Patricia R. Callone - The Alzheimers Caregiving Puzzle: Putting Together the Pieces

The Alzheimers
Caregiving Puzzle

Putting Together the Pieces

Patricia R. Callone, MA, MRE
Connie Kudlacek, BS

Acquisitions Editor: Noreen Henson
Cover Design: Carlos Maldonado
Compositor: Newgen Imaging Systems
Printer: Bang Printing

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2011 CaringConcepts, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher.

Medical information provided by Demos Health, in the absence of a visit with a health-care professional, must be considered as an educational service only. This book is not designed to replace a physicians independent judgment about the appropriateness or risks of a procedure or therapy for a given patient. Our purpose is to provide you with information that will help you make your own healthcare decisions.

The information and opinions provided here are believed to be accurate and sound, based on the best judgment available to the authors, editors, and publisher, but readers who fail to consult appropriate health authorities assume the risk of any injuries. The publisher is not responsible for errors or omissions. The editors and publisher welcome any reader to report to the publisher any discrepancies or inaccuracies noticed.

Library of Congress Cataloging-in-Publication Data

The Azheimers caregiving puzzle : putting together the pieces / Patricia R. Callone, Connie Kudlacek.

p. cm.

Includes index.

ISBN 978-1-932603-88-0

1. Alzheimers diseasePopular works. 2. Caregivers. I. Callone, Patricia R. II. Kudlacek, Connie.

RC523.A36735 2011

649.80846dc22 2010030046

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Why this book? Arent there enough books on the market about Alzheimers disease and caregiving? This is the third book we have published with Demos Health Publishing. Both of the other two books: Alzheimers DiseaseThe Dignity Within: A Handbook for Caregivers, Family and Friends (2006) and A Caregivers Guide to Alzheimers Disease: 300 Tips for Making Life Easier (2006) continue to help caregivers of loved ones with Alzheimers disease or other dementia.

However, through the growing body of knowledge about Alzheimers disease and other dementia, we have developed new insights that need to be shared. From our own experiences, we have continued to learn more about engaging and nurturing persons with the disease as well as ways to nurture caregivers in the care-giving process. We continue to hear of ways in which persons with dementia can be exploited or abused. Family members and caregivers need to learn how to protect older persons who are most vulnerable in our society. We feel the caregiving puzzle of Alzheimers diseasefor both persons with the disease and their caregiversneeds to be revisited again.

We hope to plant new seeds for reflection about the dignified, appropriate, and safe care of persons with dementia and the appropriate care of caregivers.

We acknowledge the following people for their assistance in helping us shape the concepts and examples in this book.

Duane Gross, PhD, President and CEO, and Clayton Freeman, BA, Program Director, both from the Alzheimers Association Midlands Chapter for their wealth of information and expertise they continue to share with us.

Noreen Henson, Director of Health Publications and Education, Demos Health, for her guidance and encouragement throughout the development of this book.

Helene L. Lohman, OTD, OTR/L, Associate Professor, Department of Occupational Therapy, School of Pharmacy and Health Professions, Creighton University. Helene teaches occupational therapy with elders. She is involved with the Memories in the Making Project through the Midlands Chapter of the Alzheimers Association.

Patricia M. Sullivan, PhD, Professor of Psychiatry, School of Medicine, Creighton University. Dr. Sullivan is Co-Director of the Creighton Study of Violence Across the Lifespan and Director for The Center of Childrens Issues. She has helped us understand the different ways in which vulnerable adults can be exploited or abused. Learning about those issues prompts caregivers to find ways to prevent abuse and exploitation of the most vulnerable among older adultsthose with dementia.

Andrea Thinnes, OTD, OTR/L, Assistant Professor of Occupational Therapy and Director of Clinical Education, School of Pharmacy and Health Professions, Creighton University. Andrea is involved with the Memories in the Making Project through the Midlands Chapter of the Alzheimers Association.

Patricia R. Callone, MA, MRE, met Connie Kudlacek in 1986 when her mother was diagnosed with Alzheimers disease. She continues to be a volunteer with the Alzheimers Association Midlands Chapter and has served as Vice President and President of the Board of Directors as well as on support committees concerning education and legislative issues. Pat has been a caregiver since she was 8 years old when her father was diagnosed with multiple sclerosis. She has cared for persons in her family who have had various illnesses including Alzheimers disease. For 18 years, she was a caregiver to three people in her family who had dementia. She is involved in the community concerning aging issues and holds a leadership position in the Coalition to Protect Aging Adults (CPAA).

Connie Kudlacek, BS, was Executive Director of the Alzheimers Association Midlands Chapter from 1986 to 2006. During that time, she met and worked with many committed and dedicated individuals who were caregivers to persons with Alzheimers disease. Her personal caregiving experience has spanned over 55 yearsbeginning with caring for her mother who had cancer and continuing for the last 29 years as a caregiver to her son, who at the age of 18, experienced a severe closed head injury. She also continues to care for family relatives who have Alzheimers disease and is actively involved in elder issues within her community.

In 2003, Connie and Pat formed a partnership and created CaringConcepts, Inc. (www.caringconcepts.org)

Roger A. Brumback, MD, is a Professor of Pathology and Psychiatry and Chairman of the Department of Pathology, Creighton University School of Medicine, Omaha, Nebraska. He has been associated with the work of the Alzheimers Association for many years. He and his wife, Mary, have served as long-distance caregivers to members in their families diagnosed with Alzheimers disease.

Charles Timothy Dickel, EdD, is a longtime faculty member at Creighton University and currently holds the titles of Professor of Education, Professor of Psychiatry, and Co-Director of the Creighton Study of Violence Across the Life Span. In 1986, Tim was invited to form a support group of Alzheimers family members by the local Alzheimers Association. This began more than 20 years of interest in the well-being of caregivers and family members of persons diagnosed with dementia.