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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 Alzheimer's Disease and Other Dementias:


    • One in 8 people over age 65 in the United States has Alzheimer’s disease, and nearly 50% over age 85.

    • In 2014, an estimated 5.2 million people in the United States are living with Alzheimer’s disease.
    • Women are more likely to develop Alzheimer's disease. A woman age 65 or older has a 1 in 6 chance of developing Alzheimer's disease in her lifetime, compared to 1 in 11 for a man. 
    • 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 a means of prevention, a way to slow its progression, or a cure.
    • The 35.6 million with dementia worldwide in 2010 is expected to double by 2030 to 65.7 million, and then nearly double again by 2050 to 115.4 million.
    • Alzheimer’s disease is the most common form of dementia, at 60-80%, but there are over 100 types of dementia, including vascular dementia from small strokes, which accounts for up to 20% of dementias, dementia from Parkinson’s disease, Frontotemporal dementia, and “Familial Alzheimer’s disease” (also called “early-onset” Alzheimer’s disease), which occurs before the age of 60 and represents 5-7% 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.
    • 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.
    • No medication exists to slow the progression of Alzheimer’s disease, but two types of prescription medications have been approved by the FDA to lessen the symptoms for up to 3 years: cholinesterase inhibitors (Aricept, Exelon, and Razadyne), and Namenda, an N-methyl D-aspartate antagonist.                                          
    • Most scientists agree that there are certain risk factors for Alzheimer’s disease. They include old age; a family history; serious head trauma; poor cardiovascular health; high blood pressure; stroke; diabetes; high cholesterol; obesity in middle age; a low education level (which predisposes someone to less learning and brain development over their lifetime); and smoking.
    • Some researchers say that exercise may be our most powerful antidote for Alzheimer’s disease. Research shows that daily activity of all kinds—from formal exercise to activities such as washing dishes, cleaning, and cooking—may reduce the risk of developing Alzheimer’s disease, even in people over age 80. Other studies show that people who walk for 40 minutes a day for a year regain volume in their hippocampus, reversing brain shrinkage, and that people with mild cognitive decline who do resistance weight training 2 times a week for 6 months show an increase in their memory and executive function (the ability to multi-task).
    • No test exists that will confirm a diagnosis of Alzheimer’s disease, but doctors can diagnose “probable Alzheimer’s disease” with 90% accuracy with neuropsychological testing and by ruling out other causes of memory problems and cognitive decline. A medical history can rule out depression; lab work can rule out urinary infection, thyroid dysfunction, and vitamin deficiencies; and a CT scan and MRI can rule out strokes, trauma, and tumors.
    • Other risk factors for Alzheimer’s disease include: undiagnosed or untreated vision problems (a 9.5-fold increase in risk); sleep apnea (doubles your risk); and insulin resistance or pre-diabetes (which makes you 70% more likely than someone with normal blood sugar and insulin levels to develop Alzheimer’s disease).
    • More than 18 million American adults have sleep apnea, a risk factor for Alzheimer’s disease. Sleep apnea is as common as Type-II diabetes.
    • Many researchers now describe Alzheimer’s disease as “Type III diabetes”—diabetes of the brain.

    • People with Type II diabetes are twice as likely to develop Alzheimer’s disease as those without diabetes. Diabetics on insulin therapy are 4 times as likely than non-diabetics to develop Alzheimer’s disease. Twenty million people in the U.S. have Type II diabetes, and twice that number are insulin resistant and pre-diabetic.
    • Benefits of early diagnosis of Alzheimer’s disease (paraphrased from the Alzheimer’s Association’s 2011 report “Alzheimer’s Disease Facts and Figures”):
           - The cognitive decline may be caused by
              something treatable, such as depression
              or a vitamin B12 deficiency, and early
              diagnosis prevents further decline;
            - It’s important to discuss the diagnosis with family
               members and begin the search for appropriate
               support services;
            - Such a discussion reduces anxiety by naming the
            - Medication and other approaches may be used to
              manage symptoms;
            - Early diagnosis gives people the option of joining
              clinical trials;
            - It allows more awareness of how some
              combinations of medications make
              symptoms worse;
            - It alerts doctors and family members to the
               possibility that the person may need assistance
               with daily tasks such as cooking and managing
            - It may reduce falls and other accidents because
               caregivers are more aware of the dangers;
            - It allows an awareness of financial problems
               such as the person giving money to scams; and
            - It allows the person with dementia and their
               family members to plan for the future.
    • In 2011, the federal government allotted $450 million for Alzheimer’s research through the National Institutes of Health, compared to over $3 billion for HIV/AIDS, over $4 billion for heart and cardiovascular disease, and nearly $6 billion for cancer. In February 2012 the Obama administration announced an increase in the federal budget for Alzheimer’s research of $130 million, bringing the total to $580 million.
    • Sixty-four percent of people aged 65 or older in nursing homes have Alzheimer’s disease or another dementia

    Statistics and Facts about Caregiving and Long-Term Care