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, 29 July 2012

The Black Hole the challenges of young onset Alzheimer’s

by  Eileen Smith
Readers may find this author’s name familiar. Not surprisingly as Eileen Smith has very actively contributed to raising awareness about dementia in general and younger onset Alzheimer’s in particular throughout New Zealand over the past ten years. She has contributed to Alzheimers New Zealand conferences (as has her husband Ray), spoken on radio and TV, had input to articles for newspapers and participated in leadership roles in Alzheimers organisations locally and nationally. All this while continuing her journey supporting her husband Ray who back in 2001 was diagnosed with early onset Alzheimer’s at the age of 54.
She writes in her introduction (pix)  ‘This book has been in my head for a while. I started a journal back in 2004, mainly to detail our journey so far and help me make decisions about Ray’s future care.

It is now 2012, and Ray has been in hospital level care for nearly six years. I still feel passionate about the lack of public awareness surrounding this disease and also the apparent lack of knowledge in the professional sectors, especially as relates to younger people’.
Eileen briefly outlines her life with Ray from the time they met in the 1960s then details her first concerns ‘that something wasn’t quite right’ (p6), the process of Ray’s diagnosis, and the challenges of the years since. Notes from formal assessments are included, and incidents exemplifying the day to day hurdles she and Rae constantly faced. Eight pages of photos of Ray and family members add to the power of the narrative as does the short chapter contributed by Grace O’Sullivan who spent time with Ray and Eileen while gathering information for her PhD thesis.
The chapter entitled ‘2006 – the worst year of our lives’ describes events leading up to and the transition of Ray’s admission to residential care.

This forthright account of facing young onset Alzheimer’s in New Zealand is in my view a very timely and valuable contribution to spreading awareness of, challenging attitudes to and reducing the stigma associated with young onset Alzheimer’s. Moreover it’s a slim book (68pp) so quickly read and at the same time significantly insightful.
Review byVivienne Boyd
Education Co-ordinator
Alzheimers Canterbury
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