Addressing Senior Social Isolation in the Community

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In this episode, Matt & Lauren build off their previous conversation with Ashwin Kotwal about social isolation by speaking with Eve Lefkowitz, the Executive Director of the non-profit organization, A Conversation to Remember, which connects older adults – including those who live with cognitive decline – with young adult college students to combat the epidemic of social isolation and loneliness.  Lauren & Matt learn about the populations this non-profit serve as well as perspectives on how to address social isolation with older adults.   

More resources

c2r.chat: Conversations to Remember

Transcript

Lauren Gerlach:

Welcome back to Minding Memory. In our last episode, we explored social isolation as a major public health issue and as an increasingly recognized risk factor for cognitive decline in dementia. We talked with Dr. Ashwin Kotwal about the science behind this, how social disconnection affects health, cognition, and aging, and why this matters so much for dementia research and care. Today we're continuing this conversation, but shifting the lens from research to action. Given that social isolation is a real and consequential risk factor, the next question becomes, what can be done about this right now in our communities?

Matt Davis:

I'm Matt Davis.

Lauren Gerlach:

I'm Lauren Gerlach.

Matt Davis:

And you're listening to Minding Memory.

Lauren Gerlach:

To help us answer that, we're thrilled to be joined by Eve Lefkowitz, the executive director of Conversations to Remember. This is a nonprofit organization dedicated to combating senior isolation through meaningful one-on-one connection. Eve, welcome to Minding Memory. We're so glad to have you here.

Eve Lefkowitz:

Thank you so much for having me here, Lauren.

Matt Davis:

So to start things off, we were wondering if you could tell our listeners a little about yourself and how you got involved in Conversations to Remember.

Eve Lefkowitz:

Absolutely. So my background is in business and law, but I also have lived experience with caregiving and dementia. Prior to COVID, I was running businesses and then when COVID happened, things kind of shut down. Seniors who were in long-term communities, seniors who were home were really isolated. And I personally had family members in that situation. I had a loved one who was in a long-term care community and had dementia. We used to see her every single day. And when COVID struck, we now couldn't see her at all. And luckily for her, she had a smartphone, and so we were able to video chat. And I started video chatting with her all the time. I have two children. And at the time, one was in college, one was in high school. And prior to COVID, they too would visit the long-term care community all the time. And seniors there loved to talk to them as the younger generation.

My son, who was in high school prior to COVID, also volunteered at another long-term care community in the dementia unit on a weekly basis, interacting with the seniors who lived there. So when COVID struck and he could no longer go in and volunteer, he saw what the video calls meant to, it was his grandmother, to his grandmother. And he, in addition to talking to her and his other grandparents on video, he contacted the assisted living where he had volunteered and said, "Is there anybody there that I could do video calls with?" Because he realized everybody there has got to be feeling as isolated and as lonely.

And they set him up on a video call with one of the seniors who he had been meeting with every week. And he had a friend join him on that video call. And then he had told some of his friends what he was doing and they said, "Wow, that sounds great. I want to do that too." So he contacted the long-term care community again and said, "Is there anyone else there that would enjoy a video call that I can do another video call with some other friends?" And they set him up on a second call and he had two different groups of friends. There were two or three of them on each call with the one senior and every week they were meeting and he realized this was really making a difference for those seniors that he was talking with. And he said, "Why are we restricting it to these two people?" And he came to my husband and myself and said, "There's got to be a way that we can do this for more people." And Conversations to Remember was born.

We did a lot of research, a lot of learning, a lot of educating, had lived experience with dementia. I have a degree in psychology. I had a lot of nonprofit experience and business experience. And so we continued getting educated and started reaching out locally at first to long-term care communities. And then very quickly it became national. And over the last five plus years, we've moved from it being high school students to being young adult, college students. We started focusing strictly on people with dementia, but the first time that someone, a caregiver said to us, "Well, I have somebody who doesn't have dementia, but they would really enjoy this." Our mission expanded. And so we are here for any senior who would enjoy the weekly video call. And that includes those with dementia, but it also includes those that do not have dementia.

Matt Davis:

That's such a great story. It's interesting that it came out of COVID because that's the first time I became aware of the impacts of social isolation because it really got a national attention around that time.

