Category Archives: Consumer Health

Spring books preview: health & medicine

Seasonal catalog cover spring 2016We’re excited about the books we’ll be publishing this spring—and we’re pleased to start off the new year with a series of posts that highlight our forthcoming titles. Be sure to check out the online edition of JHUP’s entire Spring 2016 catalog, and remember that promo code “HDPD” gets you a 30% discount on all pre-publication orders. Today we feature spring books on health and medicine; click on the title to read more about the book or to place an order:


dawes150 Years of ObamaCare
Daniel E. Dawes
foreword by David Satcher, 16th US Surgeon General


Guinan_jkt.inddAdventures of a Female Medical Detective
In Pursuit of Smallpox and AIDS
Mary Guinan, PhD, MD
with Anne D. Mather


grantWhy Can’t I Stop?
Reclaiming Your Life from a Behavioral Addiction
Jon E. Grant, JD, MD, MPH, Brian L. Odlaug, PhD, MPH, and Samuel R. Chamberlain, MD, PhD


goldenOvercoming Destructive Anger
Strategies That Work
Bernard Golden, PhD


trainorCalming Your Anxious Child
Words to Say and Things to Do
Kathleen Trainor, PsyD


noonanWhen Someone You Know Has Depression
Words to Say and Things to Do
Susan J. Noonan, MD, MPH
foreword by Timothy J. Petersen, PhD, Jonathan E. Alpert, MD, PhD, and Andrew A. Nierenberg, MD


grimesSeductive Delusions
How Everyday People Catch STIs
second edition
Jill Grimes, MD


trimbleThe Intentional Brain
Motion, Emotion, and the Development of Modern Neuropsychiatry
Michael R. Trimble, MD


slavney16Psychiatric Polarities
Methodology and Practice
Phillip R. Slavney, M.D., and Paul R. McHugh, M.D.


Use discount code “HDPD” to receive a 30% discount on pre-publication orders for JHUP’s spring 2016 titles.
To order, click on the book titles above or call 800-537-5487.

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Ending medical reversal

Guest post by Vinayak K. Prasad, MD, MPH, and Adam S. Cifu, MD

prasadFor doctors, it is common to have some doubt about a new medical test, procedure or drug—even one which is widely hailed as remarkable or a game changer. It is not cynicism but a healthy skepticism towards marketing over substance. Doctors want to see the evidence that a drug actually works rather than just a good story about why it should work.

Often, however, this skepticism does not last. After a few months, still without any evidence, the doctor finds herself buying in, just a little, to the hype. OK, let me just see what everyone is talking about, she thinks. She begins recommending the drug herself. She still thinks of herself as cautious and conservative—while her colleagues use the treatment widely, she thinks it has a more narrow and defined role. Probably the pill does not work for everyone, but in a select group of people.

A few more years go by, and she gets comfortable with the once-hyped treatment. She now knows how to manage its complications; she thinks she has a good sense of who it benefits; and she considers it a part of her practice.

Then, one day, she opens one of the nation’s top medical journals and discovers that the treatment she was once skeptical of, but slowly grew to accept, simply does not work. A well-done clinical trial, probably the one which should have been done before the treatment even came to market, compared the treatment to the prior therapy, and found no benefit.

Then a patient who is on the treatment comes to the doctor’s office and asks about something he read in the paper. “Look,” he says. “They say the drug just doesn’t work.” He is frustrated and angry but gives his doctor the benefit of the doubt. What exactly does she tell him?

Some may think this scenario is unusual in modern medicine, where drugs and devices are ensured to be safe and effective by the US Food and Drug Administration, but as practicing physicians and researchers, we have found that this story is common. We call this medical reversal, and we see it in the drugs, procedures, medical devices, and diagnostic tests that are used in medicine every day. Medical reversal happens when doctors accept new medical practices without clear evidence that they work. Then these practices are later overturned, shown to be no better—or maybe even revealed to be worse—than the practices they replaced.

The phenomenon of medical reversal is not limited to doctors. Many of us adopt treatments (vitamins, supplements, diets, exercise routines) only to find out later that they are do not deliver what they promise. In Ending Medical Reversal:Improving Outcomes, Saving Lives, we look to understand the problem of reversal by studying why it happens, when it happens, and how, just maybe, it might be lessened or stopped.

