Late-Stage Dementia: Promoting Comfort, Compassion, and Care

Contents

Acknowledgements to The Updated 2023 Version

Acknowledgements (1st edition-2011)

Introduction to The Revised Version (2023)

PART ONE

Introduction

Why this guide?

Dementia: A Brief Overview

Consider the Case of Mary

Dr. Gordon Discusses

Dementia: Denial and Disbelief

Dementia: A Terminal Disease?

Dr. Gordon Discusses

Summary

Why Palliative Care?

The Clinical Course of Dementia

Dr. Gordon Discusses

Defining Palliative Care

Dr. Gordon Discusses

Summary

PART TWO

Decision-Making And Ethical Decisions

Advanced Care Planning

An Ethical Approach

Communication

Dr. Gordon Discusses

Informed Consent

Information Disclosure

Capacity

Substitute Decision-making

Discussing Patient History

Decision-Making

Dr. Gordon Discusses

Confidentiality, Privacy, and Respectfulness

Nutrition and Hydration

Dr. Gordon Discusses

Pain and Other Symptoms

Withholding or Stopping Life-Sustaining Treatments

Dealing with Conflict

Summary

PART THREE

Comfort Care In Context

End of Life through Different Cultural Lenses

Dr. Gordon Discusses

Cultural Influence

Summary

Caring For The Caregiver

Emotional Distress

Dr. Gordon Discusses

The Process of Caregiving

Loss and Grief

Dr. Gordon Discusses

Transcendence: Different Ways Of Connecting

Coping with Grief

Summary

A Sense Of Autonomy

Taking the Perspective of the Patient

1.  Affirm the value of the person and their life, regardless of degree of impairment.

2.  Treat everyone as an individual.

3.  Adopt the perspective of the person with dementia.

4.  Provide a supportive social environment.

Dr. Gordon Discusses

A Call for Education

Summary

Avoiding And Dealing With Family Conflict

Despite Best Efforts

Dr. Gordon Discusses

Summary

Assisted Suicide And Its Place Within Palliative Care Philosophy

PART FOUR 4

Appendix A: Symptom Management: Maintaining Comfort

Managing Symptoms

Assessing Symptoms

Symptoms

Depression

Bereavement

Sadness

Clinical Depression

Anxiety

Weight Loss/Anorexia/Cachexia

Constipation

Nausea/Vomiting

Delirium

Agitation/restlessness

Dyspnea/Breathlessness/Respiratory Problems

Dysphagia/Oral Complications

Skin Breakdown/Chronic Wounds

Dehydration

Pain (Various)

Appendix B: Useful Scales, Assessment Tools, and Medications for Symptom Management

Useful Scales and Assesment Tools

Pain and Symptom Assessment Scales

Glossary of Commonly Used Ethical Terms

Resources

References

Conclusion

About The Author

Acknowledgements to

The Updated 2023 Version

For this revised version I have included the updated symptom management section which is intended to be used as a guide to help clinicians who care for the frail elderly. This revised section is based, with many modifications and with more current information, on the Baycrest Geriatric Health Care System Palliative Care Handbook, 2015, Toronto, by Grossman D, Kirstein A, Burke G, Senderovich H, Perri G, Buchman D, Buchman S, Gordon M, which was based on the Baycrest Geriatric Health Care System Palliative Care Handbook, 2011, Toronto, by Grossman D, Kirstein A, Buchman D, Buchman S, Gordon M, which drew on information from Librach, L.S & Squires, B.P. (1997). The Pain Manual: Principles and Issues in Cancer Pain Management, by Pegasus Healthcare International, Toronto as well as many current publications. I also want to acknowledge and thank Drs. Barbara Liu, Shelley Sternberg and Sandy Buchman who read the manuscript and provided comments.

I want extend again my thanks to all the staff and volunteers of the Baycrest palliative care unit and Baycrest Health Science Center. My special gratitude goes to the many patients and families who continue to inspire me to find along with my colleagues the best ways possible to meet their needs and desire for comfort, compassion and care as they face the final period of their life.

