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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 Alzheimer's disease (1)

    Thursday
    May172012

    Reviews and Testimonials for "Inside the Dementia Epidemic"

    "Honest, compassionate, and informed. Makes for compelling reading. Highly recommended."
                                   —Library Journal    

    "Martha writes profoundly on the daily struggles of family, how dementia places pressure on all those close to the person, and the struggle to enjoy the time left.  A tragic tale that will grant strength to those facing a similar predicament."     —Midwest Book Review    

    "In this compelling memoir, Stettinius shares the struggles she faces when her mother, Judy, is diagnosed with dementia...Stettinius ably illustrates the challenges she faces and shares wisdom and advice she's learned along the way,...[and] offers a wealth of resources for readers dealing with dementia."
                               —Publishers Weekly Select                    

    "Martha Stettinius writes Inside the Dementia Epidemic with clarity and insight both into her mother and herself. Her story isn't a simple review of things that happened during her years of caregiving. Rather, Stettinius talks about how it affected her, her mother, her spouse, and her children, as well as things she's learned that would have been more helpful if she'd known them earlier. In addition, she provides a comprehensive index, notes, resources, and appendices on individual topics…

    "From beginning to end, Stettinius is thorough without over-explaining, and she talks on a level that someone new to the world of dementia can understand. She also doesn't talk down to someone with years of experience in this area…Her book covers a vast amount of information without creating information overload because it's well organized and shepherds the reader through each topic step-by-step…

    "Inside the Dementia Epidemic will help friends, family members, and caregivers get a foothold quickly and ease the natural anxiety that comes with the large number of complicated decisions they face. It's a wonderful resource for individuals and professionals."

                                      — Story Circle Book Reviews

                                      To read the complete review, visit
                                      http://www.storycirclebookreviews.org
                                      /reviews/dementia.shtml
    .

    "Martha Stettinius writes so very well in this memoir of how she, her family and caregivers dealt with her mother Judy's dementia as it moved from mild to progressively worsening stages. The author is very forthright in telling readers that she wished she had paid more attention to what was going on in the early years when her mother was developing dementia. Judy lived by herself for over twenty-five years in her family's remote lakeside cottage in rural New York. And even though Judy was bright and had been a special education teacher, her solitary life was dangerous as her brain needed stimulation. She needed to learn new skills and participate in a variety of social and cultural events but since she lived alone, she did not. Her daughter, author Martha Stattinius, writes at the beginning of 'Inside the Dementia Epidemic' that dementia, often called the 'silver tsunami,' is not just Alzheimer's but is also 100 different conditions. It is the fifth leading cause of death for those over 65 and of the leading 10 causes of death, it is the only one without means of prevention.

    " 'Inside the Dementia Epidemic' is an honest and thorough look at diagnosing and then dealing with a family member or close friend who is in one of the seven stages of Alzheimer's. Stettinius gives suggestion after suggestion on how to deal with someone afflicted with dementia. She tells of her own experiences and shares information about how to deal with the high financial costs of care-giving. Martha Stettinius also shares her mistakes in moving her mother from one nursing facility to another and what the reader should look for in a care facility. Above all, she stresses that in dealing with a dementia patient their jumbled words should never be equated with loss of self awareness. The appendixes, bibliography, and index at the book's end are thorough and excellent, a treasure trove of information. As baby boomers age, dementia diagnoses will increase, so 'Inside the Dementia Epidemic' is a 'must read' book for readers everywhere."

                              — Alice DiNizo for Readers' Favorite Book
                                  Reviews (silver medal in the Memoirs
                                  Category, 2013 Book Awards)

    "An exceptional and unique addition to the growing body of caregiver literature. Stettinius candidly portrays the demanding and life-changing experience of not only caring for a parent with dementia, but simultaneously raising children, maintaining a marriage and attending to a career.  She also seamlessly interweaves the fascinating back-story of the close but sometimes tumultuous relationship with her mother as it progressed since Stettinius’ childhood.

