If you would like to work with us, the best way to get started, we are offering free marketing plans to businesses in Central New York. If you run a business or you work for a business in Central New York here in the Syracuse area or in the surrounding area, we will give you a free marketing plan. You'll get about 45 minutes with me. I will sit down.

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