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Report from the conference - 2002 Alzheimer Disease International (ADI) Conference Barcelona

By Marilyn Truscott, Alzheimer Society of Hamilton and Halton, Ontario, Canada, Dec. 17, 2002

The warmth of Barcelona has very quickly been replaced by the cold winds and snow and sleet of southern Ontario early winter. But the warmth of my new friendships made at the Alzheimer Disease International (A.D.I.) Conference will long remain. My photos are back from the print shop already, and I can begin reliving the memories of a wonderful time in Barcelona.

My trip to Barcelona started way back in June, when I decided to submit a proposal to Alzheimer Society of Canada to send an abstract to the A.D.I. Conference and look for advice and funding. I wanted to tell the international community about the wonderful progress we have made in Canada in supporting people in the early stages of Alzheimer Disease and related dementias, as well as their families. And I wanted to talk about the important participation which people with dementia have in our Alzheimer Societies across Canada. The response I received from the national office, our Alzheimer Society of Ontario, and my local Alzheimer Society of Hamilton and Halton was most encouraging and enthusiastic. They also wanted to tell the world about the exciting things we are doing in Canada.

Support for people in the early stages of diseases of dementia, and inclusion in the Alzheimer associations are very current topics with A.D.I., I was to find, when the lists of topics came out in the preliminary program. And other people with dementia were slated to give talks. This would be an exciting meeting!

I started to prepare for my presentation. I needed information about early stage support services across Canada, and Barbara Snelgrove, Manager of Support Services and Education for the Alzheimer Society of Canada, sent my list of questions to the provincial offices and local chapters. Barbara was amazing! She collected all of the replies, and tabulated and organized them into a large, very readable table, which made it easy for me to understand the results. From those results my speech flowed readily, and the results were then easy to summarize into a 6 page handout. Barbara took my rough draft and made it look professional, complete with colour graphics made by the staff. The handout was to serve as a supplement to my talk, listing the support services we have in Canada, special activities, the literature available, and the ways our groups and individuals have worked in the Alzheimer Society to raise funds, raise awareness, review and develop literature and policy.

After months of work preparing the talk and handout, and much anticipation, suddenly it was time to pack our suitcases and head for Barcelona. My husband Bill accompanied me and looked after every detail of making the trip easy for me. Like most people attending the meeting, we arrived early to adjust to the very long travel time (more than 16 hours, with our plane change in London), and the 6 hour time difference, and to have a bit of time to tour the beautiful city before becoming immersed in the conference. I knew that once the conference started I would want to attend lots of sessions and I was very excited about meeting other participants, especially the other people with dementia who were slated to attend.

Our group of People with Dementia was a small one, only five of us, but it was a most significant group in terms of what we accomplished. I had already "met" the others on the DASNI internet site, since our own DASNI expert and Vice President of DASNI, Lynn Jackson, from Vancouver, had arranged for those of us planning to attend the conference to have a temporary group e-mail contact point, while we made our plans to attend. I knew I would at last be meeting Christine Bryden from Australia, Jeanne Lee from Hawaii and Peter Ashley from England. And I was looking forward to spending time with Lynn Jackson, who I’d had the pleasure of getting to know at the Alzheimer Society of Canada meeting in Calgary in April, where we both gave presentations.

I knew our Group of Five would be continuing with a "working group" for People with Dementia, which started last year at the A.D.I. conference in Christchurch, New Zealand. As more people with dementia come to these meetings representing more countries, we will be able to provide A.D.I. with a larger and firmer voice, share ideas and experiences to help each other solve problems and get renewed enthusiasm to take back to our own countries to improve services there.

Bill and I arrived at our hotel on Sunday afternoon, and I spent the rest of the day recovering from the trip. Monday we headed for the conference venue, the Palacio de Congresos de Cataluna, where we checked the layout of the rooms and decided how we would best travel there from our hotel. The weather was so lovely after a cold October in Ontario, that for our touring we chose to walk as much as possible, and we used the very convenient and inexpensive Metro (subway) and the tourist bus system (13 Euros per day per person to get on and off at designated spots in a circular route through the tourist sites). We tried to squeeze in as much sight-seeing as possible, being mindful of my low energy levels and short attention span, and the need to conserve energy for the conference. We saw the city superficially compared to the hard-core tourists, skipping lightly in and out of the Park Guell, the Sagrida Familia, the Cathedral, the Maritime Museum, the Military Museum, the Ceramic Museum, the Aquarium, Poble Espanol, the Picasso Museum and the Joan Miro Museum. We strolled in the historic areas of Gothic age and streets with modern architecture, where buildings were designed by famous Spanish architects such as Gaudi. The city is truly an architect’s dream.

