What You Really Want to Know About Life with Dementia: Real stories and expert advice for family, friends and people with dementia

by Karen Harrison Dening, Hilda Hayo, Christine Reddall

A family-led vision of what carers of people with dementia need and want to know. Supporting families and carers in their day-to-day life with dementia, this unique resource combines real stories from families with expert responses and advice for specific issues and concerns.

This resource is based on the real stories and real questions brought to the Admiral Nurse Dementia Helpline, peer support groups and clinical networks. Including questions around diagnosis, peer support, balancing risks, care transitions and end of life planning, the chapters are devised to support you, and give you the tools to live better, when dementia enters your life.

224 pages, Paperback

Published December 21, 2022

Reviews

[Judy · Rating 3 out of 5]

My husband has Alzheimer's and I am his sole caregiver, so I was glad to read this book and hoped it would give me some tips on how to handle his mood swings and confusion. This book gave stories from various caregivers on their situations and various activities to help the folks they are caring for. It gave the caregiver's account, commentary by a specialist, and Admiral Nurse advice (I think these admiral nurses are specific to the UK). All the situations were different, so I guess there's some commonalities, but each person has their own individual challenges.

Overall this was a worthwhile read and I did get a few tips and some more insight in handling my husband. Alzheimer's is such a devastating disease for the victim as well as to the caregiver and family. Every day brings new challenges and none of them are easy.

Thanks to Jessica Kingsley Publishers through Netgalley for an advance copy.

[Ophelia · Rating 4 out of 5]

Heartbreaking to read other people’s accounts of losing people to dementia. Quite UK focused in the advice and guidance which is fine for me but may not be for others.

[Kate Southey · Rating 5 out of 5]

If you have a loved one who suffers from dementia then this book is a MUST read. It is warm, friendly and approachable while also offering the credentials of the experts so that you know any advice is of a high quality.
The format is fantastic. A life story from a relative of a dementia patient followed by specialist commentary explaining what is going on in the brain of someone who’s symptoms present like this, or explaining why the ways of interacting with the sufferer are helpful such as talking to the person about their life story and encouraging them to tell it to you. There are also suggestions of activities you can do with the person or do for them so as to help maintain meaningful connections with your loved one. And each section has a bibliography for reference and further reading of anything mentioned by the experts.
I know I will refer to this book again and again as both of my parents are suffering from dementia of different causes and what I experience with one of them is not the same as how I find interacting with the other.
A must read.

[Marinda · Rating 5 out of 5]

An absolute must-read for anyone who has a family member with dementia or who is or might in future care for someone with dementia.

The format of the book is really well structured. Each chapter opens with a short case study (i.e., personal anecdote) of someone with dementia or a caregiver, illustrating a specific issue that people living with dementia and their caregivers often struggle with. The case study is followed by responses from experts (e.g., psychologists, nurses who specialise in dementia, doctors, etc.) who unpack the issue in more detail in a way that is highly informative and easy to understand.

The book's content is quite heavy and at times downright depressing (and even infuriating - particularly when the healthcare system is discussed!). Hence, while I would say that the book is really well written, the content is certainly not always easy to digest due to the subject matter. I found it best to read the book one chapter at a time and to take some time to think about what I have read and give it time to settle a little bit, before jumping into the next chapter. (The book might also not be great for reading before bedtime).

But overall, I would certainly still recommend this book. It demonstrates that you are not alone. The experts share some strategies for what one could do to deal with difficult situations that I found helpful. Unfortunately, the tragedy of dementia is that it is ultimately a slow decline that, once it has set in, will never dissipate.

[Suzanne · Rating 4 out of 5]

I found this interesting but difficult to read as we are going through the dementia process with my dad who has Alzheimer’s. I liked how it was written, ie someone’s experience followed by expert commentary. It gave many helpful suggestions.

Thanks to NetGalley and the publisher for an advance copy of this book.

[Irene · Rating 4 out of 5]

This book will be extremely helpful for relations, carers and close family members, especially for people who live in the UK,to guide them through the various types of dementia and what can be done to help the person suffering from this terrible affliction. Highly recommended. I was given this ARC by the publisher and NetGalley in exchange for an honest review.

[Paul · Rating 4 out of 5]

While probably aimed mostly at a UK crowd, this info is certainly relevant elsewhere. It's helpful to have others chime in, as done here, so reader's get multiple perspectives. Helpful!

Thanks very much for the free ARC for review!!

[Iona Gibson · Rating 4 out of 5]

A well structured book with people's real life of experience about dementia, expert understanding and supporting nurse advice. Good for an overall view of the varied impact of dimentia.