The dementia Australia NSW blog *Younger Onset Dementia and ME*

*The dementia Australia NSW blog *Younger Onset Dementia and ME* is a place for people to connect with others, to get information and helpful suggestions.

A diagnosis of younger onset dementia can be very isolating. You may have received a diagnosis, be someone who is caring for a family member, or you may have a mum or dad with younger onset dementia. You are not alone. The National Younger Onset Dementia Key Worker Program provides individualised information and support to improve the quality of life for people with younger onset dementia and also see NSW - Younger Onset Dementia . For more information contact the National Dementia Helpline on 1800 100 500.

Sunday, 23 October 2016

book review - What the Hell Happened to My Brain?

October 24, 2016


Great Read about Living with Dementia

Just one reader’s opinion, Professor Mary Radnofsky

Kate Swaffer’s new book, What the Hell Happened to My Brain? (2016) is the must-read, go-to reference for dealing with all kinds of dementia – from Alzheimer’s, Leukodystrophies, MS, or any neurological disorder. (It is also the best title of all books on the subject of dementia.)

This is the book you’d wished for, when you or a loved one was first diagnosed. It’s what we all need to finally help us articulate or understand how it feels to slowly lose what we’ve always taken for granted: the ability to multi-task, recall words, make decisions, manage money, organize our lives.  A former nurse, Kate had seen this many times. Then eight years ago, at age 49, she, too, was diagnosed.

So Kate has made this book more than you or I could have ever imagined – she not only opens her [still-remarkable] mind to offer her vast knowledge and caring spirit, she also provides over thirty chapters with practical answers your questions on living – and I mean really living well and beyond – dementia. Keep a pencil or highlighter handy; you’ll want to take notes and share these words!

Kate is living proof of the hope we can still have for a good life even when our cognitive skills change. You can meet her and many others living with dementia online through the wonderful “Dementia Alliance International (DAI), an organization she co-founded for Support and Advocacy of, by, and for People With Dementia. (Only people with dementia may join, and membership is free.)

If you have dementia, you’re not alone. There are over 47 million people on Earth with dementia. And there’s no shame in it. Read Kate’s book, go online to DAI, or attend a dementia conference, and you’ll meet some of the still-active people who’ve been living with dementia for 10-20 years. Doing that has helped me discover new ways to enjoy my own life again, eleven years after my first diagnosis. Yes, I, too, have dementia, and I’m still living a good life.

Christine Bryden was named a Member in the Order of Australia for significant service to community health through support for people with Alzheimer’s disease and other dementias.

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46

Some days all I want to do is give up the constant, exhausting struggle and stop trying to be normal. But I can't. It's not in me to walk away from a fight. I'll keep fighting and telling my story. Before I forget.'
Christine Bryden was only 46 when she was diagnosed with dementia in 1995
Rather than accepting the passive role expected of a person with dementia, including Alzheimer’s, Christine wanted to become a survivor, and did not want to be labelled with dementia, as that implied that she was no longer a unique person, simply because one day, a specialist diagnosed her with an illness of cognition.


Nothing About Us, Without Us!: 20 Years of Dementia Advocacy
Advocating for dementia for 20 years, Christine Bryden has been instrumental in ensuring that people with dementia are included in discussions about the condition and how to manage and think about it. This collection of her hard-hitting and inspiring insider presentations demands 'nothing about us, without us!' and promotes self-advocacy and self-reflection. Provocative and insightful, the pieces included in the book address issues that demand attention, and will change the way dementia is perceived, and the lives of people with dementia and their families.
'Christine's journey as a dementia advocate is truly remarkable.

 This collection of talks and presentations demonstrate the incredible progress that has been made as a result of her determination to make the world a more inclusive place for people living with dementia.' - Marc Wortmann, Executive Director, Alzheimer's Disease International
'Christine Bryden chronicles her two-decade journey living with a diagnosis of dementia, exploding myths and stereotypes along the way. Even in the face of cognitive struggles, Christine embodies personal growth, sharing her insights about the lived experience of dementia.' - G. Allen Power, MD, author of Dementia Beyond Drugs and Dementia Beyond Disease

'This should be compulsory reading for all professionals, people living with dementia and families affected by dementia. There is no us and them. There is only us.' - Professor Dawn Brooker, Director of the Association for Dementia Studies, University of Worcester, UK and author of Person-Centred Dementia Care

Who will I be when I die?
Christine Bryden 
Who will I be when I die?

'Who will I be when I die?' is the beginning of the story of Christine Bryden's  emotional, physical and spiritual journey since her diagnosis.  Christine is living positively with dementia, and provides a unique insight into how it feels to be gradually losing the ability to undertake tasks most of us take for granted. Her story is remarkable because of the vigour with which she is undertaking this battle in her life and her deep sense that her life continues to have purpose and meaning. Christine's approach to health and well-being has made this book a must for many people with dementia and their families.

Dancing with dementia : my story of living positively with dementia
Christine Bryden

This book is a vivid account of the author's experiences living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband, Paul, she continues to lead an active life nevertheless, and explains how professionals and caregivers can help.

These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on