Vinayak K. Prasad, MD, MPH, is a practicing hematologist-oncologist and internal medicine physician at the National Cancer Institute. Adam S. Cifu, MD, is a professor of medicine at the University of Chicago. He is a practicing general internist, medical educator, and the coauthor of Symptom to Diagnosis: An Evidence-Based Guide. Their new book from Johns Hopkins, Ending Medical Reversal:Improving Outcomes, Saving Lives, will be published in October.

Read the authors’ articles on this topic in ScienceLife and JAMA-Internal Medicine.

Use promo code “HDPD” to receive a 30% discount when you order your pre-publication copy of Ending Medical Reversal

 

 

 

 

 

 

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September is Ovarian Cancer Awareness Month

September is Ovarian Cancer Awareness Month, and we are especially mindful of the sobering statics related to this disease: more than 20,000 women in the United States are diagnosed with ovarian cancer each year, and approximately 15,000 women die annually from the disease. Later this month, JHU Press is very proud to be publishing the second edition of A Guide to Survivorship for Women Who Have Ovarian Cancer, edited by  Robert E. Bristow, MD, MBA, FACOG, FACS, Terri L. Cornelison, MD, PhD, FACOG, and F. J. Montz, MD, KM, FACOG, FACS. Today on the Blog, we excerpt the book’s introduction by the late Dr. Montz—a powerful, humane essay retained from the first edition, a lasting testament to his career and character.


bristowIntroduction: Essential Concepts
by F. J. Montz, MD, KM, FACOG, FACS

Survivorship

Numerous philosophers have spent numerous hours discussing the “life well lived.” Most of them would agree that the well-lived life is full of love, experiences, sharing, meaningful relationships, accomplishments, and giving to others. As we all progress along this journey, our attempts to live the “well-lived life” are threatened by different forces, both internal (for example, disease) and external (for example, social pressures) to ourselves. Ovarian cancer is only one of many such threats to the life well lived. The sense of betrayal by one’s own body, the strain on relationships, and the physical toll that the disease and its treatments may inflict are some of the challenges that ovarian cancer presents to living life well. Yet it is the deliberate and conscious choice to live life well that allows us to truly survive as we navigate the uncertainties of human life. That is what this book is about: survivorship in the face of, in spite of, and through ovarian cancer.

What do we mean by survivorship? Of course, part of survivorship is just that: outliving the disease and being around long enough to live out one’s natural life expectancy and die of something else. Do you have to be totally free of ovarian cancer to be a survivor? Absolutely not. Does being totally free of any viable cancer cell constitute survivorship? An equally forceful “No.” Many women die from their ovarian cancer within a relatively short span of years or months, but they survive the experience, being mentally, emotionally, and, within certain limits, physically intact. Similarly, we have had numerous patients who have survived the disease, strictly speaking, but whose lives have been in shambles in all other respects. One woman, the one who actually dies from her cancer, is a survivor; the other, the one who lives many years or even decades “disease-free,” isn’t. What makes the difference? The difference is in being in control as much as possible; being as “well,” in all aspects of wellness, as is possible; and finding joy and pleasure in ever having had a life well lived. Our mission, therefore, must be not to avoid death but to live life.

The Reality of Ovarian Cancer

Ovarian cancer can be viewed as three separate diseases. For some women, mainly those with early-stage disease and about 30 percent of women with advanced-stage disease, ovarian cancer is treated once and for all with an aggressive combination of surgery and chemotherapy. The disease is diagnosed, is treated, goes away, and never comes back. Unfortunately, for a small but significant second group of women, the initial treatments fail, and the time from diagnosis to death is short—only months or little more than a year.

For most women, however, ovarian cancer is a chronic disease, one that is treated and goes into remission for a while and then returns, is retreated, goes back into remission, and so on. Eventually, perhaps years or decades from the time of initial diagnosis, the patient will succumb to the disease or to complications of its treatment. With this in mind, a greater emphasis is naturally placed on “what happens along the way,” and the decisions made during these years or decades are enormously important.

