it's my delight to share with you our second show called caring for others caring for ourselves the focus of tonight's show is really exciting it's called the memory cafe movement in massachusetts i welcome the audience and i also welcome our panelists from left to right we have beth salzberg who manages the all simers related disorders family support program at the jewish family and children's services in waltham we also have with us jamie donation who is a licensed social worker for the brookline council on aging home care program she also facilitates two programs memory connections cafe and also continuing connections we have a third panelists darcy morales ullo who's a social worker and a caregiver for her ninety three year old dad in participates regularly in the memory cafe finally we have ariel keller who is a senior at brandeis university university majoring in neuroscience and psychology she's also founder of c s students to end all timers disease so it's my delight as i said to have you join us tonight as we explore innovations in caregiving support programs focusing on the memory cafe as a model and the memory cafe as movement beth we'll start with you if you could set the stage for us that would be great we'd like  to tell us a little bit about memory cafes and the movement that seems to be spreading across massachusetts you've become known as the guru of memory cafes so paint a picture for us what is a memory caf for those who have been banned what does one look like sure memory caf is a welcoming social gathering for people living with dementia and their care partners and when i say dimension i'm talking about a group of symptoms that often includes memory loss and thinking changes it can be caused by all simers disease that's the most common cause it could be caused by a number of other conditions such as vascular dementia frontotemporal degeneration parkinson's disease there are several so i just want to provide that framework because memory cafes are programs for people with any type of condition that causes these thinking changes and also for the people in their lives when someone develops these kinds of memory and cognitive changes often it becomes difficult to do the activities that they used to enjoy and sometimes even if they can do those things they start to feel uncomfortable because unfortunately there's there's stigma oftentimes there's a lack of understanding about just simple ways that a person with dementia can get a little bit of support to be able to for example go out to eat and handle ordering from a menu and  financial transactions what tends to happen is people can become isolated and keep people in their life may become isolated along with them so memory cafes really have the goal of giving people a chance to be together with others in an environment that stigma free and really welcoming and is designed to help them how fun and for those who come with care partners which which could be a spouse or children or friends to really help recharge that relationship because it's nice to do something fun together sometimes not just to go to the doctor be focused on problems and just one last piece is the memory cafe's are for people whose thinking changes can be very mild all the way through people who have very advanced symptoms great paint a picture for us now if we were to walk into a memory cafe what would it look like especially yours in waltham so we're opening the door and what what do you see while you come in and you see a lot of smiling faces you might see our yell at the j f n c s memory cafe and wall family have a partnership with brandeis university so we have college students co hosting with us each month so you'll see people of different ages you will be welcomed just as if you were coming to a party someone will show you where to put your code where to get a cup of coffee you'll see tables with flowers decorations there'll be soft music playing in the background and like most of the memory cafes our cafe has open time just for socializing and then we also have some programming and we have a guest artist every month it could be a poet or a dancer or musician a visual artist an art educator and  so part of the time is spent with that person but it's not a performance that they do they facilitate something that we all participate in and that really it's it's challenge and fun to  people with coming from any cognitive level and it's a way that people in the group start laughing and smiling and it reminds us we're just all human beings together so most of the cafes around greater boston and around the country are similar in that they have often have some kind of programming but beyond that they're all different there's one in the end topsfield that meets outside in the warm weather and involves spending time in a garden so they're just as distinctive as your neighborhood coffee shop and such an exciting model i know when i was there in waltham it was a safe environment easily everyone was participating you know in creating poetry one night one day another day you know doing music together so let me ask you how did you first hear about the memory cafe model and why did you think it might work here in massachusetts i learned about memory cafes through some internet research in spring twenty thirteen and started reaching out to cafe coordinators in different parts of the country and one of the things that grabbed me right away is that everyone was so excited to share what they had learned and to send me materials you know i would call for example there were a couple of memory cafes in new hampshire and i would call the coordinators and say do you have five minutes can i ask you a few questions and they say why don't we send you everything we know we're happy to you know we just want to see these proliferate so i realize this is a grassroots movement it's something that has a lot of value as part of the constellation of services that's available it's not the same as a support group it doesn't take the place of a support group it's not the same as a formal day program it doesn't take its place it's just one more type of program greene so it sounds like you you know you talk to other folks to get a sense of what was working elsewhere and then you saw that it could work here what were some of the opportunities but also some of the challenges that you faced when you took the next step starting to implemented here in massachusetts yeah well our cafe in law fam was not the first the first memory cafe message to citizen marber oh the griot a better day cafe was the pioneer and is the longest running in our state