Post contributed by Jackie Waters
Losing a spouse can have a devastating impact on seniors, both physically and emotionally. Getting older is a slow transition that comes with its own physical, mental and emotional stressors, but when you couple that with the overwhelming sense of loss from losing a spouse, the aftermath can be debilitating.
When a senior spouse dies, your entire world can turn upside down. The grief and sorrow of losing someone you have likely spent the bulk of life with can cause you to feel numb, shocked and distraught. Who are you without this person next to you? How will you get through the day-to-day without his or her guidance? If aging has been a difficult journey, filled with stress or sickness, you may feel alone, isolated or even abandoned. On top of the emotional trauma, you may also start having more troubling health concerns yourself.
There is no manual for how to deal with the loss of a senior spouse. Mourning the loss of a partner can bring you to your knees. Seek out friends and relatives for strength and compassion, but also know that you have wells of these emotions within.
At first, you may feel little or nothing, especially if your senior spouse was ill or suffering. That’s often the shock of death hovering just above the surface of deep pain. Depression and an overwhelming feeling of helplessness are often a part of the grieving process, and can strike at any time. Try to reach out to a friend or family member to help you cope with your various emotions during this difficult time. Some clinicians believe that we go through specific stages of grief, while others suggest that grief manifests in mood swings that rapidly switch from one moment to the next. You might feel anxious or unsettled one day, and then upbeat or optimistic the next. However you grieve, your grief is your process of accepting and growing through the trauma of losing your life partner.
What You May Experience
When losing a senior spouse it’s not uncommon to feel the heavy guilt of being the survivor. You may even feel angry at your spouse for leaving you. Then you might experience guilt or depression for feeling angry. When dealing with the emotional aftermath of death, senior spouses may also experience:
How to Cope
While your emotions are healing, try not to make major decisions. If you must make these decisions, reach out to a loved one or a friend to help you feel less overwhelmed. Even if you’re not hungry, try to eat at regular mealtimes and go for peaceful walks. Though you may feel like being alone, resist the urge to isolate yourself. Spend time with your grandchildren or a neighbor. You can also volunteer and take classes at the local community center or your nearest library to stay active and social. Consider joining a support group to work through your feelings or adopting a pet to keep you company at home.
Regardless of how you feel, the grieving process takes time. There is no right or wrong way to mourn, and no timeframe to adhere to. Take your time, take it slow, and be patient with yourself.
[Jackie Waters reached out to Memory Café Catalyst wishing to share what she has learned while helping her family cope with her mother-in-law’s passing. She is also the author of a blog that provides tips on home organization and simple living.]
About a year ago "Aroma de Cafe" was launched, the first Spanish-speaking memory cafe in Massachusetts. It is held in the city of Lawrence, in a predominantly Latino community. The room is decorated with real palm trees, pictures of coffee and cocoa fields. Traditional foods are served, and period style music plays softly in the background. The coordinators named the cafe after the scent of brewing coffee, which is evocative for most of their guests, who come from Puerto Rico, the Caribbean, Mexico and Central America.
In order to encourage and support the development of more Spanish-speaking cafes, we translated our free Memory Café Toolkit into Spanish. It includes a description of Aroma de Cafe written by the cafe coordinators, along with step-by-step instructions for starting a memory cafe, sample budgets, and templates that can be adapted for the use of a new cafe. It is now available at www.jfcsboston.org/GuiaCafeDeMemoria. The English version of the toolkit is at www.jfcsboston.org/MemoryCafeToolkit.
Please share this link with any Spanish speakers who might be interested in starting a café or simply learning more about the memory café movement. Together we can help share this model so that more and more people can benefit.
The concept of “dementia cafés”— places where people, who all too often feel isolated and socially separated from their communities, can come together to relax and enjoy good company — has evolved and spread from Australia to England to Holland to Japan to San Francisco to Seattle to Santa Fe. It’s estimated that there are currently about 200 such cafés throughout the United States, designed to address the social implications of a dementia diagnosis on individuals, families, friends and caregivers.
Starting anything new is always a gamble, so as one of the founders of the Coachella Valley’s first Dementia-Friendly Café (Palm Springs, CA area), I am proud to announce that the café is beginning its third year of operation this month. At the first café, we thought we’d be lucky to have 15 to 20 people; 52 showed up. Clearly, there was a need.
Dementia cafés are not support groups or seminars or daycare. There are no presentations or literature, and no commercial promotions are allowed. It’s simply a place where people can meet others with similar experiences and concerns, and a place where everyone understands the need to just relax and enjoy being out in public without fear or embarrassment. The café is for spouses who need a break from their daily routine, or people who have been diagnosed but are still vibrant and independent, or friends who want to support other friends who are concerned about going out alone. Too often, those with dementia (and their closest loved ones) tend to sever social connections at a time when they are needed most. There are lots of online sources for information as well as local organizations that offer support groups or counseling, but the café offers a chance to leave the disease at the door and just enjoy an afternoon with others who are happy to be able to do the same.
According to Palm Desert resident Lynne Bailey, “Socialization opportunities diminish with the disease—for the one with the disease and the caretaker, also. The café is a welcoming place and gives our loved one with Alzheimer’s an opportunity to socialize without explaining, without judgment.”
One of the first challenges of the founding group was figuring out where to hold the café. Palm Desert resident Dee Wieringa, administrator at Caleo Bay Alzheimer's Special Care Center, worked with management at P.F. Chang’s China Bistro at The River in Rancho Mirage to establish a safe, social atmosphere, where people can come together in a relaxed environment.
“So many people feel isolated,” says Wieringa. “There’s so much satisfaction in seeing them come out and socialize.”We were amazed that some local restaurants with suitable space—and far from busy on a Wednesday afternoon—said our “clientele” wouldn’t be appropriate for their establishment. That kind of attitude was exactly why we decided to call it the Dementia-Friendly Café instead of using a euphemistic name. We were committed to finding ways to destigmatize the word “dementia,” since we all remembered how recently people would only whisper the word “cancer.”