    "The narrative is structured in 5 parts, with one part dedicated to each type of care that her mother required (home care, assisted living, rehab, memory care, and nursing home). Despite the difficult subject matter, the tone is positive and life affirming without being overly sentimental. The book not only has the potential to teach and inspire family caregivers, it also paints a vivid portrait of life as a caregiver for those of us who haven’t been through the experience first hand, but who are interested in understanding, as best as possible, what it’s like to care for a loved one with a dementia."

                      — Jeff Anderson, of A Place for Mom  
                        

    "An extraordinarily important book about the journey of a daughter, a mother, a family, and a community when they are struck with the horror that is Alzheimer's disease. Martha's vivid words brought me back to my own mother's battle with the unforgiving disease.  But no one wins against Alzheimer's. She candidly describes her experience as she comes to grips with Alzheimer's hurricane-like damage to her mother Judy's entire being. Martha bravely describes in detail (which is in turn tragic, revealing, and uplifting) her education about this horrific disease and her experience as caregiver and advocate. Most poignantly we learn about Martha's relationship with her mother, from childhood through her 40s as Alzheimer's engulfs her mother. When Judy says to Martha, 'You're like my mommy. I need my mommy,' Martha writes that her stomach twists, and then she says to her mother, 'No, Mom, you're still my mother and I'm still the child.' I thank Martha for offering such a moving, thorough and vital chronicle." 
                           —Trish Vradenburg, Co-Founder,
                              USAgainstAlzheimer's,
                              Playwright/Author/Comedy
                              Writer/Advocate 

    "A remarkable, brutally honest, and beautifully written account of what it's like to take on the role of caregiver for a loved one with dementia. Stettinius takes us on a brave journey from at-home care to the difficult decision of choosing to have professionals care for her mother in a residential facility. There is heartbreak, joy, and incredibly useful information in this touching memoir that will help anyone facing the task of taking care of an elderly person who can no longer take care of themselves." 
                          —Mary Ellen Geist, author of “Measure
                             of the Heart: A Father’s Alzheimer’s,
                             a Daughter’s Return”

    "With the passion of a committed daughter and the fervor of a tireless reporter, Martha Stettinius weaves a compelling story of her long journey caregiving for her demented mother with a broad exploration of the causes of dementia, means of treating it, and hopes for preventing it.  Her greatest gift to readers is that of optimism—that caregiving can deepen love, that dementia can be fought, that families can be strengthened. Her book is appealing, enlightening, inspiring."                                 
                          —Barry J. Jacobs, Psy.D., author of
                            "The Emotional Survival Guide for
                             Caregivers
    Looking After Yourself
                             and Your Family While Helping an
                             Aging Parent"

    "Tender, honest, credible and informative, the market has been waiting for this work. From first-hand experience and aided by a journalistic perspective and talent, this work will be of help to anyone going through this tricky experience. I wish I had been able to read this book when I cared for my own mother with dementia.

    And don't worry—it is HOPEFUL too...and honestly so. A MUST-read!"

                           —Cathie Borrie, author, "The Long Hello:
                              The Other Side of Alzheimer's"

    “Martha Stettinius has a wonderful style of writing that ignites vivid images. Her first-person style conveys well the family experience with a loved one with dementia: at turns confusing, challenging, heartbreaking and joyful. While the story-telling process is clearly cathartic for the author, other families going through similar challenges will gain from the stories and the knowledge Martha collects along the way.”
                           — Sharon K. Brothers, MSW
                               CEO, Institute for Professional Care
                                 Education
                               Senior Vice President, Caregiver Village

    "This book is special, because it combines a very personal story about how a daughter is affected by her mother's illness with a broader perspective on Alzheimer's disease and other dementias. Martha Stettinius has done that in a comprehensive way, and she gives us a good inside look at the importance of continuum of care, something that is often underestimated for this disease. Above all, this book is a guide for everyone hit by Alzheimer's and dementia, and it reads very well." 
                        — Marc Wortmann, Executive Director,
                            Alzheimer's Disease International     
      

    "Many writers have reflected on the experience of being a son or daughter of a person living with dementia, but until I read Inside the Dementia Epidemic I had not found one that pulled off the remarkable feat of helping the reader understand and actually feel the journey of both parent and child. This remarkable book is invaluable precisely because it offers us a deeply honest account of both perspectives."

