Dementia Book Recommendations
Sharing books that resonate, inform, and offer practical and emotional support.
Hello, Dear Reader! Welcome to our new Carer Mentor community members!
I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
This article is part of the Carer Mentor iCARE Dementia Anthology, which contains Articles By Dementia Caregivers and Those Diagnosed with Dementia.
The Carer Mentor: Empathy and Inspiration website continues to expand its resources for caregivers and anyone experiencing a chronic illness.
I’m curating this GoTo space for you, researching resources and tips, and hopefully saving your precious time and energy.
You’ll find a directory of publications and articles within the Dementia Anthology, and the larger iCARE Stack; a portal of hope reminding you that you’re not alone.
My Father had a litany of health issues that were destabilised by a major hospitalisation in 2015: congestive heart failure and rheumatoid arthritis were compounded with a diagnosis of vascular dementia and then bladder cancer.
It was heartbreaking to see the proud, gregarious, highly intelligent man who knew numerous languages lose his ability to reason from A to B to C, lose his sense of time and space, and shrink inward. We were able to care for him at home until he passed in 2020. It was a rollercoaster with accelerated declines, yet we still had small, precious moments together—bittersweet joy.
Table of Contents by publication date.
The legal and care support advice within the books is country-specific, so I’ve separated the contents.
In the desktop version of this article, you can click the lines on the left of the screen as a hyperlinked index.
UK-Based Authors
Somebody I Used to Know: A Memoir By Wendy Mitchell (Published June 5, 2018)
What I Wish People Knew About Dementia By Wendy Mitchell (Published June 20, 2022)
One Last Thing: How to live with the end in mind By Wendy Mitchell (Published June 22, 2023)
US-Based Authors
UK-Based Authors
1. Caring For Nigel: Diary of a Wife Coping With Her Husband's Dementia By Eileen Murray (Published October 8, 2013)
Eileen shares all the realities of dementia caregiving. While my father’s vascular dementia was very different to Nigel’s, I sadly recognise and loudly resonate with many of the entries in Eileen’s diary—the frustration, lack of sleep, and repetition each day. There is comfort in resonance, but this may be too difficult to read for some, as Eileen is narrating events in real-time.
At the age of sixty-nine Nigel Murray, a retired university lecturer and former Army officer, was diagnosed with dementia. Doctors suspected he was suffering from a rare and degenerative neurological disorder known as Multiple System Atrophy (MSA). However, Nigel also had many of the symptoms of both Parkinson’s disease and Lewy Body dementia and an official diagnosis was never made.
For four years Nigel's wife, Eileen, kept a diary. This was her "safety valve" - an outlet for the daily stresses of caring for him at home, as his mental and physical health slowly deteriorated. In her diary she gives a frank and detailed account of his challenging and erratic behaviour, his bizarre hallucinations, the relentless struggle with his incontinence and the endless disturbed nights.
Even in her darkest moments, Eileen's dry Scottish humour shines through - you will laugh one moment and be moved the next. You can’t help but smile at Nigel's trousers with the “appetite mechanism” and his special “anti-dandruff comb”.
As the dementia advances, Nigel retreats into a busy world of army and lecturing duties, harking back to his earlier days. Eventually, the burden of running her own “one-woman nursing home” becomes too much for Eileen and her quest to find respite care begins. This presents challenges of its own.
This true and touching account offers a unique insight into the day-to-day experience of caring for someone with dementia or a related illness.
2. Wendy Mitchell was diagnosed with young-onset Alzheimer's at age fifty-eight. She wrote several bestsellers, a blog and was a strong campaigner for Dementia
Wendy Mitchell Obituary. Writer and dementia campaigner who believed that people should have the right to choose their own death. The Guardian By . (Monday, 26 Feb. 2024)
Wendy Patricia Mitchell, writer and campaigner, born 31 January 1956; died 22 February 2024
Wendy was shocked at the lack of information and support available to those newly diagnosed.
