Book group: Married to Alzheimer’s by Steph Booth

We hear what readers think about a carer’s account of her late husband’s dementia.

Steph Booth began writing an Irish Times column about her husband Tony’s dementia in 2013. He had been diagnosed nine years before that, and Steph continued the column until after he died in 2017.

Her book, Married to Alzheimer’s, developed from the columns, bringing her experiences from that whole period together. 

Caroline Branney, who manages our Dementia Knowledge Centre, says, ‘Steph was Tony’s fourth wife and 24 years his junior. He was an actor and political activist with eight children. For much of the time that he had Alzheimer’s, Steph cared for him at home.’ 

‘I found this book a pleasure to read, and thoroughly enjoyable despite the serious subject,’ says Caroline.

Although it doesn’t shy away from dealing with the difficulties that they faced, Caroline says it remains an enjoyable book. 

‘I found this book a pleasure to read,’ she says, ‘and thoroughly enjoyable despite the serious subject. It combines a compelling biography with an interesting, practical view of caring for a partner with dementia and what this can entail.’ 

Married to Alzheimer's, by Steph Booth

Karen Good, a reader in Suffolk, says, ‘I have just finished the book and found it very enlightening. My mum has been diagnosed with Alzheimer's for two and a half years, but is still in the mild to moderate stages. It’s a little sad to see what is to come.’ 

Karen feels it would be too close to the bone for her parents to read, but Gail Gregory in Lancashire, who has Alzheimer’s, got a lot from the book. 

‘I found it to be a well-written read from a carer’s point of view,’ says Gail, ‘with true representations of sad, funny and difficult times when caring for a loved one. An interesting life and a very heartfelt book.’ 

‘After reading this book, I feel I am not alone,’ says Rasila.

Rasila Mehta, in Greater London, adds, ‘It was very interesting and educating, and very encouraging. After reading this book, I feel I am not alone.’ 

Constant tension 

Caroline thinks the book comes across as a very honest account, with ‘almost too much information sometimes’. 

‘Steph describes the constant tension between choosing between her own and Tony’s wellbeing, her loss of confidence and emotional exhaustion,’ says Caroline. ‘She found the kindness of friends and family to be critical. 

‘She raises the need for meaningful long-term support after diagnosis, the continued need to destigmatise and understand dementia, the recognition of person-centred care and the validity of the carer’s experience.’ 

‘Someone actually needs to listen to people’s needs,’ says Gail.

This was something that resonated with Gail too, who says, ‘It is such a shame that the care system still has flaws in helping carers and the person who has dementia. 

‘It’s about time changes were made – someone actually needs to listen to people’s needs, both the person with dementia and the carer.’ 

Useful section 

One section called ‘Things I wish I’d known’, towards the end of the book, stood out as particularly useful for Karen. 

‘I will definitely use this section,’ she says, ‘especially the part about powers of attorney, as I have been trying to do this with my dad for some time.’ 

‘The strategies used in the book are helpful and it is humorous in places too,’ says Karen.

Caroline agrees, ‘When Steph started out as a carer – like most informal carers – she had general lack of awareness and limited knowledge, as well as a blind faith in her capabilities as carer. “Things I wish I’d known” makes a thought-provoking starting point for further discussion.’ 

Karen adds, ‘A colleague at work has had her mother recently diagnosed with Alzheimer's, so I will definitely share the book with her. The strategies used in the book are helpful and it is humorous in places too.’

Married to Alzheimer’s: A life less ordinary, by Steph Booth (Rider, 2019), 256 pages, £12.99, ISBN: 9781846045752.

Your turn

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

Let us know what you think about this book by 6 September 2019 so we can share it in our next magazine.

Let us know

Dementia together magazine: Aug/Sept 19

Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
Subscribe now
Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
Subscribe now
Categories

2 comments

Add support to Barbara Windsor letter to government asking for funding. My mother suffered with dementia and was the only one of 5 siblings, more research is needed
Regards sue

Thank you so much for your support, Sue!
Campaigning with us means you are helping to influence the people that make decisions across the UK. We want people affected by dementia to get the care they deserve, when they need it. There are lots of ways you can get involved: https://www.alzheimers.org.uk/get-involved/our-campaigns