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      Inside the Dementia
     Epidemic: A Daughter's
     Memoir

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

     


    One
    of Alzheimers.net'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

    ______________________________________________________

    PHOTOS:

    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

    Tuesday
    Dec092014

    Podcast: Are We Prepared for the Growing Need for Elder Care?

    Dr. Karl Pillemer, me, host Catherine Roper, and Dr. Bill Thomas at NPR elder care panel discussionHow can we as communities, families and individuals do a better job planning for the aging process and the needs of our growing elder population? 

    I feel very honored to have been invited to participate in an NPR panel discussion on elder care issues with Dr. Bill Thomas, Dr. Karl Pillemer and host Catherine Roper of radio station WRVO, which was broadcast in late November 2014. In a post today for ChangingAging.org I summarize our discussion, including the questions we were asked by the live audience in Upstate New York.

    The podcast is well worth listening to, I believe, because of the sheer range of topics that we touch upon and my fellow panelists’ innovative ideas about aging well not “in place” but "in community.”

    The topics we talk about, which are too numerous to list in their entirety, include: 

    • What should you consider before moving a parent into your home?
    • Is it worth the cost to hire a geriatric care manager to assess your family’s situation and design a care plan that meets your specific needs?
    • What kinds of free support are available for family caregivers?
    • How can we encourage family caregivers to see themselves not just as family members or friends but as caregivers who need and deserve information and support?
    • Why do communities need government and volunteer support of transportation services in rural areas, and alternatives to having elders drive from rural areas to far-away cities to consult with specialists?
    • As you age and your friends move away or die, why is it important to keep adding new people to your “funnel” of friendship?
    • How can new technology help caregivers find support or monitor a loved one who lives far away?
    • How is caring for an aging spouse or partner different than caring for an aging parent, and why do spousal caregivers often receive much less help in the home than other types of caregivers?

     Read more, or listen to the podcast, here.

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