Palliative Care for Advanced Alzheimer's and Dementia
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SABBAGH PALLIATIVE CARE for MARTIN Advanced Alzheimer’s and Dementia Guidelines and Standards for Evidence-Based Care PALLIATIVE CAREPALLIATIVE for THE DESERT SOUTHWEST CHAPTER OF THE ALZHEIMER’S ASSOCIATION Gary A. Martin, PhD PALLIATIVE Marwan N. Sabbagh, MD, Editors “This book…provides important information on best practices and appropriate ways to care for a person with advanced Alzheimer’s and dementia. Drs. Martin CARE for and Sabbagh have assembled a team of experts to help craft recommendations that should ultimately become standards that all professional caregivers adopt.” —MICHAEL REAGAN Son of former President Ronald Reagan Dementia and Alzheimer’s Advanced President, Reagan Legacy Foundation Advanced his book testifi es that caregivers can have a monumental impact on the lives of persons with Tadvanced dementia. Through specialized programming and a renewed effort toward patient- centered care, caregivers can profoundly enrich the quality of life for these persons. Providing guidelines for health care professionals, caregivers, and family members, this book introduces palliative care programs and protocols for the treatment of people with advanced dementia. Alzheimer’s Designed to guide professional caregivers in meeting the needs of patients and their families, the content provides insight into the philosophy, assessment, planning, implementation, and evaluation measures involved in interdisciplinary palliative care. The guidelines and standards of care are based on contributions from nurses, physical therapists, social workers, dietitians, psychologists, family and Dementia caregivers, and pastors. An exhibit at the end of every chapter clearly articulates the standards of care appropriate for all advanced dementia facilities and health care staff. The content helps caregivers to: • Enhance the physiological, psychological, social, and spiritual well-being of the patient Guidelines and Standards for and the patient’s family • Anticipate and meet the patient’s basic human needs: hunger, thirst, body positioning, Evidence-Based Care hygiene, continence, and management of any pain • Ensure that the patient’s surroundings are safe, comfortable, and homelike • Address health care decisions that will support the patient’s right to self-determination until the end of life GARY A. MARTIN • MARWAN N. SABBAGH EDITORS 11 W. 42nd Street New York, NY 10036-8002 www.springerpub.com PALLIATIVE CARE FOR ADVANCED ALZHEIMER’S AND DEMENTIA GUIDELINES AND STANDARDS FOR EVIDENCE-BASED CARE Gary A. Martin, PhD, is a licensed clinical psychologist and a geriatric and long-term care specialist who is an owner of Integrated Geriatrics Behavioral Health Associates, PA, an incorporated behavioral health provider group in Scottsdale, AZ. Dr. Martin is the clini- cal director of several retirement and assisted living communities in the Greater Phoenix area. In addition, he is the clinical director of 14 specialized behavior units, which are long-term care based, and 11 specialized dementia programs in the Greater Phoenix area. His areas of specialization include program development for dementia care programs and behavioral treatment programs for high-acuity patients in long-term care settings; staff training; palliative care; clinical oversight of persons with dementia; consultation with nursing homes, assisted-living facilities, families, and other caregivers on treating older adults; and the education and training of healthcare professionals, physicians, social service staff, and medical and gerontology students in the fi eld of clinical gerontology. Dr. Martin is the recipient of numerous awards, including the Outstanding Community Service award from the Arizona Alzheimer’s Consortium, the Provider of the Year award from the Arizona Business Journal, and several Best Practices awards from Arizona nurs- ing home advocacy groups. Dr. Martin serves on the board of directors of the Alzheimer’s Association, Desert Southwest Chapter, and is a member of the American Psychological Association (APA), the Gerontological Society of America (GSA), and Psychologist in Long-Term Care, Inc., (PLTC), where he was a founding member. Marwan N. Sabbagh, MD, is a geriatric neurologist and dementia specialist. He is one of the leading experts in Alzheimer’s disease research nationally. Dr. Sabbagh received his bachelor’s degree in Physiology at the University of California, Berkeley (UCB) in 1987. He went on to the University of Arizona, College of Medicine in Tucson, AZ, where he received his MD in 1991. He completed a neurology residency at the prestigious Texas Medical Center and Baylor College of Medicine in Houston, TX, in 