Here are some of the books and other resources that I found most helpful. Below I have listed them, with brief comments, in the order that (looking back) I would have found most helpful. It’s not a judgement on their value or importance, just the order in which they could have been most helpful to me. Of course, that is my personal perspective.
The six best simple introductions
John Zeisel, I’m Still Here, London: Piatkus, 2011
The person with Alzheimer’s is still the same person with whom we can relate, but it is a different relationship. That is the main point of this warm and beautifully written book. It also gives a basic understanding of Alzheimer’s and its main symptoms and their effects, together with detailed practical guidelines for communicating and building the new relationship.
This was the first book I read, at a time when I was struggling to understand what was happening. It was a revelation, giving a clear and sympathetic understanding of the person living with Alzheimer’s.
John Dunlop, Finding Grace in the Face of Dementia, Wheaton, IL: Crossway, 2017
I read this book later than Zeisel but I would put it equal at the head of the list. It gives a clear and warm introduction to the medical facts, along with practical advice on how to relate and care. Dunlop’s position as a geriatric physician gives authority to the medical part, while his experience caring for his own parents makes his practical advice compassionate and authentic.
Simon Atkins, First Steps to Living with Dementia, Oxford: Lion Hudson, 2013
Written by a GP, another clear and sympathetic overview, from medical facts to practical responses. Quite brief, so easy to assimilate!
Lee-Fay Low, Live and Laugh with Dementia, Chatswood, NSW: Exisle Publishing, 2014
This has a simple focus: how to maintain active relationships with the person living with dementia. It is extremely practical and full of optimism, with fascinating case studies of people at different stages of dementia, enabling you to assess what stage your situation has reached. I wish I had read this sooner.
Stephen Miller, Communicating Across Dementia, London: Robinson, 2015
This also has clear guidance on how to talk, listen, provide stimulation and give comfort to people living with dementia. The author covers almost all the relevant areas in a sensitive way, turning some of the key principles that other recent books advocate into simple and practical guidelines, with many examples.
William Cutting, Dementia: A Positive Response, Exeter: Onwards and Upwards, 2018
Good medical material with a lot of practical advice. It covers similar ground to the other introductions. Dr Cutting especially advocates a very positive and active response to the early stages, with the conviction that this will help people to lead a full and even comfortable life.
I read this book later than the others (it is a more recent publication), so most of what it said was already familiar. Probably I would have found it helpful at an earlier stage.
Six of the best personal stories
Any of the books above gives a good starting point for understanding. Along with them it will be good to read these personal accounts.
Sally Magnusson, Where Memories Go, London: Two Roads, 2014
The story of her mother, Mamie, her gradual descent into Alzheimer’s and the struggles of her children as they cared for her. The detailed accounts of their actual situation and the gaps in the system rang true to our experience. I kept nodding ‘Yes, just like us’ and was eager to learn what happened next.
Oliver James, Contented Dementia, London: Vermilion, 2009
This is based on the story of Penny Garton caring for her mother, but that is the starting point for a much wider exploration and definite guidelines for supporting people with dementia. It is a very particular approach. I found some of it less applicable, but the main thesis was really helpful: the person with dementia needs to be respected within their present world and frame of reference. So don’t keep asking questions; learn from them; enter into their world. And always agree.
Robertson McQuilkin, A Promise Kept, Carol Stream, IL: Tyndale House Publishers, 1999
A remarkable story – quite short – of faithfulness and love, caring for his wife for twenty-five years. Very inspiring.
Jude Wilton, Can I Tell You About Dementia? A Guide for Family, Friends and Carers, London: Jessica Kingsley Publishers, 2013
This isn’t really a story, but it comes through the words of ‘Jack’, a person living with dementia, describing his experience, which gives the basis for simple, practical and encouraging advice.
Wendy Mitchell, Somebody I Used to Know, London: Bloomsbury, 2019
The writer was diagnosed in 2014 as having young onset Alzheimer’s, at the age of fifty-eight. She writes and speaks all over the country about her condition, giving a remarkable picture from the inside. Although she and others like her are a minority, the insights they give are really valuable for families and caregivers.
Lucy Whitman (editor), Telling Tales About Dementia, London: Jessica Kingsley Publishers, 2010
A collection of thirty stories by those caring for a parent, partner or friend with dementia. They reflect their experience of pain and loss, their struggles with finding support, and the hope and love that they also discovered. The whole book is moving and informative.
Six more detailed and comprehensive perspectives
You might choose to begin with these books instead of the simpler introductions above.
