[Event Report] HGPI Special Seminar – Considering the Best Dissemination and Awareness-Building Measures for Building a Dementia-Inclusive Society (April 20, 2021)
date : 6/14/2021
Tags: Dementia, HGPI Seminar
******** The full report published June 9, 2021.
For more information, please refer to the PDF.
Recognizing dementia as a global health policy issue, Health and Global Policy Institute (HGPI) has made continuous efforts in its capacity as a non-profit, independent health policy think tank to promote policy responses to dementia-related issues. Based on the pillars of building a global platform to advance multi-stakeholder collaboration in dementia policy promotion, emphasizing the perspectives of those most affected, and identifying and disseminating policy issues, HGPI is advancing efforts while strengthening partnerships with various stakeholders.
It has been over fifteen years since 2004, when the Ministry of Health, Labour and Welfare in Japan reviewed its usage of the term “chiho” to refer to dementia, determined that it is a discriminatory term, and adopted “ninchi-sho” or “cognitive disorder” instead. Thanks to rigorous efforts from many related parties, understanding toward dementia has improved significantly, and society is currently transforming into a place where it is natural for people with dementia to speak up and share their own experiences and opinions. Dementia is a disease anyone can develop, so we must create universal recognition that now is the time to make the necessary preparations for dementia. Dementia Supporters trained through lectures provided in every region nationwide are making significant contributions to efforts to change society. The Dementia Supporter Training Program began in 2005 and, to date, over 12 million people have completed Dementia Supporter training. The lecturers in that program, called Caravan Mates, are people with a certain degree of expertise on dementia and who have completed a training program. In addition to leading Dementia Supporter training seminars, Caravan Mates also actively serve as leaders in starting collaborative efforts with municipalities for promoting understanding toward dementia in communities. In recent years, a growing amount of energy has been devoted to training Dementia Supporters at companies and workplaces. In addition, the Framework for Promoting Dementia Care presented in 2019 set a training target of 4 million Dementia Supporters at companies and workplaces. The Dementia Supporter Training Program has received international attention, as well. For example, a version of it called Dementia Friends was started in the United Kingdom in 2012.
In the fifteen years since it began, the Dementia Supporter program has made great progress in promoting dementia awareness. At this special HGPI Seminar, we reviewed how measures taken thus far have contributed to promoting understanding of dementia and examined what measures will be needed to build a dementia-inclusive society together with multi-stakeholders including people with dementia, academia, local governments, and industry, and while taking international trends into account.
Opening Remarks and Explanatory Introduction
Mr. Ryoji Noritake (Board member and CEO, HGPI)
Health and Global Policy Institute (HGPI) is a non-profit, independent think tank that has made numerous proposals on healthcare policy. HGPI considers dementia a key policy issue and has been engaged in a series of global discussions on dementia centered on citizens and people affected by dementia. We have also advanced activities at Designing for Dementia. Through joint initiatives with organizations like Keio University, issue+design, and the Dementia Friendship Club, we have been working to spread best practices from Japan to the world.
The Dementia Supporter Training Program was launched in 2005 and has earned growing recognition as an important global initiative. A similar initiative to train Dementia Supporters called “Dementia Friends” was launched in the U.K. in 2012 and provides one example of how best practices from Japan are being shared with the world.
Building upon the foundation created over many years by the Dementia Supporter Caravan and other such groups, people affected by dementia are participating in discussions more actively in Japan and around the world. They are speaking up with confidence and lending their cooperation to address the diverse range of issues related to dementia. A growing number of people affected by dementia are joining other multi-stakeholders from industry, Government, academia, and civil society in the effort to build a better society. In today’s discussion, I would like for us to take a look back on past accomplishments and examine future developments on a global scale.
Current Status and Future Prospects of Efforts to Promote Dementia Awareness and Elevate the Voices of People with Dementia
Mr. Fumihiko Hishitani (Director for Dementia Strategy, Division of Dementia Policy and Community-Based Long-Term Care Promotion, Health and Welfare Bureau for the Elderly)
Preliminary estimates from a special research project funded by a grant from the Ministry of Health, Labor and Welfare of Japan in 2014 called the “Study on Future Projections of the Elderly Population with Dementia in Japan” show that the number of people with dementia in Japan will grow to about 7 million by 2025.
Against this backdrop, we compiled measures based on inclusion and prevention in the National Framework for Promotion of Dementia Policies (which was approved by the Ministerial Committee for the National Framework for the Promotion of Dementia Policies on June 18, 2019) while emphasizing the perspectives of people with dementia and their families. The goals of that framework include delaying the onset of dementia and creating a society in which people with dementia can live with hope.
