The voice of 20 individuals from 13 countries

September is Dementia Awareness Month, and instead of featuring one specific individual from a country, I would like to take this opportunity to share the newly launched eBook, 'Voices of Asia.' A collection of narratives from persons living with dementia and care partners across 13 countries in Asia. Apart from Japan, Taiwan and Singapore, most of the other countries do not have a strong presence of advocates living with dementia or advocacy by care partners.

Hence for many of these courageous authors, it is their first time openly and publicly talked about their private life with dementia either as a person living with or affected by it.

Health-related stigma is a well-documented barrier to health-seeking behaviour, but it also discourages affected individuals from engagement in care, and it impacts their resiliency to live with dementia. Only those who have to live with daily stigma and discrimination can feel the harmful consequences of health-related stigma and how it destroys their lives more than the underlying disease itself. While it is true that only the voice of the people with the lived experience can create meaningful change, but it is easier said than done. It is extremely difficult to speak up when the settings where the individuals live, or work are heavily discriminating against people with dementia. The question is how do we create a safe place for them to exercise their rights and voice?

If a child can't learn the way we teach, maybe we should teach the way they learn. Ignacio Estrada

Through the eBook project, we provided a participatory platform that these individuals will feel safe enough to do in this shared space where people understand each other including the initiators of the project because their lives are equally impacted by dementia. They knew from the beginning that they were not doing this advocacy alone but together with others from different countries in Asia region. The fact that one is not doing it in one's home ground offered a sense of comfort too. They were encouraged to narrate in their preferred language, and they make the decision of what and how they wanted to do it.

FC Hing from Brunei, started with "Dear eBook Project. Allow me to introduce myself. I am FC Hing. I have attached a photo which I believe captures the essence of my father and our family."

For FC Hing it was emotionally more comforting to approach it from letter-writing to describe his journey as a care partner to his father. It has been emotionally very difficult on him, and you will feel the range of emotions in his letter.

Jenny Lim from Malaysia approached the narrative through a partnership lens as a care partner to her mum and also invited her mum to narrate her life with dementia - "I am Tan Giak Moh, and I am 91 years old.....[ends with] Thank you for listening to my story."

A typical expression of older people who are always grateful when others want to hear their stories.

When it comes to advocacy, there is no one formula of doing it. Let the person decides how and what they want to share. It is not a soap opera to be directed but human lives that we are working with.