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For seven years I have coped with my mother’s dementia. I have cared for her at home, in assisted living, a rehab center, a specialized "memory care" facility, and the dreaded nursing home.
What do we face next?
In my question lies hope. Hope not just for my mother, Judy, but for me, and for you.
The journey I have taken with my mother has alerted me to the latest scientific findings about dementia. Although the facts are frightening, they are our only hope if we wish to emerge with our minds intact from what is now a fast-growing epidemic.
The shocking wake-up call is that this epidemic will also overtake those of us in middle age, unless we can somehow prevent or treat it.
One in eight people over age sixty-five in the United States has Alzheimer's disease, and nearly fifty percent over age eighty-five. In 2012, an estimated 5.4 million people in the United States will have Alzheimer’s disease. As people continue to live longer, and the baby boomers grow older, the number of people with dementia will explode. The 35.6 million worldwide in 2010 is expected to double by 2030 to 65.7 million, and then nearly double again by 2050 to 115.4 million.
Even if we do not get the disease, or if we get it late in life, we are likely to become a family caregiver for someone with dementia. In the United States in 2011, over 15 million family caregivers provided 17.4 billion hours of unpaid care to family members and friends with Alzheimer’s disease and other dementias. This unpaid care was estimated to be worth $210.5 billion, more than the total for federal and state Medicare and Medicaid spending for Alzheimer’s care. Family caregivers often sacrifice their own health and finances to provide that care. A third of family caregivers report feeling depressed, and sixty percent feel extreme stress.
Dementia is not only Alzheimer’s (the most common, at sixty to eighty percent), but a Pandora’s Box diagnosis that includes over one hundred conditions. Familial Alzheimer’s—also called "early-onset" dementia—occurs before the age of sixty, and represents 5-7 percent of Alzheimer’s cases. "Mixed dementia"—Alzheimer’s plus another type of dementia—has been shown in autopsies to occur in up to 45 percent of people with dementia. Vascular dementia alone, of which there are several forms, accounts for up to 20 percent of dementias.
This book is not a lament, however; it is a guide, and, I hope, a means to soften the blow upon all of us. In the course of my own experience, I discovered what could have been done earlier to help my mother, and what can be done now to help us all: Startling scientific findings show that certain changes in diet and exercise—even changes in eye care and sleep patterns—may decrease the risk of developing these diseases. If we are to survive the "silver tsunami," which will overwhelm half the population in the not-too-distant future, we must join the worldwide movement demanding more dementia research. 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 ten without either a means of prevention, a way to slow its progression for more than a few years, or a cure.
Even if by luck or a preventive lifestyle we don’t succumb to dementia, each of us will pay for its treatment. In the United States in 2012, Medicare, Medicaid and out-of-pocket expenditures for Alzheimer’s and other dementia care total $200 billion. By 2050, the projected cost will reach $1.1 trillion. William Thies, Ph.D., the Alzheimer’s Association’s Chief Medical and Scientific Officer, says that "the overwhelming number of people whose lives will be altered by Alzheimer’s disease and dementia, combined with the staggering burden on families and nations, make Alzheimer’s the defining disease of this generation."
Remember those words as you read this book:
"The defining disease of this generation."
The good news is that it is not too late to save yourself, and to learn how to best support your relatives if they already suffer.
By sharing my journey of discovery, as well as the resources I acquired during the past seven years, I hope to help you cope with your afflicted family members and friends. What I’ve learned also might help you save your own sanity.
Over the past few years I’ve inhaled all of the memoirs I could find about dementia caregiving, but most of these memoirs by adult children caring for a parent with dementia either treat the elder as hapless and amusing, which I find disrespectful, or they focus on the extreme stress and craziness of caregiving at home with little support. Few of these caregivers have written scenes in multiple care settings, as I have; few describe how they found adequate assistance; and few offer hope that the caregiving journey can be anything other than a crushing self-sacrifice. They describe dementia itself as a tragic wasting away and a long, painful good-bye—indeed, as the complete erasure of the person who once was. What I have experienced and felt with Mom is different, and I want to share our story.
Related essays on dementia research, dementia risk factors, and planning for long-term care can be found in the appendices.
I have navigated the maze of choices inherent in dementia care, and I can now offer my journey as a guide. With enough support from others, caregiving need not mean a life of constant exhaustion and loss. These years can be both manageable and meaningful—not a "long good-bye" as it’s often described, but a "long hello."
Chapter 1: "Judy"