Barry Gurland, director of geriatric psychiatry at Columbia University and an expert on dementia’s clinical course, thinks the intellectual losses that occur as this dreadful condition advances are like peeling an onion. As time goes by, each cognitive milestone is stripped away in the reverse of the order in which it was attained. So first a person loses the mental skills acquired in adolescence – complicated abstract thought – then what was learned in elementary school – reading, the ability to add and subtract. Finally, the milestones reached at ages two and one are gone – dressing, forming sentences, going to the toilet.
Another expert on dementia’s clinical course, Penn State psychologist Steve Zarit, believes this analogy is misleading.  In his experience, not everyone changes in this lockstep way. Some people never become incontinent. Others, while unable to control their bladder or bowels, may retain even complex skills if they were passionate pursuits before the disease struck. A gourmet cook might still prepare meals even though she can no longer remember her husband’s name. A concert pianist may continue to play even though he needs help getting dressed. Zarit’s research shows that the disease often has an emotional course too. In the middle stages of the illness, very difficult behavior such as aimless wandering, or night waking or intense hostility toward loved ones tends to erupt. As more abilities are lost, people tend to quiet down. Ironically, in interviewing spouses caring for Alzheimer’s patients, Zarit and his colleagues found that as the illness reached its final stages, caregivers paradoxically found it easier to cope, largely because when the deterioration became profound the disruptive behavior abated.
Not everyone develops these difficult symptoms when the disease is in its middle stages. For instance, in tracking people with Alzheimer’s disease, University of Washington researchers found that only about 10 to 15 percent of their subjects ever became severely agitated or abusive. When people do lash out at loved ones – accusing a husband or wife of poisoning them, disowning a caring daughter or son – the reason is physical, not personal. The disease is destroying areas of the brain involved in modulating the emotions. It is not laying bare the true self or real feelings. Out real self is the one we have when out faculties are intact.
Perhaps the most heartbreaking aspect of this illness, however, is that we cannot predict how rapidly it will progress. Some people get worse very quickly, becoming unable to understand the basics of life within a few months after they are diagnosed, others may stay at about the same mental level for years. On average, people live a few years from the time they are diagnosed. But some die within six months and, with excellent care, others can live twenty years. So planning for the future becomes difficult, as a family either prays that the loved one will not get worse or yearns for the death that will end the pain.
Though dementia is a leading cause of death, the brain impairment itself is not what directly kills. In fact, at the 1986 annual meeting of the Gerontological Society of America, doctors from the Jewish Institute for Geriatric Care in New York reported that the Alzheimer’s patients were healthier than the average older person their health center served. As the illness Progresses, physical problems related to the mental losses arise that do cause death. A man may forget to swallow and choke on a piece of food; a woman may develop pneumonia from months of being in bed.
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