Differential perceptions of quality of life (QoL) in community-dwelling persons with mild-to-moderate dementia.

BACKGROUND: Discordance between patient- and caregiver-reported quality of life (QoL) is well recognized. This study sought to (i) identify predictors of discrepancy between patient- and caregiver-rated QoL amongst community-dwelling persons with mild-to-moderate dementia, and (ii) differentiate between patients who systematically rate their QoL lower versus those who rate their QoL higher relative to their caregiver ratings. METHODS: We recruited 165 patient-caregiver dyads with mild-to-moderate dementia. Quality of life in Alzheimer's disease (QoL-AD) scale was administered separately to patients and caregivers. Data on socio-demographics, interpersonal relationship, and disease-related characteristics (cognitive performance, mood, neuropsychiatric symptoms, functional ability, and caregiver burden) were collected. Patient-caregiver dyads were categorized based on whether patient-rated QoL was lower or higher than their respective caregiver ratings. Univariate analyses and multiple regression models were performed to identify predictors of dyadic rating discrepancy. RESULTS: Mean patient-rated QoL was significantly higher than caregiver rating (mean difference: 3.8 ± 7.1, p < 0.001). Majority (111 (67.2%)) of patients had more positive self-perceived QoL (QoL-ADp (QoL-AD self rated by the patient) > QoL-ADc (QoL-AD proxy-rated by a caregiver)), compared with those (44 (26.7%)) with poorer self-perceived QoL (QoL-ADp < QoL-ADc). Patient's education level, depressive symptoms, and severity of neuropsychiatric symptoms predicted magnitude of discrepancy. Depression (OR = 1.17, 95% CI = 1.02-1.35) and being cared for by other relative (non-spouse/adult child; OR = 7.54, 95% CI = 1.07-53.03) predicted poorer self-perceived QoL. CONCLUSIONS: Dyadic rating discrepancy in QoL should draw the clinician's attention to patient depression and neuropsychiatric symptoms. Consideration should also be given to nature of patient-caregiver relationship when discordance between patient and caregiver assessments of QoL is observed.

Cost of informal care for community-dwelling mild-moderate dementia patients in a developed Southeast Asian country.

BACKGROUND: Cost of informal care constitutes an important component of total dementia care cost. It also reflects resource utilization by patients and caregivers. We aim to quantify the informal cost of care for mild to moderate dementia patients. METHODS: We recruited 165 patient-caregiver dyads with mild to moderate dementia. Informal care burden was assessed using the Resource Utilization in Dementia (RUD)-Lite instrument. A generalized linear model was fitted for association between cost of informal care and cognitive impairment, taking into account patient demographics, disease factors, and use of paid domestic help. Marginal estimates were obtained from the model for the purpose of illustration and discussion. RESULTS: Total hours of informal care by primary caregiver doubled in moderate dementia patients, with 57.9% having paid domestic help to assist in care. Functional factors and use of paid domestic help were significantly associated with informal care costs. Costs were consistently higher for patients without paid domestic help for mild- and moderate dementia. CONCLUSION: This study demonstrates the informal care costs of caring for mild-moderate dementia patients in Singapore, with the unique cost savings provided by live-in paid domestic help, and potentially may aid policy-makers in allocation of resources and support to caregivers.