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Both my mother and my partner’s mother have been diagnosed with dementia. They exhibit similar symptoms but have completely different personalities and coping styles. One loves company and being assisted, while the other has resisted any help. This highlights that there’s no one manual that fits all cases and that it’s very much a “learn as you go” process.
I was interested in reading this book as I can see my set way of thinking – minimising the situation – can lead to confusion with my mother and frustration with other relatives involved in her care. Every member of both these families has responded and grieved in their own unique way.
I remember being told by a stranger when communicating with someone who experiences dementia it isn’t so much what you say as how you say it; they may not remember what you said, but they do remember how the interaction made them feel.
Caughey’s book is full of advice and techniques to help ensure interactions are respectful and not rushed, allowing the person with dementia time and space to respond, and where possible abiding by their preferences.
It reminds us the person we used to know is still very much inside, and we need to find a way to keep connected and honour them.
Caughey notes many of us might be reluctant carers who are emotionally unprepared for the role. In some cases, we might be the only available option to provide care. Whatever the scenario, she suggests it helps to role play and take on a persona of a nurse, to come from a professional, caring and compassionate space. We should “ban forever irritable or tart responses,” and we “should smile and laugh more.”
It sounds like a tall order but in essence it’s accepting what is, to do the best we can and ensuring we prioritise good self-care routines. She highlights carers need to be patient with themselves as it’s an ongoing learning process, aided by a great deal of self-reflection and trial and error.
Caughey, who looked after her husband through dementia, realistically portrays the difficulties but is also encouraging and optimistic that in this difficult period, moments of real connection can be achieved.
This book is packed full of helpful, practical suggestions for finding alternative ways to communicate. It focuses on body language (including posture and facial expression), use of language (keeping it simple, reflective listening and how to express yourself), dealing with difficult situations (a good dose of problem solving) and tools to encourage engagement (such as developing a life book).
Caughey notes people with dementia find great comfort from environments or routines that are familiar. She advocates that carers will find journaling an invaluable tool to help develop a full picture of what helps and hinders. It’s also a way to record events and moments that can be treasured by the extended family. I recommend this book to anyone supporting someone living with dementia and see it as a key read early on to help improve interpersonal relationships and the quality of life for everyone.
Reviewed by Kim Higginson, Information Management Specialist at the Mental Health Foundation