Readers discuss a former journalist's book based on her experiences of providing live-in care.
Agnes Juhasz was a journalist in Hungary, trained as a nurse in Australia and now provides live-in dementia care in the UK. Her book, The dementia whisperer, was first published in Hungarian in 2014.
Janet Dandy, in Lancashire, says, ‘Much of the book details a four-year period of being a live-in carer to Sylvia, a lady in her 90s who has dementia. I grew quite fond of Sylvia as the book progressed, and was disappointed to learn that she was in fact fictional. However, the author explains that Sylvia was created from her memories of caring for numerous people with various forms of dementia.'
‘Agnes shares some of her survival techniques as a live-in carer, which may be of practical assistance, and writes about why she finds the role rewarding,' says Caroline.
Caroline Branney, who manages our Dementia Knowledge Centre, says, ‘Carers may be able to relate to the exhausting and often emotionally draining tasks she describes, which require patience and resilience, as well as the moments of comfort and humour.
‘Agnes shares some of her survival techniques as a live-in carer, which may be of practical assistance, and writes about why she finds the role rewarding, though I don’t like the book’s title.’
Jo Mallows, in south Yorkshire, agrees, ‘The title is trite and gimmicky, suggesting that Agnes has some special secret communication powers. More useful is the subtitle “Scenes from the frontline of caring”, as it is largely a series of incidents, interspersed with dementia facts, and the author’s reflections on these.’
Steve Lee in Greater London, whose late father had dementia, says, ‘I found the book interesting and informing. It introduces the concept of trial and error in coping with dementia, and also the importance of finding out as much as possible about the life and character of the person with dementia, and understanding that what works one day may not work the next.’
Janet says, ‘The author imparts her knowledge and advice, and gives many useful practical suggestions, some of which I found to be very creative. Some were regarding how to approach the person when you find their behaviour challenging. Others included activity ideas and objects that can be stimulating or calming.'
Caroline is less enthusiastic, saying, ‘Although the book contains information about some key concepts, and is realistic about situations faced by carers, I did not feel inspired by it. I’m not sure I like Agnes’ overall style and tone of writing, and wonder if this could partly be due to the translation.’
‘The book is easy to read, balancing personal perspective and insights with useful information, presented in a highly accessible way,’ says Jo.
Some questioned how much more the book could have gone into the ethics of using deception – something that might be justified when truth-telling isn’t a reasonable option. However, the author’s honesty shone through for many.
‘The book is easy to read, balancing personal perspective and insights with useful information, presented in a highly accessible way,’ says Jo. ‘I look forward to sharing it with my mum's carers, as I suspect that many of the experiences and feelings described will resonate with them.’
The dementia whisperer by Agnes B Juhasz (Hammersmith Health, 2016), 206 pages, £12.99, ISBN: 9781781610961.
- For the next issue, we invite you to read Healthy eating to reduce the risk of dementia by Margaret Rayman (Kyle, 2015), 176 pages, £14.99, ISBN: 9780857832283.