Friday, July 29, 2011

“Memory Café Meets Here Today”




The sign outside the Baptist church on a hill leading down to the port of Falmouth announced the memory café. We arrived about a half hour early, in time to help the volunteers set up tables and chairs in a large room conveniently located by the kitchen. This bright room has many windows and importantly, a cupboard where volunteers can store some of their café supplies.

In England, Rotarians have organized a group called “REPoD” which stands for “Rotarians Easing Problems of Dementia.” About a year before our trip, we discovered that REPoD published an online pamphlet giving much useful information about setting up a Memory Café. Several retired men belonging to Rotary volunteer at the Falmouth café, along with a number of women, including the wife of one Rotarian who’s active in her local Lions Club. (The two of them later treated us to a delicious dinner at a classic pub.) These people were bustling about preparing for the arrival of participants.

Participants seemed eager to tell us about why they came to the café. One woman had taken three buses to get to Falmouth (and was grateful when someone offered her a ride home after the café ended). Another couple was there for the first time; the wife’s mom usually lives with her other daughter in another part of the country, but the couple was giving her a two week respite time and thought it would be a good idea to try coming to Memory Café. The mom seemed to enjoy herself and settled into the rhythm of the afternoon. This was the first café where we observed adult children present with parents.

One woman was recently widowed when her husband finally succumbed to a long-standing diagnosis of Alzheimer’s disease but, though nearly blind, she busily moved about helping other participants with the main activity of the day which was the creation and decoration of memory boxes. (Interestingly, at the cafés we visited, people referred far more often to dementia or “memory problems” than to Alzheimer’s disease.) Another woman came with her little dog who settled in contentedly beneath one of the tables.

Amazing to us was the participation of a local geriatric psychiatrist who treats many of the persons with dementia who come to the café. She was there with her son who’s about 8 years old and while she doesn’t come to all café gatherings, many participants seemed to know her. She had trained the volunteers, giving them information about forms and symptoms of dementia.

In all, there were about 35 people in that church social hall; as with all the cafés we visited, it was often hard to differentiate carers, carees, and volunteers. This “softening of categories” is central to the Memory Café experience: labels are erased and everyone together simply enjoys an afternoon of socializing and fun. Here’s what the Falmouth Memory Café’s brochure says about this: “You will have gathered that everyone is very friendly, relaxed, and welcoming. We are all equal and are treated as such. We respect each other’s abilities; at the same time we offer each other any help that may be needed from time to time with empathy and understanding. We usually have one or more professionals from the health care service on hand if a confidential chat is needed.”



When participants enter the room, they pass by Joan’s table. Joan has problems with her feet so can’t move around a lot, but she has the important role of giving out name tags (on lanyards) and making a list of participants’ first names. She said they tried name tags with safety pins but they were too hard to manipulate for some participants. Joan also keeps track of the notecards that record participants’ names, names of persons to contact in case of emergency, and health information.

The lotteries and a bit of fund-raising enabled the volunteer leaders of the café to purchase games, puzzles, and “sticky darts.” They had borrowed “sticky darts” for an earlier gathering and it had been such a hit that they decided to use some of their limited funds to purchase their own “sticky darts.” This is a large padded circle, larger than the usual dartboard, which hangs over a door; it has Velcro patches representing different point values, and people throw tennis-balls with Velcro at them. This was especially fun for several of the men who got into a rousing “sticky dart” competition for points. A first-time attendee, a man with very advanced vascular dementia, took great pride in being the day’s “champion.”

The energetic volunteer “activities lady” (the member of the Lions Club who later hosted us at the pub) had a veritable three-ring circus going at times. People could engage in a variety of activities, including word searches, making the memory boxes, and answering quiz questions. Every now and then, she’d ring a bell to get people’s attention. She maintains several notebooks constantly replenished with potential activities for the group to enjoy, and is always ready to fill in a lull of even a few minutes. By 2:30 everyone had assembled and she announced it was time for the “welcoming song.” At 3:00, the tea was ready. This café serves “egg and cress sandwiches” (the choice of sandwiches, like many other components of the café, was “democratically chosen”), cakes, coffee, and of course, tea. Around 4:00, the café closed with a departing song.

