Books About Changing Elder Care
Nursing homes and assisted living facilities are no longer always deadening, depressing places that we should avoid at all cost, and home care, though extraordinarily stressful at times for family caregivers, need not always be overwhelming.
Over the past fifteen years there has been a major shift in the "culture" of elder care. Here are some of my favorite books on that culture shift:
Dementia, Friendship and Flourishing Communities, by Susan H. and John T. McFadden (paperback 2014). Targeted to friends. How do you continue a friendship when your friend no longer remembers your shared history or your name? Read my review here.
Mindfulness-Based Elder Care: A CAM Model for Frail Elders and Their Caregivers, by Lucia McBee, LCSW, MPH, 2008. "Mindfulness" involves being present in each moment, and moving toward compassion for yourself and others. Mindfulness practices include meditation, yoga, and breathing exercises, among others. With over 25 years of experience as a geriatric social worker and mindfulness-based stress reduction practitioner, McBee, LCSW, MPH, walks the reader through specific "mindfulness” exercises for each of the book’s three intended audiences: elders, family caregivers, and professional caregivers. She weaves these mindfulness exercises, and background information about the history of mindfulness-based elder care and “culture change” movements in elder care, with short anecdotes about elders and caregivers who have tried mindfulness groups. She includes some excellent chapters on mindfulness exercises for people with mild to severe dementia; yoga exercises for people who are wheelchair- or bed-bound; and helpful tips such as “mini relaxation exercises” for when you’re standing in line at the check-out counter or stuck in traffic.
Dancing with Rose: Finding Life in the Land of Alzheimer's, by Lauren Kessler, 2007. (The 2008 paperback is called Finding Life in the Land of Alzheimer's: One Daughter's Hopeful Story.) An immersion journalist and author of several books, Kessler regrets not helping her mother more when her mother had dementia years ago, and takes a minimum-wage job for three months as a resident assistant at a "memory care" assisted living facility. Similar to the scenes I describe in my book-in-progress, Kessler discovers that people living with dementia can still retain the essence of themselve, enjoy the companionship of others, and respond to the pleasures of life.
Love, Loss, and Laughter: Seeing Alzheimer's Differently, by Cathy Stein Greenblat, Ph.D., sociologist and photographer, 2012. Greenblat challenges the typical perception of people with Alzheimer’s as “empty shells,” lost to themselves and others.
Alive with Alzheimer's, by Cathy Stein Greenblat, Ph.D., 2004. A sociologist and photographer, Greenblat immerses herself in life at a Silverado Senior Living, "memory care" home for people with dementia that reminds me of the memory care facility where my mother lived for two years. Greenblat's 85 photographs show that life continues after a diagnosis of dementia. (See the photos, right.)
My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones, by Dennis McCullough, M.D., 2008. How to help those you love live well in their final years and avoid unnecessary medical interventions. "Slow Medicine," he says, "embraces the unsung work of daily attention that is the greatest and firmest foundation for longevity and quality of life...This is not a plan for getting ready to die; it is a plan for understanding, for caring, and for living well in the time that is left."
Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home: The Eden Alternative in Action, by William H. Thomas, M.D., 1996. An Eden Alternative nursing home is designed, from the physical environment to programs to staffing, to combat what they call the “three plagues” of institutional care: loneliness, helplessness and boredom. It's a “human habitat” filled with life—plants, animals, frequent visits by children, and lots of impromptu interactions with the staff.
Dementia Beyond Drugs: Changing the Culture of Care, by G. Allen Power, M.D., 2010. When I saw Dr. Power speak at a gerontology conference he said that 40% of people living with dementia in nursing homes are on antipsychotic medication, when what they need is to be treated differently. He says that if we put people in environments where they can't succeed—where there are few activities and little personal attention—their behavior will suffer. His book encourages us to think of dementia not in the "traditional" way as tragic, irreversible, costly and burdensome, but as a shift in the way a person perceives the world, a state in which learning can and does still occur, and in which the person continues to have the potential for life and growth. One of my favorite quotes from his speech is "If I say that a woman with dementia is confused, it's me who's confused. I'm confused because I don't understand her."
The Silverado Story: A Memory-Care Culture Where Love is Greater Than Fear, by Loren Shook and Stephen Winner, 2010.
What Are Old People For?: How Elders Will Save the World, by William H. Thomas, M.D., 2007.