Dignified Life : The Best Friends Approach to Alzheimer's Care, A Guide for Family Caregivers

by Bell, Virginia

• ISBN13: 9780757300608
• ISBN10: 075730060X
• Format: Paperback
• Copyright: 2002-09-01
• Publisher: HCI BOOKS

Summary

Four million Americans currently suffer from Alzheimer's disease and experts estimate that 22 million people around the world will be so afflicted by 2025. Far too many families are struggling with the emotionally and physically draining responsibility of redefining their relationship with, and caring for, someone who not long ago was a vibrant member of society, yet may not know their own name today. A Dignified Life helps combat the burnout and frustration that often accompany the task of caring for an Alzheimer's patient. Author David Troxel, an Alzheimer's expert and executive director of the California Central Coast Chapter of the Alzheimer's Association, maintains that at its simplest this approach is based on treating the person like a best friend and working from their strengths, not their weaknesses. He explains: "As family members, caregivers and professionals, we have to try to connect with them. People with this disease in some way need someone to be . . . attentive and empathetic--someone who really tries to walk a mile in their shoes." A Dignified Life goes beyond the typical tips offered by most books and takes advantage of readers' instinctive desire to build friendships and taps into the intuitive aspect of caregiving that is part of our very nature. It provides a complete model for care built around creative and effective communication and meaningful activities and includes touching stories that demonstrate how the Best Friends method continues to improve the lives of both those who have Alzheimer's disease and those who care for them.

Author Biography

Virginia Bell, M.S.W., and David Troxel, M.P.H., are recognized experts on the best practices in Alzheimer's care and authors of two other well-respected and popular books on the subject. Virginia, program consultant for the Greater Kentucky and Southern Indiana Alzheimer's Association, is the founder of that association's award-winning Helping Hand Adult Day Center. David, CEO of the California Central Coast Alzheimer's Association, is a member of the national Alzheimer's Association's Ethics Advisory Panel. Both are sought-after speakers at conferences relating to Alzheimer's disease and aging around the world

Table of Contents

Dedication	xiii
Acknowledgments	xv
Introduction	xix
I ALZHEIMER'S DISEASE AND DEMENTIA
What's Happening? The Experience of Alzheimer's Disease	3	(18)
Learn about common emotions and experiences of persons with Alzheimer's disease and why the Best Friends approach so successfully addresses them
Worry and Anxiety
Frustration
Confusion
Loss
Sadness
Embarrassment
Paranoia
Fear
Anger
Isolation and Loneliness
The Best Friends Approach
What Is Known? Diagnosis, Treatment, and Research	21	(24)
Find answers to key questions about Alzheimer's and related dementias
Is It Normal to Have Memory Lapses Now and Then?
Can a Doctor Help Someone Determine if There Is a Problem?
What Does It Mean if the Doctor Diagnoses Some Form of Dementia?
Is That the Same as Senility?
Disorders That May Be Treatable
Disorders That Are Currently Irreversible
What Does It Mean if My Doctor Is Using the ``A'' Word---Alzheimer's Disease?
Do All People with Alzheimer's Disease Have the Same Course of Illness?
What Kind of Medical Treatment Is Appropriate?
Can Other Health Problems Worsen the Effects of Dementia?
What Are Psychotropic Drugs and Can They Help?
Is Alzheimer's Disease Inherited?
Can Alzheimer's Disease Be Prevented?
How Does a Person with Alzheimer's Disease or Dementia Become Part of a Research Study?
What Happens at the End?
What Now? Making Sense of the Diagnosis	45	(18)
Begin mapping out your next steps and the best ways to tackle them after a diagnosis of an irreversible dementia has been made
Be Open with the Person About His or Her Situation
Deal with Denial
Be Open with Others About Your Family Situation
Get Legal and Financial Affairs in Order
Make a Financial Plan for Health Care Services
Make a Realistic Assessment of Yourself and Your Community
Make a Realistic Assessment of Your Loved One with Dementia
Work to Preserve, or Even Enhance, Family Relationships
Continue to Be Part of the Community
Make the Environment Simple and Safe
II THE BEST FRIENDS APPROACH
A New Start: The Art of Friendship	63	(34)
Discover how the elements of friendship provide a powerful new way to care for and relate to a person with dementia
Friends Know Each Other's Personality and History
Friends Do Things Together
Friends Communicate
Friends Build Self Esteem
Friends Laugh Together Often
Friends Are Equals
Friends Work at the Relationship
Memory Making: Honoring a Person's Life Story	97	(40)
Collect the critical ingredients for creating a loving and constructive picture of the history and interests of your loved one, then learn how to use this information in your everyday interactions
Ingredients of the Life Story
Childhood
Adolescence
Young Adulthood
Middle Age
Later Years
Other Major Ingredients
How to Use the Life Story
Greeting the Person and Improving Recognition
Introducing the Person to Others
Reminiscing Improving Communication through Clues and Cues
Designing Appropriate Activities
Pointing Out Past Accomplishments
Helping to Prevent Challenging Behaviors
Incorporating Past Daily Rituals
Broadening the Caregiving Network and Resources
Life Story of Rebecca Matheny Riley
The ``Knack'': Basic Principles of Dementia Care	137	(26)
Discover the Elements of Knack---the skills that pave the way for successful caregiving---and see how to use them to handle common situations and problems that arise
Being Well-Informed
Having Empathy
Respecting the Basic Rights of the Person
Maintaining Caregiving
Integrity
Employing Finesse
Knowing it Is Easier to Get Forgiveness than to Get Permission
Using Common Sense
Communicating Skillfully
Maintaining Optimism
Setting Realistic Expectations
Using Humor
Employing Spontaneity
Maintaining Patience
Developing Flexibility
Staying Focused
Being Nonjudgmental
Valuing the Moment
Maintaining Self-Confidence
Using Cueing Tied to the Life Story
Connecting with the Spiritual
Taking Care of Yourself
Planning Ahead
III THE BEST FRIENDS APPROACH IN ACTION
Connecting: Communicating with ``Knack''	163	(20)
Use the Best Friends philosophy of communication to develop effective new tools for interacting with your loved one in everyday situations
Communicating with Knack
Avoid Arguments
Make Directions Clear
Coping with a Mother's Accusations
Doing Extra Work to Understand Seemingly
Incomprehensible Words
Encouraging a Bathroom Stop
Dealing with Loss
Being Together: Managing and Valuing Activities	183	(26)
Improve the quality of shared moments by making sure activities are meeting the needs of the person with dementia. Everyone needs to:
Be Productive or Make a Contribution
Experience Successes
Play
Be with Others
Build Skills
Have a Sense of Control
Feel Safe and Secure
Fill Religious or Spiritual Needs
Experience Growth and Learning
Inner Passage: Spiritual Journeying and Religion	209	(14)
Explore the possibilities for providing experiences that nurture the spirit throughout the course of the disease
Celebrate the Person's Religious Heritage
Embrace Simplicity
Look to the Creative Arts
Nourish Your Own Spiritual Life
Give Spiritual Care Throughout the Illness
Finding Help: Navigating the Long-Term Care Maze	223	(28)
Understand that you aren't expected to do it all and learn about the range of services you can access to support your caregiving efforts
Care in the Home
Adult Day Center Care
Residential Care (Assisted Living, Skilled Nursing Facilities, Continuing Care Retirement Communities)
IV LIVING WITH DIGNITY
Self-Care: Being Your Own Best Friend	251	(20)
Make sure you are taking care of yourself and replenishing your own reserves, even while caring for another
Ways to Take Care of Your Own Needs
When Everything Is Going Wrong
Consider the Future
The Power of a Diary: Rebecca and Jo Riley
Transformations	271	(8)
See, finally, that it is possible to transform the many challenges of dementia into rewarding experiences
Contentment
Serenity and Peacefulness
Orientation Fulfillment
Cheerfulness
Confidence
Trust
Security
Calm
Connectedness
Community Resources for Making In-Home Care Easier	279	(8)
Organizations, Web Sites, and Recommended Readings	287	(12)
Biographies	299	(22)
About the Authors	321

