Hello and welcome. My name is Laney Bruner-Canhoto. I’m the Director of Waiver Quality Management Systems at the Department of Developmental Services. This training comes from an identified need to increase support for people with IDD who have Alzheimer’s or dementia, as well as increasing the support for their caregivers. DDS, in collaboration with providers, stakeholders, advocates, families, and the Executive Office of Elder Affairs, looked at ways to address this need and discovered Memory Cafés, a new concept that provides support to individuals with memory issues and their caregivers through social time activities and informational resources. In an effort to encourage the development of Memory Cafés throughout Massachusetts, DDS is offering this training to help you get started with Memory Cafés.
So what exactly is a Memory Café? Well, I’m delighted to welcome Beth Soltzberg from Jewish Family and Children Service to walk us through what Memory Cafés are, and how to get them up and running. She has organized and currently runs a Memory Café in Waltham, as well as is a leader of the Percolator Network of Memory Cafés here in Massachusetts and has been helping us get the word out about this initiative. >> Thank you so much, Laney, for having me here today. I’m very excited to talk with you about Memory Cafés, and today we’re going to be discussing Starting a Café, First Steps, How to Sustain a Café, and Inclusiveness.
And inclusiveness with regard to Memory Cafés includes many factors. We want Memory Cafés to be physically accessible, to be culturally competent so that they are responsive to different languages, different cultures that guests may have, and today in particular, we want to focus on including people who have dementia and also a developmental disability. So as Laney mentioned, my name is Beth Soltzberg. I manage a program called the Alzheimer’s and Related Disorders Family Support Program at Jewish Family and Children’s Service in Waltham.
And about a little over two years ago, I started the JF & CS Memory Cafe. What happened then is that a lot of people expressed interest and curiosity about the model, and let me just take a step back and say our café was the second one in Massachusetts. The first Memory Café in Massachusetts is in Marlborough, the Create a Better Day Café, and that one, run by Tammy Pasaricki, is really the pioneer café.
When I started ours, I put the word out to many providers in the community to let them know that this program was available and asked them to spread the word among their clients and patients. And so many contacted me and said “What is this thing, this Memory Café? I’m curious. Sounds fun. Maybe I want to start a Memory Café.” And that interest and enthusiasm really was then the genesis of the Percolator Network, which is a group that meets every quarter, and we essentially share everything we know about running a Memory Café. We share ideas. We troubleshoot for one another. We have a guest artist directory that we share. We try to do outreach to let the general public know about memory cafés, and we make sure that the time and day of new cafés complements rather than conflicts with existing cafés.
So I’m going to be talking with you more about that network as the day goes by. So what is a Memory Café? You know, I wanted to start with a really a single slide just to explain what it is in one sentence because it’s something that’s new to most people. So Memory Café is a welcoming social gathering for people living with dementia and their care partners, and you see in the visual, there are formal services such as support groups, day programs, etc., and then on the other side, the neighborhood – coffee shop, library, grocery store, faith community, and the Memory Café really is a bridge between formal services and the neighborhood. It offers a level of structure and support that you wouldn’t find at your neighborhood coffee shop, but it also doesn’t feel like a formal clinical program.
The Department of Developmental Services here really deserves a lot of credit for being a pioneer in this area. So when I first was contacted by DDS to think about leading these trainings, I reached out to Memory Café facilitators all around the country and asked, “Have you done this? Do you have cafés for people with dementia included, that are really designed to include those with developmental disabilities?” and two things happened. First, I found out, no. No one has done this yet, and, second, there was a lot of confusion, and there was a lot of initial pushback saying, “Well, wait.
Developmental disabilities, intellectual disabilities, that’s not the same as dementia. You’re putting two different populations with different needs together.” And I had to explain a couple of times, “We are talking about serving people who have dementia and their care partners.” Making sure that those with developmental disabilities as well as dementia are included and welcomed and really building the collaborations to make that welcome a reality, not just something on paper. So I think what I discovered is that we in the aging service world, which is my background, don’t know a whole lot about the fact that people with developmental disabilities are now living long enough to develop dementia in great numbers. And that these folks, to some extent are falling through the cracks of these two service systems, and we really need to work together.
Dementia rights advocates really drive distinction between dementia and intellectual disability, and this is sort of the source of some of the pushback that you might get as you begin to talk with potential collaborators about your integrated Memory Café, and it’ll be important to again really explain and say this program is for people with dementia and care partners. Some of the people with dementia will also have a developmental disability. So they are in this category. We are not talking about a program that brings older adults in the general population with dementia together with younger people who have ID or DD. That’s not what this is about, and I think there may be that assumption initially when you talk about your program. And it’s true that those are populations that do have, you know, fairly different needs. So common goals between aging and disability service providers. Dignity is front and center. A person-centered approach. So this isn’t about a cookie cutter kind of a program that, you know, everybody in the group attends just because they’re in the group. It’s about a program that really is going to work well for some people and not others.
Depends on their needs and their personality. Need for social interaction. So dementia tends to isolate people for two reasons – one, because it makes every day activities more difficult, and, second, because there’s a lot of stigma unfortunately. So that people may start to feel uncomfortable doing familiar activities, even if they are capable of them, just because they’re not sure how others are going to react. So these are principles, are goals that providers of services in both domains really care about and work on every day.
And at the bottom, you see the saying nothing about us without us. So a few tips to really help foster this inclusion and collaboration. So get to know other providers. It’s really important to have those relationships in order for referrals to take place. Clearly define the target population. So I’m going to just say it again. Your target here is people with dementia, including those who also have developmental disabilities. Assume knowledge gaps, even if you feel like you’re over-explaining. People working in family service centers, for example, and councils on aging. They’re dealing with different funding streams. Populations that have different patterns, different locations, different referral networks. So miscommunication is easy. So it’s better to err on the side of more communication, more explanation. If you’re going to be welcoming in guests from group homes, make sure the staff understand this is not an activity to go on the activity calendar and just be for the whole group home to come to together.
