Saturday, October 8, 2011

A few thoughts on the Alzheimer Europe Conference

1. It was marvelous to experience this time with 500 people of many different nationalities who share a common commitment to serving persons diagnosed with dementia and their care-givers, along with those doing the research that may one day reduce its impact on quality of life. It was wonderfully refreshing to note that “research” and “service” are not the either/or choice (or competitors for funding) that they often seem to be in the USA. We attended a most impressive lecture on research about potential drugs that will work “upstream,” meaning that they would address the disease process many years before symptomology appears (once a person is symptomatic, existing pharmacological interventions are only of modest help, and there is scant hope that this will change; once the brain is severely damaged, the damage is permanent). But the presenter, a brilliant Polish scientist, argued passionately that even when/if such drugs are developed, the need for psychosocial interventions will be as great as ever. Clearly the need is for researchers, medical professionals, social service providers, care-givers and persons with the diagnosis to work as a mutually supportive team. Folks in Europe seem to understand this, and we have much to learn from them.

2. We were deeply moved by the many young adults who are passionately committed to providing various services to persons with dementia and their carers. Avril from Dublin has trained volunteer mediators to work with families having difficulty in reaching consensus on the forms of care a loved one should receive. Monica from Warsaw gives herself to simply being present to persons with dementia through an organization called “Little Brothers, Friends of the Elderly.” We met people who organize extended outings for persons with dementia in Germany, others who run a residential “folk high school” (which includes lectures by distinguished presenters) in Norway, and people who oversee all kinds of cafes and day programs.

3. Although there were many people present with impressive credentials there was no “pecking order;” rather there was a spirit of community with a common purpose. Distinguished psychiatrists and senior scientists listened attentively to presentations offered by nervous young research assistants. Persons diagnosed with dementia shared the podium with physicians and scientists. People were here to learn from one another. Our own presentations were well received (we were among a small handful of people from the USA.), and people sought us out to offer their gratitude and ask questions. We collected many cards and email addresses, and are all but certain we will reconnect with many of our new friends.

4. It was touching to learn that so many people automatically assumed that the USA is far ahead of the rest of the world in research, treatment, social services, etc. The sad truth is that the opposite is true. The Emilia-Romagna region of Italy (population 4.4 million)alone has 53 dementia centers committed to providing “a correct and early diagnosis.” Our immediate region of Wisconsin (the Fox Valley) has one center. Most European cities and towns provide multiple day service centers, various café programs, etc. We offer almost nothing, allowing the burden to fall solely on the person with dementia and his or her immediate family.

5. We heard a talk by Glenn Rees, the CEO of Alzheimer’s Australia. He described their core mission as providing information, education, support, and advocacy. In recent years, they have made the decision to emphasize changing the health care system in Australia; they believe this will help far more people than trying to offer direct services to a small proportion of the population. Their vision is “for a society committed to the prevention of dementia, while valuing and supporting people living with dementia.” They have a coordinated campaign to “Fight Dementia” by encouraging the government to pay more attention to consumer-directed care, particularly respite services. We asked him what he thinks of the goal to “cure dementia” and he said his organization never uses the word “cure.” Australia is obviously a long way from Europe, and others journeyed here from South Korea, Northern Africa, etc. The American Alzheimer’s Association was not represented at all.

6. There were many presentations about diagnosing AD and other dementias. Only about one third of persons with dementia are ever properly diagnosed. Persons with dementia described experiences in which their general care physician dismissed their concerns, responding to their reports of forgetfulness and confusion with the suggestion that they “needed a bit of rest.” The average time between the appearance of symptoms and receiving a proper diagnosis varies widely from country to country, but averages about two years. Those are “lost years” in terms of receiving information, support and guidance. General practitioners must become better educated about dementia and there need to be many more diagnostic and assessment centers to which they can direct their patients.