Eve Lefkowitz:

You're 100% right. The thing about seniors and social isolation and loneliness is that it didn't start because of COVID, it was certainly exacerbated by COVID, but COVID shone a light on it. So nobody really talked about it or recognized it before, but it really became obvious to people. And even though COVID is behind us or the pandemic part of it is behind us, people are more aware of what it means for seniors to feel socially isolated, to feel lonely.

Lauren Gerlach:

Absolutely. I was hoping you could describe for our listeners just a little bit more about kind of how Conversations to Remember works. So how the program is set up, who it's designed to serve and what one of these conversations might look like.

Eve Lefkowitz:

Thank you so much for asking that because I love telling about our program and what we do and how it's organized.

So we have a very curated program. And what I mean by that when I say curated is we don't just say, "Okay, here's a senior who would like to do a video call." We do video calls, by the way, and only video calls. So we don't just say, "Here's a senior who wants to do a video call. Here's some students who want to get on with the senior, go and you're off." We do the exact opposite.

We start by training our students. There is a training and a screening process for any volunteer who wants to join a weekly video call. The weekly video calls are to create intergenerational relationships. They're not there to counsel the senior or provide anything but friendship. And so we have the students all go through a training where we teach them a lot of best practices in communicating on a video call platform because when a senior gets on the video platform, it's not as common for them as it is for these young adults and they need to understand that they're not watching a movie of people talking.

And so we teach the students how to engage the senior. We know that for many seniors, if there's silence, they feel stressed, they feel anxiety, they feel like, "Oh my God, there's nothing left to say and I got to go." And so we teach our students that for the senior who maybe is really talkative, fine, the senior can lead the conversation, but the majority of seniors on our calls are not going to be the really talkative seniors. And we teach our students how to carry the conversation, how to engage the senior, how to not just talk about something that the senior could read in a book, but to share about their lives and their experiences, and then bring the senior into the conversation. The focus of the call is always on the senior.

And we teach them little techniques like to use the senior's name a lot while they're talking. Otherwise, how does the senior know who they're talking to, because it's never one-on-one. We have two to three students on every call with the one senior, so it becomes a small little community for the senior.

After the students complete the training, they then engage in a simulation. One of the other things that we emphasize on the training is how to handle different symptoms that a senior may exhibit of dementia. So different things can happen. The senior might not be living in our reality and the students need to learn how to join the senior in the senior's reality. The senior may every five minutes forget what the students said five minutes ago and the students need to handle that and not make the senior feel bad. The senior may be someone who thinks that they need to go because they need to get to work due to their dementia. And we teach the students techniques on how to reassure the senior and then keep them involved in the conversation without the senior getting upset.

There's a lot of things that we teach them. And then before we let anyone join a call, we check that they can put that into practice. So we do simulation calls. We have an adult who will role play as a senior, and we have seen a lot of different things happen on real calls. So we have the students sign up for this simulation call and they will be put through almost like a test where the person role playing will do a lot of different challenging things that happen on real calls, including the senior not answering or the senior saying one word, or the senior saying something that has nothing to do with what the students were talking about, and making sure that the students can handle these things.

If they are able to handle this and keep a conversation going, because as much as their hearts are in the right place, they have to be able to keep the senior engaged and not provide stress and anxiety to the senior. So there are people who, yes, they can learn these techniques, but there are other things that can't be taught, and that's being chatty. People are either chatty or they're not chatty, and there's nothing wrong with people who are not chatty, but they're not a good match for our weekly calls because the seniors, the majority of seniors on our calls do have some amount of cognitive decline, and many of them are more quiet and reserved. And we need to know that the students can handle any call that they get placed on.

So there is a person who can tell about the blizzard yesterday in two sentences, and then there's the person who can tell about what they did during the blizzard yesterday in 30 minutes. While we don't want them to be talking as a ... It's not a monologue for 30 minutes, we want the person that's not going to tell their entire experience in two sentences.

So then students, after they complete that simulation, are then invited to join a weekly call. The seniors who sign up, the majority of them do have caregivers, so it's often the caregiver who signs them up. Whether it's a family caregiver, a private caregiver, or employees in a long-term care community, those people will sign the senior up, or for an independent senior, they can sign themselves up. They will tell us what days and times would work for them for the weekly call. We offer the call seven days a week over about a 10-hour period. The calls are scheduled for one hour. If the senior doesn't want to stay on for an hour, they're not forced to, but the students commit to an hour so that the senior can have that full hour.