Again, it’s a person-centered model. So the goal is to individualize for the specific people who need it. And, again, it’s for people who have dementia. And that may mean that the one or two individuals in that category at a particular group home, for example, or in a day program, are going to need someone to come with them, a volunteer or a family member or some staffing, so that they can come to a program that’s not what the rest of their peers or housemates are doing that day. And, finally, café publicity should stay, what I consider, the universal role. The care partner, a care partner must come with those who need personal care assistance. So plenty of people come to cafes on their own if they’re able to, but if they need personal care assistance, someone needs to come with them, and that, along with the fact that this is person centered, and the referrals should be thoughtful and appropriate. That means you can get folks from any setting with any constellation of needs and labels as long as they can enjoy and benefit from a program like this, and they have the support that they need with them.
So that’s kind of preamble, and now we’re going to dive in and look at some pictures of Memory Cafés and kind of take that first layer of nutshell off. So Memory Café, what is it, and this is a photo from the Create a Better Day Café in Marlborough, which is the very first in the state created by Tammy Pasaricki. So she’s our state Memory Café pioneer. So it’s a welcoming social gathering. This is the JF & CS Memory Café, and you see our creative clothesline behind these folks. So that’s artwork created at some of the café sessions, and we have some stories up there that we’ve written as a group, and we just keep adding to that as time goes on. And it’s for people with dementia and care partners, and this is very important. We see scenes like this at our Memory Café all the time.
People holding hands, arms going around each other. Care partners have told us it is so special to do something fun together that’s not about problems. It’s not about medical care. It’s not about losses and shortcomings. And so that means as you’re designing your café, you want to think of the needs and interests of care partners as well as your guests with dementia. Dementia can be due to any condition and at any stage. This is the Memory Connections Café in Brookline. Now there are some cafés in the U.S. that are designated for people with early-stage dementia. That is a choice. Here in Greater Boston, first of all, the Alzheimer’s Association runs some programs for people with early-stage dementia. So that need is being met at least to some extent. I know, you know, we’re out in Shrewsbury. Some of the programs I’m talking about are more concentrated closer to Boston.
So I think, you know, there needs to be a lot of more of everything realistically because there’s so many people affected by dementia. With that said, the Memory Cafés that have begun in Greater Boston are all open to people with any stage of disease progression, and, you know, I think for a lot of us when we were starting our café, we wondered how would that work. How would it before for people to come in and see someone who’s symptoms might be much more severe than their own? And it hasn’t been a problem. It hasn’t been a problem in our café in Waltham. It hasn’t been a problem for any of the other cafés. I think part of what helps is if you can have volunteers, if you can have care partners, then your first impression when you come in the room is a very diverse group. You see people of a variety of ages. You’re not sort of struck that the population looks one way. So great to have care partners and volunteers for a whole host of reasons, and that’s just one more. And the other is that with a little bit of skill and planning, you can facilitate activities that really work for a whole spectrum of cognitive needs, and we’ll get into that more.
So cafés don’t ask someone for a diagnosis, and that winds up being really important. It means that people can come who are experiencing some thinking changes but haven’t received a formal diagnosis. It means that people can come who have progressed in their dementia to a point where they don’t have self-awareness about their condition, that they can come. It means that people who have been diagnosed but are very uncomfortable with that idea can come without being hit over the head with a disease label. It means people who, you know, maybe some of your clients with DD who don’t so much relate to the diagnosis can come, and it’s just not a problem. So we don’t ask people to identify as either the care partner or the person with dementia. Sometimes it’s quite obvious, sometimes it’s not, and that’s absolutely fine. So Memory Cafés meet in a safe, accessible community space, and this is a photo of the Jay Arthur Memory Café in Rose Mill, Roseville, Minnesota, which is in competition for status of the first café in the United States. There’s also a café called Alzheimer’s Café in Santa Fe. So this is a wonderful spot.
Their café’s been running for many years now, and the owners of this coffee shop are really in support of the concept. They have a slow time of the week, and they’re able to provide this private space. If you have a space like that in your community, it’s ideal. It’s the least expensive way to run a Memory Café because people can order what they want. You don’t even have to worry about bringing in refreshments, but, you know, it’s some key ingredients. You have to have a venue where the owners are really in support of it, and they can see doing this over the long haul, not just for six months. Has to be parking, it has to be accessible. So not everyone’s lucky enough to have an option like that in their community. And the activities are geared to a wide range of cognitive abilities. So at our café in Waltham, this is a photo from our café, we have a guest artist every month, and I have found that the creative arts really can challenge and engage and enliven people with a wide range of cognitive abilities.
And one of the interesting things that happens is that it’s often the care partners who say I can’t draw a straight line. I can’t dance. Poetry, I don’t know anything about poetry. Storytelling, I can’t sing. You know, they sometimes feel intimidated at the beginning, and I will say we never put anybody on the spot. Those who just want to watch, that’s absolutely fine. However, we invite and encourage and try to engage participation, and nine times out of ten, those people who feel skittish at the beginning end up diving in and being really electrified by the experience. It’s often the people with dementia who are a little bit less inhibited and are able to just engage. And the gentleman in this slide, he’s here at our café with his daughter, and he ended up making a collage, which is a Valentine to his wife, who had died a few years earlier, and he and his daughter had a really special time talking about that, remembering her together.
So this is an example of something that anybody can do. It doesn’t matter what their cognitive status. And cafés strive to be inclusive. Physically accessible, free of stigma, and culturally competent, and this is actually an image from this display board, which you can get up and look at later if you like. This is artwork created by the guests at the JF & CS Memory Cafe, and our predominate languages are English, Russian, and Spanish. So the text is translated into those three.
Volunteers are a plus. Now, you don’t have to have volunteers, but if you do, you get more hands on deck, you can accommodate more guests without stress, and your volunteers learn so much. So the JF and CS Cafe set up a formal partnership with a student group at Brandeis University when we began our café, and these are some of our first cohort of Brandeis students, and we, when we evaluate our café every year, we also have a survey for our volunteers, and they let us know the impact that the experience is having on them. And some of our early group of volunteers have now graduated, and some of them are working with older adults, and they’ve let me know and some of them stay in touch. They let me know that they, their idea of what it means to live with dementia changed because of their experiences as volunteers in the café.
It’s not often that people have the chance to see those living with dementia in a very positive, strength-based, upbeat, fun environment where their personalities can really shine. So it’s well worth doing, and there are cafés around the country that have middle schoolers, that have high school students, that have college students, people of all ages. And then what a Memory Café is not. Now in your packet on page five, you have a whole handout which was created by the Percolator Network. It’s called “What a Memory Café is and What a Memory Café is Not”, and you can look at that on your own, but, you know, we, I don’t have the authority to tell you this.
