“I want to provide the best care possible. The suffering has gone on for a long time, and I want to be sure the end stage is as comfortable as possible.” This common sentiment is expressed by both health care professionals responsible for caring for frail elders experiencing the later stages of dementia and family members trying to ensure the most compassionate care for their loved ones. Health care providers and family members often struggle with painful decisions when confronting the inevitable while providing love, compassion, and care. Modern medicine may offer seemingly promising treatments, but eventually, the impact of Alzheimer’s disease and other causes of dementia can cause profound deterioration in the patient’s quality of life. The focus must eventually shift to compassionate end-of-life care. This guidebook reflects Dr. Gordon’s extensive experience with health care professionals and families struggling with these poignant and difficult decisions. “… families will learn much about helping patients with dementia, but so too will physicians and other caregivers. Michael Gordon’s humanity shines through every page, and, when combined with his medical expertise, the result is a guide which is both truly thoughtful and practically useful.” —Professor Arthur Schafer, Director, Centre for Professional and Applied Ethics, University of Manitoba “Dr. Gordon is truly a healer whose experience as a geriatrician provides a road map for all of us who want to provide care, respect, and love for people diagnosed with dementia.” —Steven R. Sabat, PhD, Professor, Department of Psychology, Georgetown University

Late-Stage Dementia

Promoting Comfort, Compassion, and CareBy Michael Gordon Natalie Baker

iUniverse, Inc.

Copyright © 2011 Michael Gordon, MD, with Natalie Baker
All right reserved.
ISBN: 978-1-4620-2764-4

Contents

Acknowledgements.......................................................................................xiiiPart One...............................................................................................1Introduction...........................................................................................3Why Palliative Care?...................................................................................14Part Two...............................................................................................23Decision-Making and Ethical Decisions..................................................................25Part Three.............................................................................................43Comfort Care in Context................................................................................45Caring for the Caregiver...............................................................................49A Sense of Autonomy....................................................................................57Avoiding and Dealing with Family Conflict..............................................................62Appendix A: Symptom Management: Maintaining Comfort....................................................67Symptom................................................................................................71Appendix B: Useful Scales, Assesment Tools, and Medications for Symptom Management.....................119Glossary of Commonly Used Ethical Terms................................................................143References and Further Reading.........................................................................149Resources..............................................................................................153Index..................................................................................................155

Chapter One

Introduction

Why this guide?

Many highly industrialized countries face a rapidly aging population. According to Statistics Canada, one in eight Canadians in 2001 was aged 65 years or over, and by 2026, one Canadian in five will have reached age 65. It is imperative then that age-related illness and end-of-life care are more closely and openly discussed and understood among health care professionals and in the public forum.

In recent years, there has been an increased knowledge and awareness of Alzheimer's disease and other causes of dementia by health care professionals and the general public. This is in part thanks to the efforts of organizations, such as the Alzheimer Society of Canada and the Alzheimer Association in the United States, that are committed to addressing the challenges associated with the care of those living with dementia. This is also due to the development and marketing of medications that can ameliorate symptoms and affect the course of diseases that cause dementia. Even if these initiatives have been motivated partially by the pharmaceutical industry's financial interests, ultimately it has meant that it is now part of the normal discourse to identify individuals with cognitive impairment and to focus on interventions that might be of value.

At first it may sound a bit counterintuitive to frame the more recent spotlight on end-of-life issues in a positive light. However, an aging population and the accompanying abundance of age-related issues translates into the reality that many more people are living longer than ever before. There was a time when there wasn't a significant need for discussions regarding end-of-life issues or for guidelines for caregivers and health care professionals. This is because, in the past, individuals would have a much steeper end-of-life trajectory after falling ill in old age. Now, thanks to significant medical advances, there is an average length of four and a half years spent by patients in a long-term care home before they die. Many older people die at home after long and disabling illnesses. In order to remain at home during this last period of life, there is often the need for help from family members, friends, neighbors, and home care services. Accordingly, this means that there are new end-of-life challenges and procedures that must be discussed, debated, and hopefully resolved. This is the starting point of this guide.

Dementia: A Brief Overview

Dementia is a general term that is used to describe a condition that affects primarily older individuals whose memory, judgment, and other cognitive functions decline; frequently this is accompanied by abnormal behavior, such as agitation and suspiciousness. Dementia has many causes and thus many variations in both the way symptoms occur and in the impact on cognitive function and emotional state.

Alzheimer's disease is the leading form of dementia. It currently represents 63 percent of all dementias. What is known as vascular, or multi-infarct, dementia accounts for about 20 percent of all cases. Both forms are caused by the death of cells, which, in the case of the vascular component of the disease, is due to blockages of the many small blood vessels in the brain. This results in the brain cells being deprived of oxygen and essential nutrients. Both types of dementia can occur in isolation or in combination—a common occurrence, particularly for those who are getting on in their years.

Much of the effort during the past few years has been on understanding the mechanisms of disease that cause the different kinds of dementia and on what might be done to decrease the risk and possibly treat the various symptoms. We have come to recognize that although there are likely different categories of dementia, there is a good deal of overlap between the various types of dementia that affect most individuals.

There is an overlap both in terms of the risk factors and the usual steps suggested in order to mitigate these risk factors. Many of these steps are lifestyle related and include: the cessation of smoking, regular exercise, and proper diet, plus the control of hypertension (high blood pressure), hyperlipidemia (elevated or abnormal blood fats), and diabetes mellitus.

For other less common causes of dementia, there are some interventions that may be useful in specific cases, but for the vast majority of those who experience a dementia-causing illness, the approach noted above is fairly consistent. In addition, many researchers and scientists argue that there are other steps that individuals can take to decrease the risk of the disease or perhaps slow the progression of it. These may include challenging brain function through brain exercises such as crossword puzzles and brain teasers, as well as avoiding head injury, for example from sports accidents. Whether the use of psychoactive substances such as recreational drugs may play a role is not clear, but most physicians would cautiously suggest that individuals avoid the use of substances for this and other health care-related reasons. For example, alcohol abuse has long been known to cause injury to the brain, and prolonged use can result in dementia. In those with the propensity to other types of dementia, alcohol can be an additive factor in its causation.

Physicians typically use a control or curative model when dealing with many illnesses, and this tends to be the same when approaching...