Julian Hughes, Alzheimer’s and Other Dementias (The Facts), Oxford: Oxford University Press, 2011
Fairly short but remarkably detailed and authoritative, with good material on the personal and spiritual care of people with dementia.
The next two books go side by side:
June Andrews, Dementia: The One-Stop Guide, London: Profile Books, 2015
This is comprehensive, as its title suggests, covering the medical, social, practical, financial and legal aspects. That means that some parts are brief, but it’s a reliable overall guide.
Simon Atkins, Dementia for Dummies, Chichester: John Wiley & Sons, 2015
This covers the same ground as June Andrews, as part of the ‘for Dummies’ series. Although it is so comprehensive, I personally found Dr Simon Atkins’ earlier and shorter introduction (First Steps to Living with Dementia, see above) simpler and clearer at several points.
There is a later edition of this book, published in the USA and somewhat modified for readers there. It is called Alzheimer’s & Dementia for Dummies, Hoboken, NJ: John Wiley & Sons, 2016.
John Killick, Dementia Positive, Edinburgh: Luath Press Limited, 2014
The subtitle is ‘A Handbook Based on Lived Experiences’. John Killick has worked with people with dementia and their carers for many years. He shares their experiences, often in their own words, to show creative ways in which we can understand and relate to people with dementia. It is accessible, practical and positive.
I read this last of all the books listed here and found it extremely helpful, perhaps because I had read the other books and it reinforced the direction in which my thinking and responses had gone.
Bernard Coope and Felicity Richards (editors), ABC of Dementia, Oxford: Wiley-Blackwell, 2007
This is written for doctors and other medical personnel, so it is quite technical in parts. It covers all areas, with strong sections on person-centred care and the use and limitations of medication.
John Swinton, Dementia: Living in the Memories of God, London: SCM Press, 2012, 2017
This is not an overview but a reflection on what it means to be a person in the context of a disease which takes away memory and threatens self-consciousness. Definitely not an introductory book but deep and ultimately very encouraging. It particularly brings out the importance of community and friendship to sustain relationships with those living with dementia.
Some more personal stories
Erwin Mortier, Stammered Songbook, London: Pushkin Press, 2015
Beautiful and haunting reflections by a writer as he watches his mother disappearing as a person. Not the first story you would want to read, but full of insight and love.
Robyn Hollingworth, My Mad Dad, London: Trapeze, 2018
Fresh and irreverent, as the title suggests. The writer goes home to help her mother care for her father, who has Alzheimer’s, vividly described. Her mother dies first from cancer, followed soon after by her father. Her response to their deaths is deeply moving and actually the main focus of the book.
Steph Booth, Married to Alzheimer’s: A Life Less Ordinary With Tony Booth, London: Penguin Random House, 2019
Tony Booth was a remarkable person and his wife, Steph, tells their story vividly. There are many helpful details about how they responded to his diagnosis and the challenges they faced.
Lucy Whitman (editor), People with Dementia Speak Out, London: Jessica Kingsley Publishers, 2016
A collection of stories by people with dementia. A striking feature is the astonishing diversity, both of backgrounds in life and of the way the disease affects people. A significant number of contributors have ‘young onset’ or ‘early onset’ dementia.
Martin Slevin, The Little Girl in the Radiator: A Personal Study of Alzheimer’s Disease, Bloomington, IN: AuthorHouse, 2010
The story of the author caring for his mother – highly amusing but also sad – as well as exploring issues of care and the central question of identity, as he discovers his mother’s link with ‘the little girl in the radiator’.
Jane Grierson, Knickers in the Fridge, Morrisville, NC: Lulu, 2008
Well written, amusing and warm-hearted. The author and her sister Sally were able to help their mother live on in her own home (Sally and family moved into caravans in her garden) and communicate using the ‘habilitative’ approach – very similar to Contented Dementia.
Jennifer Bute with Louise Morse, Dementia From the Inside: A Doctor’s Personal Journey of Hope, London: SPCK, 2018
Jennifer Bute’s experience of early onset dementia enables her to speak ‘from the inside’; to show the many positive aspects, in contrast to common fears and stereotypes. As with Wendy Mitchell’s book, her insights are valuable for caregivers and family too.
There are many, many more books, articles and other resources on every aspect of dementia. I have not included any of those that give advice on diet, exercise and lifestyle, nor those explaining research into the causes and possible cures, except this:
Joseph Jebelli, In Pursuit of Memory, London: John Murray, 2017
A brilliant survey exploring the many different avenues in the search for causes and cures for Alzheimer’s, from Alois Alzheimer in 1906 right up to the present.
You will find many more references in the books listed above.