During a late lunch at the ManGo outdoor patio restaurant near our hotel on Tuesday, we were surprised by Pat Shaw, President, Debbie Beryzynski, and Steve Rudin, Executive Director from the Alzheimer Society of Canada and his wife, who had just arrived from Canada and were adjusting to jet lag. We enjoyed lunch together, a leisurely time to plan our mutual goals at the conference, before the rush of activities overtook us. Pat had come to represent Canada on the A.D.I. Council and to chair the workshop on activities for people with dementia. Debbie was to chair a session, and Steve and Debbie were to handle the Canada information booth, which, it later turned out, was swamped by inquisitive people from the beginning to the end of the conference.

We fitted in our touring before the conference and at the end of conference days, almost running to see as much as we could. Fortunately the museums had very late closing hours. The local people were extremely helpful and courteous. Bill speaks reasonably good Spanish from his early years working in South America, and he enjoyed sitting up front with the taxi drivers, and learning about the city from them.

Wednesday morning came, and our role in the conference began. The A.D.I. Council had invited our Group of Five as well as our carers to attend the A.D.I. Council meeting as observers. Bill and I walked into the meeting room and, at last, I met my counterparts, Christine, Jeanne, Lynn, and Peter, and Jeanne’s sister, Caroline Ashton from Oregon, and Peter’s wife Ann. The Council members sat at the edges of long tables. Dr. Nori Graham, Council president, asked us all to introduce ourselves and say where we were from. There were approximately 50 countries represented. Finances and business were discussed, new member countries approved.

An important item on the agenda arose to set an international policy on driving. Steve Teckosky, the new Science Panel chairman, discussed plans to make international driving recommendations. Dr. Graham asked our Group of Five to respond, and each of us gave a description of our own experiences and our ideas about driving restrictions and how policies would have to be set very carefully, with a lot of input. Later Dr. Graham thanked us for opening the Council’s eyes that involving people with dementia will help give them the necessary guidance and input to set policy correctly. The A.D.I. plan is to include people with dementia as members of Council in the future, so we will have a direct voice.

After the Council meeting, Bill and I had lunch with Peter and Anne Ashley. Later, meeting up with Lynn, Christine and Jeanne, it was arranged that our DASNI group would go to dinner that evening after the Congress Reception.

The reception was held in the Palau de Reial Pedralbes, a palace used until the 1920’s for the King and Queen’s visits to Barcelona. An ornate building complete with period paintings, oriental rugs, a throne room, and lush landscaped grounds, the Palau houses the Museum of Ceramic and Decorative Arts, and displays hundreds of beautiful hand-painted Spanish tiles, plates, vases, and wall decorations. It was a treat to attend a reception in this lovely building.

After the reception, our DASN group, with our carers Ann, Caroline and Bill, as well as Helen Regan from A.D.I. and Dr. Verna Schofield, the A.D.I. liaison between our Group and A.D.I., searched for taxis to take us to a quaint restaurant in the heart of downtown Barcelona for a typical Catalan-style meal and much laughter and fellowship. Two people from DASNI, Joe and Penny, who had been unable to attend the meeting because Joe is recovering from an experimental innovative procedure, very generously sent money to cover the costs of this meal. We made many toasts to their good health, to absent friends at DASNI and elsewhere and to all the other people with dementia we hoped to represent. What a memorable evening!

On Thursday the conference started in earnest, with opening speakers, a choreographed orchestral piece written expressly for this conference. And next the Plenary Session. Peter Ashley was one of these first speakers, and gave a moving description of his experiences living with dementia. Peter shared his story of his complex, puzzling medical history and long delay in diagnosis, which fell into place once he was finally identified to have Lewy Body Dementia. He described his day to day struggles, but his determination to live fully despite the diagnosis. Peter stressed, "I’m living with dementia, not dying with dementia". Peter stressed his motto to the assembled crowd and received a standing ovation. This is a message I find is widely shared by people in the early stages of dementia, who try to focus on living creatively and joyfully, and not focusing on the terminal aspects of our disease. I believe we must continue to emphasize in our speeches the fact that we have an incurable terminal disease that requires massive amounts of research funding to stop, and please hurry up with it! But meanwhile, as people with dementia, we must focus on quality living today and make the best we can of our lives.

