TADA’s dementia advisory group: a rights based approach

TADA’s Dementia Advisory Group.

LiYu Tang is the Secretary General of Taiwan Alzheimer’s Disease Association (TADA). She holds a Master of Science in Psychiatric Nursing from the School of Nursing at National Taiwan University and has written several papers on issues surrounding dementia. She was recently featured as a guest speaker for ADI and Dementia Alliance International’s (DAI) joint webinar, ‘Dementia & rights: from principles to practice‘.

In this case study, ‘Dementia Advisory Group brings TADA Chinese Taipei to a new era of human rights’ from the World Alzheimer Report 2019, LiYu writes about the work that TADA has undertaken to establish a successful dementia advisory group in Chinese Taipei, as well as the problems and rewards that have come along the way.

During the joint webinar with ADI and DAI, LiYu touched on one of these difficulties, saying: “It is difficult to involve people with dementia to join dementia advisory groups; stigma is a very important factor. We only have one dementia advisory group in Taiwan but we hope in the future, more people will join this group and more groups in Taiwan.

However, the positives that come from the establishment of a successful dementia advisory groups always outweighs the challenges faced in the beginning.

LiYu says: “A dementia advisory group is a good model for expressing voices, needs, and rights of people with dementia. In the new era of human rights, TADA’s dream is not only to advocate policies FOR people with dementia, but also to advocate WITH them.

Read an excerpt from her essay ‘Dementia Advisory Group brings TADA Chinese Taipei to a new era of human rights’, below:

TADA has tried hard to develop a dementia advisory group since 2017. However, it was difficult to find suitable participants in the beginning and the group did not form successfully.

In 2018, with the cooperation with Integrated Dementia Care Centers (IDCC), TADA held 4 meetings to collect opinions from people with dementia. About 22 people with dementia joined the events, and 13 of them came without carers’ accompanying. Most of them were able to express their feelings and thoughts; some of them even made concrete and useful suggestions for policies. The topics covered the accessibility of long-term care services, disease labelling, prevention, financial safety, the process of services application, resources to prevent people from getting lost, etcetera.

This year TADA formally established a self-funded dementia advisory group. Thanks to the referrals from doctors, case managers, and other resources, there are 9 participants in the advisory group, including 6 people with dementia and 3 family carers. The group meets once a month. Since April of 2019, they have focused on the topics of dementia friendly facilities, transportation, problems associated with getting lost, and financial security.

Members in the group share their experiences, thoughts, and needs at their ease. For example, when discussing driving experiences, the members sincerely shared the meaning and value of driving to them. At the same time, carers were also able to talk about their worries and the methods of convincing people with dementia to stop driving. Furthermore, people with dementia also sometimes recommended one another to stand in their carers’ or passengers’ shoes to consider retiring from driving. Members of the Dementia Advisory Group have established the trust between themselves.

 Read the full case study here in the World Alzheimer Report 2019 on Chapter 5.5, page 156.

TADA Chinese Taipei was established in 2002 to meet the growing needs of persons with dementia, and their families, in Chinese Taipei. They currently have over 700 members which are made up of carers, healthcare professionals, psychologists, people with dementia and more.

You can learn more about TADA Chinese Taipei here.