The first person to step up in Taiwan
I would not have known about Chain-Chin Yen if not for the ADI Asia Pacific Regional Conference 2022 that was held last week in Taipei. I didn't have the privilege to hear her speech entitled "A Personal Experience of a Person Living with Dementia" at the 28th International Conference of Alzheimer Disease International April 2013 in Taipei but I got the chance to hear it from her daughter, Karen, who presented "The Journey of Taking Care of People with Young-Onset Dementia."
Of course, Karen's presentation moved many of us at the conference and sent LiYu Tang, the Secretarial General of TADA, into teary eyes. I couldn't imagine how proud TADA and her family were when Chain-Chin Yen agreed and took up one of the toughest battles to fight - the stigma and discrimination against #Dementia, in the her own country and on an international conference.
Chain-Chin Yeh is the first person in Taiwan to publicly share her life living with dementia. Kudos to her courage!
Today, TADA has others like Amy Su, Wan-Chih Pai, Ching-Fang Tseng who have stepped up and advocate for change and improvement.
Just like in Singapore, the first person to publicly shared his life with dementia is George Chong, who later joined Dementia Alliance International (DAI). At the 2018 World Alzheimer's Month Conference 2018, George together with his wife, Lynn Leng, also mentioned the importance of self-advocacy.
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“Taking the first step to share our personal stories can be challenging, but it can also be rewarding."
Since then, there have been many people living with dementia who have stepped up like Uncle Peter who has recently passed away, pioneers like Auntie Katherine Lim, Uncle Peter Lim, Steven Lau and many others from Voices for Hope program.
Likewise in Indonesia, the first person to openly talked about his journey with dementia is Bapak William Buntoro. It is the hope of Alzheimer Indonesia and I too that his advocacy will encourage others in Indonesia to come forward and step up to break the dementia silence to combat the stigma and discrimination.
To step up and advocate takes a lot of courage because of the stigma and discrimination against dementia. In the low-and middle income countries in the Asia Pacific region, Africa and Latin America, it is many times harder because of cultural stigma and beliefs in addition to social stigma. It would be great if there is at least one voice per country.