Matt Davis:

It's such a cool program. I mean, you hear about win-wins, but I think that the description that you just gave in terms of the students that are involved in this, I mean, the benefit they get among a generation that has lost the art of communication with technology, it just sounds like so cool for them. I guess I'm curious, just as a follow-up question, what are the conversations like? I mean, is it ... Yeah, what do they discuss? What types of things?

Eve Lefkowitz:

So Matt, basically, first of all, I should say the students make a long-term commitment to this. So the students start by making a four-month commitment to being on the calls. The majority of our students stay well beyond the four months. We have students who've been with us for years, and the calls are about everything and nothing. So before each call, each student is required to prepare six conversation topics. And we have a messaging system where the students and our support team all communicate with each other, and each call has their own little area, and the students have to actually post those topics before their call, and that way they can all see what each other's topics are. They don't know each other before the call starts, but week after week, they start to get to know each other too. So that's another benefit for them. And we have heard that there are students who've developed friendships with other students they've met on the call who they never would have met because they could be across the country from each other.

So what are the calls about? The senior is welcome to bring up a topic, but absent that, the students are supposed to be bringing up the topics. And what are they about? They're about the student's experiences or something that the senior likes. We discourage conversations that will get the senior upset. So we discourage the students from talking about politics or other social issues. However, if the senior is someone who really likes to talk about that, then the conversation can be about that. For the senior who has dementia, we have had some seniors with dementia who are not living in our reality and some of them maybe worked with students in their heyday and they think these are their students. So we've had some calls, not the majority of calls, but we've had some calls where the senior gets on and he or she thinks that these are their students and it's class, and the students will join the senior as if that's what it's about.

We had seniors who have been career counselors in colleges, and the students will come as if it's their appointment, because that's what the senior has made it clear they think it is. But the majority of calls are really just about chatting about things that are going on in their lives. Students may talk about a new pizza place that opened on campus and an experience about the first time they went there. Other times they might be talking about a movie. We've had calls where the seniors tell the students about a movie they should all go watch, and they all go try to watch it so they can all chat about it after. We've had vice versa where the students will tell the senior about a movie that they might have watched, and the senior will try to watch it. And just it's really about connection.

Matt Davis:

Sounds amazing. So I guess from your perspective, I mean, we're researchers and you're on the ground doing this stuff. So I mean, in terms of what you've observed, how does social isolation show up among older adults?

Eve Lefkowitz:

Okay, so I'm not sure exactly what the question is because I can answer it two ways. How social isolation shows up, I can talk about why it's happening to seniors, and I can also talk about how you can tell if it's happening to seniors.

So the why it's happening has to do with where they are in their lives often. So for the senior who doesn't have cognitive decline, for instance, they're getting older, they may be less mobile. They don't have the ability to drive sometimes and go places and be out there seeing people. Many of their friends may have passed away or moved away. Their children, their family have grown and flown, and so they may not be around as much. They may feel like they're more of a burden to their children, so they personally, the senior will withdraw because they don't want to be a burden to their children. They also don't work anymore. And there's a lot of socialization that comes from just going to an office every day or your workplace, whatever it might be. So those are a lot of the potential reasons why seniors as a class have such a high incidence of social isolation.

How can you tell if the senior is socially isolated? The answer is truly you can't, because social isolation is a subjective feeling. The senior could be somebody who has a very small social circle and feels content and happy with that, but they could also be someone who can never have enough people in their lives. So one of the things that we see, we experience here is when we talk to people at long-term care communities or caregivers or people who have seniors in their lives, they will often say, "Well, I don't know anyone who's feeling socially isolated or who's feeling lonely." And they probably don't know if that person is because the person may look like they're fine. Loneliness is not the opposite of busy. You can be busy and lonely at the same time. You can be in a room of a hundred people and be lonely. So it's something that is felt by the individual and our attitude at Conversations to Remember is that there is no one who is automatically not good for this program.

Also, by the way, as far as that first part that I was saying about why they might have a smaller circle of people, I was addressing only the people who don't have cognitive decline. It's even more difficult for a senior who has dementia because for the senior who has dementia that recognizes what's going on with them, they sometimes self-isolate because they're uncomfortable, they're embarrassed. Also, on the opposite end, there are people who were in their lives who are uncomfortable with their dementia and may pull away. There are things they stop getting invited to. So for instance, let's say somebody used to have a weekly poker game and now with their dementia, they're not really playing correctly anymore. Those people who were part of their social circle that were playing poker with them every week are not inviting them anymore because the person can't play the way that they want the game to be played. So that exacerbates the issue.