7. One of themes to be addressed at next year’s conference in Vienna (which we will attend only if a rich uncle we do not know about dies and leaves us a large gift) is “Dementia Friendly Communities.” We hope that in the next year we can play a small start in beginning to build such communities.

Friday, October 7, 2011

Dementia: The grand challenge of the next 50 years



The Alzheimer Europe conference officially opened today with a lecture by a Professor of Mental Health and Ageing at King's College, London. He firmly stated that quality of life can be good at any stage of dementia, although to get to that goal, much work must be done. About 35.6 million people in the world now have dementia, a number that will double in 30 years (or, more pessimistically, according to a Delphi study done in 2005, it will be 81.1 million). A Polish neurologist followed up that lecture by arguing that we need to create a dementia-friendly society, although unfortunately, many people never get the diagnosis and either live in blissful ignorance, or suffer the "slings and arrows" of memory loss, never accessing the good programs in place to support them and the people who care about them. The second plenary session featured a German psychiatrist who offered an excellent "Dementia Microbiology 101" lecture with some of the best designed PowerPoint slides we've ever seen. He was realistic about the slow development of novel treatments to neutralize the events occurring upstream in the pathological cascade, events that now go unnoticed for 20 or more years before accumulated damage finally is expressed in forgetfulness and functional change. His last statement was heartening: instead of pitting pharmacological against psychosocial treatments (often somewhat pejoratively called "non-pharmacological") he firmly asserted that new drug treatments (e.g., immunization to build up antibodies against beta amyloid) will increase the need for psychosocial treatments as people will live longer with milder symptoms. A Polish neurologist followed that lecture with one on the genetics of Alzheimer's (delivered in Polish but translated through our headsets). The final plenary session of the morning by a Dutch sociologist addressed effective psychosocial interventions. She ended her talk with a Chinese proverb: We cannot prevent that birds of sorrow fly over, but we can prevent that they build nests in our hair.

We had a delightful (free) and delicious lunch with 4 people from Ireland, 2 young Poles, and two women from Turkey. Our lively table conversation careened through a number of topics. We still have not met anyone from the US.

We split up to attend different parallel sessions in the afternoon, coming away from all of them with renewed respect for the creative work being done in many countries to improve quality of life for people living with dementia and those who care for them. Both the morning and afternoon sessions featured coffee breaks with many tempting sweets and enjoyable conversations. In all, each of us heard 10 different presentations in the afternoon, leaving us impressed and yes, a bit tired. A quiet dinner for two in the hotel restaurant that serves some of the best food we've ever had in a hotel restaurant gave us a chance to review the day and anticipate what will come tomorrow.

Thursday, October 6, 2011

The international language of dementia


We have now spent two full days in Warsaw, Poland, and have filled them with a variety of activities. On the first morning, we walked to a large, upscale mall where we purchased an ethernet adaptor for our laptop at the iSpot (Polish Apple Store). [When we heard that the world is grieving the death of Steve Jobs today, we wondered whether there was some kind of memorial at the store in Warsaw.] In the afternoon, a doctoral student who had just handed in her dissertation met us at our hotel and took us on the tram to the University of Warsaw where we gave a brief talk to students enrolled in a 5-year BS/MS program in psychology, taught in English. This program attracts students from all over the world.



Today we visited an adult day program and a nursing home built in 2010. In our group were two people from France, one from Germany, and two Poles, one who volunteers with the Polish Alzheimer's Society and one who's a geriatrician. The international language of dementia is spoken by professionals from many countries devoting their energies to the lives of people living with dementia (people with the diagnosis and their carers).

The day program shares space in a older building with a similar program for adults with psychiatric challenges, although the two groups do not interact. It serves one "district" of Warsaw. The director thinks that with its capacity of 12, it is more than adequate for the district's needs, but the geriatrician escorting us believes that the need is several times greater. Much of what we saw was familiar from our time in similar facilities in the U.S. and U.K. - creative engagement, warm support from volunteers and staff, etc. We quickly learned that it is easier for us to communicate effectively with persons with dementia than with those who don't have dementia but who speak Polish, German, French, etc.

