The Common Sense Guide to Dementia for Clinicians and Caregivers

Anne M. Lipton ● Cindy D. Marshall

The Common Sense Guide to Dementia for Clinicians and Caregivers

Anne M. Lipton, M.D., Ph.D.Diplomate in NeurologyAmerican Board of Psychiatry

and Neurology

Cindy D. Marshall, M.D.Director, Memory Center,

Baylor Neuroscience CenterBaylor University Medical CenterDallas, TX, USA

ISBN 978-1-4614-4162-5 ISBN 978-1-4614-4163-2 (eBook)DOI 10.1007/978-1-4614-4163-2Springer New York Heidelberg Dordrecht London

Library of Congress Control Number: 2012940749

© Springer Science+Business Media, LLC 2013This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, speci fi cally the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on micro fi lms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. Exempted from this legal reservation are brief excerpts in connection with reviews or scholarly analysis or material supplied speci fi cally for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work. Duplication of this publication or parts thereof is permitted only under the provisions of the Copyright Law of the Publisher’s location, in its current version, and permission for use must always be obtained from Springer. Permissions for use may be obtained through RightsLink at the Copyright Clearance Center. Violations are liable to prosecution under the respective Copyright Law.The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a speci fi c statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. While the advice and information in this book are believed to be true and accurate at the date of publication, neither the authors nor the editors nor the publisher can accept any legal responsibility for any errors or omissions that may be made. The publisher makes no warranty, express or implied, with respect to the material contained herein.

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To our patients and families who share their lives and teach us every day.

vii

Dr. Robert Katzman of the United States (US) warned in 1976 that, because of the demographic revolution in developed countries of a rapidly aging population, Alzheimer’s disease (AD) and other dementing illnesses would soon reign among society’s major killers.

His prediction has now been realized. AD now stands as the sixth leading cause of death and the only one among the leading causes of death in the US that lacks truly effective therapies. An estimated 5.3 million Americans have AD (this is almost certainly an underestimate, as many persons with the disorder are not diag-nosed) and the Alzheimer’s Association estimates that the annual costs of caring for patients with AD has already approached $200 billion. In coming years, the prob-lems will only worsen as the US population continues to age, with the fi rst of the “baby boomers” (people born from 1946 to 1964) now turning 65 and older. AD thus represents a public health problem of enormous proportions.

Although in older adulthood, Alzheimer disease is by far the leading cause of dementia, other non-Alzheimer dementing disorders (e.g., Vascular dementia, Frontotemporal dementia, and Dementia with Lewy bodies) in many respects pose the same challenges and emotional turmoil for caregivers.

It is the human cost of AD and related disorders that is devastating for those with dementia and perhaps even more so for their loved ones. The inevitable deteriora-tion of the de fi ning attributes of individuals that make them uniquely human—memory, language, reasoning, personality—is heart wrenchingly dif fi cult for both patients and caregivers to endure. Over an average duration from symptom onset to death of 7–10 years, AD invariably progressively disables and ultimately results in total dependence. Caring for an individual with AD is associated with “caregiver burden” and deleterious effects on health, income, and fi scal security, as well as the emotional toll of watching the disease rob the very essence of a loved one.

Well-established and helpful sources of information and support exist for care-givers who are facing the problem of dementia in a loved one, including the national Alzheimer’s Association ( www.alz.org ). However, there is also a great need for a comprehensive guide to all the different facets of caregiving that is informative and

Foreword

viii Foreword

approachable. We are fortunate that Anne M. Lipton, MD, PhD, and Cindy D. Marshall, MD, have provided this book.

Both Dr. Lipton, a neurologist, and Dr. Marshall, a geriatric psychiatrist, are highly experienced in diagnosing and caring for individuals with Alzheimer disease and other dementing illnesses. In The Common Sense Guide to Dementia, they speak to all caregivers in plain language to educate about important topics. They provide clear de fi nitions of what can be a confusing array of terms associated with the dementing disorders and emphasize their points with case illustrations and com-mon sense rules. Most critically, they remain focused on the practical aspects of caregiving, including how to seek a diagnosis for a loved one, a checklist of what to bring for a visit to the doctor, and very helpful recommendations on how to address such dif fi cult situations as “retiring” a person from driving who is no longer safe to drive. Here also is useful information on nonpharmacological approaches to demen-tia management, a consideration of end-of-life issues, and how to care for the caregiver.

This Common Sense Guide is directed toward and will indeed bene fi t all types of caregivers, including health professionals, dealing with AD and other dementias. Drs. Lipton and Marshall clearly wish to help both those affected by dementia and their carers, and we are fortunate that they have provided us with such a useful guide on how to do so with this book.

