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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

      Inside Dementia

       Welcome to my blog about dementia
       caregiving as a "long hello," not a
      "long good-bye" —how we can become
      "care partners" with our family members
       or friends who are living with dementia, and how we can care for ourselves. Living with Alzheimer's disease or another dementia is a long, hard road, full of grief, anger and despair, but life continues after a diagnosis, and so can moments of joy.

    Read more about my book, "Inside the Dementia Epidemic: A Daughter's Memoir," or order the book.

    To sign up for an RSS feed or emails of this blog, scroll down and look to the right.

                                      —Martha Stettinius 

    Entries in Alive Inside (2)

    Monday
    Jul282014

    Inspiring Interview with "Alive Inside" Director

    Wow. I highly recommend taking eight minutes to watch the interview below with the director of the 2014 Sundance Film Festival's Audience Favorite, the documentary "Alive Inside," about the power of music to reach people with advanced dementia--specifically music from their childhoods. 

    Michael Rossato-Bennett is so excited about the subject of his film that he would like to change the name of the film to "Make Grandma a Playlist!" He says that "music from your formative years hits you in a way that nothing else does." Rossato-Bennett was commissioned to design the website for the nonprofit Music and Memory, which campaigns to bring personalized music to nursing home residents, and he was so impressed with the program that he decided to document the work of Music and Memory in a film. 

    Seventy-five percent of the people he filmed in nursing homes with advanced dementia--people who usually sit slumped down, unresponsive--"come alive" when they listen to their favorite music from their childhood and teen years on headphones. When the headphones are taken off, they are able to talk about their memories and have a real conversation.

    As he says, the parts of the brain that process music are "basically spared" by Alzheimer's (and perhaps other dementias). Despite advanced dementia, all people have "life deep down inside us."

    Music is not a cure for dementia, of course, but personalized music can be amazingly powerful.

    Check out his interview, or my blog post last week, for more information about the film, which opened last week in select theaters across the country and will be available on iTunes and as a DVD in October.

     

    Wednesday
    Jul232014

    "Alive Inside": New, Inspiring Movie About Dementia and Music

    Photo courtesy of "Alive Inside"One stigma of Alzheimer’s disease and other dementias is the belief that people living with advanced dementia are completely “gone”--“shells of their former selves.” A new documentary shows that people with advanced dementia who may seem to have lost their ability to speak are still capable of being roused and engaged in conversation. It turns out that music is key—specifically, individualized music from the person’s childhood and young adulthood.

    Now through September, the film “Alive Inside” is premiering in select theaters across the country, and is well worth seeing if you know someone with Alzheimer’s disease or another dementia—and even if you don’t. “Alive Inside” chronicles the work of social worker Dan Cohen, founder and Executive Director of the nonprofit Music and MemorySM. Cohen has campaigned for years to bring personalized music to nursing home residents in the form of an iPod or other digital device loaded with the person’s favorite music from childhood or early adulthood.Hundreds of nursing homes in the U.S. and Canada have implemented Music and Memory, and Cohen hopes the film will help bring personalized music to many more elders.

    Directed by Michael Rossato-Bennett, “Alive Inside” won the 2014 Sundance Film Festival Audience Award and has been much anticipated because of a popular clip on YouTube. That clip shows a man named Henry with dementia who rarely speaks but “comes alive” when he listens to the jazz of Cab Calloway. “Alive Inside” includes conversations with the renowned neurologist and author Oliver Sacks, the musician Bobby McFerrin, and experts in elder and dementia care such as Dr. Bill Thomas.

    Read the rest of my post on caregivers.com.