                          —Jude Thomas, Care Partner and
                            Co-Founder of Eden Alternative
     

    "Intense in its immediacy, yet reflective, Inside the Dementia Epidemic will pull you into a world which many families have come to know, but which few have the capacity to tell with compassion."

                          —Dr. Dennis McCullough,
                            Associate Professor of Community
                                 and Family Medicine,
                            Dartmouth Medical School, and author,
                            "My Mother, Your Mother: Embracing Slow
                                 Medicine"

    “The story of her mother, Judy, that Martha Stettinius shares is a gift of love. Her book offers the reader—whether we're now a caregiver, have been one, or possibly will be in the future—an understanding of the challenges that can face the family caregiver of a loved one with diminishing physical and mental abilities.
         In the closing paragraph of her book, Martha tells of her daughter, Morgan, who at age ten told her that ‘a book about taking care of Grammy is a good idea because it will help other people in your situation know that they are not alone.’ We can learn about ourselves, grow, change, and deepen from learning of the challenging experiences of others. I've personally found inspiration and deep wisdom in the story Martha tells. She validates that a word, a touch, a hug, or just being there may be all we can give to a loved one if their physical needs are attended to. Through caregiving, love can deepen, and the experience can become a blessing.    
          Her beautiful and honest tale deserves our deepest gratitude.”               
                      —Connie Goldman, speaker and author,
                        "The Gifts of Caregiving—Stories of
                         Hardship, Hope and Healing"

     “A wonderful, heartfelt diary of what it feels like to be a family member of someone with an irreversible dementia. Inside the Dementia Epidemic is valuable not only for family members who sometimes feel as if they are alone in this journey, but also for healthcare professionals who need to understand the impact this disease has on families. Stettinius writes not only from the heart (how it feels) but from her head (what she would have done and asked over the years, had she known then what she knows now), and that is the strength of this book.”
                     —Joyce Simard, MSW, Adjunct Associate
                        Professor, University of Western
                        Sydney, Australia; Geriatric consultant
                        and author,
    "The End-of-Life Namaste
                        Care Program for People with Dementia"

    "Readers who are challenged with caring for a loved one suffering from dementia will find much to guide them in this chronicle of a daughter's journey to help her mother through the several stages of this dreadful disease. A moving and insightful work."
                         —Claire Berman, Author of "Caring for
                            Yourself While Caring for Your Aging
                            Parents: How to Help, How to Survive"

    “A thoughtful and beautifully written book. Martha Stettinius is honest in recording not just the practical difficulties she encounters as she navigates a path through the complex and often illogical world of dementia care services, but also the emotional journey she makes. A reluctant caregiver at first, she must learn to accept that her stubborn, difficult mother can no longer manage on her own. As the dementia progresses, the experience of supporting her mother transforms the dynamic between them, fostering a new warmth and closeness.
           If you have recently started to care for someone with dementia, I heartily recommend that you read this book. Martha Stettinius generously shares the practical, financial, and medical information she has learned, and the emotional insights she has gleaned. All caregivers have a long list of ‘If only…’’s. In her ‘Afterword,’ Stettinius tells us what she would have done differently at each stage, if only she had known more—to help save others from making similar mistakes. Caring for someone with dementia is often a bewildering, distressing, and isolating experience. This book will help you to appreciate that you are not alone, but part of a wider community of people who have all been caught up in the ‘dementia epidemic’—and all of us can gain knowledge and emotional sustenance from each other.”
                         —Lucy Whitman, editor of "Telling Tales
                            About Dementia: Experiences of Caring"

    Inside the Dementia Epidemic is an honest, emotionally-charged, and thought-provoking account and life story of the author’s mother and the dementia journey. Many moments in the book literally took my breath away and made me really think about the dementia journey and the impact this diagnosis has not only on the person but the family who loves and cares for them.”
                          —Sandra Stimson, CALA ADC CDP
                                 CDCM AC-BC
                             Founder and Executive Director
                             National Council of Certified
                                 Dementia Practitioners

    “Dementia is an all-consuming and intimate disease, the effects of which linger long after the death of the loved one. This book is about slowing down and savoring memories. Readers will not only find Martha Stettinius’ memoir consoling, they will gain the invaluable advantage of hindsight on things she would do differently if she had to do it all over again.”
                        