Excerpts

Chapter 4A New StartThe Art of Friendship Alzheimer's disease changes us all. Because of the associated memory loss and confusion, your mother, father, sister, brother, husband, wife, or partner may no longer know you or understand his or her relationship to you. Many caregivers are confused, frustrated, sad, or even angry about these losses. Your mother may have always been your closest confidante and strongest supporter; now, she does not recognize you. A spouse whom you counted on for many years to balance the checkbook, pay bills, file the income taxes, or cook three meals a day is no longer able to do these things. As a result, your relationship with the person changes whether you like it or not. Adopting a Best Friends approach can help diminish this pain and loss and can have a powerful impact on the person with dementia. When you rethink, or recast, your relationships to individuals with dementia and become a Best Friend to them instead of just a caregiver, the person now feels you are on his or her side. In addition, friendship helps evoke some of the social graces or learned manners of the person with dementia. It helps put the person on his or her best behavior. Caregivers using the Best Friends approach have made the Helping Hand day program of the Greater Kentucky/Southern Indiana Alzheimer's Association one of the most admired adult day programs in the United States. Many individuals with dementia in Helping Hand have been considered difficult and challenging by their own family caregivers. Yet at Helping Hand, because the staff and volunteers are acting as friends, they thrive. Families can have similar success using the Best Friends approach at home. Rather than staying in a state of despair, caregivers can learn to work through the pain and focus on gaining maximum value from the present; caregiving is transformed from a terrible burden to a job that becomes meaningful and satisfying. The process changes from a series of failures to a series of successes. Recasting this relationship to become a Best Friend does not mean taking away love or loving the person with dementia any less. It simply means approaching the relationship differently. One caregiver told us that he had always had a troublesome relationship with his father-so bad, in fact, that he ran away from home at age 16. He now cares for his father full time and says they have never been closer. They take a daily walk together, have an evening scotch and soda, and watch the grandchildren play soccer. They have found that they now enjoy each other's company. Because the father has forgotten much of the past and is often unsure of his relationship with his son, the son has realized that he, too, must let go of past slights and injustices. "What's the point of me dwelling on it?" the caregiver asks. "What's past is past." Like many caregivers, the son never dreamed he would be in the position of taking care of his father, a father whom he admits disliking for

---

Excerpted from A Dignified Life: The Best Friends Approach to Alzheimer's Care, A Guide for Family Caregivers by Virginia Bell, David Troxel
All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.