Book group: What dementia teaches us about love

When Nicci Gerrard’s father, John, died with Alzheimer’s in 2014, she was sure that a five-week stay in hospital had contributed to his rapid decline. John’s Campaign to improve hospital care for people with dementia, set up by Nicci and friend Julia Jones, has had great practical success. 

Her book, What dementia teaches us about love, looks at how we think and feel about the condition, but it’s borne from the same need to make sense of its real-world impact. 

‘Having seen her father’s health rapidly deteriorate after admission to hospital, Nicci explores dementia from all angles, from the science of the disease and the psychology of advance planning through to the healing process that is so necessary for long-term carers.’ says Neroli Harris in our Dementia Knowledge Centre. 

‘As Nicci says, it is all to do with thinking about dementia better – diagnosis is not a sentence but the beginning of a new chapter, albeit it a scary one.’ 

Gail Gregory in Lancashire, who has Alzheimer’s disease, says, ‘I found the book hard to get into initially, but once I got to the third chapter – The brain, the mind and the self – I was hooked and found it hard to put down.’ 

‘The writer has really captured moments that are touching, emotional and moving,’ says Gail.

‘This book is more than a narrative of a personal journey involving loved ones having lived with dementia,’ says Neroli. ‘Nicci refers to it as a “meditation on what dementia means”.’ 

True to life 

These aims might make the book sound like an intellectual exercise. However, it remains rooted in the reality of people’s experiences of dementia and the difference that greater understanding can make. 

‘The writer has really captured moments that are touching, emotional and moving,’ says Gail, ‘a true representation of care homes, hospitals and how society turns away from dementia.’ 

Neroli says, ‘This is a book of accounts of science, courage, joyfulness and stoicism. The ongoing theme is about understanding, communication and caring – making and keeping connections for as long as possible and learning new ways of communicating as things progress. 

‘It is also a homage to carers, whether they recognise themselves in this role, as much as a person living with dementia recognises themselves.’ 

Real emotion 

Of course, the book’s credibility also means that it can pack quite an emotional punch. 

Mrs A Rosewell in Bristol cared for her husband John, who had Alzheimer’s, at home until his death a year ago. She listened to Nicci’s reading of this book for the audio version. 

‘I cried a lot listening to the book, and sometimes it was really hard to keep listening,’ she says. 

‘I think all professionals, including GPs, should listen to this audio book and learn not to talk over people with dementia, as if they are not a person with feelings and emotions.’ 

Another reader, John from Leeds, was diagnosed with mixed dementia – Alzheimer’s and vascular dementia – three years ago. He says he found the book overwhelming at times. 

‘I would strongly recommend anyone, whether they themselves have dementia or are married to or related to someone who has, to read this powerful book – you will not regret it,’ says John.

‘Several times I had to put it down; I couldn’t continue reading because of the tears in my eyes,’ he says. 

However, John is glad that he kept returning to the book. 

‘I would strongly recommend anyone, whether they themselves have dementia or are married to or related to someone who has, to read this powerful book – you will not regret it.’ 

Gail agrees, ‘Dementia is still misunderstood, and Nicci is very honest and open.

Her experiences are a true representation, which draws you in. 

‘It is enthralling, touching, emotional, descriptive and moving.’

What dementia teaches us about love, by Nicci Gerrard (Allen Lane, 2019), 272 pages, £16.99, ISBN: 9780241347454.