The Enduring Self in People with Alzheimer's Getting to the Heart of Individualized Care By Sam Fazio, Ph.D. Foreword by Stephen G. Post, Ph.D.

Excerpted from the Introduction of The Enduring Self in People with Alzheimer’s by Sam Fazio, Ph.D.

Copyright © 2008 by Health Professions Press, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Introduction

Over the past decade there has been an abundance of information about good dementia care produced by a variety of people and housed in a variety of places. Much of that information shares common elements regarding how to provide care that supports the person. I decided to write this book to revisit that information, specifically in relation to the preservation of self, and to put much of that good information in one place. My current research regarding the persistence of self also adds a new dimension to this ongoing discussion. This book was designed to highlight various theoretical and philosophical perspectives, review research and evidence, and illustrate how they can all be translated into practice and applied to our everyday care approaches and interactions.

The book is divided into three major sections. Section I provides the foundation with background on the self, Alzheimer’s disease, and person-centered care. Chapter One  reviews the fundamental elements of dementia care that support personhood, or the self. Topics include the culture change movement, the impact of language, the concept of caring, core values in providing care, and getting to know the individual with dementia. Chapter Two takes a step back and highlights theories about the self and how it develops

with time and experience. Definitions of self, measurements of self, and the evolution and adaptation of self throughout the life course are discussed. Chapter Three then reviews the basics of Alzheimer’s disease and evolving thinking about it. Topics include diagnosis and progression, treatment, and models of care. Chapter Four summarizes my research on the persistence of self. The chapter outlines how the self can be measured through language use and visual self-recognition. The data and more specific details about the study are provided in the appendix. Together, the first four chapters provide the background or evidence for practices that support the self in everyday care.

Section II provides a description of essential elements of care that support selfhood. Chapter Five reviews how the physical and interpersonal environments can be structured to support the self. Topics include key principles of design, identity and home, therapeutic milieu, and approaches to activities that recognize the self. Chapter Six then discusses more specifically how interactions and relationships can be approached to  honor and maintain the self. The role of the care provider in caring, in listening and communicating, and in deeper caring connections is discussed. Together, these two  chapters provide ideas for how thinking and practice can evolve to meet individual needs and to support the self.

Section III brings together the foundation and essential elements that are discussed in the first two sections and outlines the key concepts for maintaining the self. Chapter Seven describes specific elements of care and ways of thinking that sustain the self. Topics in this chapter include maintaining the self, creating supportive environments, being in the moment, and interventions that support identity. Chapter Eight provides action steps and resources to use in sharing the essentials of maintaining selfhood with others in your community. This chapter includes a plan of action and key points from the previous chapters to share with others. Together, these two chapters provide the framework and tools to take the information back to your community and to start, or to continue, the culture change movement.

This book has been designed to include many practical pieces for the reader. Throughout chapters, examples are provided to illustrate concepts. Additionally, each chapter ends with an exercise, or SELF-Reflection, to encourage you to think through the information and to consider how to apply it in your community. A case example is also provided at the end of Chapter Seven to tie all of the concepts together into a real-world example and to bring the entire book to life. Finally, recommended readings are included at the end of the book to share a range of resources that have influenced my thinking and practice.

The purpose of this book is to expand and inspire the continuing discussion of changes in thinking, attitudes, and care approaches in communities that provide care to people with dementia. It hopefully will be a steppingstone to increasingly better care practices that recognize and support the self. Remember, change takes time and attention. It sometimes requires us to be patient and persistent at the same time. Keep in mind that one small change can have rippling effects and can serve as an example or catalyst for others to follow.