The spirit of fun and friendship pervades the two hour gathering. The volunteers move around, helping if needed, serving the tea (using real cups and plates), and stopping to chat with various participants. Joan told one story that exemplifies the gentle, welcoming spirit of the Memory Café. Several months ago, a woman brought her husband. He came to the door, heard the chatter in the room, saw all the people at the tables and turned around and said he didn’t want to come. Joan told his wife to go and sit by the door until he felt ready to come in. They did that and in about 15 minutes, they returned. They’ve been coming ever since.

Useful Information from Dedicated Volunteers



When we first started talking about our Memory Café tour in England, Susan wrote to all the persons whose email addresses appeared on the website for Cornwall Memory Cafés. This was not because we had the particular goal of visiting Cornwall, but because a general Google search for Memory Cafés in the UK turned up the Cornwall site. The first person who replied told us about her experience with Memory Cafés and invited us to a dinner at her home where she promised to introduce us to other café volunteers. Most generously, she also invited us to stay with her and her husband at their home a few miles south of Camelford.

After a delicious dinner and wide-ranging discussion, we adjourned to the living room where we looked at pictures from café gatherings and outings taken by the two café groups these volunteers help to organize. In one town, the café regularly attracts 30-40 participants (carers and carees, as they call them) and in the other town, about 20-30 persons attend each fortnightly session.

These two Memory Cafés operate much like the others we visited (although there seems to be some variation in when the tea is served and what accompanies the tea). Each meets for two hours in the afternoon (2-4 p.m.) and each offers a variety of programs. For example, the volunteers who met for dinner work with a group called Arts for Health: Cornwall and Isles of Scilly. The brochure for this organization states its mission of “improving health and well-being through creativity” with a special focus on “supporting Memory Cafés through arts and creativity.” Six “art practitioners” offer one free session to a café with subsequent visits costing a small fee. Cafés contract with the artists individually. Here are their descriptions of their programs:

Drama: “I am a fun loving multidisciplinary Cornish artist who works the worlds of performance, visual arts, photography, music and movement. Meet my stage characters over a cup of tea and have a bit of fun!”

Walter’s Wonderfool Tea Party: “Walter invites you all to join him at his tea party, with light-hearted sociable exercises, using music, props and sensory stimuli. Fun for all.”

Arts and Craft: “My art activities often involve words and images used together. One example of this is creating memory books of sayings with small prints sitting alongside text. We can make memories and conversations visual using simple print-making techniques.”

Dance: “I am offering a dance class with style! [We saw pictures of her in a lovely red dress; café participants had a grand time that afternoon.] Combining carefully selected music, movement props and poetry, I will provide stimulating and engaging activities to exercise our bodies, share memories, and have a good old sing along.”

Singing: “I offer singing sessions which can focus on sing-a-longs of songs throughout the decades as well as traditional and original compositions. The music can be used as a reminiscence aid, combined with physical and vocal warm-ups to relax the body and condition the voice. Sessions which focus on vocal wellbeing and exploring sounds and rhythms are also available.”

Creative Writing: “I am a writer using sensory ‘touchstones’ and words to connect, reconnect and engage people with dementia (and their carers) through creative activities that work well for groups or individuals.”

These descriptions are not unlike what one finds on the website of the organization “Artists for Alzheimer’s." What’s impressive is that they live and work in one county of England and they focus on bringing their talents to Memory Café participants. The brochure of their organization boldly states: “We focus upon the act of creativity itself as a positive tool for healing and change, emphasizing the creative process itself over the end result.” Another way of saying this is a phrase we heard often from Memory Café volunteers, and have also heard in Anne Basting’s TimeSlips creative storytelling trainings: these activities are “failure free.”

Returning to the after dinner conversation with the three Memory Café volunteers, we had quite a lengthy discussion of their concerns about whether the Alzheimer’s Society in the UK would “brand” Memory Cafés. The man who acts as treasurer of the group told how the Alzheimer’s Society asked for a kind of dues contribution from the two Memory Cafés where he volunteers. When he inquired about getting a “checkbook” so he could draw on the account for activities at the cafes, he learned there was no such thing. In other words, the money would flow in one direction only. These Memory Café volunteers believe that the UK Alzheimer’s Society has shifted its focus to fund-raising for research and though they know that’s important, they choose to invest their considerable energy in serving persons living with dementia directly.