The people attending the conference showed that they were appreciative of our Group’s participation and gave us many opportunities to speak or respond to questions during sessions. And there were so many interesting sessions to choose from! I felt especially privileged to have taken in the session on "Activities for People with Dementia", skillfully and sensitively chaired by Pat Shaw. What an inspiring session it was, and it reaffirmed my conviction about the wonderful resource people we have working in the field of dementia to provide exciting, stimulating and joyful programs and to devise ways to bring out the person inside when communication fails.

Alastair Addison (U.K.) talked about the holistic-based activity programs they devise for individual residents at their care facility, fostering independence, spirituality and enhanced social life. Jane Verity (Australia) talked about their "Spark of Life" program, which focuses on the quality of enjoyment of doing an activity: the activity is simply the catalyst. She described how they boost self-esteem and invite and encourage their “Sunshine Club” members to be creative, expressive and be leaders, and do activities where each individual can be successful.

La Doris Heinly (U.S.A.) showed how art interaction, using collages, can help people to express their inner thoughts. She uses this method to help people with dementia and their carers to understand and solve interpersonal problems. She demonstrated powerfully that we learn to censor our words but not our art, and by getting the person to talk about their art, inner feelings can be revealed.

Virginia Bell (U.S.A.) told us about their Best Friends Approach, nurturing the spirit through art, music, and other creative and spiritual pursuits, and trying to move feelings from the negative side to the positive side. She emphasized that what a people with dementia needs most is a “good friend”, and that for people with dementia the 'present moment' is vital, since the past and future become less and less viable concepts.

Mike Ellison (U.K.) described the programs in the United Kingdom for younger people with dementia, and enabling this younger group to have improved social inclusion, with networks to link people and their carers. We know that the younger age group has unique problems because they usually lose their jobs and standard of living drastically due to dementia, often while still raising families. Information about the U.K. program can be found at www.alzheimers.org.uk/ypwd.

On Thursday afternoon our Group was featured in a session chaired by Alan Jacques titled, "Involving People with Dementia". First Verna Schofield talked about the "Emergence of People with Dementia as a Political Force". She traced the changes in the view of people with dementia from the medical approach (in which people with dementia were viewed as patients and "sufferers"), to the social approach (in which society defines disability), to the normalizing model (in which people are made to be "normal" and independent and conceal their disability, and on to the new Empowerment Model, in which the goal is interdependence and acceptance in society. The goals now are to give people with dementia the access to power (to self-determination), and access to information and to the diagnosis, including the incumbent risks. This model enables people with dementia to take collective action and to assume leadership roles in their disability. Because of the unpredictable and limited time span of the best functioning of people with dementia, they must be supported with goodwill and commitment to do this.

My own speech was titled "Living with Early Stage Dementia - The Canadian Experience". I talked about the development of programs for people with early stage dementia in Canada, and what we have available now. I also provided a handout, made by me and Barbara Snelgrove of the Alzheimer Society of Canada, detailing these services and the literature available for us through the Alzheimer Society of Canada. My speech is included at the end of this report.

Peter Ashley’s talk, titled "A personal experience of dementia", gave his personal history and diagnosis of Lewy Body Dementia and his difficulties with this disease. He talked about the full life he has been able to design for himself despite his diagnosis, including volunteer work as a Board member for the Alzheimer Society of the United Kingdom and paid work as a medical director in his area.

Jed Levine of the United States described the conference the Alzheimer Society of the U.S. had for and by people with early stage dementia in his speech "The human face of Alzheimer’s: The creation of a conference by and for people with early stage AD". He gave a history of the support programs for people with early stage dementia in the U.S., and the conference they ultimately held in 2001, "The Human Face of Alzheimers - Breaking Through The Stigma", which included Maureen Reagan, daughter of President Ronald Reagan. This year’s conference was called "From Advocacy to Action". They are planning their next conference in New York for November, 2003.