Lauren Gerlach:

When you think about the population that the organization serves, would you say that there's a majority who are in home settings or in long-term care settings, or does it really kind of go across the whole kind of gamut?

Eve Lefkowitz:

I think the potential group of people who we serve go across the gamut. We have more seniors in our program who are in long-term care communities because it's easier for us to find them. If you're a senior and you're home and you have a private caregiver or you're home and your family is taking care of you, we can't call you because we don't know how to reach you. But there's so many of them out there and we're working hard to try to get our name out there among more groups, more civic groups, religious groups, support groups, care agencies so that more people can learn about us and have seniors who aren't in the long-term care community sign up for the calls.

We do have seniors who are independent that are in our program. We have seniors who live at home with family who assist them. We have seniors who have private caregivers, and we do have seniors in the various levels of long-term care communities, whether it's independent care or assisted living or dementia care and skilled nursing and nursing homes. There's a gamut.

Lauren Gerlach:

And how would a senior get connected with your program? What would be the best way for them to access your services or find out more?

Eve Lefkowitz:

Okay, so we have a website. It's conversationstoremember.org. That's a mouthful. So we also have a shorter way to get to the same website, which is C as in Charlie, the number 2, R as in Robert.chat, C-H-A-T. So if you type into any browser, c2r.chat, it will bring you right to Conversations for Remember’s website. We have a lot of information on our website and there's a whole area for information about seniors. If after reading all of that, anybody has questions, there's a “Contact Us, they can click and submit a contact us to us. But if they're ready to sign up, they click the enroll button and then it's going to take them through all the information that we need to gather and then they will hit submit and then somebody will reach out to them after that.

Lauren Gerlach:

Terrific. Can you tell us a little bit about some of the feedback that you've gotten from either individuals themselves or families or care partners about the program?

Eve Lefkowitz:

We have, first of all, from the seniors or their caregivers, we have a monthly survey that they fill out for us. It's online, it's easy to access. So for the independent seniors, they answer the questions themselves. And for the caregivers, for the seniors that are not independent, the questions are geared towards what do the caregivers observe. And I can give you some statistics and then I can give you some anecdotal information.

So some of the statistics that we've seen from those surveys are that only 7% of the seniors who are current in the program are reporting feeling lonely on a daily basis. That shows that the calls are highly effective. The fact that it's consistent, it's week in and week out. We have 70% who are expressing feelings of loneliness only on a monthly basis or less. So it's not a daily thing or a weekly thing even anymore. We have 66% of the seniors are experiencing a positive impact of their mental state for at least a day or more after their call.

And what that means is basically the whole purpose of these weekly calls is to make the senior feel good, to make them feel cared about, and to make them happy. And so we want to know that this is improving their mental state. And anecdotally, I can tell you that we have had caregivers tell us that the senior was moping around for days, and then they had their call, and after their call, their whole disposition had changed and they were happy. We've had caregivers tell us that the senior was on the call, who has dementia, has really very little to no short-term memory, laughed and smiled the entire time on the call while they were watching. When the senior got off the call, and this is not just ... I haven't heard this just once. I hear this a lot. The senior gets off the call and the senior is smiling and maybe even laughing, and the caregiver says, "So what did you talk about?" And the senior says, "I don't know. " But they're smiling the rest of the day!

So they don't remember necessarily if they have dementia, what they talked about, but they remember the feeling that they are left with. And you can't buy that. We've had other feedback from seniors. I've had seniors who have no cognitive decline, who give us feedback where they say things like, "I have never laughed this hard," or, "They make me feel young again." Things like that. We've had other feedback of, "I feel so much more connected to this younger generation." I could just go on forever telling you, it's heartwarming all the great things that we hear.

Lauren Gerlach:

Have there been any moments that surprised you in terms of what participants enjoy most about the program?

Eve Lefkowitz:

Not from the seniors, from the students, from the young adults. I will tell you that I have been amazed by the number of young adults that want to do this. I know from personal experience that especially with somebody with dementia, it can be very uncomfortable interacting with them. And for young people, I know from back when I was younger, I would never have had that comfort level. I would have shied away from something like this. We have so many of these young adult students who are so drawn to this, and it's not limited to a certain category of people. It's not just students who are studying a specific thing in school or students who've had grandparents and lost them or students who've had family members with dementia. It seems to just run the gamut on what can draw them to us and what we learn from them, the students after every call, need to provide a feedback form.