Self-Determination

As we emphasize repeatedly in this book, we firmly believe that the patient must be informed, as much as possible and as much as she desires, about the disease and about the treatment options and their side effects and outcomes. We are unshakably committed to patient self-determination. For a woman to determine what she wants, however, she must know what the choices are and what the results of such choices are. It is our obligation, as health care providers, to meet our patients “where they are,” to help them to prioritize their wishes and desires, and to develop individualized goals and agendas, while presenting them with the information they need to make decisions about what they do or don’t want. Only after all these events have occurred can the well-informed patient have true self-determination.

Quality of Life

Another concept we repeatedly focus on in this book is that of quality of life, often abbreviated as QOL. Simply defined, quality of life is how well a person feels about everything she is and everything that makes up her universe. It includes measurable factors such as the amount of pain or physical discomfort she is experiencing, but it is much, much more than that. Emotional, psychological, sexual, spiritual factors—all of them difficult to measure—are part of QOL.

For many of our patients, the nausea, loss of hair, and pain cause less suffering than do certain fears about the future: what is going to happen to the patient’s three-year-old daughter, her frail life partner for whom she is the primary caregiver, or her own soul. Issues of quality of life must be addressed daily, if not minute by minute, when making decisions regarding treatments and other interventions. Many women are willing to trade a marked deterioration in their measurable QOL for a significant chance of a cure or a meaningful prolonging of life; few are willing to do the same for only a few additional months or weeks. Unfortunately, patients often are not informed that they have choices or that QOL can play a role in decision making. We believe that quality-of-life issues are the most important issues our patients face in exercising self-determination. One of our primary goals in our medical practice and in this book is to empower women to wrestle with these issues.


bristowRobert E. Bristow, MD, MBA, FACOG, FACS, is the director of Gynecologic Oncology Services, the Philip J. DiSaia Chair of Gynecologic Oncology, Chief of the Division of Gynecologic Oncology, and a professor of obstetrics and gynecology at the University of California–Irvine. He is the coauthor of Surgery for Ovarian Cancer: Principles and Practice. Terri L. Cornelison, MD, PhD, FACOG, is the associate director for clinical research in the Office of Research on Women’s Health at the National Institutes of Health and an assistant professor of gynecology and obstetrics at the Johns Hopkins University School of Medicine. F. J. Montz, MD, KM, FACOG, FACS, was a professor of gynecology and obstetrics, surgery, and oncology at the Johns Hopkins Hospital and Medical Institutions.

Use promo code HDPD to receive a 30% discount when you place your pre-publication order for the new edition of A Guide to Survivorship for Women Who Have Ovarian Cancer.

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Measles is serious (a history lesson from my Grandmother)

Guest post by Alice Callahan

Today’s post is an excerpt from a longer piece that first appeared on the author’s blog, Science of Mom: The Heart and Science of Parenting.  The blog was the inspiration for her new JHU Press book, Science of Mom: A Research-Based Guide to Your Baby’s First Year.

Measles is back. The outbreak of this highly contagious viral illness that started at Disneyland in December has spread across the country and shows no signs of slowing. As of February 6, the CDC reported 121 cases in 17 states in this year alone, most linked to Disneyland. In 2014, we had 644 cases of measles in the U.S. This is a striking increase compared to the last 15 years, when we usually saw less than 100 cases in an entire year.

I’m sorry that so many people have been sickened in this outbreak and hope that it is reined in soon. This is no easy task given our mobile society and the fact that we like to congregate in places like theme parks, schools, doctors’ offices, hospitals, airplanes, and shopping malls. Add to that the pockets of unvaccinated people where measles can easily spread, and we have a recipe for still more outbreaks until we can improve vaccination rates. In this situation, I particularly feel for those who can’t be vaccinated. Babies under 12 months of age and people who are too immunocompromised to get the MMR vaccine, like cancer patients receiving chemotherapy, are counting on the rest of us to get vaccinated and reduce the spread of this disease. Right now, we’re letting them down.

callahanOne positive outcome to this outbreak is that it has sparked lots more conversation about vaccines. It inspired me to be more public about proudly stating that our family is fully vaccinated. And I wrote an op-ed piece for my local paper, the Register-Guard, about the risk of measles in our community, given the low vaccination rates in our schools.

(Our baby, of course, has so far only received the newborn Hepatitis B dose. He won’t receive the MMR shot, which includes the measles vaccine, until 12 months of age.)