St. Louis, MO, USA John C. Morris

ix

We respect and appreciate patients and all types of caregivers, be they family or friends, professionals or volunteers. That is why we have written a book that can speak to everyone who may play an important part in the care of a patient. Our pri-mary intent is caregiver education, and, as such, our book is speci fi cally designed, written, and addressed to the caregivers of a patient rather than speaking directly to a patient. However, we recognize and respect the fact that some patients with Mild Cognitive Impairment or early-stage dementia may fi nd our observations useful, and we welcome such interest.

Although this book follows a logical order and grouping of caregiving topics, it need not be read from cover to cover. In fact, in our experience, some caregivers might fi nd it overwhelming to do so. Therefore, we have written each chapter so that it may be read on its own, as can individual subheadings. A comprehensive index can be consulted as needed for information on speci fi c topics. We note that the last couple of chapters may be dif fi cult to read for some caregivers, and we recommend reserving reading those until the caregiver is in a good frame of mind and when these chapters have become relevant.

Note on terminology: Please note that we sometimes use the term “doctor” as a convenient shorthand that might apply not only to physicians per se but to any of those who, when and where warranted, may legally and practically ful fi ll some or all of the “doctor” role, such as explaining diagnosis, providing non-pharmacologic treatment, or even prescribing medications. This may include nurses, nurse practi-tioners, physician’s assistants, medical assistants, psychologists, neuropsycholo-gists, counselors, psychotherapists, occupational therapists, physical therapists, speech therapists/speech-language pathologists, pharmacists, pharmacy techni-cians, other allied health professionals, and even other medical or of fi ce staff, who

Preface

x Preface

may often act as an extension (“the ear and the voice”) of physicians. Similarly, when we discuss family, we are including any of those nonprofessional but vital caregivers who may have medical Power of Attorney, accompany a patient to a doctor’s visit, or perform roles typically performed by a family member, when such a relative is not available.

Texas, USA Anne M. Lipton, M.D., Ph.D. Cindy D. Marshall, M.D.

xi

We are thankful for the opportunity to have worked with so many wonderful patients, families, volunteers, and other caregivers over the years. We are especially grateful for the unwavering support and tolerance of our own families in the writing of this book. We acknowledge the invaluable input of Carol P. Dabner, J.D., Senior Counsel for Underwood Perkins, P.C., in Dallas and a specialist in elder law. We appreciate her expert review of our chapter dealing with legal issues. And, we send a special message of thanks to Rhonda Moore, our long-standing assistant, who is a model of compassion.

Acknowledgments

xiii

Although the case examples stem from our experiences as dementia specialists, any and all private health information has been protected by omitting, altering, or combining as a composite the details of any individual to protect and preserve con fi dentiality.

Disclosure

xv

1 What Is Dementia?.................................................................................. 1Basic Clinical Definitions ......................................................................... 1Dementia: Definitions ............................................................................... 2Onset of Dementia .................................................................................... 3Progression of Dementia ........................................................................... 3Stages of Care ........................................................................................... 4References ................................................................................................. 4

Part I Start of Care

2 Signposts: What to Look for and When to Seek Help ......................... 7Selected Types of Dementia ...................................................................... 9

Alzheimer’s Disease ............................................................................. 9Mild Cognitive Impairment .................................................................. 10Vascular Dementia ................................................................................ 10Mixed Dementia .................................................................................... 12Parkinson’s Disease Dementia .............................................................. 12Parkinson’s-Plus Syndromes ................................................................. 12Frontotemporal Dementia ..................................................................... 13Traumatic Brain Injury .......................................................................... 14

Other Diagnostic Considerations .............................................................. 14Summary ................................................................................................... 16Websites .................................................................................................... 17Common Sense Rules ............................................................................... 17References ................................................................................................. 17

3 Finding Help ............................................................................................ 19Advocating for the Person with Dementia ................................................ 19Primary Medical Care ............................................................................... 22

Contents

xvi Contents

Identifying a Specialist ............................................................................. 23Who Are Specialists? ............................................................................ 23

Why Consult a Specialist? ........................................................................ 25How and Where Can I Find a Specialist and Other Resources? ............................................................................... 25What if I Can’t Get My Loved One to the Doctor for Memory Problems? ............................................................................. 26Summary ................................................................................................... 27Common Sense Rules ............................................................................... 28Websites .................................................................................................... 28References ................................................................................................. 28

4 Preparing for a Visit to the Doctor ........................................................ 29Before You Go to the Doctor .................................................................... 29

