Jennifer Ghent-Fuller - Thoughtful Dementia Care

In this book,Thoughtful Dementia CareTM: Understanding the DementiaExperience, the author expands on her short paper entitled,Understanding the Dementia Experience, which is featured onwebsites for carers of people with Alzheimers disease or a relateddisease, and has been downloaded by thousands of people. Here aresome of their comments:

This is one ofthe best things that I have read on the subject ofAlzheimers.

Ive only gottento page 4 and Ive found the answers to half a dozen situationsthat have been driving me crazy.

Most books aremore high-level and dont address the moment-to moment issues thatcan arise. Your article cuts to the emotional and practical core ofthings, and for that I am grateful.

Great article.Going to make copies of it and give them to family and friends thatkeep saying to me, But he seems OK to me. One of the bestarticles I have read.

I printed a copyof this article because I believe it may be the best I have read tohelp those who are not impaired understand our experience. I amdeeply grateful to Jennifer Ghent-Fuller for writing such awonderful piece.

The most helpfularticle I have found as I attempt to understand the changes in myfathers behaviour.

The paperexamines how everyday life changes for Alzheimers patients andtheir families as the disease progresses. The paper also gives atremendous amount of insight in to the way Alzheimers patientsview different situations and offers suggestions about how tointeract and cope.

An excellentarticle that is frequently recommended.

The touchstonefor entering our loved ones new reality and learning how torespond to confusing behaviours.

I have had theopportunity to read many scientific and lay articles but this wasone of the best I have ever read.

This author mustbe someone very special. Her understanding of the disease processand her translation for caregivers in the home setting as well asin the healthcare field is so helpful.

Very instructivereading. It is written in a lively conversational manner that verywell suits the caregivers of Alzheimer Disease patients.

A wonderful,easily understood article on dementia.

It is withimmense honor that I send you my heartfelt thank you for yourwonderful and amazing paper, Understanding the DementiaExperience. This is the single most often recommended body of workthat we refer families and caregivers to. You have touched hundredsand hundreds into the thousands of caregivers and families from allover the planet.

Copyright 2012 byThoughtful Dementia Care Inc.

The Trademark,Thoughtful Dementia CareTM and Thoughtful Dementia CareInc. are solely owned by the author, Jennifer Ghent-Fuller

All rightsreserved. No part of this book may be reproduced, stored in aretrieval system, or transmitted, in any form or by any means,electronic, mechanical, photocopying, recording, or otherwise,without prior written permission of the copyright holder.

ISBN978-0-9881678-1-0

This book isavailable in print at www.understanding-dementia-experience.com

SmashwordsEdition

This ebook islicensed for your personal enjoyment only. This ebook may not bere-sold or given away to other people. If you would like to sharethis book with another person, please purchase an addtiional copyfor each recipient. If you 're reading this book and did notpurchase it, or it was not purchased for your use only, then pleasereturn to Smashwords.com and purchase your own copy. Thank you forrespecting the hard work of this author.

Table of Contents

(Note: All hyperlinks to web sites mentioned in the text arelocated in this section)

Alzheimersdisease and other diseases causing dementia slowly steal allmemories and abilities that have been learned since infancy - aprocess of progressive, permanent amnesia. All dementias arecharacterized by progressive brain failure due to brain celldeterioration and brain cell death. There is no cure for dementiaat present. As the brain deteriorates, the persons ability,understanding and behaviour go through many changes.

Often people witha dementia such as that caused by Alzheimers disease are seen asindividuals with behaviour problems. It is important to reframe howpeople with dementia are viewed. When I first began to work in thearea of care of people with dementia, I noticed that much of thereference material was about how to cope with the challengingbehaviours of people with dementia. It was written from theviewpoint of the people looking after them. I set out to helpmyself and others understand instead, the viewpoint of the personwith dementia.

If caring forpeople with dementia is challenging, how challenging is theexperience of the people who have dementia? Firstly, they arepeople with an altered view of reality due to the Alzheimersdisease (or another disease causing dementia). Secondly, they arepeople, whose behaviour can change, depending on how we interactwith them. In order to know how to interact with a person withdementia, it is important to understand what they are experiencingas a result of having dementia.

Once we understandthe dementia experience, and no longer view people with dementia ashaving behaviour problems, we are able to see their behaviour asappropriate within the context of the dementia. This allows us toapproach their care without fear. We can then deliver palliativecare, care appropriate to someone with a fatal illness, with loveand kindness.

For those readerswho have dementia, or whose family members have dementia, this isemotionally difficult reading. Please remember that you have a lotof living left to do. You will need to find different ways to dothings, but it is important to look for joy and hope every day.There is an enormous amount of research being done on dementia,with new research being published daily, and reason to hope for newtreatments being available in the future. There is joy to be foundin ones friends and family, in the beauty of nature, in theenjoyment of daily events, and in shared laughter. There is prideand contentment to be found in caring for a loved one, even thoughthey have changed and become unable to do the things they did inthe past. So please read to understand, and then turn your thoughtsto the positive.

The initial draftof this document was written in 2002 to explain to family membersthe changes in the way people with dementia act and think. For manyyears it has been distributed freely and also made available inpdf format online as Understanding the Dementia Experience.Since then it has received wide circulation and many people havewritten to say how much they appreciated the insight they gainedthrough reading it. It also served as the outline for my familyteaching sessions for many years. However, some topics that areimportant were not covered. In view of the need to think carefullyabout the experience of the person with dementia, and also to bethoughtful in terms of showing kindness, this new version isentitled Thoughtful Dementia Care: Understanding the DementiaExperience.

One woman withdementia, who lived thousands of miles from me, read the 2002 paperonline and sent me a very kind email. She was very thankful to havesomething to show to her husband and her sister that would tellthem that she was not just being lazy or not trying hard enough,but that the way she was functioning was because she had beendiagnosed with Alzheimers disease. Another fellow, a relative towhom I was very close, said to me, I hope I never become violenttoward my wife. I replied that I would help her understand how tointeract with him, so that this would never happen. His thanks wereheart-felt. Many things in this book were difficult to write, butthey were written in the determination to try to help makeday-to-day life for the person with dementia and the carers, withwhom they live, more understandable and, therefore, lessstressful.