In their speech "Family communication: are we all hearing the same thing", Christine Bryden and Michelle McGrath of Australia talked about the difficulties of family communications. They reported on workshops held with carers and people with dementia in separate groups, and had both groups tackle the same prepared set of questions. The answers revealed striking difference between the two groups, which led to fruitful discussions and clarifications.

Lynn Jackson of Canada (DASNI) gave a paper by Carole Mulligan (U.S. - DASNI) which described the goals of people with dementia in DASNI (Dementia Advocacy and Support Network International). It was very clear how powerful an international internet communications system can be to enable people from diverse backgrounds and experiences to share problems and solutions, information, encouragement and friendship. It has been my belief (and my experience) that the networking we do inside Canada has helped to reduce the feeling of isolation and lack of power among people with dementia, and given us the sense of being part of a special group that is collectively stronger than the individual and more capable than each of us alone. The adage "there is strength is numbers" certainly applies for us. Expanded to the international scale, how powerful it will be to extend our network support to include more people, and to have a greater voice for advocacy issues that concern us all. This is a goal we should all work toward. To join DASNI, simply go the website www.dasninternational.org, and meet a wonderful group of people with dementia who communicate regularly through chat times and reports.

This workshop was certainly productive. Lynn reported that after the workshop representatives from seven countries came to the DASNI booth to ask how they could start support groups and how they could join DASNI. We were gratified to find that the interest in providing services and supports for our group is spreading world-wide and very pleased that we could be a catalyst to help this growth.

Friday was the second day for our group to participate, in the workshop titled "How Alzheimer Associations can be more inclusive of people with dementia", chaired by Verna Schofield. Four countries were represented in a panel. Peter Ashley and Harry Cayton from the U.K. talked about the programs in the U.K. to include people with dementia in the work of the Alzheimer Society in their country, including a description of Peter's work as a Board member.

Pat Shaw and I talked about our experience and plans in Canada. Pat told the history of how the Alzheimer Society in British Columbia came to bring a person with dementia (Elaine Wright) on to its Board. I talked about the ways in which people with dementia can participate in work for the Society and what kinds of supports we need to be enabled to do these activities, including physical supports and advance planning and also appropriate financial support. My handout detailing these activities and supports is given at the end of this report.

Stephen McConnell from the U.S. described their Alzheimer Society goal to have all the U.S. chapters focus on common policies, and including people with dementia and providing services for us is a priority. They have at present difficulties of lack of cohesion and common goals and uneven progress of many chapters. A number of chapters are doing exemplary work, he stated. Glenn Rees from Australia described the programs to involve people with dementia in the Alzheimer Society in Australia.

Christine Bryden and Jeanne Lee attended this session and they contributed valuable comments from their own experiences. Christine gave more details on the programs in New South Wales and Queensland, and remarked with regret on the lack of programs available in other areas of Australia. Jeanne Lee made a compelling statement that the U.S. support programs do not extend to Hawaii, and Stephen replied that unfortunately policies that the head office decides on are not implemented evenly across the country, due to the generally independent structure of the chapters, but it is their goal to improve that. We read letters in DASNI describing some areas of various countries where support services are excellent, and other areas where services are non-existent. The U.S., Canada and Australia have many similarities: vast countries with generally independent organizations of Alzheimer Society offices, and we all have a long way to go to ensure excellent services and early diagnosis programs are distributed evenly throughout our countries. In many countries there are no services available at all for people in the early stages of dementia. Hopefully through A.D.I. the countries which have good services can act as mentors for the countries which do not.

The highlight of the evening was a lovely banquet, held at the Estacio de Franca, a refurbished historic railway station in the centre of Barcelona. What a beautiful building for a train station! We dined and danced while trains came and went on adjacent tracks.

Saturday arrived, the last day of the conference and another early day, and our DASNI group and carers, along with Verna Schofield and Helen Regan of A.D.I., had a wrap-up meeting. We reviewed the conference, and discussed problems with the organization, scheduling, food and logistics we’d experienced in terms of people with dementia. We also looked at potential problems with the Caracas meeting next year for people like us who will want to attend. We discussed ways to ensure that more people with dementia could attend the A.D.I. conferences from many additional countries, and questioned how to get funding to enable this. We pushed for increased participation by us in the A.D.I. Council activities. We left Helen Regan with a very long list of problems to look into. At this writing Helen, a most capable and industrious person, has already accomplished a huge number of the items on her list.

