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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


    Fear of Dementia Leads Some to Ponder Severe Advance Directives

    Spoon-feeding Mom blueberry pie in her nursing homeWould my mother, Judy, who died two years ago with advanced dementia, have wanted me to deny her food and liquid when she reached a certain stage of dementia? Would she have thought that her life was no longer worth living? Paula Span of the New York Times' New Old Age blog today explores the idea that people who fear developing Alzheimer's disease or another dementia should be able to create advance directives for when they are no longer able to make decisions for themselves--directives that would instruct their caregivers to withhold food and water when the person reaches a certain level of disability--say, when they no longer recognize their loved ones, or they cannot feed themselves.

    The last two years of my mother's life, I wasn't sure she knew I was her daughter. She could not speak more than an occasional "yes" or "no." She could not walk, or feed herself. She wore Depends. But her smile was stunning; she loved people. And I could tell that she loved me. She seemed to know that I was someone very special to her. If my mother had written an advance directive about withholding nourishment when her quality of life declined to a certain level, how could I have honored her wishes? Quality of life is slippery. What would never suffice one day, one year, is more than enough the next. And even a person living with advanced dementia is still "in there" sometimes, in some moments. A person with dementia can still enjoy simple pleasures--and even share affection with loved ones. Yes, they are no longer the competent person they once were, but does that mean they would really want to leave the earth, to be denied sustenance?

    In some ways it's cruel to ask a loved one to decide when and if you would want nourishment withheld. All we can do is look in your eyes and hold your hand. And if you are hungry, feed you.

    I would be interested to learn in the future if anyone of sound mind succeeds in ending their life on their own terms once they develop advanced dementia. If one can die well by getting one's nourishment withheld, and it does not traumatize one's loved ones, I'm all for it. Certainly no one wants to be bed-ridden and catatonic in the very last stage of Alzheimer's disease. But the danger, I believe, is that people overlook the fact that people in earlier stages of dementia--even when one cannot speak or feed oneself--are very much alive and capable of enjoying the moment.

    I encourage you to read this thought-provoking article in the Times: Complexities of Choosing an End Game for Dementia

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