The Age Guide: Perspectives on the Aging Journey

Aging Unfiltered: Dementia Friendly America – with USAging

• Age Guide • Season 4 • Episode 5

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Welcome to another episode of Aging Unfiltered. In this episode, we learn more about Dementia Friendly America (DFA) and how its work is focused on creating communities that are inclusive and supportive of individuals living with dementia. Joining us are Sandy Marwood, CEO of USAging and Mary Ek, Director of Community Care Corps and Dementia Friendly America at USAging. Through education, advocacy, and local partnerships, DFA fosters understanding and helps remove the stigma surrounding dementia and combat ageism. Their collaborative network empowers citizens, businesses, and organizations to make communities safer and more accessible for people who are living with dementia and their caregivers, ensuring people of all ages can thrive.

Resources

Home Page - Dementia Friendly America

Memory Cafe Directory - Dementia Friendly America

USAging 

51st Annual Meeting – AgeGuide

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Gretchen:

Welcome to the Age Guide, Perspectives on the Aging Journey. I'm your host, Gretchen Knowlton, and I'm thrilled to continue our series, Aging Unfiltered, where we dive into the realities of ageism and how to challenge it. In this episode, we're focusing on how ageism impacts communities and exploring a national initiative working to create more inclusive, age-friendly spaces. Today, I'm joined by two incredible guests from U.S. Aging. First, Sandy Markwood, CEO of U.S. Aging, will talk about the Dementia Friendly America Initiative and its impact on communities. Later, we'll hear from Mary Eck, U.S. Aging's Director for Community Care Corps and Dementia Friendly America, who will share her perspective on advancing these initiatives across the country. Let's start with Sandy. Sandy Markwood, CEO of U.S. U.S. Aging since 2002 is a passionate advocate for aging issues and a champion for helping older adults age well in their homes and communities. Under her leadership, U.S. Aging has advanced initiatives to combat social isolation, support caregivers, promote healthy aging, and create dementia-friendly communities. And our second guest is Mary Eck, Director of Community Care Corps and Dementia Friendly America at U.S. Aging. She played a key role in the development of Dementia Friendly America and continues to advance its mission under U.S. Aging's leadership. Let's get started. So, Sandy, thank you so much for being here today. I'm so happy to have you as a guest.

Sandy:

Oh, Gretchen, I'm thrilled to be here. Thanks so much for inviting me.

Gretchen:

Of course. Let's start at the beginning. Take us back. What inspired the creation of Dementia Friendly America? Was there a defining moment that set this initiative into motion?

Sandy:

Well, for a stretch, and I have to say that when we're focusing in on Dementia Friendly America, this is a mission-driven initiative, and it's one that I am both professionally as well as personally committed to. So looking at this through the professional lens, you know, we know that there are more than 6 million Americans who are living with Alzheimer's, but we also know that there are between the ages of 75 and 84, 13% of Americans who are living with dementia. And that number rises to 33% when we're looking at people over the age of 85. Wow. Couple that, those numbers, which are staggering, with the fact that over 11 million Americans are providing unpaid care to people who are living with dementia. And when we're looking at people living with dementia, oftentimes people think that they're living in nursing homes or some other type of institutional setting. But the truth is 80% of people living with dementia are living at home and in the community. So responding to the needs of people living with dementia and their care partners is really critical. And that's what Dementia Friendly America is all about. And as I mentioned, personally, my mother had vascular dementia. So I know the struggles of people who are living with dementia and their care partners in navigating not just services, but really just living day to day at the community level. So because of both the personal and the professional commitment that I have, And also recognizing the incredible work which really spurred Dementia-Friendly America, which was learning from the work that Minnesota had done through their Act on Alzheimer's initiative, which was really led, administered by a AAA trellis in St. Paul, and really It really incorporated AAAs throughout the state and communities throughout the state. And in looking at the impact that that initiative had on the lives of people living with dementia and their care partners, there were a number of national organizations that came together and said, we need to replicate the Act on Alzheimer's model at the national level. You know, a variety of national organizations, aging organization, Alzheimer's organizations, chiefs of police, local governments, pharma, people all over the spectrum of organizations, public and private, came together and said, we need to make this a national initiative. And so at the White House Conference on Aging, and 2015, it was announced DFA was adopted as a national dementia friendly initiative and US Aging was so pleased and honored to be given the opportunity to administer this national initiative. So that's how we got started. And we're just about to really realize our major anniversary in 2025. And with this commitment to make this a national initiative, a national movement to ensure that people who are living with dementia can thrive at the community level. And that's what DFA is all about.