Toronto 2023

Acknowledgements (1st edition-2011)

A great deal of work and support went into the production of this guide. From the time of the initial proposal to the Innovation Fund organized by the Ontario Ministry of Health and Long-Term Care, I received encouragement in support from the Alzheimer Society of Canada through its office in Toronto. To the staff in that office, I am indebted for their faith in me. During the development of the concepts that became the foundation of the guide, the help of Dr. Daphna Grossman of the Palliative Care Program at Baycrest Geriatric Health Care System and Dr. Marcia Sokolowski, ethicist at Baycrest, were very helpful and supportive in the evolution of the guide. I also wish to thank Leslie Iancovitz, Julie Grossman, Mary McDiarmid, and Anne Kirstein of Baycrest; Mary Schulz, Debbie Benczkowski, and Scott Dudgeon of the Alzheimer Society of Canada; Dr. Lawrence Librach of the Temmy Latner Center for Palliative Care, Toronto; Professor Steven Sabat of Georgetown University; Dr. Susan Mitchell of Harvard University; and Trish Staples for the time and effort that they took to read the manuscript and make suggestions for its improvement. I especially wish to thank Steve Cowan from the Baycrest print shop for assisting in preparing the poster used to present the guide at the Innovation Fund Showcase, as well as the draft copies of the formatted manuscript.

I want to particularly thank Natalie Baker, the project manager of this guide, who undertook to read everything imaginable on the subject and who collated all the information and molded it into the manuscript that became the basis of the guide. She was an endless source of inspiration and good humor as she brought together all the information into a cohesive form and interwove my personal anecdotes into the content of the text.

I am indebted to the authors of the Baycrest Palliative Care Manual, who created this resource for the physicians who work at Baycrest and are confronted with medication and other care challenges of those admitted to the palliative care program. The primary author of that manual is Daniel Buchman, who was a pleasure to work with, both on that and on other summer projects that he undertook while still a student. I also want to thank the editors and staff of the Canadian Jewish News for allowing me to write a monthly column, The Senior Side of Life, directed to seniors and their families, from which many excerpts are used in this guide.

Lastly, I want to thank the many patients and families I have worked with over the years for being the source of my continual inspiration, motivation, and passion to help them achieve their goals.

Introduction to

The Revised Version (2023)

Since the first edition of this book there have been many changes in the recognition and care of those living with dementia. More of the risk factors for dementia have been recognized. Efforts are being taken by governments and public health agencies to promote healthier life styles in the belief, based on substantial evidence that such efforts might decrease the risk of developing those conditions that lead to cognitive impairment and dementia. Research has progressed in the identification of predictive markers for dementia although these have not yet been translated on a wide scale into practice that results in meaningful outcomes for the individuals and populations at risk. There are enormous efforts going into research to determine new therapies that might decrease the risk of developing or slow the progress of the diseases causing dementia once they are already diagnosed

In the meanwhile, as all this is going on, there are still countless individuals that are living with dementia. They and their families often struggle to cope with the many physical and emotional challenges, that are must be addressed in order to provide and achieve the most humane care possible. The principles that propelled me to write the first edition of this book continue to exist. There remains enormous need for those living with dementia that are in or entering the later stages or end-of-life period of their life deserve the best care possible. It is our duty as health care providers and those who make public and health care policy to assure that patients and their families will receive the most comforting and compassionate care possible. If this 2nd revised version of the book achieves that goal, I will have fulfilled my purpose in revising it.

PART 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, which is just around the corner, one Canadian in five will have reached age 65. From 2016 to 2021, the number of Canadians age 65 and older rose 18.3 per cent to seven million The number of Canadians aged 85 and older rose almost 12 per cent from the time of the last census, while Canadians aged over 100 rose by more than 15 per cent. 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 include medications and non-medication strategies 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.

There have been novel approaches to remaining in the community rather than looking to late stage institutional care. 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 the first edition of this guide and continues to be so in this second edition.

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 one’s emotional state.

Alzheimer’s disease is the leading form of dementia. It currently represents more than sixty percent of all dementias. What is known as vascular, or multi-infarct, dementia accounts for about twenty 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. There is controversy whether one diet is more effective than another. More evidence points to the damage done for example by the increase in highly processed foods in the development of vascular changes to the brain and elsewhere. One of the social problems in the developed world is that at the bottom of the socio-economic ladder, processed food is often cheaper than the alternatives. The evidence of the benefits of life-style modifications and improvements in outcomes has grown substantially in the past few years which provides hope to those who are able to adopt apparently beneficial life-styles at an early age, but even later on in life there may still be substantial benefits.

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