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Books written by family members about young onset dementia

Losing Clive to younger onset dementia: One family’s story by Helen Beaumont

Clive was diagnosed with young onset dementia at age 45, when his children were aged just three and four.  Clive’s wife, Helen, tells of how she and the rest of the family made it through the next six years until Clive died. She also describes the successful founding and development of The Clive Project which become known as YoungDementia UK and merged with Dementia UK in 2020.

Our dementia diary – Irene, Alzheimer’s and me by Rachael Dixey

Based on the diaries of Rachael who looked after her civil partner Irene after she developed young onset Alzheimer’s disease. When Irene died aged 66, the couple had spent half their life together. This book is a powerful and moving account of the progression of dementia and raises serious questions about how our society cares for those who develop the disease, especially at a young age and in the gay, lesbian community. It also deals with loss and grief, during the illness and afterwards.

Alzheimer’s. Not just A memory by Angela Hogarth

Angela was 44 when her husband received his diagnosis of Alzheimer’s. They have two children. The book is an account of the feelings and thoughts she experienced as her husband’s carer, the deterioration of his health and the effects it had on their family life. During that time Angela wrote things down in a journal as a form of therapy. The book is based upon this journal which covers the eleven years that Alzheimer’s affected them as a family.

White knight: living with Alzheimer’s moment by moment by Wanda M Proost

Joe and Wanda found each other in midlife. Deeply in love, they’d just bought their new home when Joe’s diagnosis of young onset Alzheimer’s disease changed everything.  White knight recounts the couple’s four-year journey through Alzheimer’s, a journey that ended with Joe’s death.  Wanda discovered living in the moment helped her enjoy and cherish the limited time she had left with the man she loved. By dedicating herself to filling Joe’s remaining days with as much laughter and love as possible, Wanda found strength and purpose.

Anna and the beast: The true story of a young mum diagnosed with dementia, aged 37 by Christine Reddall

Anna was a dedicated and talented nurse, a beloved wife, daughter, sister, friend and a 37-year-old mother of two young sons when she was struck down by a devastating form of dementia – behavioural variant frontotemporal dementia.  Anna’s mother Chris, who is also a nurse, charts the harrowing story of the last five years of Anna’s life including the battle to secure a diagnosis and then find care for her daughter as she deteriorated.  It is a true story of young onset dementia – the hurting, the breaking, the conflict, and ultimately the healing.

Unbreakable bond by Adam Sibley

Adam spent four years caring for his mum when she developed young onset dementia at the age of 51.  Before she passed away in 2013, Adam promised her that he would write a book about their experiences. ‘Unbreakable bond’ is a book about our journey, says Adam. What we learnt and how it made us feel.  I share my thoughts, opinions, and advice for anyone out there who is caring for a loved one who has dementia.

Learning to live with Huntington’s disease – one family’s story by Sandy Sulaiman

Huntington’s disease is a hereditary illness passed on via a defective gene. There is a 50% chance of inheriting it from a parent and there is yet no cure.  Learning to Live with Huntington’s disease is one family’s poignant story of coping with the symptoms, the diagnosis and the effects of the condition.

My Bonnie by John Suchet

John is an award-winning British newsreader, television presenter, author and radio show host. Most famous for being a newsreader for ITV News, John worked for the channel for 32 years. His wife Bonnie was diagnosed with Alzheimer’s disease in 2006, in her early 60s. My Bonnie is a heart-rending and uplifting read, alternating between Bonnie and John’s intense love story and the progression of the illness.

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