Making an Appointment ....................................................................... 29Forms .................................................................................................... 32Medication List ..................................................................................... 32History ................................................................................................... 37Your List ............................................................................................... 38

Sensitive Subjects ..................................................................................... 40Summary ................................................................................................... 41Common Sense Rules ............................................................................... 41

5 Making the Most of the Doctor’s Visit .................................................. 43What You Need to Bring to the Doctor’s Office ....................................... 44Assistive Devices ...................................................................................... 45Communicating with the Doctor ............................................................... 45

Other Strategies for Communicating with the Doctor .......................... 47How the Doctor’s Visit Works .................................................................. 48

History ................................................................................................... 48Activities of Daily Living ......................................................................... 49Behavior .................................................................................................... 49Cognition................................................................................................... 50

Other Medical History .......................................................................... 50Examination .......................................................................................... 50Additional Evaluation ........................................................................... 51

Assessment ................................................................................................ 51Plan of Care ............................................................................................... 52Between Patient Appointments ................................................................. 53

Know When to Call............................................................................... 53Follow-Up on the Plan of Care ............................................................. 53

Follow-Up Appointments.......................................................................... 54Summary ................................................................................................... 55Common Sense Rules ............................................................................... 55References ................................................................................................. 55

xviiContents

Part II Common Sense Dementia Care

6 The Seven Common Senses of Dementia Care ..................................... 59First Principle: Independence and Respect ............................................... 59Second Step: Teamwork ............................................................................ 60Third Thing to Do: Stick with It! .............................................................. 61Fourth, Be Prepared .................................................................................. 62The Fifth Element: Flexibility .................................................................. 63The Sixth “Common Sense”: Positive Engagement ................................. 64The First and Last Common Sense: Preserving Safety—and Sanity ................................................................................... 66Summary ................................................................................................... 69References ................................................................................................. 69

7 Caring for the Caregiver ........................................................................ 71Family Members of Caregivers ................................................................ 71Caregiver and Family Dynamics .............................................................. 74Some Caregiver Types and Traits ............................................................. 74Family and Caregiver Issues ..................................................................... 76Summary ................................................................................................... 78Common Sense Rules ............................................................................... 78References ................................................................................................. 79

8 Dementia Medications ............................................................................ 81General Medication Guidelines for Caregivers of Patients with Dementia ......................................................................... 82

Medication Administration ................................................................... 82Medication Information and Side Effects ............................................. 83Off-Label Usage .................................................................................... 84

Cognitive Enhancers ................................................................................. 85Cholinesterase Inhibitors ...................................................................... 86NMDA Antagonist ................................................................................ 91Off-Label Usage of Memantine for Non-Alzheimer Dementias ............................................................................................. 92Combination Therapy ........................................................................... 92

Additional Medications for Dementia ...................................................... 93When to Stop Medication for Dementia ................................................... 93Summary ................................................................................................... 94Common Sense Rules ............................................................................... 94Websites .................................................................................................... 94References ................................................................................................. 95

xviii Contents

9 Alternative Therapies in Dementia ........................................................ 97Diet ............................................................................................................ 97Nutritional and Botanical Supplements in Dementia ................................ 98

Vitamins ................................................................................................ 99Supplements .......................................................................................... 101

Stimulatory Therapies ............................................................................... 104Scheduled Voiding .................................................................................... 104Other Alternative Therapies ...................................................................... 105

Chelation Therapy ................................................................................. 105Quantitative Electroencephalogram ...................................................... 105Stem Cell Therapy ................................................................................ 105

What Can I Do to Prevent Dementia in Myself? ...................................... 106Summary ............................................................................................... 106

Common Sense Rules ............................................................................... 107Websites .................................................................................................... 107References ................................................................................................. 107

10 Alcohol and Other Substances ............................................................... 111Common Sense Approach to Alcohol Dependence in Dementia .............. 113Potential Prescription Drugs of Abuse in Dementia ................................. 114Bowel Products ......................................................................................... 117Illicit Drugs ............................................................................................... 118Medications Adverse to Memory .............................................................. 119Is a Drug Exacerbating Dementia Symptoms? ......................................... 120Aluminum ¹ Alzheimer’s........................................................................... 120Summary ................................................................................................... 120Common Sense Rules ............................................................................... 121References ................................................................................................. 121

Part III Mood and Behavior

11 Mood Issues in Dementia ........................................................................ 125Depression ................................................................................................. 125Apathy/Emotional Blunting ...................................................................... 126Anxiety ...................................................................................................... 126Irritability/Disinhibition ............................................................................ 126Treatment .................................................................................................. 127Summary ................................................................................................... 127Common Sense Rules ............................................................................... 127References ................................................................................................. 128