After a quick stop at "the best bakery in Warsaw," we moved on to the nursing home. It is one of 14 owned and run by the city of Warsaw, the newest and the only one entirely devoted to persons with dementia. The building is striking in many ways - modern, architecturally dramatic, "green" certified, etc. It currently serves 90 residents. When the former nursing home building next door is renovated, it will serve 120 plus another 30 in day care. (The city has not yet gotten its act together on that part of the mission, so a wonderful day care facility is currently underutilized). We were amazed to see the large number of private spacious offices for psychologists, social workers, and other professional staff. We saw the residents' dining areas (with table cloths and centerpieces on each table), the single and double occupancy rooms (each with a bathroom that includes a shower that can be used by people in wheelchairs), a beautiful sun filled chapel, several gardens and patios, and rooms for hydrotherapy, physical exercise, massage, light therapy, arts/crafts, "daily living" (with a small kitchen where people can cook things not prepared by the main kitchen) and relaxation (a room for people to rest in sunshine)--and of course, a hair salon where all residents go twice a week. For all this, people pay 70% of their pension (whatever it is); it costs 5000 zlotys/month (about $1500); if they can afford it, families are asked to kick in 400 zlotys/month toward the total. Our pictures here show the GLASS staircase (viewed from the ground floor looking up at a painting on a skylight) that people with dementia seem to have little trouble negotiating (there are also a lot of elevators) and the relaxation room. We had a long discussion with the director (ably translated by the geriatrician) who's worked at the nursing home since 1975. He's justifiably proud of this new building and the programs they're offering to 90 residents of Warsaw living well with forgetfulness.

Thursday, September 22, 2011

Article in Crosscut references our book

Tony Robinson is a columnist for Crosscut, an on-line newspaper for the city of Seattle. He has written a fine piece on our fear of dementia, making reference to our book. Read it here.

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!

Friday, June 3, 2011

A Reminder: Why We Need Memory Cafes

This morning I got a call from my friend Ruth, who works in one of our Goodwill stores. Like many Goodwill folks, she also works a second job, spending two days each week in a hair salon with an older customer base. She has told a number of her customers about our book, resulting in a purchase or two. If I can get a few more hairdressers marketing for us, we may wind up with a best-seller.

Ruth was at the hair salon, and handed her phone to a customer whose husband appears to be moving rapidly into dementia. The woman is getting no sleep because he is prone to wander at night. Their family physician referred them to the Alzheimer’s Center of Excellence six weeks ago, and of course they are still waiting for an appointment. I did not have the heart to tell her that they will likely be waiting a good while longer for an evaluation, given how overtaxed the Center is these days.

I asked her if she had called the Alzheimer’s Association. She attended one of their presentations several months ago and filled out a “please contact me” card, but never heard from them. This is also not surprising: local chapters of the Alzheimer’s Association are covering larger territories with smaller staffs as the national organization directs more time and money to advocacy and less to service. I urged her to call the local chapter and tell them that she is at the end of her coping resources and needs immediate support and assistance. I hope that they hear her urgency and exhaustion, and that someone can make the time to work with her on a strategy to at least make life workable until her husband’s evaluation.

Multiply this woman by at least 500 in our local area alone. Resources are inadequate to meet existing needs, and those needs will grow exponentially in the coming years. I urge readers to support their local Alzheimer’s Association. I also urge them to attend medical school and become geriatric psychiatrists, although I am not optimistic on that one.

A part of the answer must be more and better front-line resources where people can learn about progressive memory loss and about where and how to seek assistance and support. Not just physicians need to be knowledgeable about dementia, but also pharmacists, dentists, hairdressers, cashiers, bank tellers, bartenders—all those who regularly interact with older persons.

