Books written by a person living with young onset

Slow Puncture: Living Well With Dementia 
Peter Berry, Deb Bunt, 2020, £9.99
An account of a year in the life of Peter Berry. Happily married and running a successful business in Suffolk, Peter’s life changes when, at the age of fifty, he is diagnosed with young onset dementia.  Peter has embarked on a series of challenges to show that ‘life isn’t over with dementia, it’s just a little different’. Peter has raised thousands of pounds for dementia charities including YoungDementia UK, cycling hundreds of miles in his quest to show that life is always worth living. This is an inspirational look at both living in the present and coping with dementia.

The Lupo Stick
Valerie Blumenthal, ISBN 978-0995785304, 2017, £7.93
Set on a small island off Sicily in the late 1950s and in contemporary Oxford, this Italian epic is a tale of identity, family secrets and mystery. Above all, it is a love story. The novel is narrated by Graziella Lupos's daughter Rosa when Graziella has just been diagnosed with Alzheimer's disease.  The book's author Valerie Blumenthal is living with Posterior Cortical Atrophy.  Read Valerie's own story here

 

Will I Still Be Me?
Christine Bryden, ISBN 97817859255592018, £12.99
Christine Bryden was diagnosed with young onset dementia in 1995, but her experiences do not reflect the mainstream discourse of loss of self while living with dementia. In this book she explains why people with dementia have a meaningful and continuing sense of self and calls for a different understanding of dementia that results in greater inclusion.

 

Who will I be when I die?
Christine Bryden, ISBN 978-1849053129, £13.99
For many, Alzheimer's disease or dementia is a mystery disease affecting old people.  Christine Bryden was 46 when she was diagnosed with dementia, and 'Who will I be when I die?' is the beginning of the story of her emotional, physical and spiritual journey since then.  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.  It has been reprinted several times and translated into several languages.

Photo of book cover of Christine Bryden's book Dancing with dementia

Dancing with Dementia
Christine Bryden, ISBN 978-1-84310-332-5, £14.99
Christine Bryden was a top civil servant and single mother of three children when she was diagnosed with dementia at the age of 46. 'Dancing with Dementia' is a vivid account of her experiences of living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks.  It continues the story of her journey since diagnosis with dementia, meeting her husband Paul and embarking on a new journey of advocacy for all those living with Alzheimer’s disease or other forms of dementia.  She describes how, with the support of her husband Paul, she continues to lead an active life despite her dementia and explains how professionals and carers can help.  The book is a thoughtful exploration of how dementia challenges our ideas of personal identity and of the process of self-discovery it can bring about.  It has been translated into several languages.

Dementia from the Inside: A doctor's personal journey of hope
Jennifer Bute, 2018, ISBN 978-0281080694, £7.65 paperback
Dr Jennifer Bute was diagnosed with young onset dementia in 2009.  She is a distinguished former GP and believes that her dementia is, 'an opportunity as well as a challenge.'  In this book she explores what it is like to have dementia, and what can help.

 

 

Five Minutes of Amazing My Journey Through Dementia 
Chris Graham, ISBN 978-0751565416, £13.98 hardcover 
Chris's world was turned upside down when, at just 34 years of age, he was diagnosed with a form of early onset dementia.  This brutal disease had already claimed the life of his father at 42, along with several other members of his family, and tragically had already confined his brother to a nursing home at the age of 43.  Chris embarked on an awareness-raising 16,000-mile solo cycle around North America.  Five Minutes of Amazing is both the story of Chris' epic journey and of his fight against the disease.

 

Talking Sense: Living with sensory changes and dementia 
Agnes Houston MBE and Julie Christie.  Free to download
Agnes was diagnosed with young onset dementia in 2006 and discovered there was very little awareness of the sensory changes dementia caused her to experience.  She undertook a decade of research into the subject which has culminated in this book.

 

 

Somebody I used to know
Wendy Mitchell, ISBN 978-1408893364, 2018, £16.94 hardcover, £6.63 paperback
When she was diagnosed with dementia at the age of fifty-eight, Wendy Mitchell was confronted with the most profound questions about life and identity.  All at once, she had to say goodbye to the woman she used to be.  Her demanding career in the NHS, her ability to drive, cook and run - the various shades of her independence - were suddenly gone.  Philosophical, profoundly moving, insightful and ultimately full of hope, Somebody I Used to Know gets to the very heart of what it means to be human.  A phenomenal memoir.  It is both a heart-rending tribute to the woman Wendy once was, and a brave affirmation of the woman dementia has seen her become.

The Lewy Body Soldier
Norman McNamara, ISBN 978-1536805871, £9.13 paperback
'This book will be my last ever book.  We have to deal with the cards we are dealt and try to make the best of it.  I hope this book inspires others and they can now understand why a diagnosis of dementia is not the end, but can be the beginning of a new adventure, where there is life, there will always be hope my friends.'

 

 

Photo of book cover of Norman McNamara's book Silent VoicesSilent Voices: My battle with Alzheimer's rages on
Norman McNamara, ISBN 978-1463761530, £9.99 paperback 
Norman is four years into a diagnosis of young onset Alzheimer's disease.  This is his story so far...

