I want to tell you from my experience that the dementia journey can be delightful and fruitful,
– Miki Sato, Japan, diagnosed with dementia at 48.
This book is wonderful. It sets out to demonstrate that although a diagnosis of dementia can be a shock to the person living with it and their family, there are silver linings everywhere. It demonstrates without doubt how life with dementia is well worth living and that you can enjoy every minute of it. Each word of
this book is a droplet of wisdom, reminding me of the fairy tale of Hans Christian Andersen. An entire universe in one drop of water. And just like that there is an entire disintegration and reconstruction of each life in these wonderfully written stories. The juxtaposition of the voices of people living with dementia in many different parts of Asia and people caring for people living with dementia is beautifully done. Many carers speak candidly of the many challenges facing them: lack of information; difficulty finding help; wishing governments provided more services. Everybody remarks on the joy of finding an Alzheimer’s association and support groups full of people living the same experience.
It turns out I am not alone. Getting to know these people is like having a new family.
– William Buntoro, Indonesia, diagnosed in 2018.
The book does not shy away from the difficulties, the challenges, the exhaustion, at times the despair. What also comes out powerfully is the stigma and the lack of information all over Asia.
Sadly, none of the medical practitioners advised caregiving as a powerful tool – even though, in the absence of any medication, it was in fact the only tool available to us.
– Bina Berry, India.
There are powerful and recurrent themes. The realisation of the need for families to rethink and relearn their relationship with their loved one living with dementia, to discover new knowledge about them, crops up everywhere in the book.
Dementia does not change a person. It brings them back to their core memory and we help them by finding out how they chose to be understood and loved.
– Siti Nadzirah Hi Abdullah, Brunei Darussalam.
So does, sadly, the awful feeling of being a burden on one’s own family from people who have been diagnosed. More powerful than anything else is the fact that each individual’s story and perspective is so different. It reminded me powerfully of the work of Tom Kitwood, who first articulated the concept of people-centred care. Truly the circumstances of each writer are unique and remind you of the unpredictability of life. Primary carers passing away before the person they care for, doctors who despite all their training are caught by surprise by the complexities of dementia care, a couple both diagnosed with Alzheimers at the same time.
But the hope that comes from this book is even more powerful. Many remark on the importance of hearing advocates speak of their own journey with dementia and how that inspired them. One person even speaks of how early diagnosis and the advice of the doctor on risk reduction, slowed down his progression of the disease enough to stop taking medication.
I must thank Emily Ong, advocate, one of the main people behind this book, and a board member of ADI for asking me to write this introduction and enabling me to stop all I do for a while and really absorb myself in these stories. I think I am a better person for it and these voices convince me even more of the importance of our mission, of the need for us to advocate at the highest level for government support for families and at the simplest level to empower and grow the grassroots organisations that give all the contributors to this book a new lease of life. Many contributors mention Alzheimer’s Disease International and our wonderful members in their stories and how our work has transformed their life. This is what keeps us doing what we do.
What this book does matters. Some of the people writing are sharing their story for the very first time. We owe them an everlasting debt of gratitude for opening their soul and allowing us to find inspiration and spiritual nourishment from their stories.
Paola Barbarino
Chief Executive Officer
Alzheimer’s Disease International
28 July 2023