And of course we need Memory Cafes in every community, just as there now are throughout Great Britain. Susan and I will be spending time in England next month visiting Memory Cafes, learning what makes them so extraordinarily successful. When we return we will begin to develop a program that we dare to hope can serve as a national model. We believe our city offers an ideal setting because of a tight cluster of resources in a six-block area downtown – two possible settings for the actual Cafes (one a non-profit coffee shop run by Goodwill that is warm and cozy, the other a senior center that would provide a better setting for those who need brighter light and less bustle)—and a number of museums, art studios, the YMCA, etc. with whom to collaborate both on bringing creative activities into the Cafes and providing opportunities for outings and events. There will be much preparation to do before the Cafes can open—recruiting and training volunteers, collaborating with a wide range of service providers, etc.

Memory Cafes are, first and foremost, a setting in which persons with memory loss can share fun and laughter with their care partners and friends in a setting free from awkwardness and stigma. But they are also a setting where accurate information about resources is available and relationships with persons in similar circumstances are formed. And they are a vehicle for bringing dementia “out of the closet” and into the heart of community. The call from Ruth, my hairdresser friend, is one more reminder of how badly they are needed.

Tuesday, May 17, 2011

What Has Changed?

Our book has now been published after a gestation period of nearly 18 months. I hope that it will be well received, and hope more deeply that it will prove valuable and helpful to those who realize that “We Are All Living With Dementia.”

Eighteen months is a long time, so I find myself reflecting on what has changed in the last year and a half, and how the book might have been different had we been aware of those changes while we were writing it. Three major themes come to mind as I ponder these questions:

1. Failed Clinical Trials. At least two touted and heavily-funded clinical trials failed spectacularly, one ending early because the participants were getting worse rather than better. The learning seems to be that there are in fact drugs that can dissolve the plaque that characterizes (Causes? Accompanies? Protects from?) Alzheimer’s disease, but that once developed the plaque becomes the last thing holding neurological connections together. Many researchers now believe that treating fully-developed Alzheimer’s is a clinical dead-end,and therefore any real hope lies in early diagnosis and pharmacological intervention before the plaque is established. This suggests that a day may come where medications may slow or mitigate the progress of dementia, but that a “cure” for existing dementia will not happen in most of our lifetimes, if ever. To use the somewhat alarmist language of the Alzheimer’s Association, many in the baby-boom generation will die from, or with, dementia. We must accomplish through living joyous friendship within flourishing communities what medical science cannot.

2. New Diagnostic Categories. We note in the book that MCI (Mild Cognitive Impairment) is a controversial and much-debated condition, but since we completed our manuscript it has become an official diagnostic category (although debate continues as to whether it is always a precursor to dementia). More recently a new term has surfaced, Subjective Cognitive Impairment, loosely defined as “I know something is not right even though clinical tests do not confirm it.” There is an emerging debate between those who wish to “harden the categories” by defining cognitive conditions with immutable labels and those who argue that as we age, cognitive change take place across a vast spectrum of grey that defies tidy categorization. We lean strongly towards the latter, but will watch with interest as the debate unfolds.

3. The Web. This is the one I did not see coming. Over the last year or so, the number of websites, blogs and Facebook groups developed by persons diagnosed with dementia and their care partners has proliferated at an altogether remarkable rate. Information is being shared, support is being offered and received, and community is being formed in powerful and important ways. Ideas – Memory Cafes would be one example – are being shared across the lines of nation and culture. Watch for this blossoming to double and triple at an astounding rate. Dr. Richard Taylor argues that dementia rights are fifty years behind disability rights. The web will likely close this gap quickly.

These changes in understanding and attitude are significant. This makes it even more important that in the midst of change we focus on the things that abide, the things that dementia cannot take from us. Joy and laughter. Meaning and purpose. Worth and value. Friendship and community. We are hard-wired to be in relationship with one another. These are the things that cannot and will not change.