I spent a lot of time researching vaccines last year for my book. The result is an in-depth look at vaccine development, risks and benefits, and safety testing and monitoring. I also cover some specific vaccine concerns, like whether or not we give too many too soon (we don’t) and if we should be worried about aluminum in vaccines (we shouldn’t). (I don’t just tell you these things, though; I break down the science for you.) I read hundreds of papers about childhood vaccines, talked with researchers, and felt more confident than ever about vaccinating my kids on the recommended schedule.

There was one other bit of vaccine research that may have been the most meaningful to me: I flew to Florida to interview my grandmother, now 90 years old. She raised seven children before most of today’s vaccines existed. She was a mother during the 1952 polio epidemic that killed 3,145 and paralyzed more than 21,000 people in the U.S. She was having her babies before a vaccine for rubella was available. That disease caused 11,250 miscarriages, 2,100 stillbirths, and 20,000 children to be born with birth defects in a 1964–1965 outbreak in the U.S.

Three brothers (from left to right): Richard (the author's father), Frankie, and Larry Green, circa 1953, in Princeton, New Jersey. Frankie died in 1956, at age 6, of encephalitis caused by measles. Photo by Margaret Green, used with permission.

Three brothers (from left to right): Richard (the author’s father), Frankie, and Larry Green, circa 1953, in Princeton, New Jersey. Frankie died in 1956, at age 6, of encephalitis caused by measles. Photo by Margaret Green, used with permission.

My grandmother also nursed her children through the measles. Before the vaccine, nearly every child suffered through a case of measles at some point in childhood. During the current measles outbreak, I’ve seen some comments downplaying the seriousness of this disease. After all, most kids did survive measles without long-term consequences. However, many didn’t. Among those who didn’t survive was my grandparents’ second child, Frankie. In 1956, at the age of 6, he died of encephalitis, or inflammation of the brain, a complication of measles.

* * * * * *

We live in a privileged time. Just a few generations ago, our grandparents had no choice but to nurse their children through painful diseases, knowing there was a chance of serious complication and even death. Worldwide, measles still killed 122,00 people in 2012, mostly in parts of the world with limited access to the vaccine.

But here in the U.S., our generation of parents has a choice. We get to choose whether or not to vaccinate our children. And oh, how we treasure that choice. The trouble is that we’re so far removed from the pre-vaccine era that we can make the mistake of ignoring the stories of our grandparents and great-grandparents, stories of kids like Frankie. And we can make the mistake of believing that we make our choices in a vacuum. When we’re talking about infectious diseases, nothing can be further from the truth. Sure, a few can choose not to vaccinate, in addition to those who have a medical reason not to, so long as the rest of us do our part to maintain herd immunity. However, when too many make that choice, the disease regains its strength, and its first victims are often the most vulnerable.

I wrote most of this post while holding my 7-week-old baby boy. He is fighting his first cold right now. It’s just your run-of-the-mill cold virus, but his nose is filled with snot, and he has a sad little cough. I know he’ll be better soon, but I hate to watch him suffer. Mothers and fathers will always be nursing their babies through illness, but I’m glad to be a parent in the vaccine era, when herd immunity and my baby’s own immunizations can protect him from the worst of the world’s infectious diseases. Let’s hope we can keep it that way.

Alice Callahan holds a PhD in nutritional biology from the University of California, Davis, and is the author of Science of Mom: A Research-Based Guide to Your Baby’s First Year. She spent two years investigating fetal physiology as a postdoctoral scholar, and, after giving birth to her first child in 2010, she put her scientific training to work answering the big questions about caring for a baby. The creator of the blog Science of Mom: The Heart and Science of Parenting, she writes and teaches in Eugene, Oregon.

 

 

 

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Fall books preview: health & medicine, part one

Fall 2015 very largeWe’re excited about the books we’ll be publishing this fall—and pleased to share this series of “Fall Books Preview” blog posts! Be sure to check out the online edition of JHUP’s entire Fall 2015 catalog, and remember that promo code “HDPD” gets you a 30% discount on pre-pub orders. Today we offer the first of two posts highlighting our forthcoming books in health and medicine:


millerFinding Your Emotional Balance: A Guide for Women
Merry Noel Miller, MD

Women are twice as likely as men to become depressed. While they seek help for mental disorders more often than men, they also seek to help others, trying to keep everyone happy while taking care of parents, spouses, and children. Sometimes, doing it all is doing too much. Dr. Merry Noel Miller offers women of all ages advice for coping with life’s challenges while increasing its joys. Drawing on her three decades of experience as a psychiatrist specializing in women’s mental health—as well as her own personal struggles with depression and grief—she explains the special vulnerabilities and strengths of women during adolescence, the childbearing years, menopause, and late in life.

