The Neuropsychology of Degenerative Brain Diseases

By Robert G. Knight | Go to book overview

Chapter 9
CAREGIVER BURDEN

Few other disorders place so much stress on families as dementia. Caregivers routinely report stress-related symptoms such as anxiety, depression, or feelings of fatigue. They are often angry and resentful, feel guilty about not doing enough, even though they may spend 24 hours a day with the patient. The stresses they experience have many sources. Often they must take over tasks that the patient can no longer do, such as housekeeping or dressing the patient. They must keep vigilant watch over the patient; and often they must cope with the patient's specific behavioral disturbances, such as wandering around or not sleeping at night. Moreover caregivers often experience a great sense of personal and psychological loss as they see their relative gradually decline. Often the care they must provide demands all their time. ( S. H. Zarit, Orr, & J. M. Zarit, 1985, p. 69)

There can be few more demanding occupations than caring for a person with dementia; indeed S. H. Zarit et al. ( 1985) called the families of patients with dementing disorders the "hidden victims" of the disease. Estimates of the prevalence of DAT amongst people over the age of 65 ranges from about 2 to 6 cases per 100 population. Because prevalence increases with age, the number of cases is steadily increasing as the proportion of people in developed countries surviving to later life increases. It has been estimated that the number of people in the United States over the age of 65 will double between 1985 and 2020. Based on current prevalence estimates there were perhaps 1.35 million persons with Alzheimer's disease in the United States in 1985; to this could be added the significant percentage of people with other dementing illnesses, particularly vascular dementia. The number of cases of dementia can be expected to at least double by the year 2020. For each of these people there will need to be institutional support and informal family care. It is little wonder that AD has been described as the coming silent epidemic (e.g., Henderson, 1983). In addition to the problem of the increasing number of elderly people and cases of dementia, demographic trends predict that there will be proportionately fewer younger productive workers supporting elders in retirement. This factor will also create the

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