Specifically, measures will be pursued in five pillars: (1) raising awareness and support communication from people with dementia, (2) prevention, (3) support for healthcare, care services, long-term care services, and caregivers, (4) promoting the creation of barrier-free spaces and services for people with dementia and supporting people with early-onset dementia, and (5) promoting research and development and industry, and disseminating their results internationally.
On the topic of supporting people with dementia who are speaking up about their experiences, the Framework states that “The sight of people with dementia energetically engaging in activities can change society’s view of dementia and give hope to many people with dementia. Seeing people with dementia living their lives with hope and purpose, or doing what they can do while finding various ways to compensate for what they cannot do, can provide a sense of security in daily life to others diagnosed with dementia or encourage others to seek early diagnosis.”
Furthermore, the Declaration on Hope for Living with Dementia states, “We will support efforts to spread the message of hope undertaken by people with dementia by appointing ‘dementia ambassadors’ (tentative title).” Based on this statement, five “ambassadors for hope” were appointed on January 20, 2020. They are: Mr. Tomofumi Tanno, Ms. Kazuko Fujita, Mr. Akio Kakishita, Ms. Haruko Sunohara, and Mr. Kohei Watanabe. When selecting the ambassadors, selection, age, gender, and circumstances in their surrounding communities were also taken into consideration.
From FY2020 onward, the Government has started promoting the establishment of regional versions of this initiative in which ambassadors of hope are commissioned or appointed by prefectural governors. Regional ambassadors of hope will collaborate and cooperate with national ambassadors of hope to conduct community-based activities such as raising dementia awareness or cooperating with Caravan Mates.
In FY2020, the MHLW produced a series of videos featuring seven people with dementia from various regions in Japan who shared their hopes and spoke about achieving them while living life to its fullest in their communities. (The videos are available in Japanese only and can be found at https://www.mhlw.go.jp/stf/seisakunitsuite/bunya/hukushi_kaigo/kaigo_koureisha/ninchi/kibou.html.)
Looking at progress on initiatives using dementia cafes, which are events for people with dementia and their families to share information with each other and with specialists or to build mutual understanding with community members, the FY2019 survey reported there were 7,988 cafes being operated in 1,516 municipalities across the 47 prefectures.
However, COVID-19 control measures resulted in the cancellation of dementia cafes in many parts of Japan. To take a closer look at this, the “Research Project on the COVID-19’s Effects on Dementia Cafes and How Dementia Cafes Should Be Operated During States of Emergency” is being conducted as part of the FY2020 Health Promotion Project for the Elderly by the Tohoku Welfare Association’s Sendai Dementia Care Research and Training Center. Two manuals have been created on how alternative methods can be used to continue holding effective dementia cafés while still observing measures against COVID-19. These methods include writing letters, making door-to-door visits, and holding online meetings. One manual is for administrators and the other for participants (people with dementia and their families). These manuals have been sent to local governments and other such parties, so we hope they will be useful. We are also working to promote meetings for people with dementia as well as the activities of peer supporters for dementia.
As of the end of December 2020, there were a total of 13.01 million Dementia Supporters, which exceeded the initial target of 12 million Dementia Supporters by the end of FY2020. Meanwhile, 640,000 Dementia Supporters in the corporate and professional sectors were trained in FY2020; their target is 4 million by the end of 2025.
Dementia Supporters in certain municipalities and have started various initiatives to meet the specific needs of their communities. These activities include watching over elderly people with teams of Dementia Supporters, participating in dementia cafes, attending storytelling sessions, and providing support for outings. Noteworthy examples of such initiatives include the Elderly Safety Watching Team initiative in Matsusaka City, Mie Prefecture; and the Orange Partner initiative in Kanagawa Prefecture.
We are advancing the Team Orange initiative to propel these efforts further. In this initiative, municipalities assign coordinators (or someone involved in advancing community dementia support) who direct people providing support, mainly Dementia Supporters (specifically, those who have completed the basic and step-up Dementia Supporter training courses). Together, they work to address concerns of people with dementia in the community or their families’ needs for support in daily living. Through the Project for Advancing and Promoting Dementia Supporters’ Activities and Community Development (funded by a Community Support Projects subsidy), we will pursue the goal of establishing systems (such as the Team Orange system) that meet the needs of people with dementia and their families in all municipalities with support mainly provided by Dementia Supporters. According to a survey conducted in FY2019 (the Dementia Policy and Community Care Promotion Division Implementation Status Survey), 153 teams had been established in 87 municipalities across 33 prefectures. Those teams included 3,118 team members.