Many of those who attend are dealing with Parkinson’s disease. One is Karen Kramer, a resident of Sun City Palm Desert. “We love coming to the dementia café,” she says. “We meet our Parkinson’s group there as a social event, and it is truly a lift.” All too often, caregivers get into a routine that becomes self-perpetuating. One founder is Rupert Macnee of Rancho Mirage: “My role with the café was to greet folks and to circulate, bringing people together. The experience went a long way in helping me, along with my sister, to effectively manage our father’s care. I became much more understanding of his flights of fancy. I learned to accommodate his dreams and perceptions, without blocking them, or trying to make him ‘normal.’ My expectations of how I expected him to behave changed. I knew that to allay his fears was a No. 1 priority.”
The Dementia-Friendly Café is entering its third year at P.F. Chang’s. There is no cost to attend. Participants can order drinks or food from the happy-hour menu with separate checks, but no purchase is necessary.
I don’t really believe in horoscopes, although I read them every day. As I began this column, I read mine, which said: “Relationships are not simply about getting your needs met; they are about the profound impact that you have on others and how you are, in turn, affected by their stories.” That has been true for me these past two years as I have greeted everyone who has come to the Dementia-Friendly Café each month. Please feel free to join us as we move into our third year.
Memory Cafés provide a much needed opportunity for both care partners to get out of the house and connect with an accepting circle of friends. At Memory Care Café here in the San Francisco Bay Area, we hear from our guests how important it is to have that break in their daily routine, and to take part in a fun social outing together.
Most memory and Alzheimer's cafés across the country meet once or twice per month. We are lucky enough to offer a café event weekly in our area. But we know that care partners need to get out and engage in their communities more frequently than that!
Wouldn't it be wonderful if there was a comprehensive resource for 'forgetfulness friendly' activities to help fill the gap between memory café events? It's a difficult proposition because most senior organizations don't have the bandwidth to collect and post information on local activities available across regional organizations. It's a lot of work, and there may be some concern about liability when advocating for events sponsored by other organizations.
Our current solution is a "Forgetfulness Friendly and Free" Bay Area page available on our memory café website. We keep our eyes and ears open for local events, programs and services that fit that bill, and update the page frequently. Listings include a short description, time, location, cost (if any), and contact information. We cannot cover everything that's out there of course, but we keep it fresh, and we incorporate feedback from our community.
If you're interested in creating such an activity resource for your café members, have a look at our page HERE. The Café Catalyst community would also be grateful to hear about how you find activities and get the word out in your area! Please shed some light by posting a comment or sharing on our forum.
Memory Café Catalyst members,
I want to let you know about the second national Memory Café conference call scheduled for next week, June 15th at noon PST!
See below details from the organizer Marshall Stanek:
Please join our Memory Café Leaders National Conference call. We’re excited to have some of the pioneers of the U.S. Memory Cafés (Beth Soltzberg, John & Susan McFadden, and Ken Capron) sharing how they’ve been able to get so many Memory Cafés started (about 30) and how they are currently finding ways to make them financially sustainable. What are they doing to help offset Café expenses? What other ideas are they working on to improve on this?
During the call, I’m hoping to trial some collaborative web tools to capture what’s being shared so we can access it later and continue building on this foundation of experience. More details about that later…just be ready to access web links if they are shared at the time of the call.
National Memory Café Leaders Conference Call
June 15th - 12pm Pacific Time
TOPIC: How can Memory Cafes become sustainable financially?
Presenters: Ken Capron, John & Susan McFadden, Beth Soltzberg (influencing about 30 Memory Cafes)
FREE CONFERENCE CALL:
Dial-in Number: (712) 775-7031
Meeting ID: 951-150-913
We are fortunate to have a member of our community who wants to plan a monthly conference call for Café organizers across the country to come together and share experiences and ideas that will help build and keep our Cafés vibrant and growing. See below Marshall's suggestion and details on how to join the call:
Fellow Memory Catalyst Leaders,
After working with a local team to develop a model we can use to roll out multiple Cafes in San Diego, we now have six scheduled venues, and over a dozen more sites asking to host Cafes. Now I'd like to learn what I can from others and thought it might be interesting to talk with others through a live conference call.
I'm happy to host the call and wondered how many others would be interested in participating to share and learn from each other. My motto has always been, "None of us is as smart as all of us". I talked with Debora about this months ago and she was supportive, yet I wasn't ready to start this until I had my own Memory Cafes launched with some personal experience to share.
Anticipating some interest, I'm providing a link with some time slots that work for me. If you are interested, choose ALL the time slots that also work for you. Once we have 6 or more respondents, I'll share the slot with the highest participation and notify everyone.
Once we have the time scheduled, I'll provide the dial-in number for the conference call. I hope you will be able to join us and share what you've experienced.
Hope this works for some, as I'd love to meet you and talk with you about your experiences and share mine now that we're launching multiple Cafes in San Diego, with more to follow.
“Alone we can do so little; together we can do so much.” - Helen Keller
Almost a year ago, JF&CS started the second memory café in Massachusetts. Two things about the experience of launching and developing a café struck me.
First, providers were intrigued by the name and concept, and once we built solid attendance, guests loved it. Our experience reinforced what I’d heard from others across the country – that the memory café is new and compelling. It fills a gap as a nonclinical model, a social opportunity for people with dementia and care partners together, a bridge between formal services and the neighborhood coffee shop. However, my second takeaway was that significant time and careful planning is required to design and sustain a good café, one that will make it over the hump from a great idea to a flourishing community.
So, once the JF&CS Memory Café was humming along, how could we expand access to this wonderful thing? How could we respond to families who asked us to please offer a café in the afternoon as well as the morning, or more than once a month? How could we be in more locations, offer activities for different cultural and linguistic groups, an evening group for those with younger onset dementia? With our limited resources, we couldn’t.
From this sprung the idea of a memory café network. I contacted everyone I knew who was running or had expressed interest in starting a café, along with a supporter at the Alzheimer’s Association who could help ensure that our cafés were known to this key referral source. Our network, the “Percolator,” has met twice, and plans to continue on a quarterly basis. Our goals include ensuring that the day/times of cafés don’t conflict, developing a shared café directory and a guest artist directory, offering technical assistance to new cafés, sharing ideas and resources. Next on the horizon is to encourage the development of cafés in areas that could benefit from them.
Though the Percolator is in its infancy, we’ve had these gains:
- A shared directory is now available at www.jfcsboston.org/MemoryCafeDirectory and each café is helping to publicize it.