    Joy Loverde, Author of "The Complete
                           Eldercare Planner, Revised and Updated
                           Edition: Where to Start, Which Questions
                           to Ask, and How to Find Help," 2009

    Inside the Dementia Epidemic joins a growing body of tales in books and the popular press that describe the poignant, trying experience of devoted family members dealing with the implications of dementia. This story captures well the personal cost of care as a daughter helps her mother through the various levels of the disease and treatment modalities. Here is someone struggling to do the right thing for her mother and for herself, but even the best efforts will not suffice. It reminds us of the terrible toll this disease takes on everyone who comes in contact with it. We have no simple fixes—no medications, no care systems that can make the consequences easier to bear. If this is indeed 'the defining disease of the generation,' it will not be an easy definition to cope with.
         People facing this challenge can read this book to find solace that they are not alone, their frustrations are not of their own making, and no one has the easy answers."          
                —Robert L. Kane, MD
                   Minnesota Chair in Long-term Care and Aging
                   University of Minnesota School of Public Health
                   Author of "
    It Shouldn’t Be This Way: The Failure
                       of Long-term Care" and
    "The Good Caregiver"

    "If you happen to be an adult child with a difficult relationship with your parents, caring for a parent with memory loss is a journey through rough seas. In her memoir, Martha shares from her heart her struggles to find peace for both herself and her mother as they navigate through the challenges of Alzheimer's disease. Inside the Dementia Epidemic is an excellent, eye-opening account of what Alzheimer's caregivers go through."
                —Nataly Rubinstein MSW, LCSW, C-ASWCM,
                   Alzheimer's Care Consultants, Inc.,
                   and author, "Alzheimer's Disease and
                   Other Dementias: The Caregiver's Complete
                   Survival Guide

    "Inside the Dementia Epidemic, A Daughter’s Memoir is a revealing chronicle, both very personal and archetypical of a family caregiver of an aging parent.

    "Martha Stettinius takes her mother into her home when it’s no longer safe for her to live alone. Thinking of herself simply as a kind (and dutiful) daughter, it takes her a while to recognize that she has become her mother’s caregiver, a fact that’s difficult for her to accept. Her account takes us through the journey in minute detail, sharing her fears, anger, doubts, anxieties, guilt feelings and finally relief when she learns to let go of her own expectations and focus on her mother’s pace, rhythm, and needs.

    "According to the AARP, currently 65 million Americans care for a loved one, often an elder parent with dementia. As a professional I’m struck by how poorly we serve these millions of families struggling and finding it extremely difficult--to impossible--to find answers or support. Across the nation, our communities fall short on providing desperately needed services to relieve the burden on these family caregivers. Grants from government and private sources fund aggressive research into causes of these diseases and the pursuit of cures for Alzheimer’s disease and related dementias. There’s no question that this is appropriate and necessary. However, in the meantime, there’s little attention paid to the millions of families actually living with these diseases.

    "Martha Stettinius’ personal account is timely and adds important weight to the national conversation that we must have on this crisis."

                                    —Jytte Lokvig, Ph.D., author, Alzheimer’s A
                                       to Z: Secrets to Successful Caregiving
    and
                                      Alzheimer’s A to Z: A Quick Reference
                                      Guide

    "Martha Stettinius shares many of the great lessons of 'care partnering' for someone with dementia—not just how to navigate the system, but how to enjoy her time with her mother.  Their troubled relationship improves, and many walls of protection that are not needed anymore are replaced with open arms.  Martha has written well what other caregivers struggle to understand about themselves, and she articulates well the surprises, struggles, and successes that caregivers deal with as they move through this new phase of their relationship with their loved one.  She also reflects throughout the book about what she learned later, and what she would have done differently.  This will help others realize earlier on that they should question their interactions and seek out the best interventions."