After the meeting, and packing up the DASNI booth, there were still more sessions to try to attend, although the conference was quickly coming to an end. It was certainly a fantastic conference. So many exciting sessions had been going on simultaneously, that it was impossible to hear all I wanted. My husband ran into a few of the scientific sessions quickly while I rested, and he was very encouraged to hear about the latest research on drug therapies and to talk personally with some of the prominent researchers present, including Dr. Howard Feldman (Canada) and Dr. Roger Bullock (U.K.). I had a long discussion with Dr. Ken Rockwood (Canada) about his innovative methods for assessing the effectiveness of Alzheimer medications, but unfortunately I could not attend his workshop. Nor could I attend the session on possible strategies to prevent Alzheimer’s disease and vascular dementia (which included Dr. Serge Gauthier, Canada), depressions and dementia, stimulation programs for people with dementia at home, art and speech therapy, reminiscence therapy, nor the sessions on Lewy Body dementia, frontaltemporal lobe dementia or genetics. I had hoped to attend the music therapy session given by Kristin Theurer (Canada) and the workshop on support groups by Robyn Yale, but there were conflicts. There were so many sessions of potential interest to me as a person with Alzheimer Disease. Too many sessions, and too little time and energy. My advice is: if you come to one of these exciting international meetings, bring along a couple of clones, to help you take in the extra sessions! But do try to attend an A.D.I. meeting. It is a wonderful experience. I advise people with dementia to come with carers who can keep us safe, monitor our activities and energy levels and watch that we over-enthusiastic conference goers don’t become overextended and fatigued. A conference like this can be overwhelming and ultimately confusing, and is held in large cities where simply getting to the conference centre can be a major undertaking. A carer is a vital "piece of the luggage" to bring along!

I want to thank the Alzheimer Society of Canada, the Alzheimer Society of Ontario, and the Alzheimer Society of Hamilton and Halton for providing financial assistance so that my I could attend this conference and be accompanied by my care-giver husband. I especially want to thank Barbara Snelgrove for all of the help she gave me to get information organized for my talk and to make the handout for it. And I want to acknowledge with gratitude the tremendous support from my husband Bill and his participation in editing this report.

LIVING WITH EARLY STAGE DEMENTIA - THE CANADIAN EXPERIENCE

For a Presentation at the 18th International Conference of Alzheimer’s Disease International, Barcelona, Spain, October 24, 2002, Oral Presentation Session "Involving People with Dementia"

by Marilyn Truscott, Alzheimer Society of Hamilton and Halton, Ontario, Canada

Good afternoon. Greetings from Canada. It’s a great pleasure to be here with you today to share information with members from other countries.

In Canada, people with early stage Dementia have a strong support system in our partnership with the Alzheimer Society national, the provincial and local Society offices across the country. The movement to provide people with the disease with services and opportunities has been growing steadily over the past decade. There is much still remaining to do, but we are very pleased with what has been accomplished to date.

How does our partnership work? To prepare this speech, I needed information from the chapters across Canada. Barbara Snelgrove, Manager of Support Services and Education for the national office, worked with me to get that information and to organize it into a handout for you. With this sort of collaboration I, and others, can accomplish what we believe may benefit other people with Dementia, and we can have opportunities to do wonderful volunteer activities.

The Alzheimer Society in Canada was the first organization in the world to recognize the need to promote research and to alleviate the personal and social consequences of Alzheimer Disease. This was done with supports for caregivers and indirectly helped the persons with the illness. Back in those days people were usually diagnosed much later in the disease process when communication and thinking abilities were already badly affected, so it was difficult to know what supports the person wanted. Also with the stigma, many did not feel comfortable coming forward to talk about their personal experience. But by 1994 the Society had developed a publication for the person with the disease, called “Just for You”. Individual counseling was occasionally being done. The first formal support program for people with the disease started in 1993, when a few people with Alzheimer Disease got together to share their common problems. By 1999 there were only approximately 8 such groups. Now, in 2002 there are close to 60 support groups in Canada. How did this explosion of support services happen?