- Several families are now attending multiple cafés in our network. One care partner wrote to say that she and her husband are becoming “café groupies.”
- Those starting new cafés are reaching out for support and ideas, and through our network they can tap into information quickly.
And, as Percolator participant Bonnie Bigalke of the Alzheimer’s Association of MA/NH says, "Having an organized network and a directory makes it much easier for Alzheimer’s Association Helpline staff to refer people to local memory cafes.”
The network model presents challenges as well. Although Percolator participants plan to write up a list of norms and standards, each café is independently run; we cannot evaluate cafés or enforce standards. There is also a natural hesitation to share ideas and resources with organizations that could be viewed as competitors. Since attendance is the biggest hurdle for establishing and sustaining a café, the elephant in the room at our first meeting was this: will new cafés take away our guests?
I’d had this worry, too, until I spoke with John McFadden at the Fox Valley Memory Project in Wisconsin. The Fox Valley Memory Project http://www.foxvalleymemoryproject.org runs a network of seven cafés within driving distance. He noted that some attendees just stick with “their” café, while others attend several, and that there is plenty of room for multiple cafés. I brought the Fox Valley Memory Project’s café map to our first Percolator meeting, along with a café map from the UK, where cafés are so thick you can’t even count them.
For all of us, the broader goal is social change. We want to create thriving memory cafés, but we’d also like for our neighbors with dementia to be able to get a cup of coffee at the local Starbucks. To reach this goal, we need to think big, and we need to think collaboratively.
I’m happy to share my experience and to learn from others experimenting with café networks. Feel free to contact me at 781-693-5628 or firstname.lastname@example.org.
Together we can do so much.
[Photo by Elena Clamen]
Developing and maintaining memory café membership can be much more difficult than one would imagine. Once people come to a café, they are usually hooked, but getting new members out for the first time can be the biggest challenge faced by organizers. And when members move on because of changing care needs, the outreach and marketing cycle must begin again.
As we expand our memory café groups here in the San Francisco Bay Area, we are making new discoveries about how to do outreach. I will share them here, and I hope that you will do the same by leaving a comment or writing a community blog post.
Today my focus is on getting the word out online. We are trying to make a trusted connection with vulnerable older adults in need, and often that requires that they hear about our organization from several different sources. Online outreach is an important part of that connection.
Since most communities do not have access to a comprehensive calendar of activities available for people living at home with memory loss, one of the best ways for people to find out about your café is through an online search.
Have you done a few searches of keywords, to see whether your café program information or website comes up? An example might be: “activities” + “Alzheimer’s” + your city name. It turns out that it is important to use a “private window” or “incognito window” to test those search results because otherwise the searches are skewed by the topics and websites that we frequently search and visit. Using one of these private window options (found under “file” on your search engine menu bar) will allow you to see what others find when they search those same keywords.
If you’re not happy with where your website is coming up in that search, you may need to work on your SEO (search engine optimization). There are consultants who can help you fix these issues quickly (e.g EffectiveWebsites.com), but here are some basic DIY tips if you are operating on a tight budget:
There are a lot of helpful summary articles about improving SEO, which go way beyond the scope of this post. If you're interested, one that I can suggest is the Moz Beginners Guide to SEO.
Many cafés are independent, which means their meeting information is not listed on the local Alzheimer’s Association chapter website or other regional elder care nonprofit websites. These days, it seems that each organization lists only the events they sponsor directly. It’s probably due to time constraints and liability issues, but this practice makes it difficult for potential members to find independent memory cafés, and for memory cafés to get the word out in an affordable and efficient way.
There are now a few national directories that are trying to help connect consumers to services. For example, two databases that are powering searches through local and national Alzheimer’s Association websites are CareMavens.com and CareLike.com, and both will allow you to post your listing at no charge. It’s worth adding your café information to both of these databases, although CareLike.com just informed me that since they do not currently have a category that fits memory/Alzheimer’s cafés, our listing will not be searchable until they have enough interest to create a category to ‘house’ us. The same is true for Caring.com, although they are accommodating us in their Adult Day Care category for now, and were very receptive to the idea of adding a category that would better suit Memory/Alzheimer’s cafés. Please consider talking to these organizations about the need—together we can make some noise and get memory/Alzheimer’s cafés recognized as an important category of services!
Have you heard of the National 211 Collaborative? They provide free information and referral for a broad range of help services including health care and counseling. You can now list your café free of charge with 211.org. Once you search your zip code and figure out if calling 2-1-1 is available in your area, you can check the information for agencies to find out how to submit your listing. In my area, 211 is supported by our local United Way.
If you are not already listed on the two national lists of Memory and Alzheimer’s Cafés, I would highly recommend that as well. Please see: Alzheimer’sCafé.com, and the Alzheimer’s Speaks Resource Directory.
Make sure to follow up and check back on all of your listings. Submission does not guarantee the listing will get posted or that it will be done with accuracy. And if your information changes, remember to go back and make those updates. It takes some time, but the potential to reach a broad audience at low/no cost is worth the effort.
Other options for online outreach include Craigslist and your local newspaper’s online classified ads. Craigslist ads are free and often times your local newspaper will allow nonprofit organizations/community events to advertise for free on their online classified page.
There is a movement now to create online community-specific news, information and engagement by several ‘hyperlocal’ organizations. If available in your area, consider contributing content or posting a café event on their bulletin boards. Two examples are Patch.com (national sites) and Baristanet (New Jersey)—check here to see if there is one covering your area. Also, many cities have neighborhood newspapers that have online content and classifieds, and they are looking for local news and events to write about!
Another possibility is to join local professional elder services networks, which often list their members’ organizations on their website. Examples might be ‘Senior Roundtable’ organizations, a local ‘Section on Aging’ group or Meetup groups.
Please chime in with additional suggestions. Many of us struggle with attendance issues at one time or another and sharing tips and information will help us continue to provide these much needed café programs!
Young volunteers are making some magic at the JF&CS Memory Café! The café just opened on March 7th—the second in Massachusetts so far—and it’s off to a strong start, in part, because of some enthusiastic student volunteers from Brandeis University (volunteers attending their May 2nd café are pictured above).