The Japan Dementia Public-Private Council was established in 2019 based on a shared understanding that various dementia-related issues require a response from all of society. In addition to initiatives undertaken by public organizations, the Council aims to promote joint efforts with private organizations like economic organizations, medical and welfare organizations, local governments, and academic societies. With guidance from this Council, the Ministry of Economy, Trade and Industry (METI) established the Dementia Innovation Alliance Public and Private Sector Working Group and the Ministry of Health, Labour and Welfare (MHLW) established the Working Group on a Barrier-free Environment for People with Dementia. The FY2020 Working Group on a Barrier-free Environment for People with Dementia created the “Guide for Realizing a Barrier-Free Society for People with Dementia,” which describes how to respond to the needs of people with dementia from the viewpoints of various businesses and other perspectives. The guide can be found online at their website.
Looking Back on Fifteen Years of Dementia Supporter Caravan Activities
Mr. Hideki Ishiguro (Deputy Director-General, Community-based Co-Operation Policy-Alliance of Local Governments)
To mark the Government of Japan’s adoption of the term “ninchi-sho” or “cognitive disorder” in place of the discriminatory “chiho” in December 2004, the MHLW launched a ten-year dementia awareness promotion campaign from 2005 under the concept of the “Decade of Learning about Dementia and Developing Communities.” One of the targets to be achieved by the halfway point in FY2009 was to “educate about one million residents and people on dementia as community supporters.” That million-person goal was reached and surpassed before the start of FY2009. The goal for FY2014, the final year of the project, was to have trained “many people to understand dementia and to be able to provide support in communities, so that every city can become a place where people with dementia can live with peace of mind.” Our organization’s collaboration with the government started as a way of collaborating on that effort.
Based on the MHLW’s “Guidelines for Training Programs for Dementia Supporters and Other Supporters,” the Dementia Supporter Caravan conducts programs to train Caravan Mates and Dementia Supporters. Caravan Mates are instructors who train and educate Dementia Supporters, while Dementia Supporters are people who have a correct understanding of dementia, are free of prejudice, and can watch over people with dementia and their families with care. The program provides basic knowledge about dementia and support for their families and teaches basic approaches for responding to people with dementia. As of the end of March 2021, the number of Dementia Supporters who have completed the 90-minute training program reached 13.18 million people, meeting the goal of 12 million people set by the MHLW one year early.
The Dementia Supporter Training Program helps many people understand that dementia is a symptom caused by a neurological disease that anyone can develop as they get older and that taking actions without first thinking of the feelings of someone with dementia can hurt their pride or trigger Behavioral and Psychological Symptoms of Dementia (BPSD). This encourages earlier responses to dementia and may help prevent someone’s condition from worsening. Furthermore, creating safe environments based on common understanding throughout entire communities can help achieve the goals of “inclusion” and “prevention.”
One reason for the nationwide growth of the program is that the number of people with family members with dementia has increased as the elderly population has grown, which has made dementia a part of their lives. It is also due to the fact that the purpose of Dementia Supporter training is not to train volunteers, but to teach people about dementia as a personal matter and help people as much as possible.
On June 14, 2011, the Sankei Shimbun reported that during and after the Great East Japan Earthquake, people in Minamisanriku Town (a town of in Miyagi Prefecture located north of Sendai City that is estimated to have been 95% destroyed in the 2011 disaster) experienced little confusion when evacuating people with dementia or when taking care of them at evacuation centers. The article pointed out this was because Minamisanriku Town had been actively providing Dementia Supporter training courses for several years, and that 10% of its population, including the mayor, were Dementia Supporters. In other words, the town had successfully created “a town where people with dementia can live with a smile.” This demonstrated people with dementia can live peacefully when many people understand dementia and know how to treat people with dementia.
Wakasa Town in Fukui Prefecture provides a notable result of the awareness-raising activities of the Dementia Supporter Caravan. In Wakasa Town, there are 2.5 Dementia Supporters per person age 65 and over. In contrast, the national average is 1 Dementia Supporter per 3.2 elderly people. In 2012, the ratio of people diagnosed with severe cases of dementia among all initial diagnoses was 8.1% in Wakasa Town, which was lowest among the four cities and towns in Fukui Prefecture’s Reinan region. (The second-lowest was Tsuruga City, where that ratio was 14.5%.)