Gretchen:

People want to get involved and they want to bring it back to their local area and They can probably do some customizing, which we'll have to talk about so that it really meets their individual unique community needs. And I'd love to hear more about that in a minute. We've been sharing on this podcast series that we're doing about how ageist stereotypes create barriers for older adults so that it makes it more difficult for them to age well. How does an initiative like Dementia Friendly America break down those stereotypes, do you think?

Sandy:

Well, Gretchen, as you know, that when we're looking at the issues of aging and ageism, it's really prevalent when we're talking about looking at people's thoughts and impressions and the stereotypes people have of people as they age. But that's intensified when we're really looking at people who are living with dementia. And the barriers that are put up, even before a diagnosis, but when people get a diagnosis of dementia, it is amazing. And I can talk about this both personally again and professionally, where people walk away from people who have a diagnosis of dementia. That all of a sudden, instead of looking at dementia as a journey, which can last years, people immediately go to that end of life perception of someone who is living with dementia and they start discounting them. They think of them as less capable, as frail. They think only of declining health and immediate declining cognition. And because of that, that tends to make the individual with dementia socially isolated. know friends step away different groups that they were involved with don't necessarily aren't as quite as welcoming and part of that is based on fear and that fear is based on not understanding um the whole scope of dementia which again is the goal of dementia friendly america and dementia friends is to create an understanding of what people, the journey of dementia and what people who are living with dementia go through and how best to support them and their care partner.

Gretchen:

really a unique concept, I think. We in the aging world talk a lot about individuals needing services and supports. And we also, of course, provide all of those services to caregivers. And we're always talking about the value of the caregiver. But I like the way this kind of turns it and opens up the intervention to all of us. We're all a part of this strategy, right? The whole community needs to get involved. It's not just the individual with dementia. It's not just their family and their caregiving team. It's all of us. We can all contribute to this. We all have a role to play in making our world better for all of us. And it seems like that's really what you're describing here.

Sandy:

You know, Gretchen, you've nailed it. That's exactly what we're describing. And again, from a personal perspective, when I was on the journey with my mother who had vascular dementia, as an aging professional, I could navigate the services that she needed. What was very difficult for me to navigate was taking my mom out into the community. At that point, my children were younger, so I was dealing with my mom and also with my children. And going out into the community to a grocery store, going into the bank, trying to find a hairdresser who could understand what she was going through and also what I was going through, to be able to take her into a doctor or a dentist and realize that she needed a different level of support in those types of settings. So that's what Dementia Friendly America is all about. It's looking at the whole community and how the whole community can come together to support someone who is living with dementia and their caregiver.

Gretchen:

Wow. That makes a lot of sense. I love that. So looking ahead, what's your biggest hope for Dementia Friendly America? What legacy are you hoping to create?

Sandy:

This will make Mary nervous, but I want every community in the country to be a dementia friendly community. I want dementia friend training to be part of what all communities offer. I would love to see dementia friend training in the school systems. I think that as we look at planning for communities, it's not just planning for an age-friendly community, it's planning for a dementia-friendly community.

Gretchen:

Wow, that's a big dream. I love

Sandy:

that. It is a big dream. It is a big dream. But as Mary will highlight, we are well on our way with having state leads around Dementia Friends. And also in looking at the opportunity that we have with over 400 communities already involved. And we almost, you know, we're getting close to over 200,000 Dementia Friends. So we are well on our way. We've got a lot of momentum. And it's It's up to us all to ensure that that momentum continues.

Gretchen:

Yes. And so what do you think we can all do to help you in this? The last question I was going to ask you, Sandy, is about public policy and advocacy work. What can folks do if they would love to see this spread and they want their community to have this? What policy changes do you think we need?