and yeah the concept was very new when our cafe started in wall fan two years ago and one of the biggest challenges really was getting the word out to people who might benefit from coming i think when there is a new type of program people hear about it and they don't really know what it is and it's sort of intimidating to go try it so it took several months for that word of mouth to build up and people to start bringing their friends but once that happened we have a full house every month and we have a great time so what has worked particularly well you know what have been some of the changes that you've made would use face certain challenges what tweaks have you how is it evolved from that beginning point yeah well i think because every cafe is different and there really they really should be rooted in their local community it's important to get to know the guests and respond to the guests in terms of what they want so i experimented at the beginning i thought maybe people would like to just sit and chat and not have formal programming and they let me know no they definitely like to have something planned their other cafes around the country that i know of where the guests have said the opposite they've said we just want to sit and have coffee we want to catch up with our friends from last month and we really don't want to have something formal so i think for those starting a cafe it's good to be real flexible and make sure that you're in communication with the people who are attending i love that and so you're getting the feedback and it's growing organically the that feedback that you receive yeah great yeah so so rumor has it that it's proliferating across massachusetts and actually across the nation and i hear that the government is getting involved the state government is actually funding available  know so that it can start to reach out to other populations can you speak bit about that in your role sure and even to take it a step back farther the first cafe began in holland in one thousand nine hundred seven so this is an international movement and in some parts of the world there are many many memory cafes or in some cases they're called also timers cafes in the united states there's about two hundred across the country and as you mentioned massachusetts is really becoming a center for this type of program there are ten in greater boston now there's two more about to start in belmont right here and newton both scheduled to start this spring which is very exciting and it's really important that this model be available in many many geographic communities and cultural communities and language communities so we hope that there will be cafes starting in the city of boston we hope that before long there will be spanish speaking cafes there can be cafes of other languages doesn't have to be called memory caf it can be called whatever fits for that community but i think that for a lot of people it's really more it's very comfortable to have an environment you can go to and meet peers meet others living with dementia meet other care partners exchange information informally and we want that to be available to a wide range of people and as you mentioned our department of developmental services has gotten involved because people with developmental disabilities now are living much longer than in the past so our society as a whole we've seen life expectancy increase we have an aging population and that change has been even steeper for people with intellectual or more broadly developmental disabilities and so those folks now are age into developing dementia so we're really looking at how to make sure that they have cafes as well wonderful finally before we it up to others as well and for the discussion what surprise is what has surprised you most i guess about the memory cafe experience since it's been evolving here you know i think i'm always surprised to see and very moved to see how special it is for the the pairs the individuals with dementia and close person who they attend with a parent and a child or a couple you know for the couples it's like going out on a date for the pair and the child it's how it's a really special time together and what i've come to realize is that it's actually a form of respite it's not not the kind that we often think of where the caregiver gets time on their own and that's also vitally important you need both it's not either or but i think people who are involved with someone day to day who has a progressive chronic illness and that person with a progressive chronic illness they need time to enjoy their relationship and kind of recharge it and i see that happening at the memory caf i see people holding hands i see arms go around each other and it's it's so inspiring it is  thank you well we'll come back to you in a moment or two but i'd like to hear a little bit from the rest of you we'll start with yes yes how did you get involved in the memory cafe movement and what role do you play in proliferating these memory cafes in your communities or so i actually am involved in two different communities as a social worker one for the brookline senior center and the other for the framingham senior center  actually knew what memory cafe is more having spoken with beth and becoming involved in her percolator network of different providers i actually realize that i actually have been doing a memory cafe at framingham already  it's going on its fourth year now called continuing connections so it's a little bit more how is that similar and how is it maybe dissimilar to the memory cafe model or is so similar in terms of a social model where both parties can participate both the person w exercise chair volleyball field trips more much more structured but also similar as for brookline though after i got involved in the percolator network with beth i wanted to duplicate what i was doing in framingham in  brookline so i've been holding the memory connections cafe which is the fourth wednesday of the month one thirty to three thirty again similar structure with a social model people can come in and be welcomed i have icebreakers  and we're talking points for people to get to know one another and then there's some structured programming that changes month to month now you mentioned the percolator network should use a little bit more what that is and how you've benefited from it sure are short so it's  way of different products both professional and personal related to wanting to provide memory cafe is getting together a collaborative network to see how we can make these bigger and better great great thank you  so now we'll speak