10 Must-Read Books to Guide and Support the Dementia Family Caregiver
November is National Family Caregivers Month. This year’s theme is “Caregiving Around the Clock.” November is also National Alzheimer’s Awareness Month. As anyone who has been or is a caregiver knows, caregiving is a 24/7 commitment and journey.
In the spirit of recognizing, supporting and honoring families providing care for an older loved one, particularly someone living with Alzheimer’s or a related dementia, I want to share some of my favorite books on the subject. I’ve witnessed these books changing lives, relationships, and perspectives in profound and unexpected ways, often bringing comfort, joy, and deeper meaning to care partnering.
Here are 10 reads for family caregivers seeking answers, guidance, support and peace of mind in providing support for a loved one living with dementia. Many of these books have stood the test of time; are in their second, third, even fifth printing; and serve as resources and guides that you will find yourself referring to time after time. These are also great resources for professionals working in the aging field, whether in healthcare, housing, or support services.
The practical, day-to-day
An Unintended Journey: A Caregiver’s Guide to Dementia by Janet Yagoda-Shagam
Janet takes her own experiences as a caregiver for her mother, who had dementia, and her background as an experienced medical and science writer, to cut through the clutter and provide an organized, thoughtful and thorough guide. An Unintended Journey is rich in resources, stories, and well-researched, expert-verified content. And most important, it’s accessible. FAQs, worksheets, glossary of terms, an appendix and references for further readings round out this comprehensive, valuable resource.
Speaking Dementia: Making Sense of It All by Frena Gray-Davidson
Frena’s down-to-earth, practical approach to dementia care will calm your heart and help you to truly enjoy this journey. Never one to gloss over the difficulties and challenges, Frena speaks truth to the realities, but helps the reader to grow their “caregiver heart” in a loving, insightful and graceful way. Let Frena’s 20+ years of caregiving and support group facilitation serve as your wise mentor and caring friend. Speaking Dementia also has a wonderful Facebook page you may enjoy following for daily tidbits, tips, and caregiver encouragement.
Caresharing: A Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disability by Marty Richards
In Caresharing, Marty Richards, a clinical social worker and retired affiliate assistant professor at the University of Washington School of Social Work, presents a rebalanced approach to caregiving, moving the reader from independent caregiving to interdependence. In this way, the caregiving is truly a care partnership, drawing on the strengths and resources of each partner — be it spouses, adult child and aging parent, or good friends — and evolving into a reciprocal relationship. Caresharing helps us to make the journey a two-way exchange, a “dance of sharing care.”
I’m Still Here: A New Philosophy of Alzheimer’s Care by John Zeisel
I recently shared this book with a friend whose husband is in the end stages of Pick’s Disease, a frontal temporal dementia. It completely changed how she engages with him, focusing on what remains, rather than what has been lost. It’s brought her greater peace and joy, and a new way to connect with her husband through the music he loves. In this book, Ziesel shares a refreshing philosophy of treating Alzheimer’s non-pharmacologically by focusing on the mind’s strengths. This guidebook demonstrates the possibility and benefits of connecting with persons living with dementia through their abilities, such as understanding music, art, facial expressions, and touch.
Creating Moments of Joy Along the Alzheimer’s Journey by Jolene Brackey
In its fifth edition, this precious book is a best seller for good reason: it works! Brackey’s vision for this book is “that we look beyond the challenges of Alzheimer’s disease to focus more of our energies on creating moments of joy. When people have short-term memory loss, their lives are made up of moments.” Creating Moments of Joy is filled with practical tips and wonderful ideas, peppered with hope, humor, and encouragement.
Decision making and clinical perspectives
The Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can’t by Viki Kind
Winner of the 2011 Caregiver Friendly Award from Today’s Caregiver magazine, Viki Kind, a bioethicist and former family caregiver, offers tools and techniques that will cut through the fear and minimize the stress of health care decision making on behalf of those who can’t. Kind offers adaptable, insightful tools in a simple step-by-step process for making informed decisions. As one reviewer, Whitney Scott, Booklist magazine, reflects: “Kind’s guide encourages careful, methodical, and informed thought, and to that end, it contains flowcharts, case studies, personal anecdotes, and grid-like frameworks for decision making organized by useful categories.”
Dementia Beyond Disease: Enhancing Well-Being by G. Allen Power, MD
Want to improve the lives of people living with dementia and their partners in care? Then this book is a must-read! Dr. Power takes a strengths-based approach, reframing how we care for and support people living with dementia by focusing on the seven domains of well-being— Identity, Connectedness, Security, Autonomy, Meaning, Growth, and Joy.
Memoirs—reminders that you are not alone in this journey
Can’t We Talk About Something More Pleasant? by Roz Chast
If you are a fan of The New Yorker‘s cartoons, you are likely a fan of Roz Chast. In this graphic memoir, Chast captures the final years of her parents’ lives, who both lived well into their 90s. The title comes from her parents’ refusal to discuss their aging and the challenges that came with it. Chast, an only child, approaches the topic with humor, sometimes dark, and honesty, along with the common emotions of grief and guilt. This memoir is an opportunity to laugh at ourselves while we process our parents’ as well as our own aging. You will love it, I promise!
The Long Hello: Memory, My Mother and Me by Cathie Borrie
This pleasantly lyrical and poetic book is exceptionally refreshing and different from any other dementia memoir. Cathie weaves her unique family history and personal stories with her seven years as her mother’s caregiver. She’s also honest about her struggles to balance her own life and needs with that of her mother. You will be both encouraged and changed in a beautiful way for having read this lovely book.
Her Beautiful Brain by Ann Hedreen
Hedreen is a Seattle-based filmmaker, writer, and teacher. In Her Beautiful Brain, Hedreen tells the story of her mom, a brilliant, beautiful woman who is experiencing memory issues in her late 50s. At the same time, Hedreen became a mom for the first time. She has done an elegant job of capturing the past, present and future of a complicated journey. If you are in the midst of caregiving for a loved one with dementia, you’ll find comfort in her insights and wisdom. In addition, we love to support our local writers!
Bonus book—for those living with Alzheimer’s or a related dementia
Living Your Best With Early Stage Alzheimer’s: An Essential Guide by Lisa Snyder
Snyder is a clinical social worker and Director of the Quality of Life Programs at the University of California San Diego’s Shiley-Marcos Alzheimer’s Disease Research Center and internationally recognized for her work in issues of early-stage Alzheimer’s. This practical guide is a balm for those coping with a dementia diagnosis, managing symptoms, searching for renewed purpose, planning for the future, maintaining relationships, even participating in research, and much more. This working guide helps the person living with Alzheimer’s feel empowered to move forward in life in light of this challenging diagnosis.
Want more titles? To check out a book list of reading recommendations from Aging Wisdom staff, click here.
Contributor Keri Pollock directs marketing and communications for Aging Wisdom, an Aging Life Care™ practice (geriatric care management) serving King and south Snohomish Counties. Pollock serves on the Age-Friendly Seattle Task Force, on the board of directors for Elderwise, the Creative Aging Programs Advisory Committee at the Frye Art Museum, and on the Alzheimer’s Association Discovery Conference planning committee.
This article originally appeared on AgeWise King County (November 2017)