Sandy:

Well, I am hoping that at the community level that we ask questions of our local elected officials, our state officials, and our national officials. Given the statistics that I started out with about the prevalence of dementia in communities across the country is... We ask the questions, whether we're doing planning for, or zoning or, you know, where are supports that other supports at the community or state level and national level, as well as how is this going to impact people as they age? How is this going to impact people who have dementia? And you can add on other chronic conditions as well. And what can we do to support them and their caregivers? So it's a filter that we should have to be able to ask the question and raise the issue that that as people age, we need to be able to, again, value and support them as people get a diagnosis. And we do hope people are getting diagnosis of mild cognitive impairment or dementia, that it's not as it was before. In some cases, people thought, well, that was it. You know, let's close the tent. No, it's like, Now what? Now what's available through the Area Agency on Aging, through the Alzheimer's Association, looking at what we can collectively do together to be able to respond to those needs. And policy is going to play an important role in that. But for policy to play an important role, people need to advocate. You need to advocate for aging, And you need to advocate for ensuring that people who are living with dementia, again, 80% at home and in the community level, are able to thrive at home and in the community. I

Gretchen:

love that. you talked about this as being sort of a mindset change, right? We need like a new filter to think about people with dementia and other chronic conditions. And it kind of reminds me of other accommodations that we do in our community for people who have any kind of challenge, right? So when they decided that it was going to be required to put cutouts in the sidewalk for people who needed to use a wheelchair, that also becomes convenient for the rest of us, for parents who are pushing a stroller, for people who are pulling their groceries, for someone who's riding a bike and needs to enter onto the sidewalk. It became an accommodation that we all could enjoy. And I think what you're describing is something that can make life better for all of us in the community. Some of the adaptations and the little tweaks and changes to how we do things for someone with dementia can be helpful for people with other kinds of disabilities, maybe people with developmental disabilities or people who are visually impaired or hard of hearing, some of these things will be helpful for many people, even for the person next door or for you and I. There can be things that just make life better. And so I think we should all be embracing this to have a more inclusive society. This is a really neat work that you're doing.

Sandy:

Christian, I absolutely agree, and I love what you said, which is true, and we found that true about age-friendly communities. A dementia-friendly community, and one of the examples I'm sure that Mary will highlight is what we found with dementia-friendly businesses. There are so many simple things we can do that, again, make life better for people living with dementia, but also make life better for all of

Gretchen:

us. Right. So that's just one more reason that every community needs to get on board with this. And that's probably a good selling point for it too. And you can talk about how it helps everyone, right? Wonderful. Thank you so much for sharing your thoughts and your vision for the future and ways that we can all get involved in this and advocate for aging and advocate for people aging with dementia. I really appreciate that. Before we continue this conversation, a quick note. We have a couple of exciting opportunities coming up for you to meet and mingle with our incredible show guests. First, we're honored to have Sandy Markwood as our keynote speaker at AgeGuide's annual meeting and luncheon on Friday, April 25th, 2025 in Lombard, Illinois. You can register on the AgeGuide website to come here and meet Sandy in person. Second, US Aging just happens to be hosting their annual conference and trade show right here in Chicago from July 20th to 23rd. If you've been inspired by Sandy's insights on dementia-friendly communities, you won't want to miss this event. It features a range of workshop topics on aging, advocacy, and community-based services. Registration opens April 7th, so mark your calendars and get ready to join leaders, innovators, and change makers in the field of aging. We have a link to the webpage in the show notes. Let's turn it over to you now, Mary. You are at the implementation level of this, I presume, and can give us a little bit more of your thoughts on this. Let's start with, can you give us a dementia-friendly definition, kind of an overview of exactly what it means and what it is?

Mary:

Absolutely. And thanks for having me, Gretchen. It's a privilege to be here and a privilege to do this work. As a former caregiver for my grandmother, who I cared for when I was a teenager and we didn't call it dementia. And now we've moved to being able to talk about dementia for my in-laws. It's been wonderful to be part of this work and see the progress being made in terms of reducing stigma and resources available. So I've been able to see the proof in the pudding. You're

Gretchen:

right. There's been some real change about even being able to talk about dementia, right?