As we watched the pictures on our host’s computer, we asked many questions about their “outings” which are quite popular with all participants. (A recent study conducted in the US that asked people living with dementia what activities they missed the most found that “outings” was a popular choice.) One of their Memory Café groups had recently visited a castle in Cornwall where they were treated to a tour and a tea. They always make sure someone accompanies these outings who has had first aid training, and they do a “risk assessment” prior to an outing checking for toilet availability, distance and condition of sidewalks, etc. Money to hire the bus to take 38 carees, carers, and volunteers to the castle came from the raffles and contributions. The treasurer/bookkeeper keeps careful records of raffle donations, and in-kind contributions for tea, coffee, biscuits, and raffle prizes.

Organizationally, each Memory Café in Cornwall has an annual general meeting (like the one that preceded our visit to Camelford). At the meeting, they appoint officers (usually a Chair, Treasurer, and Secretary), give reports, and review minutes of the previous meeting. Repeatedly, they emphasized how the cafés are operated by volunteers. It’s important to note that some of these volunteers also have careers; many work with older persons in social services and healthcare.

In addition to planning and organizing café gatherings and outings, these volunteers also work hard to get notices about their activities published in local newspapers. They also put posters in churches and doctors’ offices. Clearly it takes a lot of dedicated volunteers to help a Memory Café succeed.




As the evening was winding down, our host brought out the “intake form” they use for participants. This was unlike any intake form we’ve ever seen. It’s titled “All about Me” and is obviously meant to be something a carer and caree work on together. Instead of the usual dreary questions and scales, this one features small colorful pictures for each category. Examples are birthplace, children, occupation, key family members and friends, pets, faith, daily routines, favorite sayings, significant life events, etc. The health information they emphasize concerns epilepsy and diabetes. Obviously, some of this information is to protect the safety of participants, but much is used to design programs that will appeal to them. This intake form alone was a good example of the creative passion that has gone into the two Memory Café groups these volunteers so passionately support. We felt honored and privileged to have had the opportunity to learn so much from them.

Wednesday, July 27, 2011

Camelford: One of 21 Memory Cafés in Cornwall


We arrived around lunchtime in Camelford, parked the car in a public lot, and walked down a hill to the main street where we had spotted a pub on our way into town. The Masons Arms Pub was the perfect place to experience Cornish pub food: baked potatoes with cheese and baked beans, and “cream tea” which means two scones, clotted cream, jam and tea. It’s important to know that the cream goes on top of the jam in Cornwall as we later learned from the participants at the Memory Café.

We waited to arrive at the café until 2:30 because they were having their “annual general meeting” at 2:00. This café meets at the Anvil Court, a “sheltered accommodation,” something like what we’d called “assisted living” except that there is no staff on duty. Each resident has a small apartment (or “flat”) with a bell to pull in case of emergency that will ring at the local police station. About 10 of the café participants live at Anvil Court and the other 10 live elsewhere.

Folks were sitting around a large table when we arrived. There were several volunteers present in addition to Margaret who works for Cornwall Care (www.cornwallcare.org). Her business card for Cornwall Care reads: “My options…really helpful support if you are caring for an older friend or relative.” (This is the first time we have seen “friend” in an official slogan of a care organization for older persons, especially those who live with dementia.) One of the volunteers had just retired from Cornwall Care two weeks ago, but did not want to give up her contacts with café participants so she has returned as a volunteer. Another volunteer is a retired nurse who is also Mayor of Cornwall. The café ended at 4:00 and an hour later he had a meeting to argue against a big budget cut that would affect the ability of Camelford’s children to get swimming lessons. (The budgetary problems of the UK and the US are quickly filtering down to the local level where decisions affect “people we know.”)

We were warmly welcomed and asked to tell a bit about ourselves. Then Margaret led the group through a program based on an old book called The Language of Flowers. At the previous café meeting, she’d asked participants about their favorite flowers and for this meeting, she made PowerPoint slides of flowers that she showed on a large monitor. The mayor read from the book as each flower was shown and discussed. People had fun talking about the colors and scents of the various flowers, as well as the memories they associated with them. There was much chatter about the flowers that had been in Kate’s bouquet that she carried when she recently married Prince William.