Wendy’s final Blog Post ‘My final hug in a mug….’ at her website
Each of these three books was a bestseller in the UK. I highly recommend them.
3. Somebody I Used to Know: A Memoir By Wendy Mitchell with Anna Wharton (Published June 5, 2018)
Wendy Mitchell had a busy job with the British National Health Service, raised her two daughters alone, and spent her weekends running and climbing mountains. Then, slowly, a mist settled deep inside the mind she once knew so well, blurring the world around her. She didn't know it then, but dementia was starting to take hold. In 2014, at age fifty-eight, she was diagnosed with young-onset Alzheimer's.
Mitchell shares the heartrending story of her cognitive decline and how she has fought to stave it off. What lay ahead of her after the diagnosis was scary and unknowable, but Mitchell was determined and resourceful, and she vowed to outwit the disease for as long as she could.
As Mitchell learned to embrace her new life, she began to see her condition as a gift, a chance to experience the world with fresh eyes and to find her own way to make a difference. Even now, her sunny outlook persists: She devotes her time to educating doctors, caregivers, and other people living with dementia, helping to reduce the stigma surrounding this insidious disease.
Still living independently, Mitchell now uses Post-it notes and technology to remind her of her routines and has created a "memory room" where she displays photos--with labels--of her daughters, friends, and special places. It is a room where she feels calm and happy, especially on days when the mist descends.
4. What I Wish People Knew About Dementia By Wendy Mitchell with Anna Wharton (Published June 20, 2022)
What can a diseased brain tell us about being human, living our own lives better and helping those with dementia get the best from theirs? When Wendy Mitchell was diagnosed with young-onset dementia at the age of fifty-eight, her brain was overwhelmed with images of the last stages of the disease - those familiar tropes, shortcuts and clichés that we are fed by the media, or even our own health professionals. But her diagnosis far from represented the end of her life. Instead, it was the start of a very different one. Wise, practical and life affirming, What I Wish People Knew About Dementia combines anecdotes, research and Wendy Mitchell's own brilliant wit and wisdom to tell readers exactly what she wishes they knew about dementia.
5. One Last Thing: How to live with the end in mind By Wendy Mitchell (Published June 22, 2023)
Wendy Mitchell doesn't fear anything anymore. After her diagnosis of young-onset dementia in 2014, all of Wendy's old fears - the dark, animals - melted away. What more was there to be afraid of when she faced her worst losing her own mind?
While living with her diagnosis and facing the extreme changes that come along with a progressive terminal illness, Wendy wrote two Sunday Times-bestselling books, went skydiving for the first time and supports multiple dementia advocacy groups in the UK. She is known for talking about living with dementia, but now – while she is still able to – she explores dying with it.
In One Last Thing, Wendy embarks on a journey to explore all angles of how we can prepare for it, how we talk about it with our loved ones and how we can be empowered to make our own choices. With conversations on the topic of assisted dying, from those who are fighting to make it legal to those vehemently opposed to its practice, Wendy reminds us that to get on with the business of living, we need to talk about death.
6. "Remember When: My Life with Alzheimer's," By Fiona Phillips and Martin Frizell (Published July 17, 2025)
An Early-Onset Alzheimer's Memoir, By Someone Who Cared For Her Parents
Broadcaster Fiona Phillips, was an Alzheimer's Society ambassador, and then received an early-onset Alzheimer's diagnosis in 2022 at the young age of 61. She faced the same heartbreaking diagnosis she had witnessed in her parents, fully understanding its implications for her family.