Mary:

Yeah, absolutely. Absolutely. So to kind of sum up the examples that Sandy gave and her experience as a caregiver supporting a loved one with dementia, we define a dementia-friendly community as a village, town, city, or country that is informed, safe, and respectful of individuals living with dementia, their families, and their care partners, and provide supportive options that foster quality of life so that they can live and engage in community. They can remain in their homes for as long as possible, knowing that they're surrounded by people that are helping make that possible and helping make it possible for their care partner to enter into community with their loved one, knowing that they will have added support and they won't have to face some typical challenges that they may face going into the grocery store or the bank, like Sandy mentioned. So it's kind of pulling all of those sectors together. So we have learned very quickly that providing supports in the community and embedding those in communities that people can live and work, engage and thrive and are able to remain in their homes longer. As Sandy mentioned, the example at the grocery store, you know, at the bank, you know, going into a faith community. And that's often where much of our work will start in our communities because that's, you know, a place of safety for many people and a place of routine where they go for that comfort. But that can become a challenge as dementia sets in. And so we have sector guides for various sectors in the community that gives specific examples of practices that they can implement in their sector that would allow for a more welcoming environment for people living with dementia and their care partners. You know, in a faith community, for example, a shorter service, more familiar songs, you know, on a simple song sheet that a person living with dementia can follow along. Somebody escorting them, if they are living alone, or if a care partner can't go, a volunteer from the community to sit with them, to help them follow along, help them sing along, name tags, some very simple steps that sectors can take to make their their sector more welcoming.

Gretchen:

So that gets us back to the question that came up initially for me, which was how can communities kind of customize this for their own unique needs? Each community, as you know, is so different. So are they able to just kind of make their own plan based on what they need and what resources they already have available in their community, what maybe some of their specific challenges are?

Mary:

Absolutely. That's the beauty of this work is that it is flexible. So we have customizable resources. So our sector guides, has some standard information, but then an area where communities can include their local resources on that guide. As long as, and I failed to mention this earlier, that they are including people living with dementia and care partners in the process. So that is one of our key requirements for this work and for creating an action team is that it's being informed by people who are living with dementia and their care partners because they know the true need and what they would like to see when they walk into the grocery store, when they walk into a bank, when they go to their place of worship.

Gretchen:

That's really unique. And that would be a hands-on experience in becoming dementia friendly as you try to involve folks with dementia in the planning process and in the decision making. Gives everybody that exposure and that experience and probably breaks down some of those fears you were talking about too.

Mary:

Absolutely. I think it's an example right there that of what people living with dementia can do and can contribute. You know, I know how I want to be received when I walk into the grocery store. I know how I want people to respond when I might be struggling to find something or not really sure what I came in here for. I want people to, you know, respond with respect and not shy away from recognizing that there's something going on here. And, you know, how can I be supportive? I didn't mention earlier about a new initiative that is now falling under Dementia Friendly America is the Memory Cafe Alliance. And when we talk about ageism and what older adults are capable of, I think the Memory Cafe captures that very well. There are opportunities to engage and opportunities for care partners and their loved one living with dementia to engage together and enjoy an activity together so these memory cafes are wonderful opportunities and often are included in our dementia friendly community efforts is starting memory cafes and they usually include an art activity music some kind of fun engagement for people living with dementia and their care partners and and that's been um That's been a huge asset to our team. We have a memory cafe directory on our website now so that people can put in their zip code and find memory cafes near them. And here are opportunities to engage. And in dementia-friendly communities, we are working to create opportunities where people living with dementia can engage. You know, movies where the lights are kept on. And there's a restroom break midway through. You know, restaurants like Sandy mentioned, a quiet space in a restaurant. And that's, like you said, often people living with autism are looking for a quieter place in a restaurant. So it serves many people with just some very simple changes. And so we know that that creating these communities where people can live, engage, and thrive benefits all. It really, you know, it can be a focus on dementia, but in the end, it's, as my son would say, so isn't it just about seeing people and being nice? And I was like, well, it is, you know, there is a lot to that. It is about seeing people, recognizing a need, and responding to that need.

Gretchen:

And You know, you've mentioned it a couple times. There's definitely a stigma around dementia. There's a lot of fear of not understanding it or not knowing how to respond or what if I say the wrong thing or come across the wrong way or I don't know what to do. So there's that fear component. It seems like there's a lot of intersectionality with that and ageism, right? Ageism comes, I think, from a misunderstanding or some misguided notions of what it means to get older and some stereotypes that we have. And we also have a lot of stereotypes around dementia. And there's some intersection with that. Sometimes people think that everyone who's old has dementia. Sometimes people think that everybody who has dementia must be old. And neither of those two things are at all true. But we kind of categorize them together. So that's why I think this is such a great topic to talk about in this podcast series where we're focusing on ageism because of that layering and that intersectionality between dementia and ageism. So I wonder if you have any other specific thoughts on how to kind of enhance our understanding of both of these things and support individuals living with dementia and their caregivers, as well as combating ageism.