We as a group, the Percolator, you know, it’s not that we own this concept. Nobody does. Memory Cafés are a grassroots movement, but we really thought as a group what are the guiding principles that we want our referral sources to know that they can count on us for, and that we want to communicate to other people who are starting cafés. So from this list, we’ve talked a lot about what a Memory Café is.
What it is not. So it’s not a facilitated support group. Facilitated support groups are very important, and many of our café guests go to a support group as well, but it’s not the same thing. It’s not a drop off respite program. So you will get this question. Care partners will contact you and say, you know, “My loved one is going to come for the first time. Should I stay?” And what I always say is, “Yes, please, it’s for you, too.” Now if your loved one needs personal care assistance, someone has to stay with them, whether it be a family member or a friend or a professional care provider, someone has to be there, however, we also want to make the point that the café is really for the care partners as well and making that distinction. And the Massachusetts Lifespan Respite Coalition has been very supportive of Memory Cafes, and they really have begun looking at it as a form of respite because it’s a place where care partners have a chance casually to meet other care partners.
You know, they can be over at the coffee table having a cup of coffee and chatting while the person they came with is at the table engaged in an activity or talking to a volunteer, and they also get that chance to really recharge their relationship with the person in their life who has dementia, and that’s a different way of thinking about respite, but it’s really important also. And it’s not primarily a marketing opportunity. You know, all kinds of companies and businesses and organizations and individuals run Memory Cafés, and we just want the focus to stay where it belongs, which is on the guests. I want to talk to you a little bit about the name Alzheimer’s Café and the name Memory Café.
So you can name your program anything you want. There’s no copyright here. There’s no rule. It doesn’t have to be called either of those. It could be called Le Café de Maria, and at one of the trainings, people were talking about having a name like that, and then maybe a subtitle, a Memory Café, but you call it what fits for your community. Now the people who use the term Alzheimer’s Café, they did it from an advocacy standpoint. So they, their point has been it’s important for people to get used to hearing the word Alzheimer’s, to say Alzheimer’s, to not be scared of it, and there are a lot of people in that kind of philosophy around the country. Now the term Memory Café, when I started our café, I thought about the two options, and I came down on the side of Memory Café for a few reasons. One is that not everybody who comes has Alzheimer’s. So Alzheimer’s represents about sixty to eighty percent of cases of dementia. So that’s a lot of people who don’t have Alzheimer’s, twenty to forty percent, and my guess is it might be on the higher end of that because some of the conditions, some of the other conditions are very, very underdiagnosed, and I know we.
For example, at JF & CS, we have a big Parkinson’s family support program, and a lot of people with Parkinson’s develop a form of dementia, and I’ve had the chance to ask, you know, “If you see the name Alzheimer’s, do you think of that as being a program for you?” And they say no. So Alzheimer’s really, it’s a specific disease. It’s not really an umbrella term.
Memory is not only non-disease specific. It’s not even a medical term. It’s something we all share. We all have memories, and I think it’s a less threatening term for people who haven’t been diagnosed or people who really aren’t comfortable with it. And I even recently spoke with someone whose mother lives in New Hampshire where the cafés are called Alzheimer’s Café, and I don’t mean any disrespect to my great friends running those cafés who were very helpful to me when I was getting started, but in this particular case, this person wouldn’t go because it said Alzheimer’s. So something to think about. Again, there’s no right or wrong answer there. These are some of the ways that a network can help. At each of our meetings, we have someone present a different café. So we get a chance to learn from models other than our own. We really help each other with technical issues, troubleshooting.
We establish the norms and standards that you have. We have the online cafe directory. We also have a guest artist directory, and I’m happy to share the link to that by e-mail, but it does tend to be a little bit Boston-area heavy. But I think there are people who would come to your area on that list as well. We’ve supported each other for grant applications. We help with public outreach with media and facilitating referrals I mentioned, and as a network, we really have a commitment to try encourage the development of cafés in diverse areas.
And as you see, when you look at this map where you see most of the cafés is suburbs, mostly predominately white suburbs, and these are communities that have the resources to kind of be self-starters, and say we heard about this. We want to do this. We have someone at our council on aging who has time. We have someone at our library. There are other communities that are very stressed, and they need some fundings to support, to be realistically to be able to start a program like this.
So we want to try to help as much as we can as a network so that everybody has access to cafés. Now one thing that I found is helpful at our Memory Café is to have some little props here and there to just help our volunteers and help our first-time guests interact with one another. And over here, I have some sample table topics, which you’re welcome to look at. We have these on each table every time, and some tables are just chatting away, and they just ignore their table topic. Other tables, people feel awkward, and especially the volunteer will say, hey, let’s, you know, look at this. So stigma we know makes everything harder. So, obviously, anyone living with one of these conditions that causes dementia is living with a number of challenges. Their thinker’s not working the way they remember. Their perception, their hearing, their vision. Lot of things have changed.
Daily life can become much more complicated, but then there’s this additional layer, and stigma is so significant that the 2012 World Alzheimer’s Report focused on it. That whole report is about stigma. Sixty percent of respondents to their study, which included 54 countries, said they have been avoided or treated differently because of their diagnosis. And our Memory Café, I’ve talked to multiple people who said to me once I was diagnosed, once my husband, once my mother, etc. was diagnosed, all her friends disappeared. And this is not because these are bad people or they don’t care. It’s because they don’t know what to do. They don’t know how to interact anymore.
It’s hard. They’re scared of the disease. Maybe they’re older themselves and feel at risk, and it’s threatening, and they just don’t know, you know. Should I talk to this person? Shouldn’t I? Am I bothering them? Are they going to remember me? What if they don’t remember me? If I see them, and they don’t know my name, what does that mean? Should I take it personally? What should, how should I interact with them? So this is what tends to happen. So for people with DD, I’ve been sort of posing this questions at these trainings, and with my colleagues, and asking do you find stigma, for example, at your day program, at a group home. When someone has dementia, are you seeing that their friends are avoiding them, or, you know, not wanting to be with them because their behaviors have changes or maybe are a little odd? And what I’m hearing is it’s not really stigma, but there is a need for information.
