Cross-sectional and longitudinal analyses were carried out to assess the relationship between dementia patient suffering, caregiver depression, and antidepressant medication use in 1222 dementia patients and their caregivers. We assessed the prevalence of 2 types of patient suffering, emotional and existential distress, and examined their independent associations with caregiver depression and antidepressant medication use when controlling for sociodemographic characteristics of caregivers and patients, cognitive and physical disability of the patient, the frequency of patient memory problems and disruptive behaviors, and the amount of time spent caring for the patient. Multiple linear regression models showed that both aspects of perceived patient suffering independently contribute to caregiver depression (emotional distress: β = 1.24; P < 0.001; existential distress: β = 0.66; P < 0.01) whereas only existential suffering contributes to antidepressant medication use: odds ratio = 1.25 95% confidence interval, 1.10-1.42; P < 0.01. In longitudinal analyses, increases in both types of suffering were associated with increases in caregiver depression (emotional distress: β = 1.02; P < 0.01; existential distress: β = 0.64; P < 0.01). This is the first study to show in a large sample that perceived patient suffering independently contributes to family caregiver depression and medication use. Medical treatment of patients that maintain or improve memory but do not address suffering may have little impact on the caregiver. Alzheimer disease patient suffering should be systematically assessed and treated by clinicians.
Keywordssuffering; dementia; caregiving; depression; anti-depressant use Illness and disability in a close relative is a major source of distress for family caregivers, frequently compromising their health and well-being. [1][2][3] Emotional distress, burden, impaired self-care, and increased biologic vulner-abilities are commonplace among caregivers. 3 The negative effects of caregiving are typically attributed to a variety of patient illness-related Copyright © 2008 factors, including functional disability, cognitive impairment and confusion, problem behaviors, and the care demands engendered by the illness. Clinicians would also emphasize that patient distress or suffering plays a role in this process as well, but little attention has been paid to this construct in studies on family caregiving. The notion of suffering may be implicit in existing conceptualizations of illness and disability, but empirical research has not focused on patient suffering as a unique and independent contributor to caregiver outcomes. The purpose of this article is to provide evidence-based support for the importance of suffering in understanding the effects of patient illness and disability on caregiver outcomes.Suffering is a broad construct defined as a state of distress associated with events that threaten the intactness of the person as a complex physical, social, psychologic, and spiritual being. [4][5][6] Some ...