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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

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    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

    Entries in caregivers (1)

    Wednesday
    Aug032011

    Resources

    Dementia Care Guides

    These are my favorite guides for caregivers (or "care partners") about Alzheimer's disease and other dementias.

    I Care:  A Handbook for Care Partners of People with Dementia, by Jennifer Brush and Kerry Mills (2014). Read my review here.

    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.

    Sexuality and Dementia:  Compassionate and Practical Strategies for Dealing with Unexpected or Inappropriate Behaviors, by Dr. Douglas Wornell (2013). Read my review here.

    How to Evaluate the Quality of Residential Care for Persons with Dementia, by Sandra F. Simmons, Ph.D., John F. Schnelle, Ph.D., and Anna N. Rahman, Ph.D. (a free 60-page ebook funded by the Pat Summit Foundation), 2013.

    Mayo Clinic on Alzheimer’s Disease: Your Guide to Understanding, Treating, Coping and Caregiving, by the Mayo Foundation for Medical Education and Research, 2013.

    Staying Afloat in a Sea of Forgetfulness: Commonsense Caregiving, by Gary Joseph LeBlanc, Expanded Edition 2011.

    The End-of-Life Namaste Care Program for People with Dementia, by Joyce Simard, 2007.

    Caregiver Notebook, by the Alzheimer's Association, 2012.

    Learning to Speak Alzheimer's: A Groundbreaking Approach For Everyone Dealing with the Disease, by Joanne Koenig Coste, 2003.

    Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide, by Nataly Rubinstein, MSW, LCSW, C-ASWCM, 2011.

     Alzheimer's A to Z:  A Quick-Reference Guide, by Jytte Lokvig, Ph.D., and John Becker, M.D., 2004.

    Alzheimer's A to Z: Secrets to Successful Caregiving, by Jytte Lokvig, Ph.D., 2003.

    The Best Friends Approach to Alzheimer's Care, by Virginia Bell and David Troxel, 2003.

    The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, by Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H., 2006


    I'm Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer's    ,     by John Zeisel, Ph.D., 2009.


    What If It's Not Alzheimer's? A Caregiver's Guide to Dementia    ,     by Lisa Radin and Gary Radin, 2008.


    Forget Memory: Creating Better Lives for People with Dementia    ,     by Anne Davis Basting, 2009.

    Love, Laughter and Mayhem: Caregiver Survival Manual for Living with a Person with Dementia, by Cindy Keith, RN, BS, 2010.

    The Art of Dementia Care, by Daniel Kuhn and Jane Verity, 2007.



     

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