What’s different about ‘What You Really Want to Know About Life with Dementia’ compared to other guides on dementia?

Over the past few decades, many guides have been written where a healthcare professional tells the family carer and/or the person with dementia what they feel is important for them to know. This often starts by telling the reader what dementia is, the various types of dementia, which are the most common ones and how they present, and so on.

Often, in clinical practice, I would offer families these texts as a resource but guide them to the sections that would be of most benefit to them, given their unique circumstances. After all, as Professor Thomas Kitwood (a pioneer in the field of dementia care) told us, “When you have seen one person with dementia, you have seen one person.”

I wanted to flip this standard approach and ask family members and/or people with dementia what mattered to them, and what issues were the most important.

I wanted each section of the book (including the sections written by dementia specialist Admiral Nurses and other specialists) to respond to these topics, guided by their own stories.

Why was it important to include real-life stories in the book?

Given that the book is aimed at families living with dementia, I felt it important to lead with the stories of people who were directly affected.

As professionals, we write about cases we have encountered and discuss the issues based on what we have assessed as being the key elements of the case. But are these the same as what the families themselves consider to be the main issues?

Hearing directly from families about what was important to them drove our responses. What could be more person-centred?

However, we were mindful that not everyone wanted to sit down and write their story, so we had to be creative and inclusive. Some people preferred us to tell their story on their behalf, and others wanted to tell their story but wished to remain anonymous. We adapted the approach to suit each individual’s wishes.

What would you like people living with dementia, their family and friends to take away from the book?

I would hope that after reading the book, people feel that we listened and responded to what they wanted and needed from us. I also hope that it was empowering for those involved in the creation of the book.

I do not want families affected by dementia to see this book as yet another guide that tells them what they ought to know and offers a checklist of dos and don’ts.

Is the book suitable for healthcare professionals as well as family and friends who care for people with dementia?

We hope the book will also be picked up by health and social care professionals and the many generalist practitioners who work in fields that do not specifically focus on dementia care, such as primary care, acute hospitals and podiatry. Understanding the perspectives of people affected by dementia can only serve to enrich any response to dementia care.

The book offers specialist commentary and advice, including responses from Admiral Nurses, throughout. Why did you decide on this format?

Dementia care is a huge field requiring a wide range of knowledge and practice. At Dementia UK we have many relationships with professionals, clinicians and academics. We wanted to harness these connections by asking specialists for their views on what happens in dementia and why.

However, it was equally important to ask ourselves, “How can other families affected by dementia use the information in their own lives?”

This is where the advice from Admiral Nurses came in. This is the ‘bread and butter’ of their role – supporting families affected by dementia to understand what is going on and how they can adapt and improve their lives after a dementia diagnosis.

If families can see how another family faced a similar issue and use their experience to consider their own situation, the guide will be a very powerful resource.

Which story resonated the most?

For me, it was Surinder’s ‘life story’ work with her mother, Bibi, who was diagnosed with Alzheimer’s disease in 2014. I met Surinder during some research interviews I was undertaking and invited her to contribute to the book.

Surinder explained how Bibi started to talk about life events that occurred long ago, such as partition in India and her move to the UK. Surinder wanted to capture these memories both to understand her mother’s formative experiences and to inform her wider family.

Surinder’s story shows how life stories – a detailed record of someone’s life – can help people with dementia and their families to focus on the positives, rather than the negatives. They can also be an effective way of connecting with the person with dementia, especially if they are feeling disorientated, distressed or anxious.

As an aside, Surinder informed me of her desire to study the concept of life stories in dementia for a research doctorate. We became strong friends, and I pointed her in the direction of two academics who could guide and supervise her.

Surinder is now a year into her PhD. She has my utmost respect, and I am so proud to know her.

What would you like to see change for people living with dementia and those caring for them?

When I first came into dementia care over 40 years ago, it was rare to hear or read the first-hand experiences of families affected by dementia. Over the past decade or two, we have seen an emergence of stories that have tremendous power to drive professional practice.

I would like to see more of this type of partnership between families affected by dementia, not just with professional carers but also with policy and guidance developers and commissioners of the very services that are responsible for meeting their day-to-day needs.

This is an interview with Dr Karen Harrison Dening, Head of Research and Publications at Dementia UK. Dr Dening is also Co-Editor of Living with Dementia and co-author of What You Really Want to Know About Life With Dementia.

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