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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

    Entries in dementia (1)

    Monday
    Oct012012

    Virtual Book Tour

    (For live presentations and readings, please see Upcoming Events.)

    I have been a regular contributor to caregivers.com and eCareDiary.com.

    Other Guest Blogs, Reviews, and Radio Events:

    Tuesday, June 7, 2015
    11:30 a.m. ET 
    Talk of the Town radio interview with Larry Rifkin
    WATR, AM 1320, Waterbury, CT
    Listen live here

    Sunday, November 30, 2014
    7:00 p.m. ET
    Panel discussion on elder care needs, on WRVO's
       "Take Care" radio show.
    I speak along with culture change leaders
        Dr. Bill Thomas and Prof. Karl Pillemer of Cornell.
    Listen to the recording here

    October 27, 2014
    AlzLive
    Book review 

    October 23, 2014
    Give Enough Care, Earn Some Credit: Social Security Caregiver Credit Act
    AlzLive.com article by Matt Kwong
    Interviewed for article  

    October 22, 2014
    Can Seniors with Dementia Also Experience Depression? 
    eCareDiary.com
    Guest post 

    October 4 and 11, 2014
    8:00 - 8:30 a.m. PST
    Lifestyle Improvement Radio
    Listen to the two-part podcast here
    Interview

    April 15, 2014
    Top 2 Tips for the Caring Journey:  Writing and Reaching Out
    Deborah Shouse Writes blog
    Book Review

    April 8, 2014
    Marianne Sciucco blog
    Book Review 

    March 31, 2014
    My Alzheimer's Story
    7 Alzheimer's Dementia Memoirs Worth Reading 
    Book Review 

    March 25, 2014
    Memory Writers Network
    Caregiver on a Hero's Journey--A Model for Your Memoir
    Book Review 

    March 25, 2014
    My Alzheimer's Story blog 
    Inside Dementia's Martha Stettinius Writes for Alzheimer's Caregivers 
    Book Review 

    March 19, 2014
    Memory Writers Network
    Practical Philosphy in Memoirs
    Book Review - Part 3 

    March 18, 2014
    Deborah Shouse Writes
    Four Ways Stories Make a Difference
    Quoted 

    March 11, 2014
    Memory Writers Network
    A Practical Philosphy of Love Revealed in This Memoir
    Book Review -- Part 2 

    February 21, 2014
    Memory Writers Network
    Lost Memories: A Daughter's Memoir about her Demented Mom 
    Book review 

    February 16, 2014
    The Generation Above Me 
    Book review 

    January 20, 2014
    The Writer Revived

    Book review

    January 9, 2014
    Top Books for Alzheimer's Caregivers
    Alzheimers.net
    Book review

    July 21, 2013
    Video chat with Gary Joseph LeBlanc (author of "Staying Afloat in a Sea of Forgetfulness: Commonsense Caregiving"), Harry Urban (a man with Alzheimer's who started the Forget Me Not Facebook group), and Michael Ellenbogen (a man with early-onset Alzheimer's and an author).
    View at https://vimeo.com/70727301.
     

    June 9, 2013
    11:30 a.m.
    WSKG-FM (89.3 Binghamton, 90.9 Ithaca, 91.7 Cooperstown/Oneonta, 91.1 Corning/Elmira, 88.7 Hornel/Alfred):  Listen to the recording.
    Radio Interview with Tish Pearlman on "Out of Bounds"

    June 6, 2013
    7:00 p.m.
    WEOS-FM (90.2 & 89.7 Geneva, NY):  Live Stream
    Radio interview with Tish Pearlman on "Out of Bounds"

    April 27, 2013
    8:00 a.m. ET (AM 880 in Ohio)
    Rebroadcast:
    Part I (12 min.): How to Advocate for Your Loved One in a Facility; How "Inside the Dementia Epidemic: A Daughter's Memoir" is different from other caregiving memoirs
    Part II (9 min.):  Seeing Alzheimer's differently, as a "Long Hello"; Challenging the stigma of dementia; Key advice for new caregivers
    with Joel Wrobbel, Journey Through Aging
    www.journeythroughaging.com
    Interview

    April 18, 2013
    SeniorHomes.com
    Interview

    March 21, 2013
    A Place for Mom
    "Not Alone: Interview with Author of Acclaimed Dementia Caregiving Book"
    Interview and Excerpt

    March 8, 2013
    Seniors for Living
    "High Hopes for the Long-Term Care Commission"
    Guest blog
     
    March 8, 2013
    eCareDiary's Expert Q&A
    "Is Dementia Reversible?"
    Article

    March 6, 2013
    ChangingAging
    "What 'Person-Centered Care' Means to Me"
    Guest blog

    March 4, 2013
    5:00 p.m. Eastern Time
    "The Aging Boomers" show on KSVY Radio, CA
    Interview

