Establishment

The “Younger-onset Dementia Family Association,” already scattered all over Japan, and the “Supporters Assembly” working together as an alliance organization was formed and started operations in September 2010 triggered by the support of members, families, people with dementia, and supporters of the “Younger-onset Dementia Family Association,” established 20 years ago. Members are composed of different groups as Early-onset Dementia Long-term Care Family Association and the Long-term Care Office that supports long-term care for families and people with younger-onset dementia. The “National Younger-onset Dementia Forum” is held every year to understand and disseminate information on younger-onset dementia as well as promulgate knowledge about this symptoms to society. As of March 2021, there are 51 member organizations in all of Japan.

Purpose

1. Exchange information on medical care, welfare, long-term care, employment status, etcetera in each region related to younger-onset dementia.
2. Calls on various institutions to ensure the well-being and rights of people with early-onset dementia and their families.
3. Jointly perform social activities to expand support and care specialized in early-onset dementia, with the purpose of supporting daily activities and establish new Family Associations.

Introduction to activities

1. Each member group makes the best use of the group’s characteristics, “development/investigation/training.” We are engaged in many activities specializing in younger-onset dementia, “telephone consultation/interview focusing in early-onset dementia,” “support the work style of each person/family,” “social meetup of people with dementia making use of the community,” “support for children and young caregivers,” and “support for family and grief care.”

2. The plenary session held once a year has the following structure:

1. Information exchange on the support status and characteristics of each region.
2. Hold a group discussion regarding a specific topic. Topics include mortgages, employment support, life insurance on severe disability certification, railway accident trials, grief care, issues when working in the community, mobility support for continuing social activities, and the current situation of younger-onset dementia coordinators, among others.

3. Along with raising awareness of early-onset dementia, the “Younger-onset Dementia Forum” is held annually with the aim of creating a continuous network by uniting at the venue the people with dementia and families with supporters, including the government. Starting in September 2010 in Tokyo, the forum has been held in Fukuoka, Gunma, Nara, Shiga, Saitama, Kumamoto, Tokyo, Aomori, Hokkaido, and Mie.

4. Cooperation with other organizations.
Participation in the Dementia-related Parties/Supporters Liaison Conference.
Participation in the Japan Dementia Council in the private and public sectors.

Submission of proposals to the Ministry of Health, Labour and Welfare as a party organization.
“Nationwide expansion of consultation support for early-onset dementia as a one-stop service.”
“Implementation of training programs on younger-onset dementia for supportive doctors, family doctors, corporate occupational physicians, human resources personnel, and health and safety personnel.”
“Financial support for people with younger-onset dementia,” “employment rate of people with disabilities, including younger-onset dementia.”
“Grief care support for family caregivers,” etcetera.

About the results of activities

The latest forum, the 11th National Younger-onset Dementia Forum in Mie 2020, had 1.5 times more participants than the expected.
It has been possible to hold programs such as “Measures for younger-onset dementia from the Ministry of Health, Labour and Welfare,” “Efforts for younger-onset dementia from the prefectural governor,” “Lecture on the correct understanding, research and progress of dementia from a medical point of view,” “Announcement of the people with younger-onset dementia Association,” “Report of younger-onset dementia coordinators,” “Young Carers Association,” “Kids supporter training course,” “Café for people with younger-onset dementia,” “Member group shop,” etcetera, so, people from different generations can participate easily. Forums are held in each region of Japan centered on the host prefecture organization’s activities, and each area is taken into consideration. As the number of prefectures having events increases, the understanding, dissemination, and awareness of the current situation of younger-onset dementia is spreading to the residents of each area.

Future activities

From April 2021, it will become a General Incorporated Association. In the future, we will increase the number of group members, individual members and implement activities to obtain donations and cooperation funds. Based on the accumulation of member organizations’ activities so far, we will carry out activities to protect people’s well-being and rights with younger-onset dementia and their families as one purpose of the association. We aim to increase the number of venues for the “National Forum” to spread the understanding of younger-onset dementia of the region, expand the network of associations nationwide, and finally increase the number of organizations participating in all the 47 prefectures. Social activities to gather members’ knowledge, collaborate and cooperate with all organizations of people with disabilities, and expand support and care specialized in younger-onset dementia. Then, we will exchange and propagate information with domestic/foreign-related groups and organizations.

Responsible of the text: Sanae Umehara

Profile

Sanae Umehara, vice president of the National Early Onset Dementia Family Association / Supporter Liaison Council.

Group profile

Established in February 2010, Tokyo. The “National Younger-onset dementia Council” was formed for the purpose of creating networks between family associations and supporters all over the country related to younger-onset dementia, developing activities and information dissemination, mutual aid, and information exchange. As the main activity, we hold the “National Younger-onset Dementia Forum,” an edification activity for 47 prefectures. Information exchange and opinion exchange between members. Cooperation with other organizations, collaborative dementia groups (4 organizations), social exchange, and information transmission. Participation in the Japan Dementia Public-Private Liaison Council.

Contact information

National Younger-onset Dementia Association, Supporter Liaison Council
1-9-4 Shinjuku, Shinjuku-ku, Tokyo 160-0022
Chuko Building Gyoen Green Heights 605
TEL: 03-5919-4186 FAX: 03-6380-5100
E-mail: early.dem.2009@gmail.com https://www.facebook.com/early.dem.2009