There’s a need for help understanding what is different, what’s go, what’s changed with my friend, and how do I help them. And I just, I Googled, I poached around a little bit, and I found this very nice training done in the U.K. So she has this really cool accent, but you can find this. It’s, the training’s called “Understanding Dementia Workshop for People with a Learning Disability” because in the U.K., they don’t use the term developmental disability. They use the term learning disability. But, so there are lots of resources, but I think many times to do some kind of orientation or training can be helpful for peers. Thank you for suggesting “Down’s Syndrome Scotland” as a resource for some of the materials that can be used in providing education to peers with DD about dementia, and the comment that it’s important to be able to provide that information and training in the moment when it’s needed, when people are able to benefit from it. So there may be formal training. There may be an ongoing support group. And one thing I will say about Memory Cafés is that a nice thing about the model is that they do informally function as a training and awareness raising opportunity.
So when people with dementia come and care partners come, and we are providing activities and facilitation that’s very attuned to different cognitive needs, we’re essentially modeling what they can do at home, and we do tell them “Try this at home.” So that kind of interaction and learning can actually happen at the Memory Café as well. So key Memory Café ingredients. The space is easy to maneuver with clear signage, and we’ve talked about the value of having images as well as words. Family bathrooms are a big plus if you have one. We don’t at JF & CS. You know, you probably either have it, or you don’t, but it is really helpful for mixed-gender partner groups to be able to use one bathroom if possible, and sometimes people will just turn a bathroom into a family bathroom for the course of a program if you can.
We’ve talked about the importance of enough volunteers and staff to greet everyone and help them stay engaged, and I usually with our volunteers, I’ll assign them different roles. I’ll have a couple of volunteers at our registration desk, and I’ll have a volunteer by the coat rack and one who’s the greeter. You know, if you go into the Gap, someone comes rushing up to you to ask you can I help you. And so we have somebody at our Memory Café who’s really assigned to be the greeter and have a big smile and just help people figure out where in this big room they need to be. Information resources are available for those who seek them but can be avoided by those who don’t. So, you know, I felt kind of a tension around this in the early months of the cafe that I run because I had a commitment not to, you know, throw the word dementia or the word Alzheimer’s out there in the space unless the guests brought it up first.
But, yet, I recognized that for some of our guests, this was their first and only kind of activity, dipping the toe in the water of reaching out and getting some support and identifying publically as having some kind of cognitive change, and they needed a way to learn more if they wanted to. So my compromise was this information table over here in the corner, and you can’t see it, but there’s a bulletin board that leans against this wall, and on the bulletin board, I have flyers from many Memory Cafés and other selected activities that seem really in keeping philosophically with the Memory Café.
I have my business cards on the table and a few other items, and it’s often the care partners that go up and take a look through those things. People who are not looking for that, don’t want to think about it, they just walk right by it. So that’s worked out well. The facilitators set a tone of dignified playfulness. Now let me just back up and say not every café has formal programming. There are cafés where people come and just sit and talk. It depends on your guests, and you’re going to want to find out from them what they want and kind of reassess that as you go, but at our café and many of the cafés, there is a guest facilitator who does something usually arts related. And in those cases, it’s very important to anticipate the fact that at least, you know, older adults and those of you who work with people with DD, you can tell me what are kind of the hot buttons or what your clients have their antenna up looking for. But the people that I typically work with, their antenna are up looking to make sure nothing feels infantilizing.
They don’t want to feel they are being treated like children. They don’t want to do any activity that feels childlike. However, I will say as an adult, you know, I’m almost 48, I need to play, too. We all do. We need to play. We need to laugh. We need to let our hair down and just relax. So how do you kind of get people to open up without making them feel infantilized? What I have found is that the very best facilitators, they ground what they’re doing in some kind of tradition. They kind of anchor it to something that feels very adult, and then with that, people feel comfortable, and then they can just explore. So, for example, I have gone through a training for a program called timeslips, which is a wonderful storytelling program geared to people with dementia developed by theater professor Ann Basting in Wisconsin, and that’s on your resource list as the end. In any case, when I do a timeslip session at our Memory Café, I start with a very brief slideshow.
It’s maybe five slides that talk about storytelling throughout the ages in different parts of the world, and then I’ve got quotes from a couple of authors talking about storytelling and how important it is, and that just does the trick. You know, it reminds us that this is just about being human. Creativity, self-expression, this is about being human. This isn’t about being a kid. You know, it’s unfortunate that it seems once you reach high school, nobody lets you do this stuff anymore. It’s really our birthright as humans. So I think that dignified playfulness works, and then you see people after, you know, about twenty minutes, just having a ball, and one of these pictures is at our café. One is at Memory Connections Café, Brookline. And the facilitators offer many pathways to help guests feel successful. So whether you’re going to have guest facilitators or do it yourself, the same holds. Someone mentioned earlier about the table topics, that they’re multi-sensory, and that’s really very important.
The person you see in this picture is Jane Blair. She has an art education program called Art Matters, and you might think that having an art educator come in and talk about the history of artistic movements and show reproductions of famous artworks, you might think that that wouldn’t be so digestible for a lot of people with dementia. She is one of the absolute Memory Café favorites. So what she’ll do, she’ll hold up a reproduction, and she’ll talk a little bit about the artist and the social movement that they were a part of, and she’ll say “What do you smell here.” “What do you feel?” “What do you hear in this picture?” And she’ll tap into those different senses, and everybody gets involved in some way. People who are not speaking. It may be nodding. It may be gesturing, but she has the whole room part of that conversation. And, you know, we have many facilitators who’ve never worked with people with dementia but who really want to try it, who are really interested, and they’re open to getting a little bit of coaching and hearing some tips.
I have a little tip sheet, and then sometimes they come to another café session to see it in action, and that’s all it takes. I think it’s more about the passion and the interest to try it. So the environment is normalizing, not clinical. We’ve talked about that, and this quote is from Jyttle Lokvig who started the Memory Café in Santa Fe, which was the first Alzheimer’s Café in the U.S., and she says the best cafés are those where you can’t tell who has the diagnosis and who doesn’t, and that’s really true, and it’s quite amazing.