    February 23, 2013
    8:00 a.m. ET (AM 880 in Ohio)
    Rebroadcast:
    Part I (12 min.): How to Advocate for Your Loved One in a Facility; How "Inside the Dementia Epidemic: A Daughter's Memoir" is different from other caregiving memoirs
    Part II (9 min.):  Seeing Alzheimer's differently, as a "Long Hello"; Challenging the stigma of dementia; Key advice for new caregivers
    with Joel Wrobbel, Journey Through Aging
    www.journeythroughaging.com
    Interview

    February 16, 2013
    Alzheimer's Support
    Book Review

    February 14, 2013
    eCareDiary's "Expert Q&A"
    "Do Herbal Supplements Protect Against Dementia?"
    Article

    February 5, 2013
    1:00 -1:30 p.m. Eastern Time
    WSKG radio, "Off the Page" with Bill Jaker (NPR)
    Interview

    February 1, 2013
    eCareDiary's "Expert Q&A"
    "First Steps to Take When a Loved One is Diagnosed with Dementia"
    Article

    January 24, 2013
    The Caregiver's Voice, with Brenda Avadian, MA
    Book Review

    2012:

    October 4, 2012
    The CareGiver Partnership Blog

    Book Review

    October 10, 2012
    SeniorHomes.com
    Guest Blog:  "A Look Inside Dementia Care Facilities, by a Family Caregiver"

    October 10, 2012
    Western New York Alliance for Person-Centered Care
    Guest Blog:  "How a Daughter Learned to See Alzheimer's Differently"

    October 15, 2012
    1:00-1:30 p.m. Eastern Time
    Live Radio Interview
    with Viki Kind on Kind Ethics BlogTalkRadio.

    October 29, 2012
    Senior Care Corner
    Review:  "One Family Caregiver's Brave and Truthful Story" (scroll down)

    October 30, 2012
    Third Age
    Review: "The Positive Side of Dealing With a Parent's Cognitive Decline"

    November 2, 2012
    Care Manager for All blog
    Book Review

    November 3, 2012
    2:30 - 2:45 p.m. ET
    www.943wsc.com, with Henry Fendrich, Co-Owner of Home Instead Senior Care in Charleston, SC, and member of the S.C. Aging in Place Coalition
    Radio Interview: "Advocating for Your Senior in a Care Facility"

    November 5, 2012
    12:00 - 1:00 p.m. Eastern Time
    "Dementia--Remembering 4 You and What's Really Possible"
    Live Radio Interview with Lori La Bey of Alzheimer's Speaks Radio

    November 5, 2012
    Transition Aging Parents
    Guest blog: "Seeing Alzheimer's Differently: How a Daughter Learned That Her Mother is Still 'Here' "

    November 10, 2012
    8:00 a.m. ET (AM 880 in Ohio)
    Listen to the recorded Radio Interview (mp3 files):
    Part I (12 min.): How to Advocate for Your Loved One in a Facility; How "Inside the Dementia Epidemic: A Daughter's Memoir" is different from other caregiving memoirs
    Part II (9 min.):  Seeing Alzheimer's differently, as a "Long Hello"; Challenging the stigma of dementia; Key advice for new caregivers

    with Joel Wrobbel, Journey Through Aging
    www.journeythroughaging.com

    November 14, 2012
    4:00 pm ET
    Live Interview, Ithaca Community Radio

    November 17, 2012
    WENY-CBS: Southern Tier, NY, 6:30 am and 11:30 am
    WB2-ABC: Southern Tier, NY, at 7:00 am and 11:30 am.
    TV Interview for "Senior Notebook"
    with Tamre Waite, Director, Schuyler County Office for the Aging

    November 20, 2012
    2:00 - 2:30 p.m. Eastern Time
    eCareDiary's "Empowering Family Caregivers" Radio Show
    Live Radio Interview

    November 21, 2012
    More Than Caregiving blog with Meredith Resnick
    Psychology Today
    Guest blog:  "Seeing Alzheimer's Differently: A Hopeful Side to Dementia Care"

    November 22, 2012
    The Boomington Post
    Guest blog: "Alzheimer's Caregiving During the Holidays: How One Daughter Found Moments of Peace and Joy"

    November 29, 2012
    www.girlfriendswithagingparents.com
    Guest  blog:  "Nurse in Elder Care Facility Ally in Decision Making"

    November 30, 2012
    Anthony Cirillo's blo
    g "Who Moved My Dentures? Essential Information for Boomers on Healthcare, Aging and Caregiving"

    Guest Blog:  "Fighting the Risk of Alzheimer's Disease"

    December 1, 2012
    Kari Berit's "The Unexpected Caregiver" Radio Show
    Interview

    December 3, 2012
    Marti Weston's "As Our Parents Age" blog
    Book Review

    December 17, 2012
    Walker J. Thornton's blog "A Woman's Page"
    Book Review

    December 28, 2012
    Tompkins County Office for the Aging
    "In Support of Caregivers" Newsletter (pg. 10)

    Book Review