Dementia Supporter Caravan activities have spread to countries such as the U.S., Canada, Germany, Switzerland, and Thailand through Japanese community associations and other such organizations. These activities were evaluated highly in a 2012 report released by the WHO and a 2021 report released by ADI. In the U.K., a Dementia Supporter program called “Dementia Friends” was launched in 2012 and is modeled after the program in Japan. Similar programs are also being developed in Taiwan, Thailand, and South Korea.
In the future, we will participate in the Team Orange initiative, which is being positioned as part of the MHLW’s “Dementia Supporter Activity and Community Development Promotion Project.” We have high expectations this initiative will result in concrete activities that help people with dementia maintain social skills, such as by preventing isolation for people with dementia and their families.
Video message from a person with dementia
Building Communities and Society Together With Those Most Affected – From “For” to “With”
Ms. Mayumi Yamada (Person with Dementia; Caravan Mate; Member, borderless -with dementia-)
Ms. Yukari Yamashita (Member, borderless -with dementia-)
Ms. Yamashita: Mrs. Yamada, you first started experiencing symptoms when you were 48, and you were diagnosed with early-onset Alzheimer’s Disease when you were 51. How did you feel when you received your diagnosis?
Ms. Yamada: While I had felt something was out of place, I didn’t believe I would ever develop dementia. I cried and asked myself why I was the only one who had to suffer.
Ms. Yamashita: You also shut yourself up in your home. What was it that helped you come out, like this?
Ms. Yamada: When I participated in a meeting of the Ayumi-no-kai (operated by the Nagoya City Association for People with Young Onset Dementia and their Families), I met a woman who was just like me. We started talking and I learned she was going through the same experience I was. I thought to myself, “It’s not just me. There are other people doing their best with this.” I started feeling better from then on.
Ms. Yamashita: In September 2016, you became the first person with dementia to be registered as a Caravan Mate in Nagoya City. In August of that same year, to prepare for your son’s wedding ceremony, you held a Dementia Supporter training course for the staff at the wedding hall.
Ms. Yamada: I told them the things that I couldn’t do myself and the things that I wanted them to do for me. Help from the staff made it so I was able to participate in the wedding ceremony. They were very kind to me and helped by preparing food in bite-size pieces, or by guiding me to my seat.
Ms. Yamashita: So their help meant you, the mother of the groom, could participate in the wedding ceremony with peace of mind. You look very beautiful in the wedding photos.
Ms. Yamada: Thank you. I was so happy.
Ms. Yamashita: Now then, how do you feel about the use of the Dementia Supporter Training Program as a tool to help people with dementia communicate what they want to do?
Ms. Yamada: It’s necessary.
Ms. Yamashita: Do you want the Dementia Supporter Training Program to expand?
Ms. Yamada: Yes.
Ms. Yamashita: Do you think that more people with dementia should be recruited as Caravan Mates?
Ms. Yamada: Yes, I do. I would like more and more people to come out of their shells.
Ms. Yamashita: I think it is very clear that the Dementia Supporter Training Program is an important tool for helping people with dementia achieve their ambitions.
Ms. Yamashita: Three years ago, we visited Scotland together. Their treatment of people with dementia was natural, even during the procedures at the airport. Our trip to Scotland gave me the impression that understanding toward dementia is rooted in everyday life there. I hope that people in communities in Japan will become that way, too.
Ms. Yamada: Me, too.
Ms. Yamashita: For that to happen, do you think that more Dementia Supporter training seminars should be held?
Ms. Yamada: Yes. I think many more seminars should be held at all kinds of places.
Ms. Yamashita: Ms. Yamada, do you want to visit lots of those events and talk to the people there?
Ms. Yamada: Yes.
Ms. Yamashita: Do you think it would be good if people with dementia across the country use Dementia Supporter training seminars as opportunities to voice their opinions?
Ms. Yamada: Yes, I do.
Ms. Yamashita: We hope people will really use the Dementia Supporter Training Program to change the things they are having trouble with in their daily lives.
Ms. Yamada: I would like them to use it. There are many people with dementia, and I want them to get out there. I think there are many things they want to do and places they want to go. We can make that happen, so I hope they won’t be shy and come join us, so we can do those things together.
Ms. Yamashita: I hope that Caravan Mates, including people with dementia, will come up with more and more new ideas and that Dementia Supporters take on active roles in their communities. I also hope that the Dementia Supporter Training Program will be used as a tool to benefit people with dementia. To conclude, Ms. Yamada has some words she’d like to share with everyone. Ms. Yamada, please go ahead.
Ms. Yamada: Thank you. If we are in trouble, please help us. Please don’t get angry.