Every Memory Café is different, and what they should be based on is the people that come to them, and that means they’re not static. They have to evolve over time sometimes, and, again, Massachusetts is the first state in the nation to take this on, trying to create these integrated Memory Cafés. So this is a grand experiment. We don’t know for sure how this will play out. The assumption, and I think it’s well founded, is that there can be ways of interacting together at a café that will work for everybody who comes. I think we’ll have to see what that looks like, and café coordinators are going to have to experiment. Do you think, so the people that you have in mind, do you think that they could respond to a question like what is, you know, kindness? Say something about kindness – >> Some people can – >> Some people can, and some people can’t, and that’s true with people who come to, for example, my Memory Café.
Some really are not verbal, and some, what I like about having a different something planned each month is that different activities bring different people out. What I had learned is that it’s nice for people to sit at the round tables when they come in and have their coffee, and we spend our first half hour that way. Just letting people filter in and sit and eat and chat, but then when we want them to feel like a group and to participate, I invite them to come into this circle of chairs. And it’s funny during our first year, I noticed that some sessions seemed to really get people participating much more than others, and I was trying to figure out why, and then I realized it was because those were the sessions where the facilitator had said to me I need a circle of chairs.
I need people to move into the chairs. I never kind of wanted to make people move, you know. Some of them have mobility challenges, and it just felt like, oh, make them move, but it really makes a hundred percent difference when they’re there together in the small group. And some people choose not to, and that’s absolutely fine. So it also means there’s a little bit of a quieter area in back for people who just really, really don’t want to participate, and I would say of the, I’ve maybe led 26 café sessions by now, only once has there been a time where there were a couple of people who really didn’t want to be a part of the group activity. So that’s rare, but it’s nice to have a protected area. There was a request at the last training to actually give you a picture of what a café looks like from start to finish, kind of what the physical space looks like.
What all the different pieces are. So at our café last, earlier in March, I took some pictures. So we have a slide up on our screen, a welcome slide at the beginning with the date. There’s a sign that we have in the hallway. So you could put in a request for money to make a sign like this that you can use again and again. (audience): They may even have an easel (inaudible) That’s right, yup.
So people come in, we have volunteers at our table here in front. We do have sponsors many months, which helps offset the costs, and I’ll talk more about that in a minute, but we have a thank you to our sponsors, and we have some forms here. So people who have been there before and signed our mailing list, there name is on a list, and the volunteer will just check them off. And then for people who are there the time, they get a little handout which just has a welcome letter and some basic information, and then they fill out the mailing list registration form, and we also have a photo and video waiver, and at first, I was hesitant to ask people to complete one of those. I thought people might feel very protective of their privacy coming to a program like this, but over time, I found that almost no one declined.
There’s just one couple that’s ever said no, and it’s fine. If someone says no, that’s fine, but I bring my camera every month, and I take a few pictures, and then I send out a mailing for the next month, and I include a few of the photos, and most of the photos are from a distance, and they’re the backs of people’s heads. So you just get a feeling for the room. If I’m ever going to use a photo that really shows who the person is, I get their permission again for that particular use beyond them having signed the release. So that’s kind of the nuts and bolts at the beginning, and then as I mentioned, people come and sit at the roundtables. We have coffee and refreshments set up in the back. We have soft music playing, and then after about a half hour, I invite them to come sit in the circle, and we do whatever we do for usually 45 minutes.
Sometimes an hour, but I have our guest artist plan for 45 minutes. Usually, that’s long enough for people to sustain their focus, and what I tell our guest artists is that it’s not a performance. They are coming to facilitate something, and some people don’t want to do that. So that tends to be a good litmus test of whether this is the right thing for them or not. I do offer an honorarium, typically $100, and so I do extra fundraising to support that, but there are a lot of people who will do it for free. We always make sure whatever’s going on is very interactive. You know, I think we could have, you know, we could have Frank Sinatra himself at the Memory Café, and it wouldn’t people. People don’t want to sit and listen to a concert. They want to do something participatory. And then about a half hour at the end for people to mingle and have their coffee and snacks, and then at closing time until the next month, and then I do send out by e-mail and mail a reminder every month, and I also have a list of providers that I send the mailing to for every month.
Some cafés don’t list what the upcoming activity is on their flyer, and some of the flyers, as you have seen, have multiple sessions listed, which makes it easier because you only distribute the flyer once. I found some of our guests asked me, they said can you please include what the new activity is in the flyer because they want to be able to say to the person in their life we have to go today.
We have to get there because it’s our only chance to see so and so or do this. On the other side of it, if you list the activity, some people will opt out. They’ll say, well, that doesn’t sound like my thing. The day that we created some of these collages, there was one person who told me later I didn’t come that day because I don’t want to sit around and cut paper. You know, what can you do? You can also just factor in the amount of staff time that you have to manage this program, and you may not have time to create a specialized flyer each month. OK. So there are certain topics addressed in your handout, and they are in this order for a reason. Where, who, when, what, how. So I’d like to go through these and show you some pictures and examples of what other cafes have done. So as the realtors say, it’s location, location, location, and Memory Cafés have been held in all different kinds of spaces including coffee shops, museums, senior centers, community centers, churches.
There’s a church and a synagogue that I’ve had some conversations with the clergy and some of the congregants that have been thinking about creating an interfaith Memory Café that would meet for six months in one house of worship and then six months in the other because the church and the synagogue happen to be within a block of one another. So that’s a real interesting idea. The sky’s the limit really, and here on the left, you see a flyer from the Children’s Museum of New Hampshire, which has a long-running Memory Café, Alzheimer’s Café, and on the right, you see the Rest Stop Ranch in Topsfield, which is a seasonal outdoor Memory Café that meets in an accessible garden, and that café actually has had guests from the local Ark and other programs for people with disabilities from the start.
OK. So some of the things to consider, and this is all written in your planning worksheet. Is the space available for free? You know, is it a space that’s part of the organization you work for, or can it be donated free? Town library, etc. Convenience of the location for staff, guests, volunteers. It’s wonderful to have a Memory Café in an exciting community space like a museum. It also means you’re going to need to be bringing stuff there each time. So it’s a little bit of a consideration. How’s the location viewed by potential guests? Is it strongly associated with one sector of the population? So if you are working on creating a Memory Café that will serve these people with dementia with or without a developmental disability, and you hold it in an agency that is for people with disabilities, or you hold it at a senior center, how, what are you going to do to make sure that the other population feels welcome? You can accomplish that through partnerships, through strong referral networks, but it’s just something to think about.