One of the high points of the Camelford café (as well as the Falmouth one) is the lottery. This is how they raise money for the tea and cakes they serve. People contribute what they can and get raffle tickets. Someone from the group picks a number and people win various donated prizes (a box of sweets, a bar of soap, a ladies’ magazine, etc.).

While Margaret and the participants talked about flowers, the other volunteers prepared the tea. It’s important to note that the tea is served in real mugs (that later need to be washed and dried) and biscuits are served on plates.

At the end of the café, the participants sang a Cornish song for us. Several didn’t know the verses, but most joined enthusiastically in the chorus.



We had a good conversation with Margaret and learned more about the operation of their café. They have a newsletter that reminds participants of what has been done at previous gatherings and gives a schedule of what’s to come. She described how the regular “fortnightly” meetings of the café give her and the volunteers the opportunity to monitor people’s well-being. She says that enables them to identify problems early and thus to avoid some hospital admissions. That in itself sounds like a good argument to set up a memory café in a community.

We spoke with one participant who does not have memory problems, nor has she been a carer. Rather, she just likes to come to the café (she lives in the building). She said that she had come to understand those who do have memory problems and she enjoys being with them. To us, this sounds like friendship!

Saturday, July 23, 2011

In Hartpury with Arnold and Edna


We arrived yesterday in the small village of Hartpury, near Gloucester, where we are being wonderfully hosted by Rob Merchant, the rector of seven Anglican congregations in the area. This morning he took us to visit Arnold and Edna, a delightful couple who belong to one of the churches he serves. Arnold was diagnosed with dementia several years ago. He is a well-known and highly-regarded artist whose paintings carry a nostalgic appeal that has led to them being reproduced on biscuit tins and made into jigsaw puzzles. This is not meant pejoratively; his work is wonderfully constructed making fine use of color, and some of it is charmingly whimsical in a classic, Gil Elvgen pin-up style (always with Edna, a most attractive woman, as his model; she appears in some manner in all of his paintings).

Distressingly, the dementia has caused him to be unsatisfied with many of his paintings, and lately he has been "correcting" some of them by scraping portions off, leaving expanses of white where vibrant colors used to be. This creates an ethical dilemma for Edna. They are his works, after all--should he not be permitted to do with them as he wishes? But at the same time, can she allow the works which are the source of his considerable acclaim to be defaced, even by the artist husband she so dearly loves? She has tried to steer a middle course, hiding works she particularly values while grieving the manner in which he is damaging others in his restless dissatisfaction.

Even though his confusion is obvious, Arnold remains a witty and charming host. We had tea and cake (we have yet to enter an English home where we were not served tea) and then went from room to room to view his paintings.

Arnold and Edna regularly participate in numerous programs for persons with dementia and their carers. One is a Memory Cafe. A second is an art program in which they both paint. There is a "tea dance" once a month, and likewise a monthly dinner group that goes to a restaurant together. And then there is "Singing for the Brain,"a program that draws about fifty participants. They begin by singing one another's names, enjoy tea and biscuits, then sing beloved songs together. Arnold gets a great lift from these activities that stays with him for hours, even days.

Edna receives a "carer's allowance" from the government, and can use it to purchase three hours of respite care each week. A community psychiatric nurse who works with a consulting psychiatrist also visits both of them regularly in their home, and the psychiatrist comes to see Arnold in his own home. This is huge: Arnold does not have to contend with the anxiety or confusion that would come from traveling to an impersonal medical center.

Clearly the British government through the NHS has made a significant commitment to providing all that is necessary to keep persons with dementia in their own homes as long as possible. This means not just a much higher quality of life, but greatly reduced overall cost. People here refer to these programs as "social care." One can only scratch one's head and wonder why the American health care system has not yet discovered the obvious.

