Overcoming dementia stigma is a global challenge, and in many Asian countries, people living with dementia are tucked away behind closed doors to save "family's face", and in some cultures, they are regarded as sinners or possessed by evil spirits. With the structural stigma that they are experiencing, it is nearly impossible to have their voice heard. Without their voice, their experience and stories are left untold and unheard by those who might be able to influence and call for change.
Dementia Alliance International launched its publication, Valuing the advocacy of people with dementia: moving dementia out of the shadows in 2018, in an effort not only to reduce stigma, but to increase inclusion, and provide a strong voice of people with dementia globally, including in some Asian countries. The members and co founders of DAI knew from long-term experience, no matter the country, just how hard it is to break the cycle of stigma.
It can be intimidating to be a long-ranger self-advocate in one's community when dementia-related stigma is pervasive. There is a need to provide a safer way to empower those who might want their voice heard but is not feasible in their local communities. Driven by the motivation to provide a safer platform for these people, a core team from Alzheimer's Disease International came out with the idea of an eBook where people living with and impacted by dementia can openly share their narratives in solidarity with others from other countries.
Although 68% of the 57 million people with dementia live in the Asia Pacific region, the numbers of self-advocates are so few and limited to a few countries like Japan, Taiwan, Singapore, Australia, and New Zealand. Therefore, there is an urgency to amplify the voice of lived/living experience, including informal care partners. The project will also provide a sense of hope and meaning to their lives, and the narrative collection can be a form of peer-to-peer support.
The goals of the project:
Advocate for change in attitudes towards dementia through stories of the people living with and impacted by it
Raise dementia awareness by making people feel comfortable talking about it instead of concealing the diagnosis
Demonstrate common shared experiences despite differences
Work together to tackle this global health issue
The main obstacle encountered was getting the buy-in from the respective member associations of Alzheimer's Disease International. Many of them assumed that it was impossible to find someone from their local community who wanted to share their stories due to the pervasiveness of the structural and cultural stigma. It was only in the middle of the 18-month project the core team began to see the light of hope when narratives, one after another, started to come in.
The other concern was the loss of 'actual' meaning and human value in translation works to English medium from respective mother-tongue languages. The core team was fortunate to have a few native translators and an excellent chief editor, Ms Trish Amichi, who values voice authenticity.
After much hard work from everyone involved, including the 20 contributors and 13 member associations of ADI, the eBook collection, "Living with dementia: Voices of Asia” was officially launched in December 2023 at the ADI Asia Pacific Conference in Taiwan. Since then, the eBook has been widely shared globally and inspired other countries to do a similar initiative. The authors were grateful to have a chance to have their stories published and do their part in raising dementia awareness. Do note that the eBook project is not a one-off initiative and Jacqueline has already started working on the official website – Voices of Asia Pacific.
You can download an accessible copy of the e-book by clicking this link.
The three core team members are Emily Ong, Jacqueline Wong and LiYu Tang, who are members of the DAI Environmental Design Special Interest Group (EDSiG). Emily was a former DAI Board member with lived/living experience of dementia, and Jacqueline is currently serving on the DAI Board as a non-member.
If you are a person living with dementia who is (or would like to become) a self-advocate, DAI has free resources to support you in this journey. Please see our Directory of Resources, as well as The Many Voices of Dementia.
Furthermore, if you’d like to advocate together with DAI, or access our support groups and members only mailing list, you can join our exclusive community of people living with dementia here.
And if you, like Emily, are interested in making environmental design around the world more accessible, you can check out the DAI Environmental Design Special interest Group (DAI ED-SiG) here.
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About DAI: Dementia Alliance International (DAI) is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.