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EXCERPT FROM THE ALZHEIMER'S ANSWER BOOK
What is dementia?
Carl Grant was a partner in a high-powered Manhattan law firm. Two years short of retirement, he found himself struggling with tasks that had once seemed simple. He'd read and then have to reread briefs, at times staring off into space and forgetting what he was doing. He became short-tempered with his secretary, and even accused her of having lost important documents that were later found on his desk, or misfiled in his drawers. In meetings he grew frustrated, needing people to repeat what they'd just said, and having trouble finding the right words.
Where he used to work late hours, he was now frightened of having to drive home after dark, having taken the wrong exit off the highway on multiple occasions. At home, he no longer wanted to get together with friends for bridge. He told his wife Jeanne, "I'm too tired." The truth was that he couldn't keep the cards straight and was afraid that the others would notice. He found himself feeling depressed and thinking that something must be physically wrong. Behind his back his partners grew concerned, and finally confronted Carl and insisted he have a medical evaluation.
Two years later, with his wife, daughter, and son at his side, Carl attended his retirement party, even though he had not come into the office for the past year, after having been diagnosed with early dementia. He smiled and shook hands, although he could not recall the names of most of his colleagues, including his secretary who had been with him for thirty years. He no longer drove, even though he'd often look through the house for his keys. He now spent much of his day in front of the television set, or else would follow his wife around the house, never letting her out of his sight.
Jeanne Grant, a school teacher, made the decision five years before her own scheduled retirement to quit her job and care for Carl at home. As the years passed, it was as though she was watching him move backward in time. She deeply mourned the loss of her husband's quick wit, their physical intimacy, and the travel and social plans the two of them had made for their retirement. At times he could no longer remember her name, and had started to call her "mother." While she often felt burdened, there were still times with Carl where she enjoyed his closeness, his smile, and memories of their prior life. When Carl became unsteady on his feet, she had the downstairs dining room turned into a bedroom and arranged for aides to help with bathing and getting him to adult day care five days a week.
In his final years, she worried about their combined savings holding out, but made the decision to have live-in care, as Carl now required total assistance at meal times and in the bathroom. He spoke little and became easily upset. In the winter Carl developed pneumonia, and with her children's and physician's input she made the decision to not have Carl hospitalized. He died in his own home three weeks later.
Dementia is a broad term that refers to loss of the brain's ability to function in multiple ways in a person who is otherwise awake and alert. It usually includes memory loss, especially for events that have just happened (short-term memory). Dementias range from mild to totally disabling and in most cases they are progressive-they get worse over time. Dementia affects a person's ability to use language (speak, listen, write, read) and complete tasks; it also affects their behavior and emotions. In the final stages of a progressive dementing illness, people are bedridden, they no longer recognize or remember their loved ones, and they cannot perform the most basic functions to care for themselves. There are over a hundred reported causes of dementia, of which Alzheimer's disease is the most common.
How many people have dementia?
In the year 2000, it was estimated that there were 4.5 million Americans living with Alzheimer's. When we factor in all forms of dementia, this number goes up to more than 6 million. As our population ages, unless a cure or improved treatments are discovered, this number is expected to increase dramatically-almost threefold-by the year 2050.
Other developed countries that have studied their rates of dementia have similar findings.
Is all dementia Alzheimer's disease?
No-but Alzheimer's disease, a brain disease caused by destruction of brain cells (neurons), accounts for between 50 75 percent of cases of dementia. This is followed by vascular dementias, including multi-infarct dementia, which is a result of brain damage caused by multiple small strokes, blocked blood vessels in the brain, or through other processes by which the brain does not receive enough blood and oxygen. Other common causes of dementia include Lewy body disease, dementia caused by chronic alcoholism, HIV/AIDS-related dementia, dementia from head trauma, fronto-temporal dementia (refers to parts of the brain most affected), and the dementia that affects roughly 25 50 percent of people who have Parkinson's disease.
Less common causes of dementia are many, and speak to the numerous ways our brains can be damaged, and include dementia as a result of brain tumors and various infections, including one that results from eating meat infected with "mad cow" disease.
Is dementia the same thing as senility?
Yes, the terms dementia and senility both describe the memory loss and behavioral and emotional changes seen in those affected. Over the years different terms have been used to describe the mental decline seen in Alzheimer's disease and other dementias, including senility, senile dementia, organic brain syndrome, and hardening of the arteries. While Alzheimer's disease is a particular cause of dementia, it is sometimes used to refer to all dementia.
Isn't dementia just a normal part of getting old?
There is a myth that Alzheimer's and dementia are a normal part of aging; they're not. These are diseases of the brain that involve damage and cell loss.
If dementia was a normal part of aging we would expect everyone who lived beyond a certain age to develop it, and this is not the case. It's normal for people to retain their mental abilities into their eighties, nineties, and beyond. Even so, a certain amount of forgetfulness and "senior moments" occur normally with increased age and do not necessarily mean the person has dementia.
Who takes care of people with Alzheimer's and dementia?
Approximately two-thirds of people with dementia are cared for by family and/or friends. This type of in-home care is often referred to as informal or unpaid care. The other third are being cared for in institutional settings-nursing homes, convalescent homes, rest homes, and extended-care facilities.
Women are more often the caregivers for people with dementia by a rate of about two to one. Caregivers are typically spouses/significant others, children, daughters- and sons-in-law, other relatives, and friends. The majority of informal caregivers provide at least twenty hours a week of unpaid care and over 70 percent live in the same home as the person they are looking after. As the dementia progresses and people require more supervision and hands-on care, the amount of time involved in the caregiving role can increase dramatically.