Since early 1999 we have had some dramatic changes in Canada: more awareness of the disease and early symptoms, earlier diagnosis, and importantly, Alzheimer medications were becoming available. And people with the disease became visible and very actively made their needs known. Phyllis Dyck, an Alzheimer Society Regional leader from British Columbia, decided to involve us to speak publicly to raise awareness and tell others directly what support and services we needed. She took three of us to speak to the public, to health care workers, to doctors, newspapers, radio and television. Most importantly, we spoke to the Alzheimer Societies in key-note speeches at the provincial annual meeting in British Columbia in 2000 and at the national conference in Halifax in 2001. These two major speeches enabled a very large number of people in the Alzheimer Societies from across Canada to hear directly from persons with the disease, what we were experiencing, what help we needed, how peer support groups help us, and how they should involve us in the Alzheimer Society to build better supportive services for people in early stage.

This helped open the door to us, because it helped change the way the Society and other health care professionals thought about Dementia. More people with the disease started to talk publicly and give interviews. Our public awareness campaign in talks and the news media was living proof of the benefit of diagnosing people early and using medication and other supports as soon as possible; and this brought many people into the Alzheimer Society offices asking for help, and for services. And when these needs were known, the Society responded enthusiastically.

Well, that is our history. Once people with the disease became actively involved and started to work with the Alzheimer Society, the services for us exploded, and Society offices across the country formed peer support groups. Today our Alzheimer Societies are constantly looking for new ways to help us, and to make better information and services for us. If we have an idea, we bring it to them, and we make it happen together. The Alzheimer Society of Canada asks us for input on every aspect of the services they make and plan for us. People with dementia are now serving on boards and committees inside the Alzheimer Society. We are fully included, along with caregivers and health care professionals.

Now, I’ll describe the programs that we presently have in place. Details about our programs and activities are given in the handouts we have available for you. First, our peer support groups. Most of these groups are run by a staff facilitator, and some include a group member as co-facilitator. Most groups have both information and peer support, and a social component, with agendas generally determined by the groups themselves. Although most support groups have meetings for members-only, many groups include care-givers (care-partners) in joint meetings, others only for specific meetings or discussions. Alzheimer Society staff support us by arranging and organizing the meetings, telephoning with reminders, occasionally arranging transportation, and making the coffee and snacks.

Other programs our Alzheimer Society offices have in some places include social programs, educational speakers and workshops, one-on-one counseling, recreational and art programs, mediation and couple-counseling. The Kelowna, British Columbia group even has an annual retreat with workshops. A few Societies have one-on-one at-home volunteer companion programs to build self-esteem and provide specific stimulation for some members.

Group members serve on many boards and committees for the Alzheimer Society in program planning, fund-raising, and public education, and on related community boards. Members in London, Ontario are helping to plan a conference for people with dementia, slated for August, 2003, and Kelowna is planning one as well. We give speeches to the public, nursing home staff, nursing and psychology students, doctors, and recreational and occupational therapists at conferences, workshops and small meetings, as individuals or in panel presentations. We do interviews for radio, television, newspapers and magazines. We can do this with the organization and support of Alzheimer Society staff, who arrange transportation and lodging, accompany us to meetings and interviews, give us moral support, step in and help us if we have problems. They help us to have an “on” day when we have to perform.

Our group members are doing exciting and novel things. My support group in Kelowna, British Columbia wrote the booklet “Memory Problems?”, a resource for people with dementia written by people with dementia. This is included in your hand-out. We participated in numerous focus groups for the Alzheimer Society to look at issues that affect patients, ethical guidelines, and what we want from our doctors. We review the new materials and videos being developed, and the web-page for people with dementia. Some early stage groups are studied in university research projects in gerontology, occupational therapy, and psychology and psychosocial studies.

Our group members, as individuals are also doing activities to help others. Norma wrote a comedy play about dementia to be used as a fundraiser. I have written journal articles and serve as a reviewer for Alzheimer journals and a newsletter for patients. Jim developed a computer spread-sheet time and memory management system to aid peoples’ memories. Anne gave a workshop on conflict resolution to members of the Society. Lynn Jackson has been working to get people with dementia to link up by internet on the international scale through her work on the Board and as president of DASN.

