Report from Japan: People with Dementia Begin to Share Their Experiences and Appeal to Society
1. Conference for and by People with Dementia, October 16–17, 2006
“Sometimes I’m so moved by just seeing a
beautiful cosmos flower in bloom.”
“I never knew it was so empowering to get together with other patients to talk with.”
“I don’t want people to feel sorry for me or pull away from me. I just want them to relate normally to me.”
“I would like help when I’m in need, but I’m not always in need.”
“My family needs help. Please help them.”
These were the feelings the participants expressed at Japan’s first People with Dementia Conference (PDC) held in October 2006 in Kyoto. Seven people with dementia from around the country attended the conference.
This was not the first event where people with dementia shared their feelings in public. For instance, at the 20th International Conference of Alzheimer’s Disease International (ADI), held in Kyoto in 2004, dementia sufferer Shunji Ochi made a profound impact on people nationwide with his speech. “It’s so frustrating being sick,” he told the conference attendees. “I want to work and be useful in society again. And I want to make things easier on my wife.” In addition, people with dementia have had opportunities to talk with one another at gatherings held for them and their families in various locales around the country. However, the PDC was not simply an event in which people with dementia joined, nor was it merely an opportunity for them to talk with one another (with their caregivers present at all times). It was in fact the first conference in Japan in which people with dementia themselves framed their own appeal to society.
People with Dementia Conference Overview
|Sponsor:||Support Council for People with Dementia Network
|Date:||October 16–17, 2006|
|Place:||Kyoto Kokusai Hotel|
|Purpose and funding:||The conference was held as part of the Campaign to Understand Dementia and Build Community Networks, a national movement to advance understanding of dementia and to support people with dementia and their families at the community level. It was funded by a research grant from the Ministry of Health, Labour and Welfare.|
As part of the Campaign to Understand Dementia and Build Community Networks,1 launched in 2005, the Support Council for People with Dementia Network（SCPDN）has been carrying out activities to help build networks among people with dementia so that they can meet and develop a sense of camaraderie and solidarity. These activities began with efforts to gather information and making it available online concerning local chapters of the Alzheimer’s Association Japan as well as various group meetings for families and/or patients themselves throughout the country. In 2006, the Support Council held the first PDC as the main event of the year.
On October 16, the first day of the conference, seven participants, each nominated by member organizations of SCPDN, gathered in Kyoto. At the venue, family and supporters stepped back to watch from a distance while the participants alone began the discussion moderated by SCPDN chairman Issho Matsumoto. They introduced themselves, spoke openly of their feelings and shared what they want to say to the society. One plea came through loud and clear. “People may feel that, when we have dementia, we’re worthless as human beings,” said a participant. “We’re not worthless as human beings. If there’s something to do, all we need is a little help, and we can do the work fine. But people don’t understand that and label us as memory impaired or cognitive impaired. We run up against these prejudices that shut us out. I would like to get rid of those prejudices.”
On October 17, the second day of the conference, the previous day’s discussions were reviewed and compiled into a PDC Appeal. The secretariat of the Support Council simply prepared a list of keywords that sum up the discussions of day 1, and with that help, the participants discussed and refined their messages into a 17-point PDC Appeal. In the discussion, various views were expressed. Some said, “The appeal shouldn’t be all about what we want from the society. There are many things we can do.” Others said, “It’s important for us to encourage other dementia sufferers.”
Profile of People with Dementia Conference Participants
|Gender||Men:5 ; Women:2|
|Age||40s:1; 50s:2; 60s:3; 70s:1|
|Place of residence||Communities throughout Japan|
|Employment status||Employed:4; On leave:1; Resigned for reasons of health:1; unemployed:1|
|Diagnosis||Alzheimer’s:6; Pick’s Disease:1|
|Time elapsed since diagnosis||Five months:1; One year:3; Two years:1; Five years:1; Six years:1|
After finalizing the text of the Appeal, the group met Christine Bryden of Australia and her husband. Ms. Bryden is one of the first people with dementia to speak out publicly. “I am marveled at the speed at which the measures for dementia have been implemented in Japan,” she said at the gathering. ”The idea of community-based support and the importance these measures place on it show a promise of success. Japan may very well be a world leader in this endeavor. In Australia, we issued the communiqué at the National Consumer Summit on Dementia in 2005 for people with dementia and their families. The Australian government developed the National Framework for Action on Dementia 2006–2010 in 2006.2 Based on these experiences, we have learned that it is important for patients and their families to lobby policy makers. In particular we need to demonstrate and persuade people that taking appropriate measures for dementia patients reduces medical and long-term care expenses and provides economic benefits to society as a whole.”
