Thoughtful Dementia Care: Understanding the Dementia Experience

by Jennifer Ghent-Fuller

An easy-to-read and sensitive portrayal of the changing world of people with dementia due to Alzheimer's disease or other diseases, and those who care for them. Offers insights into emotional reactions and practical suggestions based on deep understanding of the way people with dementia view many situations. The author carefully explains the loss of various types of memory and other thinking processes. She describes how these losses affect the day to day life of people with dementia, their understanding of the world around them and their personal situations. The many portrayals of real life experiences clarify and deepen the explanations. Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. This book is intentionally written in easily understood plain language. "Thoughtful Dementia Care" is an expansion of the free paper by the same author, "Understanding the Dementia Experience", which has been widely distributed online and received much praise over the past ten years. The shorter paper is featured on websites for carers of people with Alzheimer’s disease or a related disease, and has been downloaded by thousands of people. Here are some of their “This is one of the best things that I have read on the subject of Alzheimer’s.”“I’ve only gotten to page 4 and I’ve found the answers to half a dozen situations that have been driving me crazy.”“Most books are more high-level and don’t address the moment-to moment issues that can arise. Your article cuts to the emotional and practical core of things, and for that I am grateful.”“Great article. Going to make copies of it and give them to family and friends that keep saying to me, ‘But he seems OK to me.’ One of the best articles I have read.”“I printed a copy of this article because I believe it may be the best I have read to help those who are not impaired understand our experience. I am deeply grateful to Jennifer Ghent-Fuller for writing such a wonderful piece.”“The most helpful article I have found as I attempt to understand the changes in my father’s behaviour.” “The paper examines how everyday life changes for Alzheimer’s patients and their families as the disease progresses. The paper also gives a tremendous amount of insight in to the way Alzheimer’s patients view different situations and offers suggestions about how to interact and cope.”“An excellent article that is frequently recommended.”“The touchstone for entering our loved one’s new reality and learning how to respond to confusing behaviours.”“I have had the opportunity to read many scientific and lay articles but this was one of the best I have ever read.” “This author must be someone very special. Her understanding of the disease process and her translation for caregivers in the home setting as well as in the healthcare field is so helpful.”“Very instructive reading. It is written in a lively conversational manner that very well suits the caregivers of Alzheimer Disease patients.”“A wonderful, easily understood article on dementia.”“It is with immense honor that I send you my heartfelt thank you for your wonderful and amazing paper, ‘Understanding the Dementia Experience.’ This is the single most often recommended body of work that we refer families and caregivers to. You have touched hundreds and hundreds into the thousands of caregivers and families from all over the planet.

Genres: Nonfiction

202 pages, Kindle Edition

First published April 3, 2012

Reviews

[Michele · Rating 5 out of 5]

Best book on the subject I've found so far. The 36-Hour Day was recommended by the geriatric psychiatrist and it has some advantage in that it covers more topics. But Thoughtful Dementia Care does a better job of explaining the nature of dementia and a better job of guiding the approach to care.

Everyone who has had a loved one diagnosed with dementia should read this book as soon as possible. It is a relatively short read and well worth your time.

[Laura Davis · Rating 5 out of 5]

Very helpful book to gain perspective and understanding of the changes in a loved one with dementia. Understanding their experience/perceptions prepares you to change your own behavior and reactions.

Many practical examples from the author’s direct experience make it accessible & relatable. Easy to read, as far as comprehending and time it takes, although of course it is emotionally difficult to read, ponder, and think deeply about the persons experience with the disease.

It helped me understand current behavior and anticipate what might be coming next, along with strategies on how to react in ways that are helpful rather than provoking conflict or anxiety. I highly recommend this book to anyone who is close to someone with dementia, whether they are responsible for their daily care or not.

[Diane E. Bible · Rating 5 out of 5]

Extremely helpful

This is one of the few books on dementia I have read that explains various forms and causes in very understandable language. Written very compassionately about how to help and understand those suffering from dementia and also good insights about how carers struggle with the physical burden of care as well as the mental and emotional anguish of trying to care for someone you love. Both comprehensive and practical.

[Lisa Williams · Rating 5 out of 5]

Dementia

If u have a loved one stricken with dementia, or if you can read this before that happens, this is the most informative book I have read. The information has helped me 100%. I now understand what is happening behind my father's eyes.

[Scott · Rating 5 out of 5]

Not an exciting or inspiring read, but an extremely helpful and practical guide for anyone caring for someone with dementia. Get a copy for anyone you know going through this.

[Marci · Rating 5 out of 5]

This book was recommended in a Zoom workshop on dementia. I attended the workshop with my sister-in-law whose husband has dementia. I wanted to understand the condition better so I could be more understanding and supportive to her. This book covers it all and is a real eyes opener. It covers everything imaginable in such a caring way. This is an issue that will touch our lives in someway, either directly or indirectly. I would recommend this book highly to increase your awareness and understanding.

[Angie · Rating 3 out of 5]

Written in easy to understand style with helpful info for caregivers. I particularly like the personal stories and how the caregivers in each one found solutions to the problems . Frequent reminders of the need to provide THOUGHTFUL care ( not always the easiest of tasks when the weight of providing this kind of care is on your shoulders ) and the benefits of doing so for all involved . Good place to start reading for those that love / care for a person with dementia .

[Ashley · Rating 4 out of 5]

“Think of the situation that you are in right now. If someone were to tell you that some element of your reality is not true, you would laugh and think they were being ridiculous. If they continued to insist on a different version of reality than you are experiencing, you may become very annoyed, and eventually very angry with them.”
—
Stresses that these are shared experiences. Life won’t stop coming, but at least we’re sharing it.

[Miriam · Rating 5 out of 5]

This book was so insightful into the journey of dementia. I'll admit it was really hard and emotional to gain an understanding of what someone with dementia experiences. I can't imagine how scary and lonely it would be. I hope that with the knowledge I gained, I will be able to help my loved ones through this journey and be more compassionate and patient.

[Marnie Lansdown · Rating 5 out of 5]

This is probably the most helpful book I’ve read about dementia and how it appears through the eyes of the person with the disease. I appreciated the recommendations on how best to care for and love my mom as she declines and loses abilities due to her Alzheimer’s.

[Jennifer Vigran · Rating 5 out of 5]

Wish I’d read it earlier

As many others have said, it’s a thoughtful and practical discussion of every step of the journey and the reality of those suffering from dementia

[En Yi WEI · Rating 5 out of 5]

So many things said in this book that deserves more time to ponder over ...

IMHO, it is a resource book and a reminder book ... one to re-read regularly

[Jill Crosby · Rating 5 out of 5]

Should be handed out to families who have an immediate member recently diagnosed with dementia. Full of examples, experiences, and encouragement!

[Joan Fung-Tomc · Rating 5 out of 5]

Very informative. Practical advice based on Jennifer Ghent-Fuller's years of working with families and patients with dementia.

[Gayle Parker · Rating 5 out of 5]

This is a must read for anyone who has a loved one with dementia. Written by a RN from London, ON