with darcy more i'll assume low can you speak a little bit about how you first heard about the memory cafe and what it's meant for you to be participating in it yes of course i'd be happy to and thank you for having us here to speak about memory cafes i learned about it through beth's group she has a support group for those of us who are caregivers and we've been part of it since as inception really she was discussing about starting it and waltham and what days to have it so we've been there from the very beginning my father lives with me i'm his full time caregiver my mom passed away to be five years next month and at that point i came to live with us and we're very active together and we're always looking for activities and what beth proposed was something that happened what i was interested in as brett's mentioned earlier respite is a huge part of a memory cafe for the caregiver has been my experience it's exhausting work and when dad and i go i know that dad is safe it's a beautiful environment everyone is warm and welcoming the guest artists are spectacular and i don't need to warre dad is safe in case anything happens dad there are others around us that can be of help and that's when beth comes into play with with arielle and other people there to help they take care of the care care for and that means everything to me because the very first time we visited here rolling deads in because we need a little bit of him praying a little bit of one thing it's paper and a little bit of care ourselves it's exhausting work and it's so nice to see dad interacting with each of the artists it speaks to languages english and spanish and beth goes beyond the beyond to accommodate dad he'll show off and tell the artist you know we have someone with speaks to languages and the artist usually incorporates some bit of spanish or a spanish song and or something to do with spanish in the presentation and it just makes my dad feel even more welcomed so i would were regulars there lovely  can you give an example of a particularly magical moment for you alone or for you and your dad or or for your dad alone but something that you've experienced or witnessed you know at the memory caf well we had a group of singers and they were singing a song in spanish but they weren't quite getting it right and dad piped up and he started singing and we all followed his lead so he really enjoyed being able to contribute absinthe his way and seeing people learning it how he was teaching it so to me once again i was very proud of dad dad loser happy to be part of it and a contributing member and it made i think that that was very comforting to the other person there with memory loss to see that a person with memory loss was leaving the group and and that it was a special time for me thank you sure i think that's really an important piece to this space is that it to me re stories integrity that's oftentimes lacking in other programs or other attempts to try to provide space for the caregiver and the individual living with the challenging conditions and here you say he actually was in a leadership position here in america today to weigh in a joyful way which i think is really remarkable aspect but it was something i forgot to to mentioned  the memory care for he does provide is time with peers most of my dad's friends have passed away my mom again who will be gone five years but there isn't a day that he doesn't ask for her so it's basically my dad and i always so it's an opportunity for him to be people with people his own age with other males females and i get to sit back and watch him interact and that's so important such a big piece of cafe can you tell the audience a little bit about you know how you first heard about the memory cafe and what you do there right right as you mentioned i was doing it brand ace and it was actually one of the professors at the school that introduced me to memory cafe first so she had been going for a while with her lab mates like everyone in her lab was going and they said come along with us and i went and i just i loved it i thought it was such a magical space and a great way to get involved with the community you know outside of a research lab about neuroscience you is seeing the actual you know manifestation of the disease and getting to know the people which i think is really important so at brandeis university i'm also a founder and president of a club called students and also our cities and i immediately thought that this cafe would be you for students to get involved directly and start to do some of that outreach that we all really want to start doing so what we did was he started getting a group together that would go on fridays and there was already another group from brandeis called companions to elders that was making regular trips to the memory cafe so we joined forces with them which is great and now we've got a bigger that goes all the time it's wonderful and so what kind of impact is it had on you i mean you speak about when you first got there and you know immediately you loved it and so over time how is it changed you it's definitely changed how i think about alzheimer's disease and other kinds of dementias because there's something so important about treating the whole person rather than just treating you know whatever's going wrong in their brain and understanding the profound impact that these kinds of social settings have on people and at first i thought you know it would be difficult to carry on a conversation and i think i was a little shy at first trying to carry a conversation with somebody where i wasn't asking about their past but i found that there was something really special about just forgetting about the past not planning the future and just being in that moment with the individual and just having a regular conversation and enjoying the art that was going on together so i really like the connections that i needed to people there so when you graduate will you carry some of this with you or or how will that impact do you see absolutely i am going to hopefully be doing my ph d in  neuroscience starting in the fall and i'm looking to study alzheimer's and memory and aging and all those kinds of things so it'll definitely impact how i think about the disease and also it's it's definitely had a lasting impact and how important i think the  outreach aspect is and i definitely am going to continue doing that and it's great to know that there are memory cafes all over the country that i can go and be a part of and hopefully spread some more some day three no i'd like to open it up for our in visioning of the future what