In Samuel Shem's classic novel The House of God,1 elderly demented patients were scornfully called gomers—short for "Get out of my emergency room." With apparent disdain for the debilitated elderly, it is not suprising that American society has failed to make elder care a priority in policy as well as in practice. While modern medicine has prolonged life expectancy, it has not made comparable progress in addressing the psychosocial consequences of aging. Unfortunately, the incidence of dementia and other cognitive impairments are predicted to increase as the population ages. By a recent estimate, 4 million Americans will have Alzheimer disease (AD) by the year 2000.2 The impact of AD and other forms of dementia on patients' families and caregivers is substantial and their needs must also be addressed.
The dementia of AD is typically gradual in onset, so insidious that families and afflicted individuals may not recognize the disease until glaring deficits have appeared. Such mental and personality changes contribute to the patient's and family's experience of loss; lifelong identity and social roles are forgotten or invalidated. Caring for patients with dementia has created a whole new category of research—the impact of dementia on patient's families and caregivers.
Families often attribute early signs of dementia to forgetfulness secondary to old age or temporary physical illness. One woman interviewed during my summer research project recalls that she did not realize anything was truly wrong with her husband until she received a call from his workplace of 30 years. Although he had been retired for several years, he appeared at his old office and became angry and agitated when told he no longer worked there. Thus, early AD disrupts the fabric of everyday family life through significant personality changes and behavioral idiosyncrasies. How successfully families and individuals cope with such disruptions depends on their personalities and available support network.
Caring for an individual with AD is a full-time job. The patient often lacks insight about intellectual or physical deficits, requiring close supervision to prevent harm. As dementia progresses, the patient's social role in the family is altered. They may forfeit their autonomy when a child or spouse takes over their responsibilities.2 The patient, in turn, may exhibit frustration and anger, often directed at loved ones. The unpredictable natural course of AD contributes to family role ambiguity. Some family members who live outside the home may withdraw from family interaction as the affected individual's personality changes.
Families often choose institutional placement for the patient with AD when care requirements exceed their capabilities. A common belief is that institutionalization relieves the physical and emotional burden placed on caregivers. However, studies have shown that improvement in caregiver mental and physical health does not always follow.3 Families frequently experience guilt and anxiety about the decision.4 Commuting to the nursing home places additional time commitments on spouses, and distance and cultural objections may further isolate friends and family once placement is made.
In the absence of dementia, self-evaluations by geriatric patients correlate well with the caregiver's assessment of his or her ability to perform activities of daily living. But with the increasing severity of dementia, patients tend to think they are doing better than they really are.5 These findings support earlier evidence that patients with dementia underreport depressive symptoms.6 Finding an accurate method of assessing depressive symptoms in cognitively impaired patients is essential, since depression may be treated with good results.
Depression and dementia coexist in 30% of patients with AD.7 Treating depression is important since depression in AD patients leads to greater mental suffering, earlier institutionalization, and earlier death than does AD alone.7 Behavioral approaches appear to decrease depression, improve self-care, mitigate the fear of progression of the disease, and increase feelings of hope.8,9 Logsdon and Teri10 propose that depression in dementia is secondary to loss of ability to engage in enjoyable activities. Early in the disease, patients often relinquish responsibilities and privileges, such as driving, financial management, and caring for grandchildren. If they work or volunteer, AD may preclude continuing in the same role. Thus, patients with AD experience inexorable loss of responsibilities, control, and status that may have previously defined their self. Clearly, feelings of uselessness and loss of self are prevalent in AD. Yet, little is known how patients with AD adjust to their changing functional and cognitive status. Since AD may not be diagnosed until symptoms have progressed, assessing patient attitudes earlier in the natural history of the disease proves extremely difficult.
Some researchers believe that the lack of insight among AD patients can be traced to frontal lobe and right hemisphere deficits.11 Often, it is this lack of self-awareness that distresses caregivers and family members most, contributing to family and physician disengagement.
In recent years, a new realm of dementia research has emerged that focuses on the effects of caring for a family member with dementia.12,13 Caregivers have an increased incidence of depression and alcohol use.14 The emotional and physical stress of caregiving appears to increase susceptibility to disease. Caregivers have a higher prevalence of physical symptoms and poorer self-rating of health than non–caregivers.15,16
While most research has focused on the wife as caregiver, new research on the effects on husbands and the impact of culture and ethnicity is emerging.17-18,19 Some positive aspects of caring for patients with AD have also emerged with the finding that sibling and parent-child relationships are strengthened.20,21 In addition, new strategies of intervention to reduce caregiver stress and reduce early institutionalization are being developed.22
By the year 2040, 7 million to 12 million patients with dementia will be cared for primarily by spouses or adult children. Nearly half will require complete custodial care before death, sometimes for years.23 As physicians in the 21st century, we must remember the psychosocial factors that optimize care for patients with AD and their families and try to obtain appropriate early intervention.
Perel VD. Psychosocial Impact of Alzheimer Disease. JAMA. 1998;279(13):1038-1039. doi:10.1001/jama.279.13.1038-JMS0401-5-1