ABSTRACT
PURPOSE: This study examined the decision-making capacity of persons with cognitive impairment with respect to their everyday care preferences and choices. This is the first in a series of articles to report on findings from a larger study that examines choice, decision making, values, preferences, and practices in everyday care for community-dwelling persons with cognitive impairment and their family caregivers. DESIGN AND METHODS: Fifty-one respondent pairs, or dyads, were interviewed, that is, persons with cognitive impairment (n = 51) and their family caregivers (n = 51). All persons with cognitive impairment were interviewed twice within a week using a parallel interview to determine stability and accuracy of responses. The family caregiver was interviewed once. RESULTS: Persons with mild to moderate cognitive impairment (i.e., Mini-Mental State Exam scores 13-26) are able to respond consistently to questions about preferences, choices, and their own involvement in decisions about daily living, and to provide accurate and reliable responses to questions about demographics. IMPLICATIONS: Including the perspective of persons with cognitive impairment in both research and practice has the potential to enhance their autonomy and improve their quality of life.
Subject(s)
Alzheimer Disease/psychology , Choice Behavior , Mental Competency , Activities of Daily Living/psychology , Adult , Aged , Aged, 80 and over , Alzheimer Disease/diagnosis , Caregivers/psychology , Decision Making , Female , Geriatric Assessment , Humans , Male , Mental Status Schedule , Middle Aged , Neuropsychological TestsABSTRACT
This study examined the predictors of caregiver depression and "adaptation" over time in a sample of 202 family caregivers of cognitively impaired adults. By examining caregiver adaptation (i.e., a caregiver's ability to adjust psychologically to the demands of providing long-term in-home care), we were able to account for initial levels of depression, regression to the mean, and floor and ceiling effects. Results indicated that the strongest predictors of caregiver depression 1 year after baseline were initial levels of depression, worsening of caregiver subjective physical health status and burden, and short-term use of in-home respite assistance. These findings suggest that caregivers who experience deterioration in levels of physical health and burden and who use in-home respite on a short-term or sporadic basis may be especially vulnerable to the chronic stress of providing long-term in-home care.
Subject(s)
Caregivers/psychology , Depression , Health Status , California , Cost of Illness , Demography , Humans , Sex Factors , Socioeconomic Factors , Time FactorsABSTRACT
This article describes the range of respite care options that are helping families of cognitively impaired adults under the auspices of California's statewide system of Caregiver Resource Centers. Types of respite provided include in-home care, adult day care and other group care programs, and overnight respite options outside the home, ranging from short-term care of the patient in a facility to weekend retreats designed for caregivers. The hallmarks of the program are flexibility, choice, and consumer control.