                 —Kerry Mills, President, Engaging Alzheimer's

    “Inside the Dementia Epidemic: A Daughter’s Memoir is much more than a traditional memoir. Author Martha Stettinius lets the reader join her personal caregiver’s journey with beautifully executed phrasing, skillful storytelling, and hardcore facts. The book offers an emotionally honest guide to others who are caring for a loved one with dementia. I’d recommend it to anyone interested in Alzheimer’s disease, which Stettinius refers to as ‘the defining disease of this generation.’ That should include most of us. Inside the Dementia Epidemic is a fascinating and informative read that not only educates, but touches the heart.”
               —Carol Bradley Bursack
                  Founder and Owner, Minding Our Elders;
                  author,
    "Minding Our Elders: Caregivers
                      Share Their Personal Stories"

    "As a nurse, dementia consultant, and daughter of a parent with dementia, I can tell you without hesitation to read Inside the Dementia Epidemic: A Daughter's Memoir if you have a loved one with dementia in your life.  Stettinius sets the stage with a good history of her often turbulent relationship with her mother, and in this way, begins to draw you into her life with her mother with dementia.  She has great insight into her own reactions and behaviors, and it made me wish I had been a bit more introspective with myself when dealing with my father's dementia.  Her insight will help you understand why you feel as you do, and why you shouldn't beat yourself up about it.  I found myself hoping against hope along with Stettinius that her Mom would get better in some small way by the next visit, and I cried those times when she did not.  

    As a dementia educator, I was pleased to see that Stettinius ended her story about her mother with an accurate assessment of the value of all of those RAs (resident assistants) who work with these frail, challenging elders every day.  She promotes a better work environment for staff, as well as an enriched environment for elders with dementia such as is seen in the Green House Project.  Stettinius includes a wealth of information about the many other issues families face, such as tests for diagnosing AD, planning for long-term care, and much more.  She includes a great list of reasons why early diagnosis is so beneficial with this devastating disease.  You will be glad you found this book to help guide you."
                         —Cindy Keith, RN, BS, Certified Dementia
                            Practitioner, author of "Love, Laughter, and
                            Mayhem - Caregiver Survival Manual for
                            Living with a Person with Dementia,” a
                            dementia consultant and owner of M.I.N.D.
                            in Memory Care (Moving In Nurturing
                            Directions in Memory Care) 

    "Inside the Dementia Epidemic is so much more than a fine memoir of a daughter whose mother suffers from Alzheimer’s disease—it is a resource to fight, perhaps even prevent, a mass destruction that is ready to overtake the next generation. Baby boomers will be well-advised to read this book, as it may well be the equivalent of Rachel Carson’s Silent Spring, which warned of toxic chemicals in our water and earth. Martha Stettinius’s combination of personal story, guide to care resources, and scientific and legal research outlines the equally deadly 'silver tsunami' of Alzheimer’s and other dementias that will soon overtake us, unless we learn more, and learn fast. Part step-by-step primer on how to care for stricken parents, part educational antidote to save ourselves, Inside the Dementia Epidemic: A Daughter’s Memoir is a prescient work of our eleventh hour.
                        —Laura Shaine Cunningham, author of
                          "Beautiful Bodies," "
    Dreams of Rescue,"
                          "A Place in the Country," and
    "Sleeping
                           Arrangements," and Artistic Director,
                           The Memoir Institute

    "I could not put down this book. It is just an absolute delight. Even though painful, it is beautifully written and goes right to my core.

    Although my parents do not have dementia, there is so much that is completely relevant to me in this writing. The intensity of caring for elderly parents, along with young kids, and somehow figuring out how to balance it all, is very much a reality for me, and I am full of admiration for this author. The way she reveals her struggle for balance, and achieves it, is very inspiring. Even if I did not relate personally, her story is just so compelling."
                         —Sara Kabakov, “sandwich generation” mom

    I appreciate Ms. Stettinius's honesty about the feelings she’s experienced around the care of her mother. She’s also very specific about the conversations and interactions she’s had with various staff in the facilities where her mother has lived, and I think that will be very useful for others who find themselves in a similar situation. It has been an eye-opener for me to hear the family member's point of view.  I recommend this book to anyone who has an interest in the lives and options of elders and their families.

                         —Suzanne Kates, LMT, owner, SageWork
                            Massage & Reiki for Elders

     
    Buy the Book