Tuesday, April 26, 2011

New Guidelines for Diagnosing Alzheimer’s

“Expert Panels” convened by the National Institute on Aging and the Alzheimer’s Association have offered new guidelines for diagnosis which include earlier stages of the disease. The new guidelines establish three stages: early brain changes, mild cognitive impairment and full-blown Alzheimer's. The new guidelines are being published in Alzheimer's and Dementia: The Journal of the Alzheimer's Association.

The question now being hotly debated is whether these new guidelines are positive and helpful, broadening awareness that the effects of brain aging take place over a wide spectrum, or whether they reinforce the clinically-unproven argument that all persons diagnosed with MCI will inevitably convert to Alzheimer’s. For example, Debbie Benczkowski, head of the Alzheimer’s Society of Canada, fears that if these guidelines are accepted in Canada they will label and stigmatize people as Alzheimer’s sufferers who will never develop the disease.

But Danny George argues that there may be important hidden benefits from the new guidelines because they place AD in a continuum: "Metaphorically, the notion of a continuum moves us away from the “you have it or you don’t” mentality that has for decades separated persons with the unified condition of “AD (mild, moderate & severe)” from the rest of us who live in fear of acquiring “it”. Instead of categorical “boxes” we are now presented with a continuum featuring differing degrees of severity. Generally speaking, the DSM-V seems to be drifting more towards continuum based classification of conditions (as evidenced by conditions such as autism spectrum disorders and others)."

Clearly this debate will need some time to unfold; the new guidelines offer both potential risks and rewards. If the number of persons diagnosed with AD suddenly doubles to include many persons with no clear signs of memory loss or cognitive decline, will that lead to these persons being stigmatized? Or will it have the opposite effect? Will it bring wider understanding that we are all living within a continuum of brain changes as we age, and therefore those experiencing AD (or other dementias) do not exist on the other side of a hard line between those who "have it" and those who do not? One can hope for the latter, but we need to be very careful not to permit the former.

Tuesday, April 5, 2011

Subjective Cognitive Impairment

“One-quarter to one-half of community-dwelling older adults report subjective cognitive complaints, such as forgetfulness and word-finding difficulties.” So report Abhilash Desai, MD, and Lauren Schwarz, PhD, in an article published in Current Psychiatry. Desai and Schwarz differentiate Subjective Cognitive Impairment (SCI) from Mild Cognitive Impairment (MCI) because in the former there is no supporting objective evidence from neuropsychological testing or evidence of functional decline.

But these are not merely the “worried well.” Persons reporting SCI are 4.5 times more likely to develop MCI or dementia within seven years than those who report no such concerns. Which is to say that a significant number of older adults are aware that “something is not right” long before clinical diagnosis of their condition becomes possible.

It makes for a confusing stew, not just of cognitive conditions among older adults, but of perceptions of these conditions. There are persons journeying into dementia. There are persons with MCI. And there are persons experiencing “healthy aging” and the changes in memory function that almost universally attend it (“senior moments,” misplaced keys, etc.), some of whom worry about these lapses, some of whom accept them without concern, and some of whom deny them ferociously. Those who are aware of these changes and concerned about them now have a term they can claim: SCI.

For some but not all, Desai and Schwarz suggest, SCI will be a precursor to MCI, which in turn may or may not convert to Alzheimer’s disease or another dementia. For others, it may indicate nothing more than anxiety about developing dementia or a general tendency to worry. Even as clinical categories of memory loss and cognitive decline become more rigidly defined in some circles, the lived experience of older adults appears to speak more of many shades of grey. There are those who are clearly experiencing cognitive loss who yet remain happy, engaged and fulfilled (the “pleasantly confused,” as one friend put it). There are those whose cognitive health is well within the “normal” range who yet become crippled by fear and anxiety over small lapses in memory. And there are many, many folks who fall somewhere in between.

