Self- and Carer-Rated Pain in People With Dementia: Influences of Pain in Carers

Abstract

ContextAlthough pain is frequent in people with dementia (PwD), evidence on the prevalence and factors influencing ratings of pain in dementia is limited. Carer variables are often associated with bias in proxy ratings of pain, but few studies have examined the role of caregiver pain in influencing these ratings. ObjectivesThis study explored the prevalence of pain in PwD in a large U.K. sample. A secondary aim was to identify factors influencing ratings of pain in people with mild to moderate dementia and whether carer pain systematically influences proxy ratings. MethodsThis was a cross-sectional study of 488 caregiving dyads living in the community. Self- and carer-rated pain was assessed as part of the EuroQoL-5D (EQ-5D). Depression and anxiety for the PwD were measured by the Cornell Scale for Depression in Dementia and the Rating of Anxiety in Dementia Scale. The Hospital Anxiety and Depression Scale was used to measure anxiety and depressive symptoms in carers. Using logistic regression modeling, we examined the relationship between self- and carer-rated (proxy) pain in PwD and psychological distress, functional ability, and health status. Carer variables included self-rated health, strain, anxiety, depression, and caregiver pain. ResultsA total of 45% of PwD reported pain, whereas carer-rated pain was higher (59%). Self-rated pain was more frequent in those with lower self-rated health (adjusted odds ratio [AOR] 0.97; 95% CI 0.96–0.99, P ≤ 0.001) and higher anxiety (AOR 1.07; 95% CI 1.01–1.12, P = 0.013). Carer-rated (proxy) pain was additionally predicted by poor proxy-rated health in the PwD (AOR 0.98; 95% CI 0.96–0.99, P = 0.006) and carers' own experience of pain (AOR 0.36; 95% CI 0.21–0.63, P ≤ 0.001). ConclusionOur results indicate that pain is very frequently reported in PwD and that the presence of pain is associated with high levels of anxiety. Caregiver pain affects carers' perceptions of pain in PwD.