Abstract
Dementia is a heart wrenching disease with almost 10 million new cases every year (World Health Organization, 2020). On average, individuals can expect to live 4 to 8 years following their diagnosis (Alzheimer’s Association, 2021). When taking family members and caregivers into consideration, adequate care and support seem overwhelming for everyone—the health care system, the patient, the family, and society. Given the demographics of our population, this situation will sadly escalate. Fortunately, a new book titled Making tough decisions about end-of-life care in dementia by Anne Kenny, MD, describes the experience and helps readers understand and prepare for the complicated journey.
What makes this book so powerful is its author. Dr. Anne Kenny is not only a geriatrician and palliative care physician, but she was a caregiver to her mother. Kenny summarizes it so poignantly in the preface, “The toughest decisions I ever made were about the life and death of my mother, who had lost her voice in decisions to dementia.” Kenny articulates the pain that most of us either have experienced or will experience with this debilitating disease; it is challenging, but we can prepare and face it with grace. She also educates providers on the emotions and questions expected from patients and families and considers alternative approaches to care that focus on comfort.
This book validates feelings of profound sadness and confusion during the final stages and eventual death from dementia, focusing on care and decisions. Organized as a guidebook, the reader can choose to read the book from cover to cover or select chapters based on interest or need. Readers will no doubt will pause after some paragraphs to absorb content while smiling after others because the information or story sounded so personal and familiar.
The book begins with Theresa’s story and the pain she experienced from her children’s resistance to accepting their father’s disease and eventual death. Next, we are introduced to Mary and Ted and their struggle and eventual peace shifting the medical focus from cure to comfort. Finally, we hear from the author, a primary care physician, who came to recognize and support the decisions made by a loving family while learning so much about being a supportive doctor versus a curing doctor. You will meet many others as you read this book, and by the time you finish, you will feel connected to many kindred spirits. Each chapter closes with points to remember, action plans (e.g., keeping a journal, making a list of resources), and additional reading suggestions and resources. The following provides a brief synopsis of what you can expect to learn.
Chapter 1: Understanding the End and the Need for Letting Go. This chapter includes information about the disease’s final stages and what it means physically and emotionally for caregivers. There is an overview of the Functional Stages of Dementia, including a description of the Functional Assessment Staging Tool (FAST). Given that dementia impairs judgment, changes personality, and eventually renders patients voiceless, Kenny explores what it means to make decisions for another. A palliative care approach guides the care partner’s process of letting go. The chapter concludes with decisions, or lack thereof, associated with the goals of care.
Chapter 2: Preparing to Let Go: Emotions of Caring. To let go, preparation for the emotions must occur. This process involves developing strategies to cope and knowing that different feelings will appear at different times. Kenny shares that the feelings she experienced about her mother ran the gamut from love, joy, and appreciation of the childhood memories of a storytelling, pie crust-making mother to sadness, confusion, and exhaustion. She had to face a new reality of a mother with distant stares devoid of emotion or flashes of anger, restlessness, or frustration. Loss and changed relationships are described, including resilience, gratitude, hope, joy, and dreams. However, the good emotions are flanked with the “bad” including confusion, isolation, and frustration. And not far behind there is the “ugly”—worry, guilt, anger, and resentment. In this chapter, readers are encouraged to recognize and explore a cadre of emotions.
Chapter 3: Making Decisions for Others. Advancing disease means that identifying a surrogate decision-maker is essential. Many decisions will be difficult and will run the continuum from antibiotic use to struggles with bathing. In a section called Principles of Making Decisions for Others, several ethical arguments are explored, including two basic human rights—individual well-being and individual self-determination. This chapter emphasizes preparing the caregiver for decision-making responsibilities, including the need for backup plans and safe communication strategies.
Chapter 4: Legal Aspects of Decisions. This chapter reviews the common legal situations faced by those with end-stage dementia and their families and caregivers. Topics include issues of decision-making, common insurance situations, and estate resolution. Kiplings’s story describes one family’s stress and anxiety associated with qualifying for Medicaid, while also adjusting to a new life in a long-term care facility.
Chapter 5: Complex Medical Decisions. Diseases that are incurable and progressive often result in the need for complex medical decision-making. As in prior chapters, Kenny shares what she experienced during the last month of her mother’s life. Grounded in person-centered approaches to care, decision-making is now the responsibility of a team—the surrogate decision-maker and the care providers. Many struggle with issues of risk, requiring creative approaches to providing comfort and support. A large portion of this chapter is devoted to eating, feeding, nutrition, weight loss, food intake, chewing and swallowing, and aspiration. Palliative and hospice care are introduced as approaches to care.
Chapter 6: Decision about Places of Care. Virtually everyone who has been diagnosed with dementia will need long-term care supports. While a multitude of options for care exists, most require compromises, promises, and pitfalls. The decisions are difficult as many variables are considered: family and friends, finances, stage of disease, insurance, and the ability or willingness to modify a home. And like all situations, the initial plan that appeared stable may require changes. Addressed are the options of hospice, case management, and paid caregivers.
Chapter 7: Changing Care Needs at the End of Life. Changing communication abilities are common in the later stages of dementia, and adaptations are often needed. After a lifetime of exchanging funny stories with her mom, Kenny shares that verbal communication shifted to touch—putting lotion on her hands and arms. Many of us are familiar with and scared by distressed language or vocalizations. This chapter validates fears and offers approaches to understand the potential causes of and remediation strategies for disturbing or uncomfortable communication. Patience and flexibility are encouraged as the responsibilities for daily care mount, with fear, vulnerability, and embarrassment remaining for the family member with dementia.
Chapter 8: Changing Care Needs for the Caregiver/Partner at the End of Life. Family, friends, and unpaid caregivers provide most of the care for individuals with dementia. In addition to taking many hours of time, money and emotions can be strained. This chapter explores the impact of caregiving and supportive strategies for those providing care. The chapter begins with recognizing the stress and potential health and emotional consequences of caregiving. Acknowledged is the pain associated with the loss of shared activities and shared time together, as told through Dan and Shane’s story, a father and son’s journey with dementia. The chapter closes with tips for day-to-day coping, stress relief, and self-care.
Chapter 9: Active Dying. This chapter was thoughtful, tearful, helpful, and comforting. How I wish I had read this chapter years ago. Kenny describes the signs and symptoms that are commonly observed in the finals stages of life and how they can change in the final hours before death. The discussion gently walks the reader through typical treatments offered, why they are offered, and the potential impact on the dying person. Through the use of stories and examples, we witness coping and joy. Suggestions for how to sit at the bedside are provided. For those choosing to die at home, expectations are shared.
Chapter 10: Afterloss and Adjustment. Time, tenderness, and honoring grief are essential as the caregiver transitions away from the provider role. The ability to recognize and celebrate grief is part of the healing process. Developing resilience at the time of death is explored, as is preparation. Blake and Poppy’s story describe the unrelenting grief of a son, while Molly’s story ends with a newfound purpose in life. Grief takes many forms, as does the healing process. This chapter validates all those responses.
Overall, this is a thoughtful, important, helpful, and well-written book. Everyone’s journey with dementia includes ups and downs. This book is an important contribution that helps readers understand and prepare for the disease and eventual death. As such, it is an ideal read for both new and wizened caregivers. The book is an excellent complementary or supplemental text for students taking courses in nursing, social work, and other allied health programs. Finally, this book should be read by every health care provider who works with patients and caregivers experiencing dementia. Through personal stories, readers are reminded of the heartbreak, pain, and joy families experience outside the clinical setting.