A press conference was held at the end of the PDC and was attended
by reporters representing 22 TV stations, newspapers, and magazine publishers.
Chairman Matsumoto of the Support Council briefed the content of the conference.
Mr. Shingo Nakata represented the conference participants and read the PDC Appeal.
Ms. Tamiko Yoshida and Ms. Fukiko Kato also took part in the press conference
as the conference participants.
Unfortunately, four of the seven conference participants refrained from attending the press conference due to prejudice they may receive in their community or workplace. It was a reminder that there is a persisting prejudice against people with dementia.
2. PDC, the Appeal, and Their Significance: From the Press Conference
1) Remarks by Conference Participants
Fukiko Kato: It is very special to meet people in our lives. I am truly thankful that I had the privilege to meet all of you here・・・In any way, I’m still alive, and while I’m alive, I plan to have a lot of neck and make way through the world.
Tamiko Yoshida: It was very heartening to meet people with the same problems, to see their faces and say “Good morning” to them. After we all go back to our own homes and communities, I will remember each person I met here. And I will be encouraged to live my life to the fullest.
Shingo Nakata: I think it was a very meaningful discussion. We are able to share our situation and opinions, and discuss how to support people with dementia in the years ahead. I hope that, in this way, we can continue to be of even a little help to people with dementia around the country and give them hope. It would be great if our group can, some day, impact the government and make a difference.
2) Issho Matsumoto (Chairman, SCPDN): Some of you may be under the impression that the patients who have gathered here today and spoken out can do so because their dementia is in its early stages, but that’s not the case. One of the participants was diagnosed as having dementia more than six years ago. It’s true that there are many people in the early stages of this sickness who are unable to express themselves verbally. I believe that this appeal truly expresses the shared feelings of people with dementia.
3) Kumiko Nagata (Senior Researcher, Tokyo Dementia Care Research and Training Center): I heard a great deal from the participants about the pain and loneliness they feel when people around them didn’t understand their wishes and capabilities. Many have the experiences of being hurt or getting worse by the way they were treated by people around them and medical professionals who disregard their wishes and capabilities. People with dementia need assistance to live. But assistance provided without an understanding of patients’ wishes and capabilities, however well-intentioned, can actually pain the patients, rendering the assistance ineffective. The first thing, then, is to understand patients’ wishes and capabilities. This means, for one thing, never assuming a patient can’t do something, however advanced his or her dementia appears to be. We should never forget the patient’s wish as an individual and the underlying strength he or she invariably has acquired over a long life. It is always important for us to strive to learn what these are.
4) Kunio Takami (President, Alzheimer’s Association Japan): I believe that the significance of the conference is five-fold. First is the fact that people with dementia held the conference themselves. This is the first time that the patients themselves held a meeting, instead of merely participating as guests at someone else’s meeting and answering questions from the moderator as in the past. Secondly, this is the first time that they have formulated an appeal to the society. The third and most important point, I think, is that these seven people fostered friendship and they encouraged one another. This shows that it is most strengthening for patients to connect and interact with one another. Fourth, the family members who accompanied the patients gained new insight into their spouses or parents. A number of them said they were “moved.” The patients and their families may live together every day, yet they hardly speak frankly to each other. The fifth significance is that the fact that the seven people gathered here today for a conference has given tremendous encouragement to the participants themselves as well as other people with dementia all over Japan.
5) Christine Bryden (Australia): The content of the Patients’ Conference Appeal struck a chord in me. It is not easy to live with dementia; it is extremely hard. But please do the best you can to go on living with a positive attitude. I would like to say this to family members: Focus on the things the patients can do and rejoice and praise about them. Do not focus on and despair over things they cannot do. Instead, focus on what’s really inside them when you care for them. Coming down with dementia does not reduce our significance. Please acknowledge the value and dignity of the lives of people with dementia.