“Miller combines clinical insights with her own personal experiences to provide a practical, well-written, and interesting guide for women. This is the only book of which I am aware that tackles the subject of psychiatric disorders and symptoms across the lifespan for a general audience. I will recommend it to my patients.”—Jennifer L. Payne, MD, Women’s Mood Disorders Center, Johns Hopkins Hospital

Available in December


callahanThe Science of Mom: A Research-Based Guide to Your Babys First Year
Alice Callahan, PhD

In this friendly guide through the science of infancy, Science of Mom blogger and PhD scientist Alice Callahan explains how non-scientist mothers can learn the difference between hype and evidence. Readers of Alice’s blog have come to trust her balanced approach, which explains the science that lies behind headlines. The Science of Mom is a fascinating, eye-opening, and extremely informative exploration of the topics that generate discussion and debate in the media and among parents. From breastfeeding to vaccines to sleep, Alice’s advice will help you make smart choices so that you can relax and enjoy your baby.

“Finally, someone has brought some science—and some sense—to the mommy wars. Should be required reading for all new (and old) parents.”—Emily Oster, Brown University, author of Expecting Better: Why the Conventional Pregnancy Wisdom Is Wrong—And What You Really Need to Know

“Alice Callahan has written a breakthrough book, combining the compassion, warmth, and angst of a mother with the measured reasoning of a scientist. She helps parents not only understand how science works, but how they can access that science to answer their questions. She’s found a way to access the scientist in all of us.”—Paul A. Offit, MD, The Children’s Hospital of Philadelphia

Available in August


raoThe Traumatized Brain: A Family Guide to Understanding Mood, Memory, and Behavior after Brain Injury
Vani Rao, MBBS, MD, and Sandeep Vaishnavi, MD, PhD
foreword by Peter V. Rabins, MD, MPH

In The Traumatized Brain, neuropsychiatrists Drs. Vani Rao and Sandeep Vaishnavi—experts in helping people heal after head trauma—explain how traumatic brain injury, whether mild, moderate, or severe, affects the brain. They advise readers on how emotional symptoms such as depression, anxiety, mania, and apathy can be treated; how behavioral symptoms such as psychosis, aggression, impulsivity, and sleep disturbances can be addressed; and how cognitive functions like attention, memory, executive functioning, and language can be improved. They also discuss headaches, seizures, vision problems, and other neurological symptoms of traumatic brain injury.

“This book will challenge and encourage the reader. Whether an interested lay person, a caretaker, a family member, or a professional in the medical, nursing, or social work fields, readers will find this pioneering book a useful guide to the complexities of traumatic brain injury.”—From the Foreword by Peter V. Rabins, MD, MPD, Johns Hopkins University School of Medicine, coauthor of The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life

Available in November


prasadEnding Medical Reversal: Improving Outcomes, Saving Lives
Vinayak K. Prasad, MD, MPH, and Adam S. Cifu, MD

Medical reversal happens when doctors start using a medication, procedure, or diagnostic tool without a robust evidence base—and then stop using it when it is found not to help, or even to harm, patients. Drs. Prasad and Cifu narrate fascinating stories from every corner of medicine to explore why medical reversals occur, how they are harmful, and what can be done to avoid them.

“An outstanding, genre-defining work, this book will be read by students, educators, policymakers, scientists, scholars, medical skeptics, and health-care pundits alike.”—John Henning Schumann, MD, host of Public Radio Tulsa’s Medical Matters

“An important book that frames medical reversal in a compelling way. Readers will be drawn to this clearly written account.”—David S. Jones, MD, Harvard University, author of Broken Hearts: The Tangled History of Cardiac Care

Available in November


thuvulathHepatitis C: A Complete Guide for Patients and Families
Paul J. Thuluvath, MD, FRCP

This book is a comprehensive guide to hepatitis C, which affects about 3 percent of the world’s population—3 to 4 million people in the United States alone. Some people with acute hepatitis C infection will be cured without any treatment, but when hepatitis C becomes chronic it may cause cirrhosis, liver cancer, and death. World-renowned gastroenterologist and liver specialist Dr. Paul J. Thuluvath provides detailed information about the disease and its diagnosis and management, including dramatically improved treatments that have recently emerged.