1995. From there, he under- went additional training in dementia/geriatric neurology at the University of California, San Diego (UCSD). Then, he served on the faculty at UCSD as assistant professor in the Department of Neurosciences. In 2000, he was recruited to the Banner Sun Health Research Institute to be the founding director for the Center for Clinical Research. Since becoming the director of the Cleo Roberts Center for Clinical Research at the Banner Sun Health Research Institute, Dr. Sabbagh has conducted more than 80 clinical trials and clinical research studies in Alzheimer’s disease and other brain degenerative and medical conditions, including being the site principal investigator or national principal investigator for several prevention and treatment trials for Alzheimer’s disease. He serves on the board of directors for the Desert Southwest Chapter of the Alzheimer’s Association. Dr. Sabbagh has authored or coauthored more than 120 published articles, chapters, and abstracts in Alzheimer’s disease research. PALLIATIVE CARE FOR ADVANCED ALZHEIMER’S AND DEMENTIA GUIDELINES AND STANDARDS FOR EVIDENCE-BASED CARE Gary A. Martin, PhD Marwan N. Sabbagh, MD Copyright © 2011 Springer Publishing Company, LLC All rights reserved. No part of this publication 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 permission of Springer Publishing Company, LLC, or authorization through payment of the appropriate fees to the Copyright Clearance Center, Inc., 222 Rosewood Drive, Danvers, MA 01923, 978-750-8400, fax 978-646-8600, [email protected] or on the Web at www.copyright.com. Springer Publishing Company, LLC 11 West 42nd Street New York, NY 10036 www.springerpub.com Acquisitions Editor: Margaret Zuccarini Project Editor: Peter Rocheleau Project Manager: Gil Rafanan Cover Design: Steve Pisano Composition: Absolute Service, Inc. ISBN: 978-0-8261-0675-9 E-book ISBN: 978-0-8261-0676-6 10 11 12 13/ 5 4 3 2 1 The author and the publisher of this work have made every effort to use sources believed to be reliable to provide information that is accurate and compatible with the standards gener- ally accepted at the time of publication. Because medical science is continually advancing, our knowledge base continues to expand. Therefore, as new information becomes available, changes in procedures become necessary. We recommend that the reader always consult cur- rent research and specifi c institutional policies before performing any clinical procedure. The author and publisher shall not be liable for any special, consequential, or exemplary dam- ages resulting, in whole or in part, from the readers’ use of, or reliance on, the information contained in this book. The publisher has no responsibility for the persistence or accuracy of URLs for external or third-party Internet Web sites referred to in this publication and does not guarantee that any content on such Web sites is, or will remain, accurate or appropriate. Library of Congress Cataloging-in-Publication Data Palliative care for advanced Alzheimer’s and dementia : guidelines and standards for evidence- based care / [edited by] Gary A. Martin, Marwan N. Sabbagh. p. ; cm. Includes bibliographical references and index. ISBN 978-0-8261-0675-9 1. Presenile dementia—Patients—Care. 2. Alzheimer’s disease—Patients— Care. 3. Presenile dementia—Palliative treatment. 4. Alzheimer’s disease—Palliative treatment. 5. Palliative treatment—Standards. 6. Evidence-based medicine. I. Martin, Gary A. II. Sabbagh, Marwan Noel. [DNLM: 1. Dementia—therapy. 2. Advance Directive Adherence—standards. 3. Evidence- Based Medicine—standards. 4. Palliative Care—standards. WT 155 P167 2010] RC522.P35 2010 618.97’6831029—dc22 2010023683 Printed in the United States of America by The Hamilton Printing Company To the estimated one million people in the United States today with advanced dementia CONTENTS Foreword by Michael Reagan ix Preface xi Acknowledgments xvii SECTION I: INTRODUCTION TO PROFESSIONAL MANAGEMENT OF ADVANCED DEMENTIA 1. Determining and Defi ning Advanced Dementia 3 2. The Continuum of Care 11 3. Caregiving 25 SECTION II: PROTECTING DIGNITY FOR THE PATIENT WITH DEMENTIA: ESTABLISHING AN ENVIRONMENT AND CAREGIVING STANDARDS 4. Personhood 43 5. Creating the Optimal Milieu for Care 55 6. Managing Behavior Problems Associated With Advanced Dementia 65 7. Assessing and Addressing Pain 83 8. Ensuring the Appropriate Use of Medications in Advanced Dementia 93 SECTION III: MANAGING ACTIVITIES OF DAILY LIVING 9. Eating and Nutrition 107 10. Dressing and Grooming 117 11. Bowel and Bladder Management 123 12. Ambulation and Mobility 131 13. Bathing 147 SECTION IV: PROVIDING FOR OTHER HEALTHCARE NEEDS 14. Activities Programming 155 15. Cultural Diversity 171 16. Healthcare Decisions for Persons