Is it seen as a clinical space or a social space? So when I started our café, I actually wanted to have it at a restaurant or a coffee shop, and I looked around, and I wasn’t able to find a place close enough to our office that really had all the right characteristics. You know, parking. That’s the thing that kills us where we are. So in the end, we opted to have it at JF and CS, and it just means, you know, a lot of little props. So who, so guests. We talked about this a little. How will they view the location? What name would appeal to them? Key referral sources, and just to circle back to co-sponsorships, I think, you know, many times when you approach someone for a possible co-sponsorship, their first question is “What’s it going to cost me?” and we all work on a shoestring, but I think sometimes you can ask for a promotional partnership where say what we want is to put your name on our literature.
We want your input, and we want you to share this information with your mailing list, and it gives you a way to sort of set the right tone for your café in terms of who is included. Who is welcome? Who is encouraged to participate? And it helps you get the word out. So it’s very valuable to you, and for the other agency, it’s not very difficult for them. So, and they may become a more active partner as the program develops and get more involved, but at this point, you’ve got an RFR deadline right around the corner, and there just may not be time for that, but if you approach them, and you let them know about the model, and you came to this workshop, and the idea is partnerships between aging and disability services, and what you’re looking for is a promotional partner, that can work, and I tend to put it in writing.
This is what I’m asking for. This is what I’m offering just so it’s very clear. So it’s well worth doing. I find often, you know, once someone puts their name on something, they’re invested in it, and that’s what you want. You want their investment. You want their creative thinking. You want them to really care about getting the word out to their mailing list. So, again, I do think it’s a really good idea, whatever decisions you make, write up your basic information, and share it with referral sources, and these are sort of my two golden rules. If you want to bring a group, you have to talk to me first, and those who need personal care assistance must bring a care partner. With those, you’re kind of covered for a wide, wide range of potential issues. OK. So volunteers. This is also within the who category. What are their needs and interests? What sort of training do they need? Make sure they understand the role. Now I have found the single best thing to say to potential volunteers is the following. It’s like hosting a party. Now some potential volunteers say, wow, that sounds great.
That sounds like so much fun. When can I start? And others say “Ugh, I don’t want to do that. Can’t you give me a task? You know, I’d be happy to stuff envelopes. I’d be happy to help make something.” You know, they really want something to do for somebody. So for those folks, the Memory Café is not their gig. I have found that our volunteers from Brandeis have not needed a lot of training. I have a tip sheet, and that’s one of those handouts that’s floating around in your packet. Mostly, they just need that desire to be in that kind of environment and that they’re willing to see themselves as a cohost. So that means they’re friendly. When people walk in, they offer to help them just find the coat rack, to know that there’s coffee available. They might offer to refill somebody’s cup of tea.
Little things like that. No personal care assistance, but those kind of hosting things, and most importantly, they are keeping an eye out for people who look like they need somebody to talk to, and they’re comfortable sitting down and introducing themselves and starting some kind of interaction. So beyond that, they need some basic information about dementia and how to communicate with those who have dementia, but it’s not so difficult. Now your volunteers might need a lot more training than that. It just depends who they are and where they’re coming from. Most of our Brandeis volunteers are part of a program where they’ve already been working and volunteering with older adults in other settings.
So this is an interest of theirs. They know something about it. They have those social skills that would be relevant here. Depending where your volunteers are coming from, you might need to offer some more formal training. And, again, then you really as a program, you have another outcome, which is the teaching, the learning that the volunteers gain, which helps to decrease social stigma. OK. Can volunteers run a Memory Café? They, that, this has happened. So the Norwood Café was started and is spearheaded by a woman who does it as volunteer. She’s the world’s best networker, and she’s partnered with her Council on Aging, a million businesses and other providers in her community. So she really has a lot of institutional support, and around the country, the experience has been that cafés that are started by volunteers but that don’t have the support of someone in a paid position, tend not to last just because it’s hard month after month to keep running the show.
OK. When cafés are held? We’ve talked about this a little bit, and I think, you know, first, you have to consider what works for the space. So parking, for example, you don’t want to be competing with, you know, 2,000 staff members who are trying to park. What works for prospective guests in terms of their needs and their schedules, and prospective volunteers? Most cafés are an hour and a half to two hours monthly. Our café’s two hours. That is the most typical amount of time, and I think an hour and a half feels a little short. They can be on a weekday or a weekend, morning or afternoon. We talked a little bit about the importance of coordinating the day and the time with other nearby cafés, and if you go to that website, JF and CS Boston Memory Café directory, you’ll see all the existing cafés and where they are, and, again, please, when you start your café, contact me. Give me your information, and we’ll add it to that list.
Alright. What This is my very favorite topic. What are you going to do at your café, and I think all these other questions, where it’s held, who’s coming, when it’s held, they sort of naturally lead into this question of what are you going to do, but I’ll give you some examples from around the country. This is the Memory Arts Café in Brooklyn, and this is Gary Glazner from the Alzheimer’s Poetry Project. He coordinates this café. So they’ve got professional artists facilitating their café. It’s very, you know, amazing artists come and do really interesting diverse activities. And then on the other end of the spectrum in terms of style, this is the Upper Valley Memory Café in Dartmouth, New Hampshire, and a lot of the people who come are retired faculty or in some other way were associated with the University, and they like to have lectures.
So they like to sit and have a speaker and have some kind of informational presentation. This is the Memory Care Café in San Francisco. This is a café designated for people with early or mild dementia, and they do outings. So look at that spot. It’s beautiful. We don’t have anything in Waltham that quite looks like they, but they go to all kinds of places. That’s what they do. Their model is based on a program called Dementia Adventures in the U.K. Really interesting. You can Google that, Dementia Adventures. That’s all about travel and outdoor activities. Now as I had mentioned before, you don’t have to have a lot of formal programming, and there are many cafés that do inexpensive, simple things like these bad joke times.
