Information

Book group: What You Really Want to Know About Life with Dementia

What You Really Want to Know About Life with Dementia seeks to turn the traditional guide to dementia on its head. 

Rather than compiling information that healthcare professionals want people affected by dementia to know, it asks people with dementia, their family and carers what they think is important.

‘This is just the kind of book I would have liked to read and share with my family when a close relative was experiencing dementia a few years ago,’ says Caroline Branney in our Knowledge and Learning team.

‘Well researched and compiled, the authors have carefully themed the content and covered many of the main topics of concern about living with dementia. 

‘Each chapter begins with case studies, describing personal experiences, which are then commented on by experienced experts including specialist dementia nurses.

The themes were chosen following co-operation and consultation with families affected by dementia.

Understanding and insight

Tricot, a Talking Point member in France, appreciated the book’s real-life stories. 

‘I found this book very readable because its starting point was the carer or person with dementia giving their account,’ says Tricot.

‘This was followed by a professional’s response and practical advice. 

‘Common problems encountered on the dementia journey – and frequently shared on the Talking Point forum – were tackled with understanding and insight.’

Clever presentation 

Caroline Scott-Gall in West Sussex recommends readers find chapters that are relevant to them rather than reading from cover to cover. 

‘I didn’t read it all,’ says Caroline, ‘Mainly just the chapters that applied to my own situation, as reading about dementia matters that don’t apply to my husband creates information and  emotional overload.

‘The presentation of each scenario is clever – carer, specialist, Admiral Nurse.

‘The only problem with this book is that each chapter is person and situation specific. As you will know, the catchphrase is, “When you have met one person with dementia, you have only met one person with dementia.”’

Left wanting more

Peter Clark in south-west Wales, who has dementia, was disappointed by the book. 

‘When I saw the title of this book, I hoped that people dealing with people living with dementia were going to be told what they could do to make our lives easier,’ he says.

‘There are some inspirational excerpts – the foreword by someone 11 years after their diagnosis and Wendy, still living her own life after nine years, and of course the always uplifting and practical voices of Admiral Nurses.

‘But the fact that there was no mention of euthanasia or even assisted dying in the index suggested that very little notice has been taken of the real concerns of people living with dementia.’

Easy to find advice 

Lynda Porter, in Devon, found the layout and index helpful. 

‘It all works rather well,’ says Linda, ‘Like sitting around a table, telling your story and concerns, and receiving specialist help from someone else at the table. 

‘There is also a great index – I hate it when books don’t include indexes, as sometimes you may want help with a particular issue such as appetite loss – this helps you to go straight to it. 

‘If, like me, you have an ever-expanding “dementia bookshelf”, I recommend you add this book.’

What You Really Want to Know About Life with Dementia, by Karen Harrison Dening, Hilda Hayo and Christine Reddall (Jessica Kingsley 2022), 224 pages, £13.99 (prices vary), ISBN 9781787756953. Also available as an ebook.