So what we learn from them is really how much they enjoy this, how much they have more respect for what a lot of the older generation has gone through. Different seniors have different experiences that they're sharing. We've had seniors who have been in the military. We've had seniors who went through difficult challenges in their lives. And for the seniors who are able to share with the students, the students are getting so much insight into this other generation, the compassion level of these students.

And the best surprise of all, we've had a number of students say, "I didn't know which direction I was going in, but now I want to do something related to seniors." We've had students who were pre-med say, "I had really wanted to go into pediatrics, but now I want to go into geriatrics." You can't buy that. I mean, it's truly inspirational to me and this generation should be applauded for it. I know there's so many times when the 18 to 25 year olds are not looked at in high esteem and we are seeing a very different side of that. And the commitment level, because they stay with this, they make this their appointment on their calendar and absent being really sick or some other emergency, they are there.

Matt Davis:

So a lot of our listeners are researchers, and it sounds like you're having amazing results. I'm just curious, does your organization collaborate at all with researchers? I'm just thinking that publishing the data that you're expressing might be helpful in terms of funding opportunities and those types of things.

Eve Lefkowitz:

We are very open to collaborating with researchers and anyone who is listening to this, who would be interested in collaborating and getting involved in this from the research perspective, please reach out. You can send a “Contact Us” form right through our website, tell us who you are, what you're looking to do, and we are very happy to collaborate with you.

Lauren Gerlach:

One challenge we often think about in dementia care is scalability. Can you talk to a little bit what some of the biggest challenges have been in growing and sustaining a program like this?

Eve Lefkowitz:

Yes. One of the biggest challenges is about resources. So Matt mentioned about collaborating on funding. Well, that is the biggest challenge because we need more resources so that we can scale up our personnel so that we can handle more of the weekly calls. That has been the biggest challenge. Other than that, we are completely scalable. All of our systems are scalable and we have grown, but we can keep growing. There are millions of seniors out there that we are not helping and we want to be able to help them all. So really funding is what we need to be able to keep expanding.

Lauren Gerlach:

So what's next for Conversations to Remember?

Eve Lefkowitz:

What's next is to keep expanding. We are working hard to increase our donor base, our funding base, so that we can expand internally, which will allow us to expand externally. We have students from ... We've already hit students from every state in the United States, as well as Puerto Rico, the US Virgin Islands, DC. So we've got that, but we haven't hit every state yet for seniors. So we are still working to try to get seniors from everywhere. We've been in probably about half the states. At any given time, we're in at least a third of the states, but really we just want to keep growing.

Lauren Gerlach:

And if listeners were to take away one thing from your work, what would you want it to be when it comes to addressing social isolation and supporting older adults?

Eve Lefkowitz:

What I would love for your listeners to really take from this podcast is you can't just look at someone and know if they're feeling socially isolated or feeling lonely. And if someone is feeling socially isolated or feeling lonely and you're somebody who's involved in their life, you can't feel like it's your fault. There's not anything more you can do because sometimes if you have a loved one and you are talking to them for hours at a time every day and you're seeing them every day, that is wonderful and is great for them, but it just might not be enough for that particular person. And the last thing I want to say is there's a stigma out there around the words loneliness, social isolation. Get rid of that stigma. There is nothing wrong with saying, "I need more," or with somebody else saying, "I need more."

Lauren Gerlach:

Eve, thank you so much for joining us today.

Eve Lefkowitz:

Thank You so much for having me. It's been a pleasure.

Matt Davis:

If you enjoyed our discussion today, please consider subscribing to our podcast. Other episodes can be found on Apple Podcasts, Spotify, and SoundCloud, as well as directly from us at capra.med.umich.edu, where a full transcript of this episode is also available. On our website, you'll also find links to other resources we've created specifically for dementia research. Music and engineering for this podcast was provided by Dan Langa. More information is available at www.danlanga.com.

Minding Memory is part of the Michigan Medicine Podcast Network. Find more shows at michiganmedicine.org/podcasts.

Support for this podcast comes from the National Institute on Aging at the National Institutes of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan. The views expressed in this podcast do not necessarily represent the views of the NIH or the University of Michigan. Thanks for joining us and we'll be back soon.