Introduction
NO AFFLICTION OF OLD AGE is more likely to be treated ineffectively than dementia. The onset of dementia is gradual, complicated, and subtle. Successfully addressing medical and behavioral needs requires finesse. Sadly, too often, the effort is unsuccessful.
I know about this firsthand. After graduating from the University of Virginia Medical School and completing a residency at Harvard, I worked as a primary care physician for seven years. One day, an older man came into my clinic complaining of chest pain. I tried to do an electrocardiogram to check his heart, but the man started hitting everyone within reach. He was out of control. I had to ask the staff members to take him away. It bothered me that I didn’t know what to do.
The incident inspired me to do a fellowship in geriatrics—medicine for elders—at Mount Sinai Medical Center in New York City, one of the world’s leading centers for research on treating people as they age. I focused on the mental health problems of old age. After finishing my specialty training in geriatrics, I became an assistant clinical professor at the University of California at San Francisco (UCSF). But while UCSF is one of the top ten medical research centers in the country, I found that academic medicine didn’t suit me, that clinical care was my passion. I wanted to have more freedom to direct that care and more opportunity to teach the techniques that I had learned at Mount Sinai. Now I knew how to handle an elder who becomes uncontrollably violent at the prospect of a routine test. Even more important, I knew how to prevent the outburst in the first place.
I left UCSF fourteen years ago to form my own independent practice, ElderConsult Geriatric Medicine, specializing in house calls for older patients. I also served as medical director of a hospice providing end-of-life care. Education and outreach had become increasingly important to me. Doctors usually give talks to other doctors. I wanted to spread awareness in the community, to let lay people know about alternative ways of treating the mental health problems of old age, especially agitation, depression, and psychosis. I advocate using sedating drugs as little as possible. I emphasize behavior modification and lifestyle changes.
As a society, we tend to both undermedicate and overmedicate: giving too many tranquilizers to some patients while not addressing the pain or disruptive and irrational behavior of others. We are loath to take decision-making power from our elders, and we have imperfect tools to measure whether a person has “capacity”—the ability to run his or her own affairs.
The result is that many elders with early dementia suffer some kind of psychological, physical, or financial abuse. Then, when we do step in to manage our elders’ lives, some of us take too much power, forgetting to allow them the freedom to choose what they eat, what they do, or whether they want to have a romantic partner.
Even more commonly, dementia treatment is nonexistent: Only one in five of those with symptoms of dementia have been diagnosed, according to testimony before the United States Senate.
Even when they’re on the case, families, caregivers, and health professionals often find it difficult to assemble all the necessary information or resources to address the complete picture. Families may exhaust themselves—both physically and financially—caring for a demented relative, unaware of the many kinds of support available. Caregivers may grow frustrated, unaware that very simple adjustments to daily routines can sometimes make all the difference for a dementia patient.
At some time in our lives, almost all of us will have to cope with these vexing problems. About 10 percent of people over age sixty-five suffer from failing brain function. After age eighty-five, that figure rises to approximately 50 percent, according to the Alzheimer’s Association. Alzheimer’s is the fifth-leading cause of death among people aged sixty-five and over, according to the organization’s data. And while other major causes of death have decreased in recent years, the incidence of mortality due to Alzheimer’s has risen 46 percent. This doesn’t even take into account other causes of dementia, such as alcoholism, Parkinson’s disease, or small strokes.
So perhaps it’s not surprising that, again and again, I have met patients and families struggling to deal with the problems created by faltering mental function. And again and again, I have seen families completely overwhelmed—exhausted to the core, unsure where to go for information, and unable to untangle the intertwining medical, psychological, interpersonal, legal, and practical knots created by a loved one whose ability to think is failing.
It is possible for elders and their families to live fulfilling lives after a dementia diagnosis. I decided to write this book to give families a straightforward map and toolbox for the road ahead.
Before beginning any journey, you need to have some idea of where you are and how you got there. Then you can see where you’re going. You can see your goals and what help you need to achieve them. Only then is it possible to survive, and even thrive, on this path. This book will give you what you need to do just that.