Diagnostic categories are certainly valuable, and early diagnosis of AD and other dementias will play an increasingly important role, not only in allowing earlier (and hopefully more effective) pharmacological intervention, but also in motivating persons to make lifestyle changes that may slow the rate of progression and almost certainly will make for a higher quality of overall life. But there is growing evidence that fixed, rigid categories will never be able to encompass the wide range of lived experiences of aging. As we age, whatever our cognitive state, we all require the same things to flourish as fully as possible: love, laughter, joy, friendship, meaning and purpose. All of these things are fully possible within dementia, but all of them can be easily undermined by fear and anxiety. One is tempted to quote Churchill: the real enemy in the journey of aging is not cognitive loss, it is fear itself.

Thursday, March 17, 2011

The Narrative of Fear vs. the Narrative of Hope

There are competing narratives about Alzheimer’s disease, the narrative of fear and the narrative of hope. The narrative of fear is filled with words like “devastating,” “deteriorating,” “debilitating,” and “heartbreaking,” all of which can be found in the third paragraph of the Alzheimer’s Association’s new report, “generation Alzheimer’s: the defining disease of the baby boomers.” A page later we come to the terms “crisis” and epidemic,” and even then the narrative of fear is just beginning to build a head of steam. It perhaps reaches its zenith with the words “Most of America’s baby boomers will spend their retirement years either with Alzheimer’s disease or caring for someone who has it.” If you are experiencing a distinct shortage of fear and dread in your life, you can order a copy from them. Oh, the report is not available on the Alzheimer’s Association website: you must provide contact information, and then they will email you a copy. Which likely means you will receive many more emails and letters filled with fearful language and a plea for funds.

There is a bit of hope woven into this narrative of fear: the hope that with enough research (and enough money to fund it) we will surely find a cure for AD (“Scientists believe we are at a tipping point right now!”) and baby boomers will live joyously in a lovely land of rainbows and unicorns. I must be talking to the wrong researchers, because the ones I know are investing their hopes in early diagnosis and treatment that begins long before the symptoms of dementia present themselves, not in “curing” AD that has already developed. And they do not think this will happen next week, or next year.

There is certainly truth woven into the narrative of fear. It claims that research on AD and other dementias is terribly underfunded, and that ageism is a factor in this underfunding. I can’t argue with that one. There is growing evidence that AD will one day be preventable in some persons and better manageable in others. But for the majority of baby boomers, any pharmacological breakthrough will likely come too late to benefit them directly.

Let me be very blunt: the Alzheimer’s Association is engaging in fear-mongering in this report, and an unavoidable consequence of such fear-mongering is to further stigmatize those already living with AD. How can it not when so many words of horror and revulsion are used to describe the condition and the cost to society it brings? Ironically, local chapters of the Alzheimer’s Association continue to do wonderful work, providing support and services to many, many people living with AD and their care partners, even as the national organization has shifted its emphasis to research advocacy and fund-raising, focusing on “curing” AD rather than serving those already living with it.

I support the cause of more dollars for research, but reject the narrative of fear. In our book, Susan and I hopefully make a contribution to the narrative of hope, arguing that a person living with dementia remains fully a person, able to share in relationships of love and laughter, and that communities must find creative new ways to value and include those of us journeying into progressive memory loss. We are not Pollyannas who deny that dementia can bring terrible hardship, particularly in the late stages. But we believe that it is not only possible, but morally essential, to seek the fullness and goodness of life for our friends with dementia.

Another voice in the narrative of hope is Michael Friedman, who in a marvelous article in The Huffington Post (which has recently published a number of excellent pieces about dementia) talks about how he used to fear developing dementia so badly that he used the standard line “just shoot me,” but increasingly is able to envision living with dementia while still experiencing love and joy. He concludes with these words:

There are, as we all know, people with dementia who become depressed, frightened or angry -- some so angry that they are abusive to people who try to care for them. There are some people with dementia who wonder why they are alive, or wish for death.

