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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


    4 Activities to Engage Someone with Dementia

    Today I'm delighted to share with you a guest post from Paula Spencer Scott, senior editor at

    Dementia caregivers face long hours to fill each day. Besides marking time, there's another reason to find meaningful activities to engage someone with dementia. The mood lift that comes from spending time doing something absorbing and enjoyable usually continues for hours or even days after the activity itself has been forgotten.

    Consider some of the following:

    Repetitive arts activities

      Why they may appeal:  Some people
      with dementia seem to become free
      of inhibitions and self-criticism that
      kept them from enjoying art earlier
      in life. Suddenly, and unexpectedly,
      they may spark to painting or crafting in ways they showed no interest in earlier. Arts activities are also expressive and therefore deeply satisfying. By mid-dementia, your loved one may find repetitive activities less stressful. Because they involve doing the same thing over and over, they can ease frustration and provide a sense of mastery.

    Examples:  Stringing popcorn or pasta for decorations, stamping with inks and wood-cut stampers, creating collages with leaves or magazine images, working with clay

    Clerical-type activities

    Why they may appeal:  People who spent the bulk of their adult lives going into an office may be soothed by activities that echo that life. The materials could be stored in a familiar briefcase or the activities done at a favorite desk. The purpose of what's being done is less important than the purposeful-feeling action of it.

    Examples:  Rolling coins, sorting papers, stuffing envelopes, clipping coupons, sorting through folders

    Outdoor activities

    Why they may appeal:  Being in the fresh air and sunshine tends to help everyone feel better, sleep better, eat better. Someone who used to spend long hours outside for a job or hobbies can be especially comforted being out in nature. Obviously if your loved one is prone to wandering, you need a secure yard or an elder companion who can keep an eye on him or her.

    Examples:  Picking up sticks in a yard, weeding, raking, hanging laundry on a clothesline, stacking kindling, digging holes, walking a labyrinth (to minimize getting lost)

    Musical activities

    Why they may appeal:  Musical memories are stored deep in the brain and are often surprisingly long-lasting. Music is a terrific shared activity, so the socialization doubly improves mood. For those who are religious, hymns and other familiar spiritual music can also be deeply comforting; many of these musical memories go all the way back to childhood. Classic holiday music can have a similar effect.

    Examples:  Listening to favorite music (try loading an iPod with custom play lists), plucking a zither or other simple instrument (such as those made for children learning to play), singing together, dancing, watching old musicals

    Paula Spencer Scott is senior editor at, the leading online destination for caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. Paula is a 2011 MetLife Foundation Journalists in Aging fellow and writes extensively about health and caregiving. If you need respite from caregiving, be sure to learn more about 8 Ways to Arrange a Break From Caregiving.

    (Image courtesy of africa at

    Reader Comments (1)

    So interesting about painting and the inhibitions being gone. This is good info. Thanks!

    March 28, 2013 | Unregistered CommenterBarbara Younger

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