So this is a favorite thing of the cafés in Wisconsin, and I realize I have to clarify. I don’t mean, you know, dirty jokes, but silly jokes, and I even had a few, like, where do cows go on a first date. To the moovies, OK, ba da ba. So they start every café with silly jokes like that, and they invite people to tell their own, and people start bringing them, and, you know. So it definitely gets people laughing. You can share photos, scrapbooks, holiday or seasonal theme days.
Depending on your guests and where they come from in the world, for people who are coming from different countries or different cultures, there’s so many special days related to their countries of origin. You can have food appropriate to that. Wonderful to share those cultures with guests who are from other places. So that, in itself, that could be your activity. Soft background music, coffee and conversation. When I was doing research before starting our café in Waltham, I talked to the coordinator of a café up in New Hampshire, and she said that they had a few sessions, and then she hired a musician to come in and do a singing activity, and after that, the guests took her aside, and they said, “You know, honey, we appreciate it. We appreciate what you’re trying to do for us, but we don’t want any of that. We just want to sit and talk with our friends.” So that café, that’s what they do. They just sit and have coffee and catch up for an hour and a half, two hours. So it’s really important that you go into this with a sense of flexibility, try something, and talk to the people who come and see what they think.
Watch their faces. You know, whatever you can do to try to get some feedback to see what’s clicking and what isn’t. So the nuts and bolts. Let’s talk about money. Everybody’s favorite subject. So in your packet, you have a sample Memory Café budget. It really varies depending on all these other factors. For example, the café in San Francisco that does outings, that’s going to be a more expensive model because you have to factor in transportation and entrance fees in some cases. So, you know, that would be an expensive model.
On the other end of the spectrum would be the café that’s run at a restaurant or a coffee shop would be probably the least expensive. In this sample budget, what I had put in is about two to $3,000 startup expenses, most of which is staff time really for planning, and then about six to $10,000 annual operating expenses, and, again, it’s the staff time that’s the biggest single line item. You have the handout that we talked about a little bit with a list of possible purchases. Over here, this is the Norwood Memory Café, and she gets her food donated. The, a lot of companies are willing to provide in-kind donations if you ask, if you set that up. This is the Memory Connections Café. You can see their very expensive sign here. So just to make the point that it doesn’t have to be expensive. It’s really more about the bringing the people together.
And sources of ongoing support. So it’s a great opportunity to have a business sponsorship program. So I started one of these for our café about a year and a half ago, and I ask for $175 to cover the guest artist honorarium and the food for that month, and I have this in writing. I think that’s really important to tell them what I’m asking for and what I’m giving. So I put a thank you sign on our refreshment table and a sign on our registration table. I thank the sponsor from the podium, and they can bring some brochures to put on our literature table, and that’s it. We never want people to feel marketed to when they come for the café, but it’s been wonderful. There have been many wonderful businesses that have participated.
The majority are home health providers. I’m excited that a couple of restaurants have sponsored as well, and I really do see it as another way to be moving toward a more dementia friendly community by spreading the word about, gee, there are people living among us who have dementia, and they have a life, and they need to, you know, be social and have fun, and they need to go to restaurants and supermarkets and businesses like yours. So you can show your support by sponsoring a café session, and you can, oftentimes, the sponsor will send somebody to that café session, which is wonderful because they see it in action. Gee, they learn something new about dementia. They learn about how people with dementia are alive and living life and vibrant and contributing, which, you know, frankly, counters the stereotype that is out there for so many people.
So business sponsorship is a nice opportunity. You could also have a sponsorship in honor of someone or in memory of someone. I think a café session is a real nice thing to do that with. Theme models. So that Memory Care Café with the outings started as a fee-for program and then they were able to raise enough support through corporate sponsorships to be able to be offered free. Local clubs and town foundations can offer support. So Rotary in the United Kingdom has been absolutely instrumental in helping Memory Cafés spread in that part of the world. They have a group called REPOD, which is Rotarians Easing Problems of Dementia, and they have been amazing with regard to Memory Cafés. So you can contact your local Rotary and say, “Hey, you know, across the pond, they’re really helping.
Maybe you would want to help our cafe here,” and there are other clubs. Every town has some, every city. So that’s something to think about. And you can seek in kind donations – food, decorations, materials, etc. OK. Let’s talk about communication. So I think one of the biggest challenges of starting a new café is getting the word out. You know, people hear about Memory Cafés, and they say what is that. They have no idea. They’ve never heard of it before. So you will find some adventuresome types who hear about it, and they say, well, I want to try that, but there are a lot of other people who will have to hear about it two, three, four times.
Now I think it’s entirely possible that it’s going to be easier to get the word out to people with dementia who have DD because many of them are part of more formal service networks. So the people who tradition-, who right now are mostly being served by Memory Cafés, many of them are not really connected with any formal service network, and they’re living in a house or an apartment someplace, and there’s no easy way to reach them and let them know about this. So the existing Memory Cafés have done a lot of outreach through cable TV and through town newspapers, things like that.
I think for bringing in guests with developmental disabilities, it may be easier to reach people through the services that they’re already hooked up with. But in any case, I would say it takes three to six months to build attendance. What I found with our café was that people would come, they’d like it, they’d tell their friends, and they would tell their neurologist or their primary care doctor eventually, and then referrals would start coming, usually from the social worker or the nurse practitioner at the medical practice. So it took a good six months for that cycle to really get established. So we had on our first café session, we had two dozen people, which was great.
On our third session, we had six. It was very discouraging. I had 13 volunteers there that day and six guests, and I thought maybe this isn’t something people want. Maybe they don’t need it, but that wasn’t the case. It just took time. In terms of attendance, it really varies. The Create a Better Day Café, which is held in a house, it’s a much smaller kind of a setting. They usually have, you know, a dozen people, maybe 15, maybe 20 at the most. Our café, we usually get 25 to 35 plus we’ll have, you know, 10 or a dozen volunteers. So that’s definitely one of the bigger ones. So, and then everything in between. The Rest Stop Ranch in Topsfield, which is the outdoor seasonal café, they can only have a maximum of ten participants each time.