US-Based Authors
1. The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life. By Nancy L. Mace, Peter V. Rabins (Published November 1, 1981. Revised 2006)
Recommended by
“Someone gifted it to me when we were at the start of this journey and I’ve done the same for other folks.”Revised in 2006 for its twenty-fifth anniversary, this best-selling book is the "bible" for families caring for people with Alzheimer disease, offering comfort and support to millions worldwide. In addition to the practical and compassionate guidance that have made The 36-Hour Day invaluable to caregivers, the fourth edition is the only edition currently available that includes new information on medical research and the delivery of care. The new edition - new information on diagnostic evaluation
- resources for families and adult children who care for people with dementia
- updated legal and financial information
- the latest information on nursing homes and other communal living arrangements
- new information on research, medications, and the biological causes and effects of dementia
2. Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia, Alzheimer's, and Parkinson's Disease By Pat Snyder (Published April 6, 2012)
I recommend reading the book and browsing the videos in Pat Snyder’s YouTube Channel. There is a gentle reassurance in the narrative of their journey, and simple, actionable suggestions.
“Your husband has Lewy Body Disease. It has elements of Alzheimer’s and Parkinson’s disease.”
How do you cope when you hear those horrible words? Are there medicines that can help with symptoms? Is there no hope?
If your loved one is in the early stage, there is hope. As a caregiver there are things you can do for a person with degenerative cognitive disease to make your daily lives better. There may even be blessings you never thought could happen to you in this journey.
This book is about that very thing. It is real. It happened. Some of it happened because of the choices made by a caregiver who would not settle for a “gloom and doom life is all over” approach.
It is a first of its kind. There is no other book that addresses the topic of enhancing and extending the early stage of LBD.
If you are an early stage caregiver, this story may help you. It has tips on how to make a difference.
Pat Snyder has a popular YouTube Channel:
Dementia caregiver education, encouragement, and empowerment is my passion. This channel is dedicated to John, my husband, who valiantly endured Lewy Body Dementia. Author, Treasures in the Darkness: Extending the Early Stage of LBD Founder, Wake Forest Dementia Caregiver Class, UNC & LBDA Affiliate Moderator, LBD Caring Spouses online support group 2019 LBDA Volunteer of the Year
2. Navigating Dementia Care: A Comprehensive Guide for Caregivers to Understand, Cope, and Build Resilience By Marguerite Wood (Published April 25, 2024)
This book is packed with a lot of helpful information. While it has a US focus, I’d recommend everyone read this. It’s a strong reference guide.
Are you a caregiver faced with the daunting task of caring for a loved one with dementia? Do you want to gain a deeper understanding of the condition to enable you to provide them with the best possible care while also caring for your own well-being? Or are you a healthcare professional seeking to enhance your caregiving skills so you can properly support individuals under your care?
If you're looking for a guide that will help you navigate the complexities of dementia care, then look no further; this is the book for you! come these hurdles and make a meaningful difference in the lives of those they care for.
Caring for someone with dementia is noble and rewarding but it can be extremely overwhelming. Navigating Dementia Care will equip you with the skills and knowledge you need to empower you to give the best support to those under your care while enhancing their quality of life and yours as well.
3. No Way Out of This: Loving a Partner with Alzheimer's By (Published June 25, 2024)
I haven’t read Sue’s book yet, but it’s on my list. I’ve a lovely connection with Sue on this publishing platform, Substack. I’ve listened to her interview with Jane Leder (see below)
About the Author: Sue Fagalde Lick is a freelance writer/musician. After graduating with a BA in journalism from San Jose State University, she spent many years working for newspapers in California and Oregon before going into full-time freelancing. She has published 12 books, as well as numerous essays and poems. She also sings and plays guitar, mandolin and piano, loves to bake, and hikes the Oregon coast. She earned her MFA in creative nonfiction at Antioch University Los Angeles.
Listen to her interview with Jane Leder at the Older Women & Friends podcast here.
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You can download 3 essential PDF checklists with an 80% discounted annual subscription, via this link.
I’ve prepared simple PDF Downloadables to print and use as Checklists. Each contains a list of items and why each item’s been included. Prime yourself for 6-8 hour Emergency Room stays, and put together key information for medical staff.
The Patient’s Hospital Go-Bag Checklist
The Caregiver’s Go-Bag Checklist
A template form of Medical Information to keep in each Go Bag
I’ve been tentatively diagnosed with EOD and I’m sure these books will prove useful to me going forward.