Beth Soltzberg, who spearheaded development of the café at the Waltham Jewish Family and Children’s Service (JF&CS), got the idea to create an intergenerational café program from Upper Valley Memory Café at Dartmouth in New Hampshire, which has volunteers from a sorority on campus. She believes that educating young volunteers on how to embrace people living with memory loss is a valuable outcome of this kind of collaboration. “An important goal of the memory café is to break down walls between people with dementia and others in our community,” she says.
When Beth first reached out to the Brandeis Student Volunteer Organization, she was happy to find a very organized and enthusiastic group of students, which already had a subgroup specifically dedicated to doing work with elders in the Waltham community.
Nonetheless, the students were a little nervous initially. They wanted to know—how do I relate to the people at the memory café? Beth developed a schedule to help them feel comfortable about where they should be and what they should be doing at different points during their first café. She encouraged them to just get out there and give it a try, and when they did, they found that they really enjoyed the group. The feedback from the leader of the student volunteers is that the experience has been “magical.” And now, the student volunteer organization has taken on the responsibility for screening, training and scheduling volunteers, which has been a real boon for this new café.
The café is housed at the JF&CS office building in Waltham, which is about 10 miles outside of Boston. They have a small start-up grant but will be looking for additional funding in the fall. The café already has 15 regular attendees—mostly ‘early adopter’ types according to Beth—who have open minds about trying something new.
Their community seems to want something programmatic for the café meet-ups. One café attendee told Beth that having an invited guest presentation helps motivate her spouse to get out of the house. Beth has invited community artists to do interactive projects, and they also have singing, dancing, and of course, lots of great socializing and refreshments. She is planning to have more artists, musicians, and poetry presentations in the future.
Next fall, the students at Brandeis have offered to take on some of these programming responsibilities as well, possibly bringing in students and faculty who want to visit and share their knowledge and passions on various topics.
Collaborating with a university is not a common model for memory cafés yet, but it is certainly worth considering if such an opportunity exists in your community. Students and faculty can clearly be a resource for the café, and, in turn, the café can be a great learning opportunity for these volunteers.
Do you have students volunteering at your café? We would love to hear more about intergenerational memory café programs!
Over the past several months, I have been on an extended leave while making an international move with my family. Now that we are settled, I am excited to be getting back to writing for this website, and helping in any way possible to support the expansion of social cafés for people with memory loss and their loved ones. At this time, I am looking into ways to contribute to this movement here in the San Francisco Bay Area, and will be thinking about how best to move forward with this website as well. There are likely to be changes to the format in the coming months, and your thoughts and suggestions are welcome.
Some of you may also hear from me over the next few weeks as I continue my effort to update a national list of Memory and Alzheimer’s Cafés. This list will not be kept on the Memory Café Catalyst website, but my updates are going to three people who have been working hard to compile and maintain these lists in the US:
Please visit their websites for the most up-to-date listings and also let them know about new cafés or changes in the status/dates/times of cafés that are already in operation.
Here’s to your efforts! I hope we can continue to share about them here and inspire more communities to create connection through memory cafés.
Fort Walton Beach Neighborhood Memory Café in the Spotlight:
Maryann Makekau is off to a great start with her new memory café in Fort Walton Beach, Florida. And I’m not surprised. Her warmth and enthusiasm are palpable in every interaction—even her emails bring ‘Hugs from Maryann.’
Hope Matters to Maryann. Through writing, speaking and advocacy, she spreads love and hope to people coping with cancer, deployment in war, memory loss and other difficult life situations. Where memory loss is concerned, it’s personal—her mother is living with Alzheimer’s and Maryann approaches every aspect of her new café with the experienced eye and heart of a caregiver.
The Fort Walton Beach Neighborhood Memory Café began in June of this year and their sixth café gathering is coming up on November 29th. A group of 20-30 are currently taking part in these monthly social events held at Synergy, a local organic juice bar and café.
How did she start a successful memory café from scratch? Below, Maryann generously shares some helpful tips from her ongoing café development experiences.
Like many memory cafés, the focus in Fort Walton Beach is on relaxing, chatting, and making new memories with others who are experiencing similar circumstances. She has also incorporated opportunities for guests to make art, experience music and dance. One very unique community building idea is their ‘memory board’ (see photo above). Pictures of previous café gatherings are hung from a chalkboard and guests are encouraged to share their thoughts.
“What word does this picture bring up for you?” she asks attendees.
Maryann says the board has become a point of connection for creating community in the moment and remembering past experiences together.
Synergy Organic Juice Bar and Café sounds like just the place to nourish the mind, body and soul! Guests are served refreshing drinks, fresh coffee and healthy snacks. Maryann shared this tip about café ambiance: she pushes individual tables together to create one long table where everyone sits together ‘family style.’ She finds that this physical format creates a better space for connection and camaraderie.
Maryann also knows that when couples or care partners venture out of the home, routine tasks can become a source of stress if their destination is not user-friendly. In that light, she made sure the venue was handicap accessible, particularly where the restroom facilities were concerned. She gave two additional suggestions not included in my earlier post on Memory Café Environments: 1) Make sure the restrooms are labeled as “unisex” during the event so that spouses can help their loved ones and, 2) Bring a basket with extra supplies like wipes, gloves and briefs—little conveniences that will make all the difference for guests.
Maryann has rounded up several local sponsors—eight at this time—to help with supplies and food. Her thoughtful way of appreciating her sponsors is also respectful to her café patrons: While sponsors are not always present for the café event itself, she includes the names of these organizations on meeting reminder cards, tips sheets, and on the banner at the top of her Hope Matters Facebook page and website. Sponsors of the memory café currently include the local Massage Envy, a home health care agency, two assisted living facilities, a senior day care, and a medical imaging facility. Additionally, a local hospice and a graphic arts company provide in-kind donations of supplies and artistry, respectively. The Synergy Café generously closes its doors to the public for the memory café gatherings each month and provides healthy snacks at a fixed low price (with costs paid by the sponsors). Although the local Alzheimer’s Association supported her initiative by attending the café’s opening day event, they are not sponsoring the café directly.
Outreach, outreach, outreach…
Maryann also has some useful suggestions on outreach. When first starting out, she did a press release, reaching out to local media to ensure coverage of their opening day event. Importantly, she formed collaborations with local community-based services and medical providers to further spread the word to people in need and increase the likelihood of direct referrals. Maryann made in-person contact with support groups, neurologists and other physicians in the Fort Walton Area and continues to pass out flyers with information about upcoming meetings. One of the café attendees is also on board helping Maryann’s volunteer efforts with the outreach.
