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      Inside the Dementia
     Epidemic: A Daughter's

      On Wall Street Journal best seller
      list (May 1, 2015)


    of's 2014 Top Alzheimer's Books for Caregivers

    Winner of the Memoir category of the 2013 Next Generation Indie Book Awards

    Winner of a Silver Medal in the Health/Medical category of the 2013 Readers' Favorite International Book Awards (and finalist in the Memoir category)

    Finalist, 2013 Eric Hoffer Book Award for Excellence in Publishing

    Winner of an Honorable Mention in the Life Stories category of the 20th Annual Writer’s Digest Book Awards 

    Finalist, 2013 Indie Excellence Book Awards

    Finalist, 2013 Santa Fe Writer's Project Literary Awards Program, Non-fiction category





    Inside the Dementia Epidemic: A Daughter's Memoir shares the lessons I learned over 8 years of caregiving at home and in a range of dementia care facilities. I describe not only what I learned about navigating the system, but how I learned to see Alzheimer's disease differently—not as a "long good-bye," as it's often called, but as a "long hello." Through caregiving, my challenging relationship with my mother was transformed, and I learned to enjoy and nurture her spirit through the last stages of dementia.

    Appendixes share facts about dementia that I wish I had known years ago, such as how to get a diagnosis of Alzheimer's disease; what medications are approved to lessen the symptoms of Alzheimer's disease; lesser-known risk factors for dementia; and possible antidotes. I include my favorite resources for caregivers, my source notes, and an index.

    Inside the Dementia Epidemic: A Daughter's Memoir is available in paperback and hardcover, as an e-book for Apple devices, the Nook, and Kindle, and on Kobo.

    Reviews and Testimonials

    Order the Book



    The photo at the very top of this page is of my mother, Judy, in 2010, smiling up at Suzanne, a massage therapist I hired who specializes in bodywork for elders.  Suzanne massaged her hands, arms, upper back and legs, talked to her, and played music for her.  [photo by Jason Kates van Staveren]

    Right: My mother at her 75th birthday party in 2007, three years after she could no longer live alone. A few days after this picture was taken she fell, fractured her pelvis and needed more care than her assisted living facility could provide. I had to quickly research alternatives.

    In 1996, Judy and her grandson, Andrew, age 1, on the shale beach outside the cottage on the lake in Upstate New York where she lived by herself for 25 years. It's his first visit, and she's showing him the "big lake water" and how to draw on the flat rocks with pencil-shaped pieces of shale. Her worrisome behavior starts around this time, but as her daughter I don't realize what is going on until much, much later.

    Above: My mother, age 74, and I at the cottage in 2006 with her old miniature Schnauzer, Trinka. I can see the stress of those early caregiving years in my face and in my extra weight. Little did I know how much I would learn over the coming years.








    Above: Judy, age 79, and me in early 2012 at the nursing home Judy moved into in 2010. Mom lived with advanced Alzheimer's disease and vascular dementia until she passed away in late 2012, but until the end she often shared her lovely smile. 


    Join the fight to stop Alzheimer's by 2020:



    For caregiver support and resources, visit the Caregiver Action Network. (Membership is free if you are a current family caregiver):


        The Purple Angel--a symbol of hope and dementia awareness

    Entries in end of life (1)



    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.