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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

    Main
    Wednesday
    Feb152012

    Sample:  Preface

    Download the Preface as a pdf


    For seven years I have coped with my mother’s dementia. I have cared for her at home, in assisted living, a rehab center, a specialized "memory care" facility, and the dreaded nursing home.

    What do we face next?

    In my question lies hope. Hope not just for my mother, Judy, but for me, and for you.

    The journey I have taken with my mother has alerted me to the latest scientific findings about dementia. Although the facts are frightening, they are our only hope if we wish to emerge with our minds intact from what is now a fast-growing epidemic.

    The shocking wake-up call is that this epidemic will also overtake those of us in middle age, unless we can somehow prevent or treat it.

    One in eight people over age sixty-five in the United States has Alzheimer's disease, and nearly fifty percent over age eighty-five. In 2012, an estimated 5.4 million people in the United States will have Alzheimer’s disease. As people continue to live longer, and the baby boomers grow older, the number of people with dementia will explode. The 35.6 million worldwide in 2010 is expected to double by 2030 to 65.7 million, and then nearly double again by 2050 to 115.4 million.

    Even if we do not get the disease, or if we get it late in life, we are likely to become a family caregiver for someone with dementia. In the United States in 2011, over 15 million family caregivers provided 17.4 billion hours of unpaid care to family members and friends with Alzheimer’s disease and other dementias. This unpaid care was estimated to be worth $210.5 billion, more than the total for federal and state Medicare and Medicaid spending for Alzheimer’s care. Family caregivers often sacrifice their own health and finances to provide that care. A third of family caregivers report feeling depressed, and sixty percent feel extreme stress.

     

    Dementia is not only Alzheimer’s (the most common, at sixty to eighty percent), but a Pandora’s Box diagnosis that includes over one hundred conditions. Familial Alzheimer’s—also called "early-onset"  dementia—occurs before the age of sixty, and represents 5-7 percent of Alzheimer’s cases. "Mixed dementia"—Alzheimer’s plus another type of dementia—has been shown in autopsies to occur in up to 45 percent of people with dementia. Vascular dementia alone, of which there are several forms, accounts for up to 20 percent of dementias.

    This book is not a lament, however; it is a guide, and, I hope, a means to soften the blow upon all of us. In the course of my own experience, I discovered what could have been done earlier to help my mother, and what can be done now to help us all: Startling scientific findings show that certain changes in diet and exercise—even changes in eye care and sleep patterns—may decrease the risk of developing these diseases. If we are to survive the "silver tsunami," which will overwhelm half the population in the not-too-distant future, we must join the worldwide movement demanding more dementia research. Alzheimer’s disease is the fifth-leading cause of death in the United States for those age 65 and older, but the only one in the top ten without either a means of prevention, a way to slow its progression for more than a few years, or a cure.

    Even if by luck or a preventive lifestyle we don’t succumb to dementia, each of us will pay for its treatment. In the United States in 2012, Medicare, Medicaid and out-of-pocket expenditures for Alzheimer’s and other dementia care total $200 billion. By 2050, the projected cost will reach $1.1 trillion. William Thies, Ph.D., the Alzheimer’s Association’s Chief Medical and Scientific Officer, says that "the overwhelming number of people whose lives will be altered by Alzheimer’s disease and dementia, combined with the staggering burden on families and nations, make Alzheimer’s the defining disease of this generation."

    Remember those words as you read this book:

    "The defining disease of this generation."

    The good news is that it is not too late to save yourself, and to learn how to best support your relatives if they already suffer.

    By sharing my journey of discovery, as well as the resources I acquired during the past seven years, I hope to help you cope with your afflicted family members and friends. What I’ve learned also might help you save your own sanity.

     

    Over the past few years I’ve inhaled all of the memoirs I could find about dementia caregiving, but most of these memoirs by adult children caring for a parent with dementia either treat the elder as hapless and amusing, which I find disrespectful, or they focus on the extreme stress and craziness of caregiving at home with little support. Few of these caregivers have written scenes in multiple care settings, as I have; few describe how they found adequate assistance; and few offer hope that the caregiving journey can be anything other than a crushing self-sacrifice. They describe dementia itself as a tragic wasting away and a long, painful good-bye—indeed, as the complete erasure of the person who once was. What I have experienced and felt with Mom is different, and I want to share our story.

    Related essays on dementia research, dementia risk factors, and planning for long-term care can be found in the appendices.

    I have navigated the maze of choices inherent in dementia care, and I can now offer my journey as a guide. With enough support from others, caregiving need not mean a life of constant exhaustion and loss. These years can be both manageable and meaningful—not a "long good-bye" as it’s often described, but a "long hello."

     

    Read:

    Chapter 1: "Judy"

    Chapter 2: "The Decision"

    Chapter 20:  "Slowing Down"

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

     

    Testimonials

    Buy the Book

     

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