For those of you who are just getting started and/or looking for simple marketing ideas, Maryann has provided us with her press release, café event flyer, the brief summary she uses on meeting reminder cards, and an information sheet for potential sponsors. Feel free to use them as templates for your own café outreach and fundraising needs.
Maryann says she included the word “neighborhood” in the café name because she is hopeful it will inspire the emergence of more grassroots memory cafés across the Florida Panhandle. In particular, the recent news report out of Cornwall, UK on the development of a memory café specifically for veterans has her thinking about that need in the Panhandle area.
“We have a large military population here and it would be great to work towards developing similar cafés in coordination with existing veteran services in our area.” Wouldn’t that be a fantastic addition here in the US?
I applaud Maryann’s vision of “more memory cafés… as places where isolating stigmas are uncommon and miracles inside Alzheimer’s are commonplace.”
Hugs to you, Maryann, for your inspiration and thoughtful tips!
To learn more about how to start a memory café see the Guidance section of our Resources page for links to available handbooks, toolkits and guides.
What if there was a free online platform that could help your memory café bring in new members, volunteers and community donations, and also provide a place for these groups to share information, schedules and announcements?
You may have heard about Lotsa Helping Hands as a free online tool that can help family and friends coordinate care for a loved one who is experiencing challenging life circumstances. But last year, Lotsa Helping Hands added an ‘Open Communities’ option where people in need can ask for help from their broader community, and those who want to volunteer in their neighborhood can find local people and organizations who need their help. These Open Communities are proliferating rapidly, and larger organizations are now beginning to use this online platform (it is free for nonprofits).
I have not found any mention of a memory café using this platform to get the word out and coordinate volunteer efforts, but in my future endeavors to support multiple memory cafés in my hometown of San Francisco, I am going to give it a try. And here is why:
If you want more details, you can watch the related webinar here. The Q & A at the end of the webinar also addresses the important issue of recruiting and vetting volunteers.
Facebook and Meetup are other social networking options for getting the word out about your memory café. Ken Capron of Maine’s "Memory Works" is using the Meetup platform to organize all of the new memory cafés in Maine--check it out here. The Meetup network is searchable by location, date and keyword, which is very practical.
Another up-and-coming platform worth watching is IAM-CARE. They are in the process of creating an international, integrative, healthcare platform for dementia care, which aims to have health tools, information and networking available in one place. They are also looking for ways to help connect members to local community support options like memory cafés, and it will be interesting to see how they address this important need in the future.
Would you consider using a social networking platform to promote and organize your memory café? Can you suggest other options? Please let us know!
Fox Valley in the spotlight:
This post was slated to be about memory café activities. But through conversation and investigation, I quickly came to the point that what is done at the café is probably less important than how it is done.
Some cafés opt to have a pre-planned format with specific events scheduled, some are purely social, and many are somewhere in between—having occasional guest speakers, music, art, or other projects offered.
Whatever the level of structure, the key to successful café events, according to organizer John McFadden of the Fox Valley Memory Project in Wisconsin, is engagement.
I interviewed John for this post because the Fox Valley memory cafés in Wisconsin have been very successful (eight cafés up and running with good attendance in less than one year) and their approach includes regularly scheduled events at each café.
John says some people are choosing which café to attend based on proximity or the social connections they have made, but others are choosing based on their interest in the specific events scheduled. “We have one couple who never misses a café that has a music event planned,” he says.
But John emphasizes that they are trying to avoid “activities” that rely purely on performance or entertainment, which tend to provide a passive experience for the people attending. “Our goal is engagement,” he says.
Social engagement has been defined as a social group’s participation in activities. Interaction, exchange, and not forcing participation, are key components.
But how do we cultivate engagement, exactly?
As you can see from the below café event announcements in the Fox Valley Memory Project newsletter, the active participation component for each event is planned out in advance:
“Take me out to the ball Game! Come experience seventh inning stretch activities, baseball trivia and share your greatest baseball memory. We’ll have refreshment, door prizes and great conversation!”
“Guess the Object! We’ll be sharing a collection of useful items- some old, some new. The challenge will be guessing what they were used for. Do you have any unique items to bring from home that might stump our group?”
“Sparking Memories with Poetry! Classic poems will take us on a reminiscing and sometimes humorous journey. FUN is at the heart of this program led by Valley VNA. In fact, we may even create our own poem of the day!”
With respect to activity choice, John cites Ann Basting (who developed TimeSlips) on games to avoid: those with letters and numbers and those that are fast-paced. But again he says that even the best intentions can go awry if the engagement component is missing from the plan. For example, several occupational therapy students recently created an interactive game for a Fox Valley memory café, which was supposed to get people talking about their life experiences. But because the focus was on the technical parts of the game and not on how to elicit engagement, the game only lasted a few minutes and did not garner active participation. The engagement plan had not been sorted out beforehand.
Another way to cultivate engagement is to listen carefully to your community and find out how you can support their ideas for activities. In Fox Valley, they have brainstorming sessions with café members to come up with future activities, and, they follow through. A group of gentlemen attending a memory café recently decided they wanted to get together and do something to give back to their community. Café organizers supported their initiative, and now this group gets together regularly to do woodwork—making birdhouses and selling them in town. The group has decided to give their profits to the Fox Valley Memory Project.
This last example reminded me of some advice from Teepa Snow, occupational therapist and renowned dementia care expert: many people find “working” leisure activities more engaging and rewarding. Including such opportunities at the café also fits very well with Emi Kiyota’s emphasis on providing opportunities for older adults to give back to their communities.
Finally, the memory café environment itself can help with engagement by providing a space where people feel a sense of belonging and acceptance that allows them to be themselves in a social setting.
John related this story about a couple who rediscovered their love of ballroom dancing at a recent memory café:
A dance floor was set up after a musical event to get people moving and participating in the music. This particular café had an engaging volunteer who had been a music broadcaster in an earlier era. The tone of his voice and manner of speaking put everyone at ease and really took them back in time. It turned out that a couple attending the café had been avid ballroom dancers in the past, but the husband’s memory loss had brought an end to this very important activity in their lives. His wife was still encouraging though, and prompted him many times to come out and dance during the event. He did not seem interested at first, but then finally, at the second-to-last song of the afternoon, he decided to come out onto the dance floor. To everyone’s amazement, this couple danced up a storm—his ability was still there! His wife had tears of joy streaming down her face as they danced. She was so grateful to experience connection with her husband in this way again—they had not danced together in six years!