12 Psychosis .................................................................................................. 129Psychosis (Hallucinations and Delusions) ................................................ 129Hallucinations ........................................................................................... 129

xixContents

Delusions ................................................................................................... 129Delusions of Theft ................................................................................. 130

Addressing Psychosis ................................................................................ 130When Medication is Needed for Psychosis .............................................. 132Summary ................................................................................................... 132Common Sense Rules ............................................................................... 133References ................................................................................................. 133

13 Dealing with Problem Behaviors in Dementia ..................................... 135Behavioral Triggers ................................................................................... 135Repetitive Behavior .................................................................................. 136Agitation/Irritability/Disinhibition ............................................................ 137Aggression/Combativeness ....................................................................... 137Scratching, Picking, and Slapping ............................................................ 138Sundowning/Confusion............................................................................. 139Pacing/Excessive Walking/Abnormal Motor Behavior ............................ 139Wandering ................................................................................................. 140Problems in Unfamiliar Surroundings ...................................................... 141Disruption of Sleep–Wake Cycle .............................................................. 141Poor Appetite/Sweet Tooth ....................................................................... 142Crying/Mood Swings ................................................................................ 143Noncompliance with Medication .............................................................. 143Refusal to Bathe/Change Clothes ............................................................. 144Pharmacologic Treatment ......................................................................... 144Behavioral Interventions ........................................................................... 145Summary ................................................................................................... 147Common Sense Rules ............................................................................... 148

Part IV Additional Considerations in Dementia Care

14 Legal and Financial Matters .................................................................. 151Introduction ............................................................................................... 151Consulting an Attorney ............................................................................. 151Definitions ................................................................................................. 152

Capacity ................................................................................................ 152Competency .......................................................................................... 152Power of Attorney ................................................................................. 152Advanced Health Care Directive (Living Will) .................................... 153Guardianship and Conservatorship ....................................................... 153

Constructing Your Legal Documents ........................................................ 153Practical Considerations in Selecting Your POA .................................. 154

Capacity .................................................................................................... 155When One’s Capacity Is in Question .................................................... 155When Capacity Is Absent ...................................................................... 156

xx Contents

Guardianship ............................................................................................. 157Abuse and Neglect .................................................................................... 159Advanced Health Directives ..................................................................... 159Summary ................................................................................................... 161Common Sense Rules ............................................................................... 161Websites .................................................................................................... 162References ................................................................................................. 162

15 Selecting Level of Care ........................................................................... 163Introduction ............................................................................................... 163Assessment of Caregiving Needs in Dementia ......................................... 164

Higher Level of Care ............................................................................ 164Needs Assessment ................................................................................. 164Informal (Familial) Assessment ............................................................ 165

Caregiving Options in Dementia .............................................................. 166Family, Friends, and Neighbors ................................................................ 167Home Health ............................................................................................. 168Senior or Community Centers .................................................................. 170Adult Day Programs (Brain Therapy) ....................................................... 170Companion Care ....................................................................................... 172Respite Care .............................................................................................. 174Residential Care ........................................................................................ 176

Making Plans to Move Your Loved One .............................................. 176Independent Living ............................................................................... 176Assisted Living ..................................................................................... 177Memory-Assisted Living/Memory Care/Alzheimer’s Unit .................. 179

When Is the Time for Memory Care? ....................................................... 180Different Levels of Care/Facilities That Offer Multiple Levels of Care ........................................................................................... 182

Residential Care Home/Personal Care Home ....................................... 183Nursing Home/Skilled Nursing Facility ............................................... 184

Hospice ..................................................................................................... 185Choosing a Facility ................................................................................... 186Summary ................................................................................................... 187Common Sense Rules ............................................................................... 187Websites .................................................................................................... 188References ................................................................................................. 188

16 Looking Ahead: The Later Stages ......................................................... 189Medical Care in Advanced Dementia ....................................................... 190

Comfort Care ........................................................................................ 190Medical Procedures ............................................................................... 190Dental Care ........................................................................................... 191Medications ........................................................................................... 192Consolidated Care ................................................................................. 194

xxiContents

Emergency Room Visits and Hospitalizations ...................................... 194Resuscitation Status .............................................................................. 195Avoid Feeding Tubes ............................................................................ 197

Consider Hospice ...................................................................................... 197Letting Go, Gently .................................................................................... 198Summary ................................................................................................... 198Common Sense Rules ............................................................................... 199Websites .................................................................................................... 199References ................................................................................................. 200

Index ................................................................................................................. 201