Recently there have been disturbing hints that Edna will not be able to maintain the present arrangement indefinitely. As is almost always the case, Arnold's dementia is progressing, and a point will likely come where Edna will not be able to provide for his needs at home. But further resources will be available to them to forestall that day for as long as possible. For example, Edna is still able to bathe him, but if a day comes when she can no longer do so she will be eligible for home health workers to do so. For the present they are able to share in a rich web of relationships and activities that greatly enhance the quality of life for both of them in their small, rural village. It is not always easy to be a carer, even under the best of circumstances. But we are impressed by, and envious of, the support Edna and so many like them are are receiving in the U.K.

Thursday, July 21, 2011

Schemes

On our first full day in England, we learned a new meaning of "schemes." We often take schemes to be nefarious, as in "scheming people," but today we visited two schemes and the Friendship Club which was established by Gaynor Hammond in 1997. Gaynor is a nurse and a Baptist minister who has spent many years advocating for congregations to pay attention to the spiritual needs of people living with dementia. She's a woman of great passion and energy, and she clearly loves the elders she works with.



The Friendship Club operates much like a Memory Cafe, except that it meets every week. We arrived a few minutes after Gaynor and club participants had settled in with tea and biscuits, sitting around a square table in a room in a church conveniently located by the kitchen. Everyone there this morning been a carer for a husband with dementia, all of whom have now passed on. However, they did not want to stop meeting, for the friendships they have formed and nurtured through the years have become a vital part of their lives. They eagerly anticipate other persons with dementia (and carers) joining them, but in the meantime, they continue to gather. After going around the table with introductions, they had a lively conversation that began with reminiscence about pictures Gaynor brought from club gatherings through the years. They reminded us about the importance of having opportunities to get together with friends on a frequent, regular basis. They spoke openly about dementia's challenges but also the particular gifts of persons whose memory has faded. Gaynor ended our gathering with a beautiful prayer in which she spoke about Jesus telling us to "seek the lost." Sometimes the "lost" are people who live with dementia because they and their carers become socially isolated due to stigma and fear.

And what about the schemes? Our next stop was at the "Live at Home Scheme," a gathering of volunteers and older persons (some with dementia) who get together at another church on Tuesdays for a "big lunch" and on Thursdays for a more informal lunch that in no way should be considered "small." There are 6 "Live at Home Schemes" in Leeds, a "scheme" being like an "organization." Run mostly by volunteers (and a manager and assistant manager paid by Methodist Homes), the scheme is responsible for visiting older persons in their homes and operating social programs like the lunch we attended today. We chatted with several participants as we ate our lunch.

Our last experience of a scheme was Memory Lane run by the West Leeds "Neighbourhood Network Scheme" (one of many schemes supporting older people with dementia and their carers in West Leeds). It meets in the Strawberry Lane Community Centre in Armley (a suburb of Leeds). Persons with dementia (fairly well advanced in at least two) were present with their carers, mostly spouses but a niece in one case. They were finishing a lovely lunch of quiche when we arrived, so we went into "the reminiscence room" to meet with Dawn, the program director. She is bright, passionate, and is a fierce champion of the rights and needs of elders, including those who are victims of abuse. Her scheme is dedicated to making certain older persons do not fall through the many cracks in the complex systems of social service delivery.

Dawn understands the central role of personal relationship in serving elders, especially those with dementia. She has known one aphasic woman attending today's program for 16 years, and although the woman does not communicate in obvious ways, she has such trust in Dawn that she is at ease with the people around her, including strangers, when she knows Dawn is present.



Participants, those with dementia and those without alike, created paintings under the guidance of Mary, a volunteer. One could not tell during the process which was which, nor did the completed paintings make any distinction. Art is art, and creative engagement remains possible in all cognitive states. When the group grows too large, Dawn creates a new group - she believes that once a group becomes larger than 20 it is too easily dominated by a single, strong personality. It was quite evident how much the program means to all who participate, and how eagerly they look forward to future gatherings (including a special, extended "1940s Party" coming soon).

Saturday, July 16, 2011

The Aging Together U.K. Road Trip

I have allowed this blog to lie fallow for quite some time. This coming Tuesday, July 19, Susan and I leave for England, where we will visit four different Memory Cafes (Leeds, Gloucester, Camelford and Falmouth)to observe the different models they employ and meet the folks who participate in them. We hope to post pictures and stories as we travel, and return much enriched and more knowledgeable. Please stay tuned!