Anyone who’s faced a medical or family crisis knows that during the first few months, the learning curve angles straight up. There is so much new information to absorb: new terms, new resources, new options, new questions, new processes. Dementia is both a medical crisis and a family crisis, and it strikes at the core of identity and relationships. That makes the affliction even more challenging.
A quick click around online or a browse through the local bookstore shows there’s no shortage of books about aging and dementia. Some purport to hold the key that will lock out old age indefinitely. Hefty medical tomes outline advances in dementia research. Poignant memoirs bring on the tears. One man even chronicled his own descent into dementia. Giant overviews published by groups like the Alzheimer’s Association or the . . . for Dummies book series cover just about everything you could ever want to know about the current state of dementia treatment. Several doctors have written books offering their point of view on the subject of aging and cognitive decline. All these works have their place, and I include a list of suggested titles and online resources for further reading at the end of this book.
However, I believe that in the midst of a crisis—in the first days, weeks, and months before and after a dementia diagnosis—families don’t need emotive memoirs, encyclopedic medical explanations, or magical thinking. Since four out of five dementia patients live at home—and caring for these people is more than a full-time job—neither patients nor families have a lot of time for reading.
What’s been missing is a concise, easy-to-digest overview of what you’ll need to know for the months and years ahead. You want practical advice on just getting through the day. You need a smart reference for what to do right now, rather than spending hours flipping through pages and pages of details to identify the right one. That’s what this guide does.
You also need to recognize that while dementia is a discrete medical condition, it affects the whole person and the whole family. Therefore, I believe that treatment should be holistic, with practical steps that take in all of life, from bank accounts to bathing and from depression to dental care.
Too often, when a dementia patient is suddenly violent or inappropriate or in danger of making a disastrous financial decision, various professionals discount these problems as “not part of dementia” or “something that must be endured” or “the elder’s right to be foolish.” Often, many of these problems can be solved by recognizing the signs of early dementia, by determining what care plan and team are needed, and by considering whether an adjustment of a medication is appropriate.
This means understanding what drives odd behaviors in dementia. It means working with the elder, not insisting that he or she faces the calendar that says it is a Wednesday in May. It means understanding what the world looks like to these elders and helping them with compassion and patience to navigate the bewildering world that this disease has made their reality. When all else fails, I strongly believe in using medications to treat the behavioral problems of dementia. This point of view remains controversial. But I have seen it work for patient after patient. Some of the families of these patients tell their stories in this book.
Families and patients also need reason for optimism. I fervently believe that dementia is a challenge that patients and families can meet with success. Dignity, grace—even joy—are still possible with the relevant information and an integrated plan.
All this requires preparation for the long haul. Dementia rarely runs its course in a year. Sometimes it may go on for a decade or more. Each situation has its own story, its own subtleties, and its own challenges. Dementia isn’t as straightforward as a broken bone or a heart attack. Strange things can happen: A once-adoring spouse can turn violent and paranoid. A once-confident professional may suddenly suffer from crippling anxiety. A once-efficient executive may stop paying her bills or make loans without paperwork, giving away large amounts of money to unscrupulous family members and outright strangers.
Families need access to key facts about how the brain works and how different kinds of dementia lead to different behaviors. They need to know the early signs of dementia. They need to know how dementia is diagnosed and how it is treated. They need to understand how the world looks and feels to a dementia patient. They need practical advice on day-to-day living. They need to know the importance of putting their family’s legal and financial house in order. They need to know the signs of elder abuse. They need to know how to find options for the support and care of both family and patient. They need to know how to judge whether a facility or a caregiver or a program is right for their loved one.
This book will cover these basics in short, easy-to-find, and easy-to-understand sections. It will outline the most common issues and resources. It will detail concrete steps to help you through the process in an integrated, holistic way. These are the things I would like every patient and family to know from Day One.
No book on such a vast topic can be all-inclusive. This guide shouldn’t be considered as direct advice on medical matters, financial planning, or case management. What it can do is help you to ask the right questions of doctors, elder care lawyers, care managers, caregivers, physical therapists, occupational therapists, facility managers, and other professionals. It should give you the tools to determine the right solutions for your unique situation.
Let’s get started!