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Inside the Dementia Epidemic: A Daughter's Memoir
     

Inside the Dementia Epidemic: A Daughter's Memoir

4.7 13
by Martha Stettinius
 

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"Inside the Dementia Epidemic: A Daughter's Memoir" is the unflinching and hopeful story of one woman's journey into family caregiving, and a vivid overview of the challenges of Alzheimer's care. With the passion of a committed daughter and the fervor of a tireless reporter, Martha Stettinius weaves this compelling story of caregiving for her demented mother with a

Overview

"Inside the Dementia Epidemic: A Daughter's Memoir" is the unflinching and hopeful story of one woman's journey into family caregiving, and a vivid overview of the challenges of Alzheimer's care. With the passion of a committed daughter and the fervor of a tireless reporter, Martha Stettinius weaves this compelling story of caregiving for her demented mother with a broad exploration of the causes of Alzheimer's disease, means of treating it, and hopes for preventing it. She shares the lessons she's learned over seven years of caregiving at home, in assisted living, a rehabilitation center, a "memory care" facility for people living with dementia, and a nursing home--lessons not just about how to navigate the system, but how caregiving helped the author to grow closer to her mother, and to learn to nurture her mother's spirit through the most advanced stages of dementia.

One in 8 people over age 65 has Alzheimer's disease, and nearly fifty percent of those over age 85. As baby boomers age, and we all live longer, most of us will know someone with Alzheimer's disease or another dementia, or care for someone with dementia. 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 10 without a means of prevention, a way to slow its progression, or a cure. In the United States, over 15 million family caregivers provide 17.4 billion hours of unpaid care to family members and friends with Alzheimer's disease and other dementias. Sixty percent of family caregivers report feeling extreme stress.

This memoir is not a lament, however; it is guide, and, the author hopes, a means to soften the blow upon all of us. In the course of the author's experience, she discovered what could have been done earlier to help her mother, and what can be done now to help us all. Ms. Stettinius's greatest gift to readers is that of optimism--that caregiving can deepen love, that dementia can be fought, and that families can be strengthened. Her book is appealing, enlightening, and inspiring.

Through its intimate scenes and skillful storytelling, Inside the Dementia Epidemic is a call to action for better dementia care, more funding for dementia research, and more support for family caregivers. In the appendices, the author shares facts she wishes she had known years ago, including how to get a diagnosis of Alzheimer's disease; what medications are approved to treat the symptoms of Alzheimer's disease; risk factors for dementia, and possible preventive measures; promising explorations in dementia research; the link between insulin resistance, diabetes, and Alzheimer's disease; the benefits of "memory consultations" and early diagnosis; and national and international movements for more dementia research and better care.

"Inside the Dementia Epidemic: A Daughter's Memoir" includes source notes, resources for caregivers, and an index.
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Editorial Reviews

Author - Mary Ellen Geist
"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."
Alzheimer's Disease International - Marc Wortmann
"A special book that 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. A guide for everyone hit by Alzheimer's and dementia that reads very well."
USAgainstAlzheimer's - Trish Vradenburg
"An extraordinarily important book about the journey of a daughter, a mother, a family, and a community when they are struck with Alzheimer's disease. A moving, uplifting, and vital chronicle."
National Council of Certified Dementia Practitioners - Sandra Stimson
"An honest, emotionally-charged, and thought-provoking account and life story of the author's mother and the dementia journey."
Author - Joy Loverde
"Readers will not only find Martha Stettinius's 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."

Product Details

BN ID:
2940015286960
Publisher:
Dundee-Lakemont Press
Publication date:
09/11/2012
Sold by:
Barnes & Noble
Format:
NOOK Book
Pages:
353
Sales rank:
266,685
File size:
1 MB

Meet the Author

Martha Stettinius is a "sandwich generation" mom and the main caregiver for her mother, Judy, who is living with advanced dementia. She works as an editor, and earned a master's in English Education from Teachers College, Columbia University. As an advocate for the needs of family caregivers, she serves as a volunteer representative for New York State for the National Family Caregivers Association, a Washington, D.C.-based advocacy group. For fourteen years she's lived with her husband and two children in an intentional community in Upstate New York.