“Superior to similar guides. Incredibly thorough and well-written, the book provides novel information for patients and providers alike.”—Sammy Saab, MD, MPH, AGAF, Pfleger Liver Institute

Available in October

 

 

 

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Diagnosis and shades of grey

Guest post by Annemarie Jutel

Diagnoses are by their very nature well-defined categories. That’s what a diagnosis is: a label for grouping things that are more like X than like Y. It’s influenza, not pneumonia, or it’s rheumatoid arthritis, not multiple sclerosis, and so on. If we didn’t group symptoms and give them diagnostic labels, we would be required to treat each case of sickness as idiosyncratic, or specific to the individual. It would limit the progress we could make in recognizing similarity and looking for treatment. Do we treat this case of aching bones, fever, and headache with this remedy, and that case with that remedy? No, we would like to say that the labels we assign to disease profiles point us towards answers. With a diagnosis, we can assign a treatment, predict a prognosis. But diagnoses aren’t always that clear cut. There are “typical” cases and “atypical” cases of all diseases, but diagnostic tests/diagnosticians are supposed to be able to cut through the fluff to find the medical classification which best fits a given presentation.

One case in point that has received some recent airing in the media is ADHD. While the point of this blog post is not to question the increase of ADHD diagnoses, the relationship between the pharmaceutical industry, and the medicalization of childhood, there is much to be said about this particular diagnosis. One Baltimore doctor noted the high incidence of ADHD diagnosis in her low-income patients and questioned whether these patients were demonstrating trauma reactions, instead of ADHD. Was the patients’ impulsivity the result of a stress response instead of ADHD?

Her concerns about where the line should be drawn and what diagnosis the symptoms are in aid of underlines just how fuzzy the boundaries between different diagnoses, between health and illness, normality and deviance, can be.

“Ah,” you might muse. “That’s always the way with behavioural/psychiatric diagnoses!” And you’d be correct. Psychiatric diagnoses often guard the boundary between normal and abnormal, disease and dysfunction. As my respected colleague Phil Brown once said, psychiatric diagnoses are “low-hanging fruit for the sociologist of diagnosis.”

But these same fuzzy boundaries are present even in the most material of physical diagnoses. What we’d like to think of as the cold, hard reality of disease is often nothing more than our attempt to put boundaries around something that would be easier to manage or confront if it fit into a tidier box. Take a look at my article “When Pigs Could Fly: Influenza and the Elusive Nature of Diagnosis”, which was published in Perspectives in Biology and Medicine. In it, I argue that even very material, physical diagnoses like influenza are far less concrete than their taxonomies suggest. This essay presents influenza as a case study in the elusive nature of the diagnosis and in its complicated realities. Using the metaphor of boundary transgression, I reveal the fluidity of diagnosis and the paradoxes presented by the naturalization of diseases.

Influenza is a “real” virus, yet it changes shape and profile. It’s something we’d all recognise if we “caught” it, yet studies show we’re dreadful at self-diagnosing it. We thought we knew what the typical symptoms of influenza were, but when we ask people to describe their cases, there’s not much in common in their descriptions. We even give it a nickname (flu) that doctors use as often as lay people, as if to suggest we know it intimately. We don’t really.

The presumption that diagnoses are tidy and neat and that they can always explain what ails us is risky business. Diagnoses are technical tools of classification, and play a very helpful role in generalizing. Generalize we must in order to improve both public and individual health. However, remembering that diagnoses have porous boundaries, and that by generalizing similarity we necessarily obfuscate difference, is helpful to understanding challenges to both public and individual.

Jutel, Putting a Name to ItjutelAnnemarie Goldstein Jutel is an associate professor at Victoria University of Wellington. She is the author of Putting a Name to It: Diagnosis in Contemporary Society and the coeditor of Social Issues in Diagnosis: An Introduction for Students and Clinicians.