That’s all that they have space for. So it just really varies. So, again, the network can help. One of the things we’ve been able to do as a network, we had a reporter from the “Wicked Local” which is the, they run the media for almost all of the town papers. So a reporter came, did an article on Memory Cafés, and then the coordinators in the different towns contacted the editor of their town or city paper and said would you please run this article, plus add in a little bit about the café we have right here in town. So that was great. And, you know, this flyer here, which is over on the table, this is a flyer that advertises our whole network, and we have one with little pull-off tabs. So we try to do things like that to really help all of the cafes get the word out. And keeping in touch. Once you get started, you’re going to need a way to keep in touch with your participants through some kind of mailing list, and you want to think about the data elements you want to collect.
You want to think about how you’re going to communicate with folks and also what information you might need when you’re evaluating your program down the line. At the minimum, you’re going to want the information that you need in order to communicate with people. So e-mail address, mailing address, whatever fits for them, energy contact person. We have a check box.
Do you want information by e-mail, by regular mail, or both? And date of birth is really useful because often you’re going to want to know something about the average age of your participants. As you’re thinking about your mailing list form, you could ask a question, you know, what do you hope to get out of coming to the Memory Café, or what are the main things you’re looking for, and you can have a few options. You know, meeting other people, getting out of the house, trying something creative, what have you. That way, you’re learning something about what’s important to people and later you can evaluate based on those, you know. To what extent, you know, strongly agree to strongly disagree, I meet new people at the Memory Café, etc. So that’s something to think about, and, of course, it’s so important to think about the language that’s going to be under, comprehensible to the people who are coming and what format you want. You know, eventually, rather than using a numbered scale, you may use happy face scale, and you don’t want this to feel overwhelming or burdensome. At JF and CS, we have a whole list of demographic questions that all programs in our agency ask for all of our programs.
So knowing that, that I’ve got a whole backside of my form with all these demographic questions I kept the Memory Café stuff very, very brief. So these are all considerations, but you are going to need a way to communicate with people. For one thing, you’re going to have weather cancellations once in a while. We had one this year. We had one last year. I mean, it just happens, and every once in a while, you’ll have to change the date because of a holiday or an issue. So it’s important to have a way, and also people do need reminders. You know, you work hard to get the word out, and get people to come and try it, and you don’t want to lose those folks just because they need that little prompt to remember that the café is happening next week. And now another variable is whether you would want your café to require an RSVP, and there’s pros and cons, and I’d say about half do, half don’t. An RSVP will let you plan better. Maybe it can help you communicate better with people who are coming if you need to.
If you have very limited space, like the café in Topsfield, where you are doing outings or some other complicated activity, you just need RSVP’s, but it is one more layer to manage for staff. And, interestingly, we had a conversation about this among some café coordinators last week, and what many people said is, you know, even when I ask for RSVP’s, people show up who didn’t RSVP, and people who did RSVP aren’t able to come at the last minute. I mean, the nature of dementia is that you may start your day with the intention to go to this program that you’ve had on your calendar for three weeks, and then that’s just not a good day, and it’s just not going to happen. So, you know, I think that it just depends on what you want to try. You can also say “RSVPs requested but drop-ins welcome”.
So it just depends on your site. I will say every month, you know, I feel a little bit of nervous excitement, like, somebody having a party. You know, is anybody going to show up, who’s going to show up. It’s always a little bit scary offering a drop-in program, but over time, I just have found we got more or less 25 to 35, people plus our volunteers. It just, you know, it’s rarely less or more than that, and, again, if I were asking for RSVPs, it would be an additional task to manage, and I’m not really sure it would make that much difference in that element of surprise anyway. I think it’s really important on your flyer, especially if you’re a drop-in program, but really even if you require an RSVP, say something like this. The Whatever Café is usually held on the first Thursday of the month, whatever it is.
You know, call or e-mail for exact dates because we have had the experience in the café network of a café not being open on its usual date for whatever reason, and people showing up anyway. So we went through the online directory, and we changed the information for each café to add that word usually rather than saying, you know, the first Thursday of the month. So I think it’s important just to anticipate that issue. OK. So evaluation. We wanted to talk about this a little bit more, and as we talked about, you want to ask volunteers and staff for their input as well. So at my café, we have done this once. We’re about to do our second survey, and for our guests, I have it on paper and I also have a Survey Monkey version. So I e-mail it and I have it available at the café on paper. For our students, they don’t know what paper is anymore. The scary thing is most of them don’t even really use e-mail. They use all kinds of social media that I don’t know how to use.
So, yeah, I, it’s not fair, but. So they get just the online Survey Monkey. And one thing that has been good with that survey is to ask the students about their experiences, what they’re learning from it, but also to ask them about their observation of the guests. So we’ve asked them, for example, what kinds of activities do you feel have been the most energizing for guests. So we get another take on what’s happening in the room from our volunteers. And as Christine mentioned, you learn different things from quantitative and qualitative techniques, and it’s really great if you’re able to do a few in-depth interviews with guests as well as having a survey of some sort. So I did that with some of our guests. And so I just put on the survey are you, you know, check this off if you’re interested in having a longer conversation with a coordinator, and a couple of people said yes, and that was great.
I really learned a lot from those conversations. So evaluation starts at the beginning. So you just want to be thinking about that now. And then just, you know, in the future, as Laney mentioned, hopefully we’ll get to a point where some academic person will take this on as a bigger project to really assess the impact of the Memory Café model, and maybe, and our region will be part of this, and cafés will collect some consistent data elements, and then we can really learn more. And that’s always important for a model that is going to spread, and potentially be able to tap into other sources of funding support.
Who knows? Maybe be reimbursable one day. We can dream. But to do that, we really have to be able to quantify the impact of the café experience in some way. It’s a lot of information to absorb. So thank you so much for being here, and for being interested in doing this and taking the time and putting the thought into it. It’s really so exciting to see the spark of cafés that are, I know are going to develop both in terms of new geographic areas and in terms of including people with developmental disabilities. It’s really just wonderful. And then just to end with a quote. Rabbi Dayle Friedman does a lot of work with people with dementia, and I think this quote goes to the work that all of you do.
“As we learn from those we accompany that the human being is more than intellect, more than memory, even more than cognition, we learn that we are, too. We learn to value ourselves for our very essence.” So I think that’s the gift that’s available to all of you as professionals doing this very, very hard and valuable work day after day. So thank you so much for being here, and thank you to DDS. >> Thank you. >> Thank you for watching the Memory Café webinar training.
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