advice would you give for communities and individuals starting to lead this in their community what suggestions do you have for them based on your experience based on some of the best practices that are out there we've talked a little bit about the impact it's had on us personally but now as a community what kind of resources does an organization and a group need to have let's beth why don't i start with you if someone were to replicate this model but at as you said make it uniquely their own where would they start how would they get information and what suggestions do you have for them i say i would say collaborate collaborate collaborate and know that there are a lot of people who would be very happy to share information there are tool kits that have been created about starting a memory cafe jamie had mentioned the percolator that's a quarterly gathering that meets in wall fan that i coordinate people either running them or a cafs are interested in starting one and we meet to help each other learn from each other each quarterly meeting begins with a different person doing a presentation about their memory caf which is always really fun and interesting and gives all of us a lot of new ideas so i know you have contact information at the end and i would just encourage those thinking about this to contact jamie contact me  contact coordinator of an existing cafe and say had like to come as a as a guest and check it out i would say every month we have a couple of people come to the wall fan cafe who are there because they're thinking about starting a cafe and that's really the best way to get a feel for it and then when you're ready to take the next step yeah as the real estate people say location location location i think that is going to  the tone for the gathering it's going perhaps dictate what kinds of activities take place for a time there was a memory cafe at the when a museum and cape band for example and so the activity involved spending time with the collection each month so location is often the first biggest question and it's a perfect question to spark collaboration who can you work with in your town that has a good space and how many different participants can you bring in so that it really feels like a town project jamie can you speak a little bit to your experience in terms of leveraging existing resources collaborating what has been you know you're involved in two different projects right so what advice do you give suggestions for going forward i've been very fortunate both organizations to have a lot of and kind resources but to second what beth was saying collaboration's are key no matter who it is knowing someone who even if it's just for one caf someone who will sponsor or refreshments let's say which you really don't need too much of you get a crowd of twenty or thirty  or someone who can sponsor the guest artist or even for the guest artists themselves knowing someone who would be interested in being a guest artist someone who invent a senior chorus  endorsing or or aren't therapist who might even do it for free not necessarily for a cost making those connections and networking six trimly important but i think also keeping in mind the goal of having those connections  making new connections being able to use the abilities that they still have taken singing and dancing and talking and talking about long term memories all of that stuff comes up a lot and it's really important to focus on all those factors great thank you so you mentioned cost so let's drill down a little bit here we've been speaking about collaboration's which is absolutely key and location what has been some of your experience with getting you know this funded how do communities manage that and what have been some of the challenges but also some of the opportunities i think one of the nice things about the memory cafe model is that it is fairly affordable it can be done quite inexpensively the the most inexpensive way to do it is if you can find a friendly coffee shop or restaurant in your community own to run by somebody who supportive of this with a little bit of a private space that has maybe a slow time during the week there are several memory cafes around the country that meet in coffee shops or restaurants and then people come in they order what they want and so as the coordinator you don't even have to provide the refreshments you just are there to facilitate and provide the space so that can be quite inexpensive at the other end of the spectrum would be a situation where you have to rent the space i would discourage that i've been you know you want to find a space the biggest cost usually is the time of the person who's doing the coronation and some cafes are run by volunteers and that's wonderful but i would encourage those folks to perhaps partner with a social worker at the council an aging or just someone who can make it a little bit of their worked paid time just to provide that support maintaining the mailing list et because otherwise it can be hard to sustain it over a lot of time and to be clear there's no cost to participant that's a very good point so it's absolutely free correctly free and something that i would suggest to someone considering to hear from you and i think the audience would as well how do you how can we connect with students in our areas you know how can we do outreach and what has worked for you in terms of getting connected and having this a meaningful experience definitely so when i started the club on my campus i actually found that i was overwhelmed by the amount of students who were just ready to to get involved in who are who are eager to get involved so i think reaching out there is school is a great way to do it you know getting in touch with students of any age really i'm not a college campus but i think it would it could work in a high school or something like that to you and i think that it's so important to get the student community involved i heard a story from somebody about colleges against cancer and how colleges against cancer it had been sort of a taboo topic to talk about cancer and then once that movement started in the younger population started talking about the issues that it it got funded in a people became more aware of it so one of the things i hope to do and i hope that you know these memories cafes continue to do is to get students involved who are in the younger population so that they can learn about what living with dementia looks like and what it feels like to somebody and how they can get involved and how they can help and i think that students will be very receptive to it and very