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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 cognitive decline (1)


    Sample: Ch. 2: "The Decision"

    A month before my mother drove into the ditch across from her doctor’s office, she had called him in a panic. She couldn’t remember if she’d recorded a certain check. Dr. Gavin and I both knew how meticulous she was with her checkbook. This incident upset her so much that she called me, too, which was also unlike her.

    On the phone she told me that the previous night she had lost her bearing outside in the dark and almost stepped off a cliff. "And two weeks before that," she’d said, "I fell on my way down the hill from the car. I wasn’t hurt, but I’m scared. What if I fall again, Martha? What if I get confused again and walk off that cliff?" She confessed her concerns all at once, as if she could no longer hide them from me.

    It was clear my mother could no longer live alone at the cottage. It was simply too dangerous.

    What would be the alternative? Should I start commuting to care for her on a regular basis? I lived almost two hours away, round-trip. I worked. I had two young children. If Mom continued to live at the cottage, she would need someone to shop, cook all her meals for her, and clean. The cottage was five miles from the nearest town, which was too small to offer transportation services for the elderly, and few neighbors lived on the lake in the off-season to help drive her to appointments.

    I thought of the access road down the cliff to the cottages. It was blasted perhaps a hundred years ago, with the narrow passage hugging the cliff at a forty-five-degree angle, and a hairpin curve halfway down the steep descent. Once in a while, the only other year-round neighbor plowed the road with his four-wheel-drive; but even then, most cars couldn’t make it up and down the road without threatening to slip sideways off the cliff. My mother had to park her car on a precipice five hundred feet up the road, and clamber up and down with her packages.

    How had my mother managed this? Like a Nordic explorer, she wore ice cleats on her boots for traction and held a ski pole in her hand for balance. She baby-stepped up the hill to her car, then carried her groceries and library books back down in a red backpack. When she was younger, she pulled an improvised sled, a blue, plastic barrel cut in half with a rope attached.

    For her to continue to travel to and from her cottage would tempt a deadly accident. What could I do?

    I discarded the idea of commuting to drive her to and fro, or hiring aides to do so. Even at that starting point, I could see the potential problems with weather and no-show aides.

    Maybe she could move in with me, my husband Ben, and our children? I assumed that it would be easier for me, less stressful, if she lived in our home where I could include her in our meals, help plan her activities, and attend to her other needs without driving. I imagined that having my mother live with us would be the easiest way for me to help her.

    My family lives in an unusual, planned community, a development of more than thirty families on a large parcel of mostly open land. I imagined that, if my mother needed more company than I could give her, all I would need to do would be to walk across the gravel path that connects the houses and knock on a door, call someone, or send an email on the community's listserv.

    I pictured Mom smiling and serene as she sits with a new friend at a concert at one of the three universities in town; joining us three nights a week for community meals; watching neighbors of all ages weave the cloth ribbons of our Maypole in the spring. I assumed that my role would be peripheral. Our community would give Mom the stimulation she needs to rejoin the pulse of life.

    Most important, though, I wanted to protect my mother—keep her from falling or starving. She looked skeletal, and I wanted to feed her. In my home, I could tuck her under my wing as I would my children; I could send her out into the world but watch her.

    I talked to Ben about her living with us. He has not had warm feelings for my mother since that night, early in our marriage, when she kicked us out of the cottage in a rage. Ben agreed to invite my mother into our home only because it was important to me.

    I called Mom to tell her that it was too dangerous for her to stay at the cottage any longer, that she could live with us. I was sure she would balk. To my surprise, she seemed relieved.

    She said, "You’re right, honey," her voice small and far away. "I don’t think I can do this anymore."


    When we finally do reach Dr. Gavin’s office that February morning, I report the incident of the snow ditch. Mom is quite fond of the elderly Dr. Gavin, her "small town doctor," as she calls him, and has been going to him since she moved into the cottage. 

    He reads aloud what he records in my mother’s chart: "Judy’s daughter is uncertain at this time whether or not her mother should be driving."

    Turning to Mom, he says, "I believe you may have had a very small stroke, Judy."

    "I have?" Mom looks startled.

    "Yes, I believe so. A very small stroke, too small to detect, but one that has affected your memory." He pauses. "You and I have both noticed some small changes in your memory, haven’t we?"

    "Yes, I must say I’ve noticed," Mom says. "It’s very upsetting." She frowns but continues to study the doctor’s face. 

    Dr. Gavin asks, "Judy, could you tell me what you had for breakfast this morning?"

    "I usually have ice water."

    'And what did you have for lunch?'

    "Crackers, I guess. I haven’t been that hungry."

    "Did you know that you’ve lost fifteen pounds this past year? You’re down to 118."

    "No, I had no idea."

    She smiles and flutters a laugh, but I feel something chill crack. Ice water. She’s doing even worse than I thought.

    I tell Dr. Gavin that I’ve invited my mother to live with me.

    The muscles in his face relax. Slowly, as if choosing each word carefully, he says, "I think it would be…good…for you, Judy, to be with your daughter."

    "Yes, I think so, too." My mother trusts her doctor. I know she trusts me, too, but Dr. Gavin’s opinion means just a bit more to her.

    As I stride back down the hall with Mom at my side, I smile too much at the nurse and the assistants. I leave confident in my new role but puzzled by the doctor’s reserve and his sad eyes.

    Read Chapter Twenty:  "Slowing Down"

    Read Appendix B: "Medications Approved to Relieve the Symptoms of Alzheimer's Disease"



    Buy the Book