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Advance directives are important for nursing home residents with dementia; for those with advanced dementia, surrogates determine medical decisions. However, in Taiwan, little is known about what influences the completion of these advance directives. The purpose of this study was to identify factors, which influence the presence of advance directives for nursing home residents with dementia in Taiwan.
Our cross-sectional study analyzed a convenience sample of 143 nursing home dyads comprised of residents with dementia and family surrogates. Documentation of residents’ advance directives, physical and cognitive status was obtained from medical charts. Surrogates completed the stress of end-of-life care decision scale and a questionnaire regarding their demographic characteristics. Nursing home characteristics were obtained from each chief administrator.
Less than half of the nursing home residents (39.2%) had advance directives and most (96.4%) had been completed by family surrogates. The following were predictors of an advance directive: surrogates had previously signed a do-not-resuscitate as a proxy and had been informed of advance directives by a healthcare provider; nursing homes had policies for advance directives and a religious affiliation.
Advance directives were uncommon for nursing home residents with dementia. Presence of an advance directive was associated with surrogate characteristics and the nursing home facilities; there was no association with characteristics of the nursing home resident. Our findings emphasize the need to develop policies and strategies, which ensure that all residents of nursing homes and their surrogates are aware of their right to an advance directive.
Factors affecting quality of life (QOL) ratings for people with dementia (PWD) have been well studied, but few studies have examined the effect of residence on PWD- and caregiver-rated QOL for PWDs. We designed this study to determine the factors related to PWD- and caregiver-rated QOL in dementia as well as factors related to the discrepancy in these ratings.
For this cross-sectional study, we analyzed data from a convenience sample of 106 PWD-family caregiver dyads (58 community-dwelling dyads and 48 nursing-home dyads). PWDs’ data included socio-demographic variables, QOL (assessed by the Quality of Life-Alzheimer's Disease [QOL-AD] scale), cognition, dementia severity, depression, comorbidities, and quality of the dyadic relationship. Caregivers’ data included socio-demographic variables, depressive symptoms, and mutuality of the dyadic relationship.
QOL-AD scores were lower when rated by caregivers than by PWDs. The key factors positively related to both PWD- and caregiver-rated QOL for PWDs were fewer PWD depressive symptoms and higher quality of the PWD-caregiver relationship. The key factors related to the discrepancy in PWD- and caregiver-rated QOL in dementia were PWD residence in a nursing home and lower dementia severity, as well as higher caregiver depression, being an adult child caregiver, and lower caregiver-PWD mutuality.
Caregiver-rated QOL for PWDs and the discrepancy in rated QOL were significantly associated with PWD residence. If caregiver-rated QOL is needed, the effect of residence of PWD should be taken into consideration. Caregivers’ depressive status and mutuality with PWD must be also carefully assessed.
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