The syndrome of dementia is an irreversible decline in cognitive abilities that causes significant dysfunction. Like most syndromes, dementia can be caused by a number of diseases. In the 19th century, for example, a main cause of dementia was syphilis. Currently, as a result of dramatic increases in average human life expectancy, dementia is caused primarily by a number of neurological diseases associated with old age. Dementia is distinguished from “pseudodementia” because the latter is reversible—for example, depression, extreme stress, and infection can cause dementia, but with treatment, a return to a former cognitive state is likely. Dementia is also distinguished from “normal age-related memory loss,” which affects most people by about age 70 in the form of some slowing of cognitive skills and a deterioration in various aspects of memory. But “senior moments” of forgetfulness do not constitute dementia, which is a precipitous and diseaserelated decline resulting in remarkable disability. Since 1997, a degree of cognitive impairment that is greater than normal age-related decline but not yet diagnosable as dementia has been labeled “mild cognitive impairment,” or MCI, with about a third of those in this category “converting” to dementia each year. These cognitive conditions from normal age-related forgetfulness to dementia form a continuum. Specialized clinics that were once called Alzheimer’s Centers are increasingly changing their name to Memory Disorders Centers in order to begin to treat patients at various points along the continuum prior to the onset of dementia.
Although dementia can have many causes, the primary cause of dementia in our aging societies is Alzheimer’s disease (AD). Approximately 60% of dementia in the American elderly and worldwide in industrialized nations is secondary to AD. About two thirds of those with AD are women. This is because women in industrialized countries tend to outlive men, and age is the most significant risk factor for AD. It is also the case that women’s brains may be adversely affected by diminished estrogen levels. One epidemiological study in the United States estimated that 47% of persons 85 years and older (the “old-old”) had probable AD, although this is considered somewhat inflated. Epidemiologists differ in their estimates of late-life AD prevalence, but most studies agree roughly on the following: about 1-2% of older adults at age 60 have probable AD, and this percentage doubles every 5 years so that 3% are affected at age 65, 6% at age 70, 12% at age 75, and 24% by age 80. While some argue that those who live into their 90s without being affected by AD will usually never be affected by it, this is still speculative. According to a Swiss study, 10% of nondemented persons between the ages of 85 and 88 become demented each year. There are very few people in their late 40s and early 50s who are diagnosed with AD. Without delaying or preventive interventions, the number of people with AD, in the United States alone, will increase to 14.3 million by 2050. These numbers represent a new problem of major proportions and immense financial consequences for medicine, families, and society.
AD family caregivers are predominantly women across the world. In many countries, like Japan, it is even assumed that the daughter-in-law married to the oldest son will take on caregiving duties for her motheror father-in-law. In other societies, the youngest daughter in a family has often had to sacrifice marriage and other plans to stay home and care for aging parents. About 80% of family caregivers in the United States are women.
Men tend to focus on indirect forms of care, such as managing finances and other needs that do not involve direct caring. This is especially significant for women’s health because AD caregivers are typically under stress, and studies show high susceptibility to stress-induced caregiver illnesses such as depression. Financially, women who care for their husbands will be impacted by Medicaid “spend down” policies, which require an expenditure of the couple’s assets before qualification for assisted living or nursing home benefits. This contributes to the feminization of poverty.
Filial duties between an adult child and a parent raise complex ethical questions. That women are assumed to have these duties in the sense of demanding everyday care, and must therefore bear the brunt of caregiver stress, suggests that men must learn to accept a more engaged caregiving role.
Women have especially high stakes in many aspects of AD care and policy. They are deeply impacted by policies that preclude federal support of respite care for family caregivers. Women will be especially affected by successful research into treatments for AD, as well as in the ethical policies surrounding treatment decisions and end of life. Because there are more women than men in nursing homes, they are impacted more significantly by nursing home policies. Women do most of the direct caring, and they are at greater risk of AD. Thus, this is a disease with clear feminist implications.