What is your experience with engaging activities? Please consider sharing your thoughts here. This kind of information can be especially useful for people who are just getting a café off the ground.
There is a growing literature and practice around trying to make care environments and communities more age and dementia friendly. Can any of this information help us create more accessible and inviting memory café environments? And, for those who are starting up a new café, what are the important features to think about when choosing a location and setting up the venue for the first time?
Emi Kiyota, an environmental gerontologist, and architect by training, has counseled organizations across the globe on very specific aspects of the environment that impact elder accessibility, comfort, and safety, but also, importantly, on how to create “a place where you can feel like yourself.” Kiyota emphasizes the need for creating environments that promote respect and dignity and provide opportunity for reciprocity. The principles behind her philosophy are outlined below and you can also read more about her international Ibasho Cafés here.
Relating this to the memory café venue we can ask: Are our café members routinely given a chance to share their talents with the community or give back in a meaningful way? How can we value an individual’s full history and experiences? She also recommends that elders help create their physical environments. What mechanisms are in place to gather input from your community on the memory café environment?
Turning now to the more physical aspects of the environment, Kiyota gives several recommendations that will improve accessibility and comfort for older adults. For example, normal aging is associated with changes in the visual system that can make it difficult to distinguish between different shades of one color or pastel colors. Brighter contrasting colors can be used to highlight important features of a room or used on signs (on the topic of signs, simple, large font, posted at eye level, is the way to go). Particularly relevant to people with memory loss, avoid dark colors on the floor (e.g. a dark gray floor mat) because dark areas can be misinterpreted as a hole or step. Having flooring that is in good repair is a must, and using plain, non-reflective surfaces can also reduce agitation.
Lighting is an important issue as well. Try to keep lighting consistent, avoiding pockets of bright light and dim light, because it takes longer for aging eyes to adjust to changes in light, which can be disorienting. Take advantage of natural light, where possible, because it can have a calming effect.
In terms of mobility, choosing a building with entrance and exit ways that do not require elevators/stairs is optimal. But if unavoidable, consider adding bright tape with a sandpaper-finish to the stairs and adequate lighting to the area. It is also helpful to have handrails next to stairs and in corridors and to provide chairs with armrests to make it easy for guests to get in and out of their seats.
Many of these recommendations are echoed in a chapter entitled “Dementia and the Environment” from At Home with Dementia, a helpful resource produced by Alzheimer’s Australia NSW. Additional suggestions they provide specifically for older adults with memory loss include the following:
If your group is in the process of choosing a location, Sue McDermott, Cornwall’s Memory Café Network Facilitator (UK), provides the following suggestions:
Of course, memory cafés are typically low-budget, volunteer-run events, and groups rely on the generosity of their communities to provide spaces for these gatherings. As a result, location preference and substantial building modifications may not be possible or practical. But it can still be helpful to know what the recommendations are and perhaps, as a group, we can come up with some creative ways to weave them into whatever environment we are working with.
Does anyone have suggestions or easy implementation tips? Please consider sharing them in a comment, community blog post, or a Tip submission.
One of the most difficult aspects of starting a memory café can be getting the word out to the people who would benefit most from social connection—those who have become isolated from their communities and those who have other significant barriers to connection such as cultural differences or being a non-native speaker.
What is the best way to reach these individuals?
I am hearing from café organizers that outreach needs to be an active and ongoing process. When the café is just starting up, have the expectation that attendance may be low for several months, and try to persevere! Several organizers have said that a good local newspaper article about their memory café has been one of the most successful ways to reach people in need. Word of mouth also appears to be key to these grassroots driven programs. In addition, establishing personal connections with other community-based organizations or local leaders can help cultivate trust and lend credibility to the new café.
Below is a more specific list of the types of organizations to contact in your community with information about your memory café [This list is a compilation of ideas from Carole Larkin’s Memory Café Toolkit, a Cornwall UK guidance on setting up a memory café by Sue McDermott, and my own research]:
The question of how to reach ethnically or culturally diverse populations and overcome language barriers is more complex. In addition to outreach strategies, the program itself will need to have a level of cultural competency that encourages attendance over the long term.
A very helpful resource in this regard is the book entitled Ethnicity and the Dementias, Edited by Gwen Yeo and Dolores Gallagher-Thompson. In the chapter on outreach they summarize lessons learned from two decades of research addressing how community-based organizations can more effectively reach people dealing with memory loss in ethnically diverse communities. Below is an abridged summary:
1. Recruit bilingual and bicultural staff/volunteers for outreach and program delivery
2. Provide ongoing diversity training at all levels of the organization
3. Utilize linguistically and culturally appropriate tools and materials
4. Understand cultural attitudes, beliefs, and values about dementia
5. Launch a media campaign (using appropriate language and ethnic media)
6. Identify potential community partners
7. Offer in-service training and community orientations (for staff and community education)
8. Build dementia care capacity with key providers (established, trusted, interested collaborators)
9. Involve the community
10. Deliver on the promise to serve
[Edgerly, E. S., & Sullivan, T. (2006). Reaching Diverse Caregiving Families Through Community Partnerships. In G. Yeo & D. Gallagher-Thompson (Eds.), Ethnicity and the Dementias (2nd ed.). New York: Routledge.]
Because memory cafés are low-budget, often volunteer-run organizations, these recommendations may need to be adapted somewhat. For example, instead of a formal in-service training, one option would be to invite someone from the community who is knowledgeable about specific ethnic perceptions of dementia to speak with volunteers for 30 minutes following a scheduled memory café gathering.
Successful outreach clearly involves awareness, partnership, creativity and persistence. Do you have an outreach success story or need advice on this issue? Please share your insights/questions by adding a comment below or starting a thread in the discussion forum.
I was very excited to learn that there is a psychosocial ‘therapy’ that is as effective as several Alzheimer’s drugs at improving cognition in a way that also appears to improve quality of life for people with memory loss.