eager to help wonderful mostly now i know we have some photos that i think jamie and beth have provided and the audience will be able to see these photos would you like to speak a little bit about the magic in the photos that you've been able to capture and share with us today you don't have and love and care between partners a partner whether that's again couples or a dolt children with their appearance but also peer to peer interaction you know even if it's as a facilitator after my myself this isn't about me this is about them and what their needs are and being able to interact with one another get to know one another and not just have those connections while at the memory cafe for hopefully continuing those outside of that sort of regularly scheduled time lovely the photos that i sent and shows some of the creative art activities happening at the j f and c s memory cafe and i think the creative arts are really really special and i like that we're offering some ideas that people can then do at home so you know the old saying don't try this at home we say do try them and sometimes the arts can make people feel little bit intimidated because they say well i'm not a poet i'm not an artist i'm not you know and we're really saying the arts are part of being human it's something we share as human beings and they are a way that we can get to know ourselves better and we can connect with others and it's not about the product it's not about creating something polished or measuring up to some sort of ideal it's about having an authentic experience and what we do find is that the arts really take advantage of the types of brain functions that conditions like all timers tend to a fact last and least so one example would be rhythm which you find in music you find it in poetry you find it in dance and it seems that rhythm is an inborn experience for humans maybe is connected with being in utero and hearing the mother's heartbeat we don't know but many of us have had these experiences that even someone who no longer speaks can respond to music and may sing so often in the course of these creative activities someone will start to reminisce or just share and participate and it can be astounding for the people in their life who have seen that this person has been more withdrawn and more quiet not really speaking or interacting very much sometimes the arts activities really bring them out and i think the same can be said for the care partners it's challenging it's a special experience for them too and it it often at first people feel they're a little out of their comfort zone and i will say and i know this is true for your cafe too it will never put somebody on the spot if they want to just sit and watch that's absolutely fine but you know i think we find people people sort of start to do more than they thought they would and pretty soon they're they're really participating and it just it's invigorating and a very unique way and it's important to know that people of all levels of the disease are welcome someone more functioning than others some are non verbal but the experience is so unique for each individual and even if they may not remember the next day in the moment it means so much and it's very gratifying for the care giver and for the  loved one so that's something to keep in mind if you have a loved one who who isn't and we know the not who they were they will gain so much from this experience so i highly recommend it thank you is there anything that you'd like to add you know to share with the community the audience with each other here in terms of the magic and the power we've had incredible adjectives like invigorating and you know we've expanded the notion of respite to actually increase presence and enjoy anything else that you'd like to add as we wrap up and go ahead i would have you know i would i would just recommend to people who want to get involved that they you know just don't be shy just you know don't feel like you're going to mass or you're going to embarrass yourself and just enjoy it and i find that the more i participate in the activity is the more enjoyable it is and you know it's just so meaningful have gardens in their home and they're all wheelchair accessible my dad's in a wheelchair and everything is planted at the height of someone sitting in a wheelchair so he's able to participate fully in the beauty of the garden and it's a seasonal memory cafe but there are so many different types of cafes so one may be teary like one may not but they go out in their best to gauge check to check them out as they say that's a great point and actually your month could be full of you know cafe visitors even if they're one of the most you know for that community if you're cafe hopping you could actually fill your days wonderful cafes and you make friends you make friends your local makes friends and  it's really important for anyone who's interested in starting a memory cafe or attending you know spread the word we need many more of these in all areas not just massachusetts there's a very large increasing need for all should honor you with this you know of your collaboration your collaborative spirit so often there's an innovative model and it's held closely to the chest you know so that grants can be garnered and resources could be hoarded basically but you've opened it up so generously and i think it's remarkable and i would invite all of the audience you know to and all of you in your communities to contact beth or anyone of us you know to find out more information and also to find out about this  s funding opportunity we can think about the needs in your communities and your specific you know target populations and we've spoken an awful lot around about alzheimer's and other related dimensions but you know you can see who else needs this increased presence and joy and meaningful connection in your own community so feel free as i said to contact any of us especially beth as the guru of memory cafes and also a plug for our next we'll actually be focusing on innovative caregiving models as well they will have someone from the actual co founder of the topsfield memory cafe on that show so that will be wonderful w also have someone from autism eat another innovative model so join us for that show as well but be sure to visit the cafes to contact any yes for information especially beth in terms of the percolator network and other funding opportunities for you in your communities and i want to thank the panelists you know for your wisdom and your expertise and for joining us today and also think the audience for your participation and on we go