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Inside the Dementia Epidemic: A Daughter's Memoir 4.7 out of 5 based on 0 ratings. 13 reviews.
Aelius More than 1 year ago
Unlike many memoirs written by a son or daughter in tribute to their wonderful, sweet and talented parent destroyed by Alzheimer's, Martha Stettinus's mother was opinionated, difficult, edgy and at times estranged from her daughter. In her book Inside the Dementia Epidemic, Stettinus details with insightful, honest and at times painful detail her long journey with her mother with dementia. This book is especially transparent allowing the reader to identify with attributes they may see in or experience themselves as family caregivers: guilt when they feel they're not doing enough; denial that their parent is as impaired as others perceive them; anger at needing to intervene setting aside their job, family etc. for someone else; longing for some personal escape from the never ending responsibility of parental care; isolation as daunting decisions rest on their shoulders alone and fear of a loved one running out of money and often second guessing difficult decisions. I can relate personally to some of the weighty issues Stettinus's dealt with especially denial, financial concerns and the impossible to describe feelings of doubt that, as the only living "child," you are doing the "right thing" (whatever THAT is) for your parent, one precarious decision after another. As an author, reviewer, therapist and Certified Dementia Caregiver/Practitioner, I highly recommend The Dementia Epidemic not only for its personal depth but also for identifying learned strategies for engaging with someone with illogical thinking and memory loss such as Alzheimer's
Anonymous More than 1 year ago
Anonymous More than 1 year ago
Having cared for my own mother who had Alzheimers, I really could identify with the author's initial denial that her parent had problems. The financial, legal, medical & emotional issues of care giving were portrayed very well.There are so many, many emotions involved and above all else guilt before, during and after the departed parent's illness. This book brought back many good and bad memiries of my mother's illness. Above all else the author has made me more comfortable with my experience though I, as she, wished I had known more sooner! If I had this book as a resource it would have made things much easier.
Anonymous More than 1 year ago
Anonymous More than 1 year ago
Very insightful. Recommended reading for anyone who may eventually care for someone with dementia related issues. Everyone's situation may be different, but this gives caregivers good information on what they will encounter and emotions they will feel. Well written.
Anonymous More than 1 year ago
Anonymous More than 1 year ago
LWV1 More than 1 year ago
Making the time to read Inside the Dementia Epidemic, A Daughter's Memoir by Martha Stettinius was one of the best gifts I have given  myself. Martha shares in spellbinding fashion how her estrangement turned to deep love as her mother Judy moved through the stages of Alzheimer's disease. I found myself cheering for Martha and Judy and felt every hurt, heartache, joy and triumph in a profound way. As  the daughter of a dementia sufferer, I knew I'd learn a great deal from reading a journey different from my own. Yet this book exceeded my every expectation by providing at least one new lesson in every chapter. One of the most powerful lessons for anyone dealing with a loved one with dementia is found in the final paragraph, "Each day brings loss; each day, recovery. A long journey, one day at a time." This is an amazing story of their seven year dementia journey, yet there is even more to come for readers. The ten appendices that Martha includes can only be described as pure nuggets of gold, which for me represents an invaluable Alzheimer's disease manual. If you know anyone with dementia and have been looking for an incredible love story that includes caregiver advice based on extensive research, your search will be over as soon as you order this book.  Loretta Anne Woodward Veney, author of  Being My Mom's Mom, a journey through dementia from a daughter's perspective
ReadersFavorite More than 1 year ago
Reviewed by Alice DiNizo for Readers' Favorite 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 ago, dementia diagnoses will increase, so "Inside the Dementia Epidemic" is a "must read" book for readers everywhere.
Patricia12 More than 1 year ago
Reading this book was like looking into a mirror of my own life.  I recently read this book and from the very first page I was captivated by Ms. Stettinius' writing.  Her insight, clarity, honesty , knowledge and her ability to put so many emotions into words is amazing.   Not a day goes by that I don't think about what I read inthis book.   There is even an occasional paragraph of humor that is so important when living with a care partner facing this terrible disease. Her continunity and clarity are easy to follow and it's not clinically based.  It is a book that is easy to read and understand.   This book has helped me with many of the decisions and choices I have had to make recently regarding the care of my Mother.   Thank you for such an informative book.  From the preface page with the staggering statistics of this disease it held my interest and compassion for your and your family.
Anonymous More than 1 year ago
Anonymous More than 1 year ago
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.
FriendEP More than 1 year ago
Unlike many memoirs written by a son or daughter in tribute to their wonderful, sweet and talented parent destroyed by Alzheimer’s, Martha Stettinus’s mother was opinionated, difficult, edgy and at times estranged from her daughter.  In her book Inside the Dementia Epidemic, Stettinus details with insightful, honest and at times painful detail her long journey with her mother with dementia.  This book is especially transparent allowing the reader to identify with attributes they may see in or experience themselves as family caregivers:  guilt when they feel they’re not doing enough; denial that their parent is as impaired as others perceive them; anger at needing to intervene setting aside their job, family etc. for someone else; longing for some personal escape from the never ending responsibility of parental care; isolation as daunting decisions rest on their shoulders alone and fear of her mother running out of money and often second guessing difficult decisions.  I can relate personally to some of the weighty issues Stettinus’s dealt with especially denial, financial concerns and especially the impossible to describe feelings of powerlessness and doubt that as the only living “child” you are doing right by your parent, one precarious decision after another