I first heard about this Cognitive Stimulation Therapy, or “CST” from Sue McDermott, the coordinator for close to 30 memory cafés in the Cornwall region of England. She has been encouraging memory café workers there to incorporate aspects of the new therapy into their café gatherings.
Last week I attended a CST workshop in London to learn more. It was led by Dr. Aimee Spector, first author on many of the research publications describing the CST clinical trial results that have come out over the past seven years.
The basic idea behind the therapy is to get people’s minds to be more active and engaged. Although the backdrop for the program sessions involves some standard activities such as current events discussions, physical games, and creative projects, the difference lies in how conversation is stimulated by the facilitators during these activities:
Instead of asking questions that would elicit factual, or well-rehearsed responses, the idea is to ask open-ended questions that spark new thoughts, opinions and associations.
An example might be: If you were in charge of our government’s finances, what would you do? In contrast, a more directed question about a specific financial issue in the news might make people feel like they need factual knowledge in order to participate. Another example from CST is to bring out two photographs and ask what similarities attendees notice between the two. Answers might range from: the subjects are both female, they both have brown hair, they appear to be famous figures, or they are both from England--but all levels of observations are valued responses.
In other words, because the questions are open-ended and intended to elicit opinions or ideas rather than facts, people with memory loss can participate in the conversation at their own comfort level. In essence, people feel less ‘put on the spot’ about coming up with specific information, which can really get the conversation rolling!
In its clinical form, CST is an evidence-based therapy, which has been shown by clinical trial to significantly improve cognition (specifically, it improves language including spoken language, naming, and word finding). The core program consists of 14 themed sessions for groups of 5-8 people with mild to moderate memory loss and is typically facilitated by two health specialists. In one study, Aimee Spector, Martin Orrell, Bob Woods and colleagues found that the subjects’ MMSE cognitive impairment test scores improved by almost 2 points on average following a 6-month extended CST program. While these effects eventually dissipate with progression of the disease, participants and caregivers report improvement in overall quality of life during and following the program. The results have been impressive enough that the UK National Institute of Clinical Excellence recommends the use of CST for people with mild/moderate dementia of all types in the UK. You can read more details about the evidence-based CST program here.
Although it is probably not practical to include CST in its formal format within the memory café venue, it seems worth thinking about how cafés might provide this kind of stimulating conversation informally. Even at café gatherings that do not have structured activities, having awareness about how we engage in conversation may help guests participate more actively. And, this new way of engaging may even be carried over into the home environment through care partners who witness the value of it in practice.
Want to learn more?
Memory cafés are relatively low cost to operate. A space to hold the gathering, some name tags and refreshments are the basic essentials. Still, café organizers are trying to find ways to provide the café experience without asking attendees directly for a membership fee.
To my knowledge, there is no comprehensive source of information on how memory cafés are being funded in the US or abroad. My hope is to do an informal survey of cafés in the US over the next several months and get back to you with a more complete answer to this question. But for now, I will outline the funding strategies I have been hearing about from a handful of café organizers:
1. Community donation
Memory cafés can be held in locations such as libraries, museums, community centers and existing cafés, at no charge. Often community organizations or local businesses will also donate materials and refreshments for the café gatherings as part of their general philanthropic or community relations programs.
Pros: no cost to attendees; few strings attached
Cons: potentially limited schedule and location options; dependent on the continued generosity of these organizations
2. Attendee contributions
Donation boxes and raffles for donated door prizes can be a means of asking attendees to contribute informally at their comfortable level.
Pros: simple fundraising method; gives attendees another opportunity to give back
Cons: inconsistent cash flow; may put too much pressure on attendees
3. Local business sponsorship
Companies that provide eldercare/senior services and products are frequently willing to fund café meetings in exchange for a short announcement about their product/service.
Pros: relatively easy way to have dependable ongoing funding; potentially provides new information to attendees; can increase awareness of the memory café in the local business community
Cons: can move the focus towards marketing; may be misinterpreted as endorsement by the café [care to limit company presentation time and frequent reminders that the café does not endorse the product/service are suggested strategies]
Funding through local foundation grants is another option.
Pros: grant awards can increase publicity and local recognition of new memory cafés; guaranteed funds can provide a substantial jump start, which is especially helpful in regions that are trying to establish multiple cafés
Cons: time and expertise required to submit a successful grant, complete progress reports and other funding agency requirements; not a long-term support mechanism [need to have a sustainability plan for the post-grant funding period]
Other possibilities could in theory include: larger scale corporate giving or corporate sponsorship relationships, partnering with other community-based service agencies, or perhaps obtaining government funding through the local Area Agency on Aging.
It would be helpful to know the average cost and most common funding mechanism for memory cafés. I will be gathering this information, but please also feel free to leave a note about your methods/costs here in the form of a comment or submission via our contact page!
1. Provide opportunity for regular social engagement
2. Create an environment that is relaxed and free of judgment
3. Allow people to experience a sense of normalcy
4. Inspire new friendships and peer support
5. Provide a break from normal routines
6. Low cost, high benefit
7. Bring music, art and other entertainment within reach
8. Offer connection to other community-based support mechanisms
9. Raise awareness about stigma and isolation
10. Can be a first step towards creating a ‘Dementia Friendly’ community
Making our communities dementia friendly is an idea whose time has come.
And memory cafés are playing important roles in galvanizing Dementia Friendly movements in the UK, Australia and now in the US. What does it mean to create a Dementia Friendly Community and how are memory cafés helping with these efforts? A recent report laying out Australia’s new Dementia Friendly Society initiative cites a formal definition for Dementia Friendly originally put forth by Sam Davis and colleagues in 2009:
“A cohesive system of support that recognizes the experiences of the person with dementia and best provides assistance for the person to remain engaged in everyday life in a meaningful way."
On a more practical level, this process can begin by asking people with memory loss and their caregivers what can be done on a community level to improve the quality of their daily lives, and then creating alliances that bring people and organizations together to implement these changes.
Additional first steps have included educating the public and creating a system of recognition that can be used by businesses who are trying to become more Dementia Friendly. The UK is addressing the education piece with their innovative Dementia Friends public campaign, which recruits people in the community to learn more about dementia and then become advocates to help people with dementia feel more understood and included in their communities. Their goal is to enlist one million Dementia Friends by 2015.
In terms of symbolic recognition, the Alzheimer’s Society has developed a new ‘forget-me-not’ inspired symbol.