We also do group political advocacy. In British Columbia members are trying to arrange free drug coverage for the Alzheimer medications, already free for many people in some of the other provinces. In Quebec, our French-speaking province, members pressed for change in the use of the word "dementia", which, culturally, they find offensive, and they have succeeded.

People with dementia are benefiting enormously from our partnership with the Alzheimer Society. But not enough people are benefiting. We have much left to do and many specific challenges. Our country is very large, with small pockets of population scattered thinly across it. How do we get services to remote areas and small towns where the population is low? Perhaps teleconferencing and internet will help. Canada is a mosaic of many different language and cultural groups, and many of these groups stay in isolation. We can’t easily find out if these groups want services, and what these services might be. And we don’t have our literature translated into all the languages we might want. For example, my city of Hamilton is home to more than 100 distinct language groups.

There are also great difficulties in getting support services going in huge, sprawling, busy, culturally diverse cities, in which it is physically hard to access services. We need up-to-date training of our medical doctors in advances in dementia diagnosis. We need these doctors to link people into services in the Alzheimer Society right from the doctor’s office.

Can our programs be adapted for other countries? Yes, and we can be used as resources to share our experiences. Use our hand-out, and give us a call. Can we learn from other countries? Most certainly! I’ve described some of the challenges we face in Canada. Perhaps you already have solutions, or other special programs we can adopt. What an opportunity we have at this conference, to form networks and see how we can share ideas and help each other provide better services for everyone with the disease, around the world.

HOW ALZHEIMER ASSOCIATIONS CAN BE MORE INCLUSIVE OF PEOPLE WITH DEMENTIA

For a Presentation at the 18th International Conference of Alzheimer’s Disease International, Barcelona, Spain, October 25, 2002.

Marilyn Truscott, Alzheimer Society of Hamilton and Halton, Ontario, Canada

GOAL: TO ENABLE PEOPLE WITH DEMENTIA TO PARTICIPATE IN THE ALZHEIMER SOCIETY, TO THE DEGREE WE WANT TO AND CAN.

1. WHAT CAN PEOPLE WITH DEMENTIA DO?

A. Boards and committees

B. fund-raising - planning and activities

C. evaluate programs, review documents relating to people with dementia for inclusive language, use their understanding of the experience and viewpoint of people with dementia to review policies and literature

D. education programs for public, care-givers, health care professionals,(including doctors, nurses, etc.)

E. make useful literature for the Society on subjects of interest, coping strategies, etc.

F. advocacy programs to make changes in public policy, government funding

G. International work:

a. link up with groups of people with dementia elsewhere for world-wide network of support, ideas, programs; can be done with newsletters sent on e-mail to Alzheimer Society offices, members can comment back

b. provide a voice to encourage people in countries with minimal resources for dementia to move forward,

c. provide advocacy for people with dementia in other countries in their struggles to get local programs and local funding for their needs

2. HOW CAN PEOPLE WITH DEMENTIA BE SUPPORTED TO DO THESE ACTIVITIES

A. Speaking Projects: use panel-style presentations of a few people sitting together in a panel group, using a facilitator to ensure success for all. This works better for many people with communications difficulties than if they present as a single person alone on a stage. Use written outlines to keep people on track on a subject.

B. To get information, ideas and feedback from us: use a focus group approach, with a facilitator, as needed, to lead discussions and include everyone´s ideas and opinions

C. Allow extra time to complete activities; start far ahead of completion date

D. Alzheimer Society can remind us of project components and deadlines and give us feedback to help us stay on track, keep in mind we have "on" and "off" days

E. Give advance notice about meeting agendas and projects with a list of questions so we can think about our ideas and plans far in advance

F. Alzheimer Society can give special help as is needed, e.g. computer assistance and training, getting information together, reading help for people who can not read or write well now

G. Give us and our care-givers training in how to do advocacy (e.g. Alz. Soc. of B.C. gives advocacy workshops)

H. Give us and our care-givers training in conflict resolution

I. Give us training in handling the media

J. Give us ideas and help on how to travel (If you have or use travel tips now, please contact me)

K. Alzheimer Societies must budget funding for these projects being aware we are volunteers often with no outside income (cover costs as much as possible)

L. Encourage care-givers to know value of this work for people with dementia, so they will give us the appropriate support