Ms. Yamashita: You also want to do the things that you can do yourself, right?
Ms. Yamada: Yes, that’s right.
Ms. Yamashita: As Caravan Mates, we would like to continue providing Dementia Supporter training to as many people as possible. Thank you very much for your time today.
Ms. Yamada: Thank you very much.
Panel Discussion: “The Past Fifteen Years, the Next Fifteen Years”
Mr. Hideki Ishiguro (Deputy Director-General, Community-based Co-Operation Policy-Alliance of Local Governments)
Mr, Akira Kato (Assistant Director, Integrated Community Care Promotion Division, Matsudo City Hall)
Dr. Yumi Shindo (Researcher, Center for Gerontology and Social Science, National Center for Geriatrics and Gerontology)
Ms. Kimika Tsukada (Environment and Community Contributions, AEON Co., Ltd.)
Shunichiro Kurita (Manager, HGPI)
Short Lecture 1: Programs for Dementia in Matsudo City
Mr. Akira Kato (Assistant Director, Integrated Community Care Promotion Division, Matsudo City Hall)
Matsudo City is located about 20 km from the center of Tokyo in the northwestern part of Chiba Prefecture, in the Tokatsu region. As of the end of March 2021, Matsudo City’s population was just under 500,000 people. Among them, 25.8% were age 65 and over and 13.5% were 75 and over. Matsudo City has fifteen integrated community support centers.
As of April 2020, Matsudo City had 13,211 residents with dementia (whose daily life independence levels were level II or above). It has been projected that their number will increase to 16,336 people by April 2025 and 21,386 people by April 2040.
The driving philosophies behind Matsudo City’s dementia policy are “Be a city where dementia can be prevented” and “Be a city where everyone, including people with dementia, can live with peace of mind.” Matsudo City is advancing measures to support decision making and independence for people with dementia and to provide in-home and integrated community care wherever possible.
As of the end of February 2021 (or the end of March 2021 for the Orange Reach Out Teams), there were 28,957 Dementia Supporters in Matsudo City. Of these, 3,786 people and 227 organizations are registered as members of Orange Reach Out Teams and 958 people are registered as Orange Volunteers, who actively engage in activities for dementia. Matsudo City is holding a campaign called the “Reach Out Campaign for Peace of Mind” that encourages people to talk to elderly people in everyday life and ask “Do you need any help?” or “Can I help you?” when they seem to need help with something. Its goal is ensuring the needs of elderly people can be met in a warmhearted manner by the entire community.
Orange Volunteers collaborate with specialists and engage in activities that include helping people with dementia go shopping, volunteering at dementia cafes (as an extra activity), providing assistance during Dementia Supporter training seminars, and conducting Orange Patrol Walks. The Orange Patrol Walk is a neighborhood watch activity that started in 2017 operated by Orange Volunteers (who are volunteers that specialize in dementia support) and the Centers for the Promotion of Safety and Security for the Elderly at Integrated Community Support Centers. In 2020, many Orange Volunteers had to suspend activities due to the COVID-19 pandemic. As people are growing more distant from each other, recognition is growing toward the issue of social isolation, especially for elderly people. In response, Matsuda City has expanded Orange Patrol Walk activities to each of its fifteen areas and is engaging in various other activities such as raising awareness of the Orange Patrol Walks at consultation services, information desks, and events; by going door-to-door; or joining people with dementia for walks.
Our new initiatives in FY2020 include the “Platinum Farm” initiative, which encourages social participation and provides activities for people with dementia; the production and distribution of accessories featuring Donkey Captain (the Dementia Supporter Caravan mascot) to promote awareness; and healing music concerts for people with dementia, which are being held both for music appreciation and to provide meeting opportunities for people with dementia.
Short Lecture 2: Efforts for Dementia at AEON
Ms. Kimika Tsukada (Environment and Community Contributions, AEON Co., Ltd.)
AEON is a corporate group with approximately 580,000 employees that operates around 21,900 locations in 14 countries in Asia which are mostly in the retail sector and include general supermarkets. Our basic philosophy is to “Start from the customer to pursue peace, treat people with respect, and contribute to local communities.” Using shopping to bring people together, AEON aims to provide places that can serve as community hubs that elderly people and people with dementia can use with peace of mind.
AEON has been a member of the Dementia Supporter Caravan since 2007. By having our employees take training seminars on dementia, we hope to enable them to be able to properly respond to the needs of customers who may have dementia in a careful and attentive manner, as well as to be able to cooperate with others in the community who are facing difficulties meeting the needs of customers with dementia. Our goal is to help our employees obtain an accurate understanding of dementia and for that knowledge to be useful in their workplaces, communities, and homes.
