We read two books that aim to help maintain good communication as a person’s dementia progresses.
Why Dementia Makes Communication Difficult was written by Alison Wray, a professor at Cardiff University’s Centre for Language and Communication Research.
Dementia Together: How to Communicate to Connect is by Pati Bielak-Smith, a therapeutic counsellor and former live-in carer for people with dementia.
Caroline Branney, who manages our Dementia Knowledge Centre, says, ‘These books are about the importance of communication and how making changes to the way we communicate can make a positive difference.
‘Good communication requires some careful reflection, and the two authors stress the impact of empathy, kindness and sensitive listening. Both examine the emotional side of dementia and how our relationships can change.’
A practical guide
Caroline says, ‘Wray’s book is a practical guide with clear chapters and action points. The first part analyses why we communicate and what communication involves, including discussion of language, expectations and shared knowledge.
‘It describes the complexity of our conversations and the different types of memory on which communication can depend.’
Chelsea Shore, in the West Midlands, says, ‘I could really understand the point of view of my grandma a lot better – how she felt and what she went through when trying to communicate her needs to us.’
Chelsea appreciated the personal perspectives that the author drew on throughout the book.
‘When I was reading, I felt like she understood what both my grandma and myself went through with our dementia journey and it made me feel like I haven’t been alone, which was comforting to me. The book also reflected on things to avoid, which I found really helpful and useful.’
Lynda Doyle, in County Durham, says, ‘I found this book highly informative, a welcome read and filled with compassion. It perhaps should be one of the first reads of a carer who is caring for someone with a dementia.
‘I particularly found the last chapter, Making Communication Work Better, very powerful. You are helped to imagine what it might be like to live with a dementia. This opens up the mind to empathy, compassion and kindness.
‘There are ideas littered throughout the book to try or examples of suggested other reads if the reader wishes to extend their personal knowledge. The book makes you think again and question our assumptions.’
A reader in Berkshire, whose mother has frontotemporal dementia, says that, even when the book advised approaches that he’d already learnt for himself, it was still reassuring to read.
‘The action points at the end of each chapter offer lots of practical advice. I don’t think they’re always ground-breaking actions, but it reinforces stuff you’re doing already. It’s nice to see a book that does offer practical advice, not just anecdotes or stories.
‘The biggest lightbulb moment for me was about putting yourself in the person’s position. It was really eye-opening because it gives you a sense of their frustration.’
Yvonne Rowse in the West Midlands says, ‘A very interesting book to read which helped me understand why communication with my mum, who has dementia, can sometimes be so challenging. Full of wisdom, this book is easy to read and full of helpful ideas. I found it fascinating and would strongly recommend it.’
Ann Bird, also in West Midland, agrees, ‘At this present time, I have two relatives going through the journey of this awful disease, and this book gives a wonderful understanding of how we can communicate with them.’
Caroline says, ‘Bielak-Smith’s writing is based on the discipline of non-violent communication, which teaches people to connect with each other by learning how to “give compassionately” and “receive gracefully”.
‘Discussing some of the intense relationships she developed as a live-in carer, she notes how a caregiver’s needs aren’t always compatible with those of the person living with dementia.
‘In this book, she suggests that caregiving can enrich the caregiver’s life as well as that of the person with dementia.’
John Lloyd in Shropshire says, ‘The author recommends approaching difficult scenarios with an open mind, and I have also found that this is key.
‘Don’t feel scared or guilty if you have to be totally honest with them that something is just not working. I have been surprised at how my mum, for example, can come up with her own ideas which totally solve the communication deadlock that dementia can cause between the carer and cared for.’
John thought the author’s professional perspective made a difference to how relevant some of the advice felt to him.
‘When you are connected by a family bond and love the person you are caring for, there is a natural relationship which assists with communication. I have always tried to go with the flow, live in the moment and give my relatives the freedom to express themselves safely in whatever way they choose.
‘The book would probably be more useful to someone who was new to discovering how dementia can affect people’s perceptions and communication.’
Lynda Porter in Devon says that, although the book was well presented, she struggled to grasp the concept of non.violent communication – an idea that formed much of its foundation. This led her to think that it might be more pertinent to health and social care professionals.
‘Professionals would possibly have had training in nonviolent communication,’ she says, ‘and it would probably be far more meaningful to them than for the likes of me, whose husband is living with Alzheimer’s.’
Pat Nixon, a former carer in Hampshire, was also less engaged by the theoretical approach and the author’s professional experiences. She was happier when it got to sections with more practical ideas.
‘It got to what I was looking for – something that might be more useful to me.’
Pat shared Lynda’s questions about who the book would really speak to. ‘Was it really for someone like me, or for someone at college being trained to care for people with dementia?’
Why Dementia Makes Communication Difficult by Alison Wray (Jessica Kingsley, 2021), 192 pages, £22.99, ISBN 9781787756069.
Dementia Together: How to Communicate to Connect by Pati Bielak-Smith (Puddledancer 2020), 224 pages, £16.99, ISBN 9781934336182.
For the next issue, we invite you to read Here and Now, by Santa Montefiore (Simon & Schuster 2021), 416 pages, £8.99, ISBN 9781471169694. Also available as an ebook and audiobook.
Tell us what you think about this novel portraying the impact of one woman’s dementia on her family and community. Email us by the end of 3 July 2022 so we can share it in our next magazine.