Nearly 500,000 individuals are diagnosed with dementia every year. Year after year. As stunning as that figure is, it does not take into account the family members and caregivers who are subsequently affected by each diagnosis. When they are included, the numbers rise to an even more incredible level.
What this means in our society is a rapidly ballooning population of people faced with painful scenarios and the need to make vital end-of-life decisions for those who no longer can—a role for which most are largely unprepared. Sadness, confusion, guilt, anger, and physical and mental exhaustion become the norm for these families as the disease enters its final stage. The toughest decisions I ever made were about the life and death of my mother, who had lost her voice in decisions to dementia. But, I was one of the lucky ones: My 30 years as a doctor specializing in the care of older people and end-of-life care had prepared me to face these decisions. Yet, even with that advantage, I struggled. And my siblings struggled. The challenges that dementia and end-of-life decisions present can be – and usually are – overwhelming. When I looked for a resource to help my siblings, I found none. My personal experience compelled me to fuse my clinical knowledge, with everything I learned helping to care for my mother, into a book to help others. My family’s experiences guided me in what the book should include. As I reflected, I also realized the growth, hope, lessons, and transformation that occurred during living with a beautiful woman with dementia. While the sometimes-overwhelming nature of caregiving sent me to the bookstore looking for a guide, when writing the guide, I wanted to acknowledge the experience, strength, hope, and love that also accompanied the journey.
This book is laid out as a guidebook. Each chapter includes stories of families I’ve met and worked with during the last 30 years. These stories are meant to illustrate a common issue, concern or situation that occurs in late-stage dementia, and I hope that by seeing how others have met these challenges, others will see a way forward. This guidebook deals with the emotional aspects of being a surrogate decision-maker, communication with others at a challenging time of life, and the all-encompassing grief experienced in the process. Additionally, it provides information on dementia, its progression and the potential change in goals of care that occur as the disease moves from a chronic to a terminal stage. Finally, the book provides a view of the joy and fulfillment that can accompany assisting in the dignified death of someone you care for.
Anne Kenny, MD, author of Making Tough Decisions about End-of-Life Care in Dementia, published in 2018 by Johns Hopkins University Press, is a Professor of Medicine with specialty training and board certification in Geriatric Medicine, and Palliative and Hospice Care. She has been a practicing physician for over 30 years and has been recognized by her peers as a “Top Doc” in Geriatric Medicine. She has been honored with a Brookdale National Fellow and the prestigious Paul Beeson Physician Faculty Scholar awards. Dr. Kenny has worked clinically as a geriatrician in nursing homes, assisted living, rehabilitation, and clinical outpatient settings. Dr. Kenny has found joy in her work with individuals and their families managing issues related to the diagnosis of dementia. Her experience in partnering in the care of these families touched close to home when her own mother was diagnosed with dementia. Dr. Kenny joined with her mother and her brothers and sister to provide the best care for her mother during the early and middle years following her mother’s diagnosis. Her expertise, coupled with her mother’s playful spirit and her sibling’s openness, support, intelligence, and compassion, allowed for the highest functioning and independence of her mother for several years. Dr. Kenny’s expertise and experience in inpatient and outpatient Palliative and Hospice care were called on when her mother reached the final stages of living with dementia. The Kenny family worked together for their mother’s graceful exit from this planet.
In addition to her clinical practice, Dr. Kenny lectures to both healthcare professionals and the public on aging-related issues including navigating dementia, exercise, nutrition, hormone therapy, death and dying, and frailty. She is an educator of medicine and research skills. She has over 100 scientific publications and presentations focused on improving the care and functioning of older adults.
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