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The Black Hole, the challenges of young onset Alzheimer's

the challenges of young onset Alzheimer’s

Author Eileen Smith

A true story about life with a partner diagnosed with young onset Alzheimer's disease

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No light can escape from a black hole. It has, in effect, disappeared from the visible universe – has become invisible. Just like the under-65s when they are diagnosed with ‘young onset Alzheimer’s disease’. They do not fit the commonly understood model of dementia, which is that it affects only older people.
In 2001, at the age of 54, Ray Smith, a busy export manager, husband, father and a new grandfather, was diagnosed with young onset Alzheimer’s. Neither he nor his wife Eileen had any knowledge or experience of the disease. They fell into a system that split care into ‘the under-65s and the over-65s’, but services for the under-65s didn’t recognise Alzheimer’s as a disability. It was an uphill battle, not only having to adjust to the diagnosis, but also having to cope with expensive, unsubsidised medication, which at best slowed its progression.
Five years after Ray’s diagnosis, Eileen reached a point where she was despairing of ever finding suitable and age-appropriate care for Ray. She joined Alzheimers New Zealand, later becoming a board member, and has worked tirelessly for all sufferers.
The Black Hole tells not only of their struggle through the system and Ray’s inevitable decline over the years, but how they both shared a passion to spread awareness of the disease. It is a story of hope, strength, stubbornness and, most of all, love.

Selling Points:
Gives rare insight into life with a partner diagnosed with young onset Alzheimer's
Inspiring story of determination to put the right support in place
Will have the reader laughing, reflecting, sighing and crying
Reveals a lack of support in the New Zealand health system at that time
Useful resource for teachers, therapists and medical professionals
Reminds those in similar situations that they are not alone and there is hope

Alzheimer's and other dementia
Medical professionals, social workers, support staff and carers
Family life

Eileen Smith has been actively involved in spreading awareness regarding younger onset Alzheimer’s for the last ten years, both at local and national levels. She is available to speak to small or larger groups about the issues facing a family when there is a diagnosis of young onset Alzheimer’s.

ISBN 978-0-473-21287-2
GENRE General fiction - Family relationships
Living with disability
FORMAT Paperback
No. PAGES 88 pp. +84-page full colour insert
DIMENSIONS 136 x 204 x 6 mm
WEIGHT 100 g
RRP $25.00 incl. P&P


"Eileen’s book will resonate with a lot of people – and hopefully give some of those in decision-making positions an insight into just how difficult it is trying to grapple with issues around dementia when it is ‘young onset’."
Dr Verna Schofield, PhD, MA (App), BA (Hons), CQSW, Member ANZASW University of Canterbury

"Finally had some time today to read the book, and I did not put it down until I had finished. It is a remarkable journey that you and Ray have travelled and you have captured it so very well. I am sure it will be a great solace to others travelling the same road in the future. When they read your book they will realise they are not alone, and they will be able to watch more accurately for the road signs along the way."
Member of Alzheimers New Zealand, Marlborough

"Eileen and Ray's story is remarkable and honest and well worth reading."