But there are also people with dementia who experience pleasure, who feel love and who are at peace.

So, even though I still fear developing dementia, I no longer say with any sense of certainty, "Just shoot me."

Friday, February 25, 2011

AD Often Misdiagnosed

A recent study by Dr. Lon White of the Kuakini Medical System in Honolulu found that in fully half of persons who had been diagnosed with Alzheimer’s disease, brain autopsies showed no evidence of Alzheimer’s, although in some cases there was indication of other forms of dementia. AD too often goes undiagnosed and untreated, but this study suggests that the opposite may also be true–that AD becomes a convenient label to toss on any older person who demonstrates signs of confusion or memory loss. The study noted that the older the patient, the more likely he or she was to be misdiagnosed. One can only wonder how many of those persons were actually suffering from a treatable condition, such as depression, that went unaddressed.

Early and accurate diagnosis of AD and other dementias can lead to treatment that may slow the course of the disease or mitigate its severity, or at the very least improve the overall quality of life within the reality of progressive memory loss. But misdiagnosis can consign a person with a treatable condition to abandonment by medical professionals and stigmatization by society. One can only wish that a few of the dollars being directed to research to “cure” AD might be redirected to training front-line medical professionals in accurate diagnostic techniques and educating them about the resources to which those so diagnosed could be directed.

Saturday, January 29, 2011

Can Humor about Dementia be Healthy?

A primary goal of our book is to challenge the destructive stereotypes about Alzheimer's disease and other forms of progressive memory loss that create fear, anxiety and stigma. So what, then, are we to make of the humor, often uncomfortable and slightly mean-spirited, about dementia (of the "you get to meet so many new people!" type) born of that fear? Often I wince. And yet making fun of the things we fear in order to put them into proper perspective is a human coping mechanism that begins in early childhood - Bram Stoker's fearsome Count Dracula becomes The Count on Sesame Street - and continues throughout our entire lives.

This raises the interesting question of whether aging Baby Boomers, living with ongoing anxiety over the possibility that they, or those they love, will journey into dementia, can find healthy ways to give honest expression to that anxiety through humor. This song by Pam Peterson elicited an initial wince from me, but because it is clever and very funny I watched all of it. Now I find myself thinking that this may be the sort of healthy, honest "name the anxiety but do not allow yourself to be ruled by it" humor that can ultimately reduce stigma and help us live what Joseph de Rivera (whose work we explore extensively in the book) terms "fear subordinated to love." It can also serve to reinforce the truth that changes in memory affect all persons as they age, perhaps making us less likely to embrace the exaggerated dichotomy that too often isolates those contending with dementia. Watch this video and let me know what you think.

Friday, January 21, 2011

Memory Cafes

There is a “closed group” on Facebook where persons experiencing memory loss can share their experiences with one another, sometimes expressed humorously and sometimes with great pathos. It is a wonderful, global community of support for persons living with dementia, and I feel privileged to be included in this conversation (contact me if you would like to be invited to participate). It was from a British member of this group that I first learned about a marvelous program called “Memory Cafes.”

The program began in Holland, but it has flourished in Great Britain over the past nine years to the point where most communities host at least one or two Memory Café gatherings each month. The model varies from location to location, but its essence is creating a time (commonly two hours) and place where persons with early-stage dementia and their “carers” (to use the term employed in Great Britain) can come together to share social time unhampered by stigma, awkwardness or discomfort. One of the goals is to make certain no distinction is made between those who are living with memory loss and those who are not—all participants are simply enjoying time with one another. Refreshments are offered, and there are often games and activities. Music is an important component of a Memory Cafe. Sometimes there will be resource people present to provide helpful information to participants, but such offerings are secondary to the social dimension of the event. Often, important ongoing friendship are formed.