Dementia Supporter training helps our employees obtain the knowledge they need to respond to the needs of customers with dementia through activities like listening to lectures on dementia given by local instructors, watching DVDs of real-world examples of people helping customers with dementia on-site, or by participating in group discussions on how to help those customers. We are also engaged in activities to raise awareness with local dementia cafes and integrated community care centers.
Observing COVID-19 control measures made it difficult for us to hold in-person seminars over the previous fiscal year. In response, we focused our efforts on providing Dementia Supporter training seminars online. In total, 80,607 AEON employees have completed the training and have become Dementia Supporters (as of the end of March 2021). That training was provided by guest instructors (such as when opening or renovating a store, when collaborating with local governments, or by holding seminars at our corporate headquarters or other various meetings) as well as our in-house instructors (our 899 Caravan Mates).
We are also collaborating with local governments and pharmaceutical companies to host dementia awareness seminars and educate local residents at AEON locations throughout Japan. It is still difficult to hold in-person seminars due to the ongoing COVID-19 pandemic, but we want to exercise our creativity and find new ways to continue raising awareness for dementia in communities.
AEON has a three step approach for dementia. For Step 1, we will station Dementia Supporters at all stores and build a system for responding to the needs of customers with dementia appropriately and with correct knowledge. In Step 2, we will aim to function as a social resource for dementia support and to build systems that enable each of our locations to cooperate with various community stakeholders to respond to the needs of customers with dementia. At Step 3, we will endeavor to provide products, facilities, and services at our stores that reflect the opinions of customers with dementia and their families.
Discussion 3: Progress on Dementia Programs and Awareness-raising Initiatives
Dr. Yumi Shindo (Researcher, Center for Gerontology and Social Science, National Center for Geriatrics and Gerontology)
Looking at past developments in national dementia policy, the “Year of Dementia Understanding” campaign and the Dementia Supporter Training Program were launched in 2005. Various dementia-related training programs and initiatives have been promoted over the fifteen years that have passed since then.
A FY2016 survey conducted as part of Elderly Healthcare Promotion Project entitled the “Survey Research Project for the International Dissemination of the Dementia Supporter Program” asked employees at Oita Orange Companies (dementia-friendly companies and organizations) about their experiences with Dementia Supporter training. It found that the training course increased awareness toward dementia in the workplace and in private life. (The survey had 516 responses and a 56.9% response rate.)
The WHO’s “Global action plan on the public health response to dementia 2017 – 2025” names “Dementia awareness and friendliness” as its second action area. Based on that action plan, ADI presented a report evaluating national dementia policies in each country titled “From Plan to Impact III – Maintaining dementia as a priority in unprecedented times-” on June 25, 2020.
Japan’s policies were awarded the high rank of 5A. To obtain the highest rank, 5B, the report said that Japan must increase funding and improve policy evaluation methods. However, we must not only focus on meeting numerical targets. It will also be important to work together on building a dementia-friendly and inclusive society with a firm basis in the opinions of people with dementia and those close to them.
◆ Looking Back on Fifteen Years of Changes in Measures to Raise Awareness for Dementia
- Understanding of dementia has improved and society has changed. The question remains of how to evaluate measures and initiatives.br />
- My impression is that it has become easier for people with dementia to be open about their condition. They no longer feel they have to hide it. However, we still have to conduct research to capture that in data.
- I think we could see changes over time if public opinion surveys were conducted every few years rather than for single years.
- Looking at community efforts from the viewpoint of city hall, I am given the impression that although efforts to build awareness were advanced under the leadership of city hall in the past, in recent years, Orange Volunteers and other civil society groups are advancing efforts independently with hard work and their own original ideas. There are limits as to what can be accomplished by the government alone. If people in the community get involved, awareness can be increased more effectively.
- Over the past fifteen years or so, there has been a change among city hall employees. It became impossible for them to keep up with conversations without knowing about the Orange Rings worn by Dementia Supporters, even people outside of the welfare-related departments. Matsudo City set a goal to have all city hall employees become Dementia Supporters, which it achieved in a few years. This made it possible to circulate up-to-date information on dementia. It is a source of strength when everyone in the organization knows that information. I feel that this has been another significant change.