People with Dementia Conference Appeal
■We want to create a place where people with dementia can talk with one another
|1.||We want to meet and talk to one another. We want to move forward by helping one another.|
|2.||We, too, want to share our various experiences with one another.|
|3.||We want to encourage and be useful to others with dementia.|
■Please understand that we have dementia
|4.||We want people to understand what is happening to us because of the disease and how we feel.|
|5.||We would like doctors to diagnose dementia early and support us as we face the future.|
|6.||We need to invest in the development of good medicines and develop high-priority drugs quickly.|
■Please hear how we feel
|7.||I want to live my own life.|
|8.||I have my own pleasures in life.|
|9.||We would like people to start by asking us what kind of support we need.|
|10.||There are many things we can do with just a little support.|
|11.||Do not assume that we cannot do something or are useless.|
■We want public measures to reflect our wishes
|12.||We want services that allow us to live the kind of life anyone has the right to expect.|
|13.||We want opportunities to make use of our own abilities and earn income.|
|14.||We want to make things easier on our families.|
■Message to our families
|15.||We want our families to realize that we want to support them as much as we can.|
|16.||We want our families to know that we are grateful to them.|
■Message to others with dementia
|17.||Be realistic without becoming depressed and somber. Keep your sense of humor.|
3. Impact of the PDC and Future Prospects
After the PDC, an Early Onset Dementia Summit was held in Hiroshima in February 2007, sponsored by the Alzheimer’s Association Japan. Meanwhile, the network of gatherings of people with dementia is spreading throughout the country. The PDC has made major impacts on the Japanese society.
1) Media response
The press conference was attended by the representatives of 22 television stations, newspapers, and magazine publishers, and there were tremendous positive feedbacks. Beginning the following day, a nationwide network television aired a feature program on dementia that covered the PDC in a considerable detail, including the voices of the participants. Various national newspapers carried numerous articles and magazines reported the conference in detail. In this way the conference was very effective in furthering the public understanding of dementia.
2) Impact on dementia-related measures
The PDC supported the policy direction which stresses the dignity and well-being of persons afflicted with dementia. The 2005 revision of the Long-Term Care Insurance system3 newly incorporated the phrase “to retain dignity” of the people in need of care in Article 1 of the Long-Term Care Insurance Law, which defines the law’s purpose. Japan is aiming to create a system under which elderly people in need of care can receive the services that meet their changing needs, allowing them to remain in the familiar community and to live with dignity. To this end, “community comprehensive support centers” are being established as the core care facilities that provide a full range of services in the community. Government support for community medical care, improvement of care quality, and the establishment of model communities and the dissemination of their best practices are among other priorities. To ensure that people with dementia can live with dignity, we must strive to make a local community into a place where people can continue to live in safety and peace even after being afflicted with dementia. It is also important to listen to patients and incorporate their wishes in the design of government measure, medical treatments and long-term care. Specifically, the following measures are suggested by the key elements in the PDC appeal.
|Item 1.||We want to meet and talk to one another. We want to move forward by helping
The measures to ensure people with dementia to have a place to talk to one another.
|Item 5.||We would like doctors to diagnose dementia early and support us as we face
The measures to establish a system of early diagnosis and to coordinate between health care and social services.
|Item 10.||There are many things we can do with just a little support.
Instead of doing everything for the people with dementia, a caregiver should identify and provide what is truly needed for the patient.
|Item 13.||We want opportunities to make use of our abilities and earn income.
Ensuring jobs people with dementia can do or help with, securing them with the opportunity to participate in society.
|Item 14.||We want to make things easier on our families.
Improve respite care for family caregivers.
4. Supporting people with dementia and their families in a community
There are a huge number of people with dementia throughout Japan who are unable to receive appropriate treatment and support owing to a lack of accurate knowledge and information and to insufficient understanding on the part of the people around them. Anxiety and isolation worsens their condition and their daily lives are a far from life with dignity.
To correct the situation, greater awareness and action on the part of nongovernmental organizations as well as individual citizens is needed as well as efforts by national and local governments and professionals in health care and social services. Through the Campaign to Understand Dementia and Build Community Networks, about 120,000 people (as of January 2007) have attended dementia workshops and become “dementia supporters,” who assist people with dementia and their families in the local communities. Japan is envisioning a society where people understand dementia, its mechanism and manifestation, empathize with those suffering from it and happily extend a helping hand in every place where dementia sufferers can be found—on the street, in the workplace, in public transportation and in supermarkets. The unique feature of the PDC conference, that is, people with dementia speaking up their personal experience, is likely to channel various programs to a right direction.