 

 

 

Photo of book cover of Norman McNamara's book Me & My AlzheimersMe and My Alzheimers, join me as fight the fight of my life against this awful illness
Norman McNamara, ISBN 978-1460958520, £9.99 paperback
At the age of 50 years old I was diagnosed with Alzheimers, I am now 53 years old and have every intention of beating it!  Please join me on my journey, my highs and my terrible lows as I fight the biggest battle of my life.

 

 

On Pluto: Inside the Mind of Alzheimer's
Greg O'Brien, ISBN 978-0991340101
This is a book about living with Alzheimer’s, not dying with it.  It is a book about hope, faith, and humour.  Greg O’Brien, an award-winning investigative reporter, has been diagnosed with young onset Alzheimer's disease.  Acting on long-term memory and skill coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey.  O’Brien is a master storyteller. On Pluto: Inside the Mind of Alzheimer’s is both a 'how to' for fighting a disease, and a 'how not' to give up!

 

Dear Alzheimer's - A Diary of Living with Dementia
Keith Oliver, 2019 £12.99 paperback 
Keith Oliver was diagnosed with young onset dementia in 2010, and has since become a leading activist for dementia care, and an international speaker.  Telling his story through a diary format, this book gives an unparalleled insight into what day-to-day life with dementia is like, and how he continued to live a full life after diagnosis.  Half of the royalties from the sale of this book will go to supporting the work of YoungDementia UK.

 

 

Walk the Walk, Talk the Talk
Keith Oliver, 2016, £6.67
On New Year's Eve 2010, Keith Oliver was told by a doctor that he had Alzheimer's disease.  He was just 55, the head of a thriving primary school, a husband, father and grandfather, in the process of studying for an MA in Education.  Walk the Walk, Talk the Talk is the story of Keith's life before, during and since receiving his diagnosis, told not just by Keith, but by the health professionals, friends and family who know him best, and including a selection of the talks he has given to a wide variety of audiences since his diagnosis.  This is a story of hope and encouragement that is both moving and inspiring.

To Forget With Grace
Jacqui Peedell, 2017, £12.99
A collection of poems by Jackie Peedell who is living with young onset dementia.  This book is  a re-telling of her story as a series of illustrated poems: her story with its vibrant background, its bravery, and her never-failing pragmatism in the face of life’s ups and downs.

 

 

Dementia Activist - Fighting for our rights 
Helga Rohra, 2016, £10.99 paperback
Helga Rohra turns dementia stereotypes on their heads with this candid memoir.  Speaking about her diagnosis, day-to-day life and experience of advocacy, she proves that a dementia diagnosis doesn't mean you have to give up on life.  With helpful advice and practical tips, this book is a testament to living well with dementia.

 

 

I Am Still Me
Tracey Shorthouse, ISBN 978-1524668198, 2017, £9.95
I Am Still Me is a collection of poems written by Tracey as a way to encourage people that even though someone has a condition, they can still do things. Tracey was diagnosed with young onset dementia in her 40s and although there are some poems about dementia, the book doesn’t focus on it.  There is a wide variety of poems pertaining to life, nature, and stories within a poem.  The photographs within the book were also taken by the author.

 

Photo of book cover of Pat Summitt's book

Sum it up: 1098 victories, a couple of irrelevant losses and a life in perspective
Pat Summitt  ISBN 978-0385347051, £14.99 paperback
Pat Summitt was only 21 when she became head coach of the Tennessee Vols women's basketball team.  For 38 years, she broke records, winning more games than any NCAA team in basketball history.  She coached an undefeated season, co-captained the first women's Olympic team, was inducted into the Basketball Hall of Fame, and has been named Sports Illustrated 'Sportswoman of the Year'.  Pat's life took a shocking turn in 2011, when she was diagnosed with early-onset Alzheimer's disease.  Despite her devastating diagnosis, she led the Vols to win their 16th SEC championship in March 2012.  Pat continues to be a fighter, facing this new challenge the way she's faced every other - with hard work, perseverance, and a sense of humour.

Photo of book cover of Sandy Sulaiman's book Learning to live with Huntington's diseaseLearning to Live with Huntington's Disease One Family's Story 
Sandy Sulaiman, ISBN 978-1-84310-487-2, 2007, £15.99
Huntington's Disease (HD) 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 HD.  Sandy is a member of YoungDementia UK.

 

 

What the hell happened to my brain?
Kate Swaffer, ISBN 978-1849056083, 2016, £13.65
Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia.  In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia.

 

 

Alzheimer's From The Inside Out
Richard Taylor, ISBN 978-1932529234, 2006, £23.50
Richard Taylor was diagnosed at the age of 58 with dementia probably of the Alzheimer's type.  A former psychologist, he was a champion for individuals with early-stage and young onset dementias.  He began writing about his fears-and triumphs-as a way to, 'gain control over what was happening between my ears.'

 

Lewy Body Dementia Survival & Me
Kevin Quaid, ISBN 978-1720495758, 2018, £21.90
Kevin Quaid was diagnosed with Lewy Body dementia when he was 53 years old having been diagnosed with Parkinson's Disease two years earlier, however he started to show symptoms of Parkinson's three years before that. This story takes a look at his life, the highs and lows and sometimes his struggle with life itself.

 

 

Welcome to Our World
Various authors, ISBN 9780993074202, 2014, £5.00
A collection of life writing by people living with dementia, five out of eight of whom are living with young onset dementia. 

 

 

 

If you can recommend any other books specifically about young onset dementia, please do email us the details so we can add them to our listing.

 

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