- Our company has been training Dementia Supporters since 2007. When we started, however, many employees asked why. So, we took the time to carefully explain the significance of doing Dementia Supporter training at our company, then we started the training. Dementia is now recognized as a major issue in society, and fewer people ask “Why?” as the years go by. At the same time, employees who complete the course have said things like, “It gave me an opportunity to reexamine how I normally interact with customers.” People said this fifteen years ago and they still say it today. Therefore, we want to keep providing Dementia Supporter training to benefit customers with dementia and to provide better customer service in general.
- It took fifteen years for us to learn about dementia after knowing nothing. I think it will be another fifteen years before we can move onto the next stage. While some great results have been achieved, the issue remains of how to best conduct evaluations. A major issue is shifting civil society’s expectation that it is the Government who should solve issues facing society. This attitude must be changed and each of us must become aware that we are the ones who need to solve societal issues, and that is not limited to dementia.
◆ The Next Fifteen Years in Raising Awareness for Dementia
- Stories and narratives from people with dementia and those close to them must be accumulated and disseminated.
- It is important for many people to recognize that all people experience declining cognitive function as they age, to have a whole picture of the mechanisms that cause symptoms of dementia, and to have the basic attitude that “There is no point in getting upset with someone because they are experiencing a neurological disease. It’s more important to help people with dementia save face.” I think people should attend the 90-minute Dementia Supporter Training Program and learn these basic points to get a clear image of the people who require support. They should then try to learn more practical information by pursuing step-up training and other educational opportunities on their own.
- Although efforts to heighten awareness undertaken by people with dementia can have significant impact, the fact must be kept in mind that people with early-onset dementia face different situations than older people with dementia who are also affected by physiological aging. I would like to see the scope of the program expanded while incorporating this topic into step-up training.
- In the future, it will be necessary to accumulate and popularize the stories of many people affected by dementia.
- Through public-private partnerships, society must be built in a way that reflects the opinions and experiences of people with dementia.
- In recent years, we have been creating opportunities for people with dementia to tell their stories at awareness-raising events held at our stores. We believe cooperating with local governments is essential. In the future, we want to continue advancing various activities together with local communities.
- Public-private partnerships will not only be important for solving issues related to dementia. They will also be important for solving all types of issues facing society.
- In the aforementioned ADI report, Japan was ranked 5A, which corresponds to countries that have enacted policies for dementia but have not fully communicated them to the public. Therefore, over the next fifteen years, it will be important to listen to the opinions of people with dementia while continuing to communicate the importance of dementia initiatives. Dementia policies must be created through bilateral communication which includes both speaking and listening.
- Dementia must be redefined as something common rather than something special.
- We want to continue advancing awareness-building activities with the goal of achieving a society where everyone from children to adults has a sufficient understanding of dementia, where people can feel dementia is an issue that is close to them in their daily lives, and where people with dementia can voice their feelings and play active roles. We think the goal of building awareness is to create a world where people with dementia are not out of the ordinary, where dementia is not something special or scary, where everyone can rest assured that they will be safe and taken care of even if they develop dementia, and ultimately, where people do not even notice the word “dementia.”
- I also think it is important to integrate dementia into our everyday lives. When I visited a supermarket in the U.K., there was a slow lane where people with dementia could take the time they needed to check out. Inclusive societies like that, where people with dementia are integrated, must become the norm. However, in Japan, events for dementia are only held in September, which is Dementia Awareness Month. As a company, we must think of how to best respond to the needs of customers with various disabilities, including dementia. One way to do that would be to establish slow lanes, which we recognize as one item to consider in the future.
Dr. Satoko Hotta (Professor, Graduate School of Health Management, Keio University; Board Member, HGPI; President, Designing for Dementia)
This discussion has reminded me of the significance of the Dementia Supporter Caravan’s foundational goal, which is to build a dementia-inclusive society. On that topic, I would like to share three points.
The first is deciding which values to build awareness on. it is to recognize that, each of us as a person, whether you have dementia or not, has a place to live. That also means being able to participate in decisions that affect our human rights and advocate for our own rights, even if our cognitive functions decline or even if we are diagnosed with dementia. Isn’t it important for us to tell people about an approach based on that philosophy, that is based on rights? I think dissemination and awareness-raising measures for dementia must be intensified based on the values or desired direction of people with dementia and those close to them. We can learn this information by talking to each person and looking back to see if our efforts have caused their experiences to change.
The second is to design various methods of meeting people affected by dementia. Starting from the efforts of people who act as ambassadors for dementia, such as Caravan Mates, Caravan Mates with dementia, and people with dementia, creating opportunities to do things and build things together will change how each of us perceives dementia. It will create a relay of hope connecting to the next generation. I think it will also create opportunities for us to learn real-world lessons from specialists with first-hand experience.