To date, Memory Cafes have yet to establish a significant presence in the United States; I am currently in the early stages of setting up a pilot program in our local area. I will provide helpful links below for those interested in exploring the concept. It is an inexpensive program to run, and one that makes a huge difference in the lives of persons living with dementia and those who love them. Here are a few comments from participants in Cornwall:

“This time here when I come to the Memory Café, is the only time I feel like I am me again.’”
“I come in with a stranger and go home with my husband.”


Memory Cafes put into practice everything that Susan and I write about in our book. In the United States, dementia is commonly regarded as a private matter to be contended with solely by family members and professional caregivers. Long–term friends withdraw from the relationship because of awkwardness or fear, leaving the person with dementia increasingly isolated. Memory Cafes recognize that we are ALL living with the reality of dementia, and the most appropriate and essential response is to create hospitable spaces in our communities where friendship, love and laughter can be shared by all. It is a model I would like to see flourish here.

Links:

The Rotary Clubs of Great Britain have made dementia a priority in their mission, and have been instrumental in supporting Memory Cafes. One club has prepared this Guide to Setting up a Memory Café.

This is a guide to Memory Cafes in Cornwall, including links to some unusual (and thoroughly British) resources for use in Memory Cafes.

This is Devon’s factsheet on Memory Cafes.

I particularly like this brief piece from Cornwall, which includes quotes and pictures.

Tuesday, January 4, 2011

The Semantics of Dementia

Susan and I have had many conversations about what we do and do not wish when death comes to one of us. Should that death come as a result of cancer, we both agree, the surviving spouse is not allowed to include the phrase “after a courageous battle with cancer” in the obituary. It is bad enough to have terminal cancer, and I would prefer not to have the social requirement to be “courageous” about it added to the burden. But I object even more strenuously to the word “battle,” yet another example of how we use the language of warfare to take about disease. We declare “war” on diseases, we “hit them with the heavy artillery,” we are committed to “conquering” every condition that hastens the mortality we wish to deny altogether. If you do not choose to “battle” your disease with courage, you are labeled a failure at having cancer.

Daniel R. George has written an important essay for The Lancet titledOvercoming the social death of dementia through language." He argues that “Guided by the language of warfare, we have come to view people with dementia as ‘victims’ who are ravaged by a singular marauding disease. Alzheimer’s disease is personified as a ‘mind-robber’ that ‘attacks’ or ‘strikes’ the brains of individuals…” Such language, he insists, demonizes the very aging process itself, a process that will bring cognitive changes to virtually all of us.

He challenges other words associated with dementia, including the prevalence of the word “burden” in describing not only the toll on caregivers, but upon wider society. “Burden” multiplied by the demographics of aging baby-boomers quickly gets us to the language of “crisis,” feeding the engines of fear and guilt (for “being a burden” is the ultimate sin in a consumer society which assigns value to persons almost exclusively upon the basis of their productivity).

Add more terms to the list. Dementia is a kind of “living death” that takes away the person and leaves only a “shell” behind. Dr. Richard Taylor wryly observes that “My dementia did not turn me into a turtle!”

The language we use to describe the changing circumstances of our life matter. When we declare “war!” on AD, we have established an unobtainable goal unless we are prepared to vanquish aging and death itself. I am fine with goals that include words like “delay” or “mitigate,” worthy goals that may one day be attainable.

But above all we need to eliminate the language of “victim” in describing persons with dementia, for a victim is someone to be pitied rather than enjoyed and appreciated. George notes that the Intergenerational School employs the word “mentor.” I would be happy with most any terms which suggest that the person with dementia is still among us, with his or her personhood intact even if changed. Personhood, after all, is always defined by both continuity and change. Perhaps “elder” is as good a word as any, for we will all become elders whose cognitive condition will change as we journey into late life. If we sort elders into two rigid categories, the “victims” and the “survivors,” we have created losers and winners in the contest of “aging well.” Life is neither a contest nor a war. It is a tapestry of relationships that will continue to be woven so long as we have life and breath.