Businesses will display this symbol to show that they are committed to becoming dementia friendly and that their actions have met certain criteria that support the values and standards of people living with dementia in their community. Many others are using the Purple Angel Dementia Aware International symbol featured at the top of this post.
How can memory cafés contribute?
At the most basic level, memory cafés everywhere make communities more dementia friendly simply by providing a place free of stigma where people living with memory loss and their caregivers can relax, socialize and really connect with others experiencing similar life circumstances. In the Australian report mentioned above, maintaining and expanding their Memory Lane Café program is an important element of their overall Dementia Friendly initiative.
But some organizers of memory cafés are taking it one step further and working actively to promote the Dementia Friendly movement in their communities. For example, the Falmouth Memory Café in England is working directly with their local Dementia Action Alliance, seeking the views of people with dementia on what is still needed in their community. One of the top responses so far has been the need to have a singing program, and Falmouth Memory Café has responded by helping to create a twice-monthly movement and music program called “Thanks for the Memory.” The Flamouth Memory Café website also provides a link to the national Dementia Friends sign up page, encouraging readers to join the country's broader Dementia Challenge campaign.
In the US, John and Susan McFadden have begun an ambitious project to make their Wisconsin community dementia friendly, starting with the creation of five new memory cafés.
“Memory cafés are the low hanging fruit—an easy way to start making your community more dementia friendly,” says John McFadden, co-founder of the Fox Valley Memory Project and a part-time chaplain for the memory care units at Appleton Health Care Center.
In 2011, the McFaddens published Aging Together, a book addressing the important intersection of community, friendship and living with memory loss. After traveling abroad to study the UK’s dementia friendly practices and connecting with like-minded leaders in their Fox Valley neighborhood, the McFaddens began working on a comprehensive plan to facilitate development of socially inclusive programs, accessible support services, and educational opportunities for both health care professionals and the public. You can read more about their exciting plans here.
Again, their process began with creation of memory cafés.
It is clear that these low-cost, relatively easy-to-start programs can raise awareness around dementia-related needs and are becoming an important first step in larger Dementia Friendly campaigns. And, in countries that do not yet have formal Dementia Friendly initiatives, memory café organizers and volunteers can be ‘dementia friends’—spreading the word and spurring Dementia Friendly change at the grassroots level.
We are going to hear much more about this topic in the coming year. “Living Well in a Dementia-Friendly Society” is the theme of the Alzheimer Europe meeting in Malta this October. I plan to attend and will report back on the topic here, focusing on presentations that relate to how memory cafés are contributing to this exciting new movement.
Are memory cafés community-based programs with a specific structure or are they loosely organized neighborhood social gatherings? The answer is both, and everything in between.
A little history on the memory café movement might be helpful first. The concept dates back to 1997, when a Dutch psychologist, Bère Miesen opened the first program in the Netherlands. His motivation was to provide a relaxed social venue where people could connect with peers and professionals to discuss dementia-related issues in an atmosphere that encouraged recognition and acceptance.
Dr. Miesen’s “Alzheimer’s Café” had a focus on socializing but also included psychological education about dementia and dementia caregiving. In terms of program format, the original café and current UK Alzheimer’s Cafés that follow Dr. Miesen’s philosophy, provide time for socializing before and after an educational presentation that is part of a themed sequence related to the progression of dementia-related symptoms. The official Alzheimer’s Café UK organization endorsed by Dr. Miesen has also published a set of program quality control criteria that they believe help to maintain the ‘core elements’ of the original Alzheimer’s café vision.
However, similar socially focused café programs with more variable formats have emerged from this original concept. And while “Alzheimer’s Café” originally referred to the type of program described above, this name, and names such as “memory café,” “dementia café” and “memory care café,” are now used for programs with a wide range of formats. Some café founders, particularly in the UK, have made the distinction that “Alzheimer’s cafés” are more structured and educational in nature. But keep in mind that there are programs with the “memory café” name in the US and the UK that provide structured activities or educational program elements, and programs with the “Alzheimer’s café” name that are primarily social in nature.
These nomenclature issues have led to some confusion. For this post and on this website generally, I plan to refer to the broader umbrella of café programs as memory cafés. It is my hope that the content presented here can be of use to all of these related café programs.
The one common denominator for all café formats seems to be providing a venue for social engagement in a nonjudgmental, relaxed atmosphere. Beyond that, the use of entertainment, activities, educational presentations, informal counseling, or other support elements varies widely from café to café.
Carole Larkin, a practicing geriatric care manager who has guided the development of five memory cafés in communities north of Dallas, says that she aimed to keep the format simple and costs low in order to facilitate the spread of memory cafés in the area. She describes their café format as very loose: provide food and drinks, and have a volunteer eldercare professional present to open the meeting and distribute name tags. After that, she says, attendees take over. In addition to making the cafés easy to develop and run, Larkin believes this minimalist format gives attendees a sense of ownership and creates a social normalcy that many structured community-based programs lack.
But Larkin confirms that across the US, café program structures do “run the gamut.” And that’s fitting because these programs are meant to be grassroots efforts that meet the specific social, cultural and logistical needs of the people who attend them.
Café program format can also change over time. Lori La Bey, founder of Arthur’s Memory Café in Roseville MN, says they started out with games and icebreaker activities as people were getting to know one another, but with time, there has been a shift towards simply having informal conversation. Larkin says this has been true for the suburban Dallas cafés as well, and adds that a bin of games and puzzles continues to be available as an option at their meetings.
Memory Cafés sometimes take on a more structured format in rural areas where communities have fewer adult day program and support group options. In the Cornwall region of the UK, which is fairly rural, most memory cafés have activities such as reminiscence-oriented games and quizzes. Some also have social workers available to answer questions on an informal basis and others incorporate a 'caregiver's corner' feature, which provides additional respite opportunities for caregivers.
Activities offered by cafés may also be a matter of available talent. A new memory café just starting up in San Francisco, headed by Caitlin Morgan and Patricia Ris, offers art activities at their café meetings in part because Ris has a background in developing artistic enrichment programs for older adults.
So perhaps the answer to the question to structure or not to structure, depends on the needs of the community and the resources that are available. The key may be to continue the conversation about how the format is meeting the community’s expectations as the memory café evolves.
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