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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


    Statistics and Facts

    About Caregiving and Long-Term Care:

    • In 2013, 15.5 million family caregivers in the U.S. provided an estimated 17.7 billion hours of unpaid care for a family member or friend with dementia, valued at more than $220 billion.
    • A third of family caregivers report feeling depressed, and 60% feel extreme stress.
    • More than 60% of dementia caregivers are women, and women are much more likely than men to provide "hands on" personal care (men are more likely to arrange or supervise such care).
    • At least 70% of people over age 65 need chronic long-term care services that are not covered by Medicare (or by Medicaid until after they’ve spent their savings and become impoverished)
    • While 3 out of 10 elders will die quickly and never need long-term care, and 17% of elders will need assistance for only a year or less, more than 50% will need help for at least a year. One out of 5 elders will need assistance for 5 years or more. Women are twice as likely than men to need care for more than 5 years.
    • Long-term care at home lasts an average of 3-5 years, assisted living care 2.5-3 years, and nursing home care 2.3 years. Twenty percent of people over age 65 will end up spending over $100,000 on long-term care costs, and 1 in 20 will spend more than $250,000.
    • In 2011 the national average for dementia care in a semi-private nursing home room was $222 per day, or $81,030 a year; assisted living with dementia care averaged $152 per day, or $55,428 per year.
    • Most private long-term care insurance will start paying benefits when the person needs assistance with 2-3 “activities of daily living” such as bathing, dressing, eating, or toileting, or if they have a cognitive impairment for which they need assistance or supervision to protect their health or safety.
    • Less than 3% of Americans buy private long-term care insurance.