Patient and proxy measurement of quality of life among general hospital in-patients with dementia

Background: We aimed to investigate quality of life ratings among people with varying severity of dementia and their carers, recruited in general hospital. Method: We recruited 109 people with dementia, and their proxies (carers), from psychiatric referrals of inpatients in two general hospitals in England. From patients, we gathered data on quality of life (QoL-AD and EQ5-D) and depressive symptoms, and from proxies we gathered data on patient quality of life (Proxy QoL-AD and EQ5-D), severity of dementia, activities of daily living, physical illness and depressive symptoms, and on carer stress. Results: Completion rates for both measures were progressively lower with increasing dementia severity. Patients rated their quality of life more highly than proxies on Qol-AD (patients = 32.2, CI = 30.7-33.7, proxies = 24.7, CI = 23.8-26.0, p < 0.001) and on EQ5D (patients = 0.71, CI = 0.64-0.77, proxies = 0.30, CI = 0.22-0.38, p < 0.001). For proxy EQ5D, impaired instrumental ADLs (p = 0.003) and more severe dementia (p = 0.019) were associated with ratings, while for proxy QoL-AD, only more severe dementia (p = 0.039) was associated with ratings. Lower patient EQ-5D scores were independently associated only with carer stress (p = 0.01). Lower patient QoL-AD scores were associated with patient depression (p = 0.001), impaired activities of daily living (p = 0.02) and proxy psychiatric symptoms (p = 0.002). Conclusions: Among patients with moderate to severe dementia in general hospital, proxy measures of quality of life are the only practical option. Patients and proxies appear to have very different concepts of quality of life in dementia.