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“Still Alice” reminds us to remember the challenges facing the caregiver

Guest post by Laura Wayman,  The Dementia Whisperer

In the film Still Alice, Alice Howland is a linguistics professor who endures, at the unusually young age of 50, dementia symptoms caused by a form of young onset Alzheimer’s that runs in her family. Although this type of Alzheimer’s is rare, the dementia symptoms are the same as the more common form of the disease with which more than 5 million older Americans are living.

This movie poignantly portrays Alice as she struggles with the painstaking loss of herself, including her career, individuality, cognition, and connection to the world around her with disturbing swiftness.

Watching the movie, I was primarily transfixed by the impact Alzheimer’s had on those around her as Alice faded into the darkness of dementia, specifically the effect on her three grown-up children (also at risk of the disease, which is 100% passable to offspring) and the emotional devastation experienced by her grieving husband.

Of course, every family and situation is different. If you are a caregiver, you may have been thrust into this caregiving role unexpectedly—without any training or even any encouragement. Perhaps the care is being provided at home, with or without other family or professional in-home support. Or maybe the care is provided in a specialized memory care unit, an assisted living environment, or a skilled nursing facility. Although caregiving is often inspiring and rewarding, it can also be difficult and challenging. And caring for someone with cognitive impairment can be much more difficult than caring for someone with a physical impairment who is full competent mentally and emotionally. The complications of confusion, forgetfulness, and memory loss, and the behaviors that go along with them, can be traumatic for the person with the disease and for the person providing care. Because of the dementia, neither the person involved nor the relationship will ever be the same

This disease is not just destructive to the person diagnosed with Alzheimer’s but also forever alters what family members have come to know, expect, and adore about their loved one over the years: those individual expressions and ways of interacting with which we become lovingly familiar with. The disease takes away pieces of our loved one, sneaking up little by little until family members can no longer recognize the person or the cherished relationship any more. And the toll on these family members is shattering, yet there is no end in sight, no cure, no prevention, and no way to effectively slow it down.

As The Dementia Whisperer, my mission is to provide you and all those who are caring for a loved one with any form of dementia support in the way of education, inspiration and encouragement along this challenging journey of dementia care. We are all so focused on the most horrific illness of our time (and well we should be) and the ruinous effect on those diagnosed with one of the over seventy estimated causes of dementia that we often overlook the long ranging damage inflicted on the family caregiver: the real hero of the “Alzheimer’s Generation.”

Caring for a person with dementia brings with it much more work (and stress) than caring for someone with other types of illnesses. It can be a long journey, and if caregivers do not take time for themselves, they will not be around to take care of the person with dementia. The following is the story I often share about my mother, Peggy, and is a classic example of the devastating effects of caregiver stress. She was thrust into the role of caring for my father, who was diagnosed with Alzheimer’s. When my father’s health began to fail and he began to present memory loss and other signs and symptoms of dementia, my mother stepped into the role of being his full-time caregiver. Some of her friends had been caregivers of spouses with dementia and she had witnessed what a hard and stressful job it was. I offered to help, but my mother insisted she was okay, and would alert me if his condition became unmanageable. However, in spite of this, disaster struck. One night, after two years well into the care journey, my mother and father sat down to dinner together. They were alone in their home. My mother suffered a massive heart attack. My father’s reactions to this emergency were slowed by his dementia, which was far more advanced than anyone realized. By the time help was summoned, my mom was already gone.

If only I had learned how the overwhelming stress of caring for a loved one devastates the primary family caregiver who selflessly takes on too much, refusing to ask for or accept help. This personal experience has driven my passion for education to all caregivers, both family and professional, in the awareness for caring for themselves, along with the tips and tools to assist them in effectively caring for adults with any form of dementia. My vision is to bring light into the darkness of dementia through support, encouragement, education, and hope. My book,  A Loving Approach to Dementia Care, is a special guide, filled with respect, calmness, creativity—and love.

WaymanLaura Wayman holds an associate in arts degree in gerontology and is a certified social services designee. She has over a decade of experience in and a strong dedication to quality aging. She is the director of dementia education and services for Comfort Keepers (Sacramento). the CEO of The Dementia Whisperers, Inc., and a sought-after speaker on issues of aging.

 

 

 

 

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