Number three is related to this. It is to break away from perceiving people with dementia as receivers of care or support and to break away from the concept of “dementia.” We must shift to a mindset focused on living together as people. From the perspective of solving the issues faced by people with dementia, we must repeatedly experience acting as partners who help people with dementia accomplish what they want to do, and to make those achievements visible. By doing this, we can proceed to the phase where we work together to build a friendlier society for all. I have high expectations for steadily building momentum we have gathered over the past fifteen years of shared experiences, both good and bad, to increase people’s willingness to try working together and make inclusion a reality.
- Instead of perceiving dementia as a societal issue, a shift should be made so that it is perceived as an issue of building a society of coexistence for all. This should be done while conversing with people with dementia and those close to them.
Every person is capable of living a life of dignity in a manner that is true to themself. We must promote awareness toward dementia among the public that is based on the concept of creating an environment in which all people, both people with dementia and people without dementia, can coexist and live with dignity. Current initiatives such as dementia ambassadors and Caravan Mates should be continued and various ways for people to encounter people with dementia should be established to achieve a dementia-inclusive society. Related organizations, civil society groups, and academia should take the lead in gathering a broad variety of narratives from people with dementia. They should then organize those stories by common elements and take steps to popularize them.
- While referring to findings from other fields of disease, methods for evaluating dissemination and awareness-raising measures and initiatives should be reviewed.
In fifteen years of operation, the Dementia Supporter program has made great strides in promoting dementia awareness. To further enhance its awareness-raising effectiveness in the future, it will be necessary to continue conducting public opinion and awareness surveys among participants in the Dementia Supporter Training Program. It will also be necessary to conduct medium- and long-term surveys and evaluations to measure the effects of measures and initiatives for raising awareness for dementia.
- In addition to these surveys and evaluations, dissemination and awareness-raising initiatives should be expanded in scope to include cancer and cardiovascular diseases.
Opportunities to share and evaluate these initiatives for multiple fields of disease should be created. Proactive steps to refer to practices from abroad should be taken when planning future measures and initiatives for heightening awareness for dementia.
- Every stakeholder in industry, government, academia, and civil society should be an active participant and work to advance collaboration.
Among awareness-building measures and initiatives for dementia, people tend to focus on those undertaken by the national Government and local governments. However, active participation and cooperation from multi-stakeholders in industry, Government, academia, and civil society will be essential to achieve a more dementia-friendly future for local communities. We must continue providing forums for knowledge-sharing and discussion with domestic and international stakeholders. These forums should focus on the opinions, experiences, and wisdom of people with dementia and those close to them and include people with dementia, their families and supporters, community members, healthcare and welfare professionals, businesses, local governments, relevant ministries and agencies, and academia.
Date and time: 18:00 to 20:00, Tuesday, April 20, 2021
Format: Online (Zoom webinar)
■Program (Titles omitted; in no particular order)
|18:00-18:05||Opening remarks and explanatory introduction|
|Ryoji Noritake (Board member and CEO, HGPI)|
|18:05-18:20||Current Status and Future Prospects of Efforts to Promote Dementia Awareness and Elevate the Voices of People with Dementia|
|Fumihiko Hishitani (Director for Dementia Strategy, Division of Dementia Policy and Community-Based Long-Term Care Promotion, Health and Welfare Bureau for the Elderly)|
|18:20-18:45||Looking Back on Fifteen Years of Dementia Supporter Caravan Activities|
|Hideki Ishiguro (Deputy Director-General, Community-based Co-Operation Policy-Alliance of Local Governments)|
|18:45 -19:00||Video message from person with dementia|
|Mayumi Yamada（Person with dementia, Dementia Supporter Trainer(Caravan-Mate), Member of “Borderless -with dementia-“）|
|Yukari Yamashita（Member of “Borderless -with dementia-“）|
|19:00-19:50||Panel Discussion: “The Past Fifteen Years, the Next Fifteen Years”|
|Akira Kato (Assistant Director, Community-Based Comprehensive Care Promotion Division, Matsudo City Hall)|
|Yumi Shindo (Researcher, Center for Gerontology and Social Science, National Center for Geriatrics and Gerontology)|
|Kimika Tsukada (Environment and Community Contributions, AEON Co., Ltd.)|
|Shunichiro Kurita (Manager, HGPI)|
|Satoko Hotta (Professor, Graduate School of Health Management, Keio University; Board Member, HGPI; President, Designing for Dementia)|
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