Mary:

You know, I think Sandy made a very good point about just the seeing the value and worth in older adults and people living with dementia. There's still so much they can do and want to do and want to be engaged in and want to wake up and have a purpose and a place to go and a place to engage. And I think an example of that It is difficult to choose just one story. We hear testimonials every day of the impact of our work on those not living with dementia. And this impact, which has often increased awareness and understanding, has the very impact on those living with dementia that we had hoped for when we launched DFA. One particular story that comes to mind is from years ago when I attended a dementia-friendly community kickoff meeting on the East Coast. And that's something we often do. We're invited to kind of do the launch of a community community-wide initiative and share information about what's happening at the national level. And it's really an honor to be invited to those events. And at this one, there were a number of presenters, leaders from various sectors committing to engaging in the effort. And I shared my general information. And then what they often do during a kickoff meeting, which we recommend, is having a person living with dementia share some of their experiences And in this particular case, the person living with dementia was a man who was in his 40s living with dementia. And he gave, you know, just a really compelling story for anyone who may have questioned why this work is important. And he shared some experiences, you know, on when he was engaging in the community or out and about running errands and really just brought it to life for many people. And after the... After the kickoff, I was just visiting with people and a gentleman approached me and I shook his hand and I introduced myself and he told me he was too embarrassed to tell me his name. And when I asked him why, he proceeded to tell me that he didn't want to come to the event, but his boss told him he had to, to represent their business. And he didn't think it was at all relevant. And why do we need to learn more about dementia? People with dementia won't be in our shop. And, you know, it was a local grocery store. The reason he was embarrassed is that it turned out the man living with dementia who shared his story was this man's neighbor, and he confessed to not being patient with him when they would cross paths in the neighborhood. He had no idea that this man was living with dementia and that he looked like a normal young guy, which, as we know after our call today, that that's a common misperception with people that they just have one face when they think of dementia. And he went on to say that this event changed his entire perception. As it turned out, the man living with dementia joined us as we were wrapping up our conversation. And the embarrassed gentleman introduced himself by name and told his neighbor that he was sorry for his ignorance and that he had learned a lot today during that presentation. And they hugged. And, you know, it was just... a real tender moment, I think, for both of them. I think validation to the man living with dementia, but also just... I felt like it was a nonjudgmental wake up to the gentleman who did need to learn more about dementia and the faces of dementia. And it was just, I would, you know, certainly a humbling experience, but also why DFA is here, why we need to bring this information to communities to make our communities stronger and friendlier for all.

Gretchen:

Yes, what a powerful story and a perfect example, like you said, of why this is so important. And I think I can totally relate to thinking about you know, that I already know about something and I'm sent to go to something by my boss and I don't really want to go there. And then you hear this kind of information and you realize that it impacts everyone and it impacts you and it impacts people that you know, and it can be game changing. So this training is just so important. Thank you for sharing that story. You're welcome. It's a great example.

Mary:

Yeah. Yeah. It was a privilege to witness that.

Val:

Hello and welcome to your Medicare Minute. My name is Val Guzman and I'm the Benefit Access Specialist here at AgeGuide. A lot of people ask about when they can change their Medicare Advantage plan. The Medicare Advantage open enrollment period runs from January 1st to March 31st, so you still have time to enroll in a new plan. This open enrollment period is a little less known mainly because it applies only to people that are enrolled in an Advantage plan as of January 1st. So you can either change to a different plan or you can switch to original Medicare. A good way to compare these plans is by checking with your doctors to see which plans they do accept so you know which plans to focus on just because there are so many plan choices for you. Then you can compare how much the plans cost and the extra benefits that they offer. If you enroll in a new plan, it will take effect the following month and it will cover you for the rest of the year. But feel free to ask a SHIP counselor about your plan options or go to our website at ahguide.org for more information.

Gretchen:

Thank you for listening to The Age Guide, Perspectives on the Aging Journey. Age Guide coordinates and administers many services for older adults in Northeastern Illinois. Our specially trained professionals are available to answer questions and connect you with local service providers and resources. If you are interested in these services or want to learn more, go to our website at ageguide.org. or call our offices at 630-293-5990. Please follow our podcast so you can be notified in your streaming account. Thank you and we will see you next time on the Age Guide podcast.