Living with dementia or caring for someone with dementia can be a lonely journey for the person concerned. As a person living with dementia, you not only have to learn to accept decline and changes are the new norms and inevitable parts of your life, but you also need to shoulder the cultural stigma that comes with the diagnosis. Often it is the stigma, systemic prejudices and discriminatory structures that do more harm and damage to the person’s quality of life than the disease itself.
The infringement of the right to autonomy and independence is rampant among people with dementia, affecting their self-esteem and confidence. While older people with dementia can experience a “double stigma” of dementia and old age, younger people with dementia experience the risk of being marginalised in terms of inappropriate care and lack of social support. Additionally, the stigma of dementia can contribute to social exclusion, which in turn can lead to social isolation issues such as depression.
As a person with dementia, I experience stigma and discrimination firsthand but also see the adverse impact on families, particularly those from minority groups and/or with low and middle socio-economic status. There are over 38 million people with dementia in the Asia Pacific region, with the majority in the low and middle-income countries. Stigma and discrimination against people with dementia are both pervasive in these countries due to a lack of dementia awareness, and a cultural context in which not only is the existence of dementia denied; rather it is assumed to be a natural process of ageing and not a result of a brain degenerative disease. Furthermore, the inadequate preparedness of the healthcare systems in resource-poor settings worsens the situation.
Together with my two friends: Datin Jacqueline Wong (Brunei Darussalam and Malaysia), former carer and Hon. Advisor to demensia Brunei; and Li Yu Tang (Taiwan), former Secretary-General of Taiwan Alzheimer’s Disease Association, we initiated the eBook project to harness the collective power of narratives and create durable social change in dementia. Currently, there are few, if any, dominant narratives from Asia, and in most countries, the voices of people with dementia are neither recognised nor heard.
This eBook collection is intended for you, whether you are a person with dementia, or a close friend or family member of someone facing dementia. You may be a policymaker seeking to understand the lived experience of those impacted by dementia or perhaps you are a concerned citizen of the world who is wanting to be a dementia changemaker. Whatever your situation, we believe “Voices of Asia” can extend power to those living with and affected by dementia and nurture a shared hope and vision of a better quality of life that respects the rights and dignity of the person with dementia.
Throughout the eBook you will come across recurrent themes, including the benefits of having a support system and knowing you are not alone. We hope such narratives will inspire you to advocate for change in attitudes towards dementia; raise dementia awareness and break the silence on this subject; challenge harmful narratives to reduce stigma and discrimination; create a sense of comfort in talking about dementia; and work in partnership with those with dementia to tackle this global public health issue.
I would like to thank the Project Core Team for their constant support and belief in my abilities; and the publishing team of this eBook, including Trish Amichi (Australia), for her editorial guidance and input. I also want to thank Paola Barbarino, CEO of Alzheimer’s Disease International (ADI) and DY Suharya, Regional Director – Asia Pacific Region of ADI and the participating ADI Member Associations for their support in this project. But most importantly, I thank the persons with dementia, their families and their care partners for their great generosity – for coming together with us and consenting to their stories to be available in a book intended for a wide, wide audience.
Emily Ong
Li Yu Tang
Jacqueline Wong
Living with Dementia: Voices of Asia
eBook Project Core Team
