Pain and neuropsychiatric symptoms in community-dwelling people living with dementia: a cross-sectional dyadic study

Background Pain may be linked to neuropsychiatric symptoms in dementia but the nature of these associations is unclear. The aims of this study were to examine the concurrent validity of pain scales and to investigate the relationship between pain and neuropsychiatric symptoms in community-dwelling people with dementia. Methods This study recruited dyads of people with dementia and their caregivers. Questionnaires measuring pain (Numeric Rating Scale, Brief Pain Inventory Short Form, EQ5D3L) and cognition (Mini- Addenbrookes Cognition Examination) were completed by people with dementia. Dyad partners completed the Neuropsychiatric Inventory Questionnaire (NPI-Q). We examined the degree of agreement between different measures of pain and compared the NPI-Q score and items between people with dementia with and without troublesome pain (NRS ≥ 4, NRS < 4), and between those with single and multisite pain. Results The study recruited 35 individuals with dementia (49% female, mean age 80 with a range of 65–91 years, mean Mini-ACE 13.6/30) and 35 dyad partners. 66% of people with dementia had troublesome pain and compared to those without troublesome pain they were not significantly different in terms of age, sex, frailty, or other demographic variables, but were more likely to take regular paracetamol. Agreement between the NRS and EQ5D3L pain score was good (Cohen’s kappa 0.70, p <0.001), as was agreement between the NRS and BPI-SF with a close to 0 mean difference between the scores on a Bland-Altman plot. The total NPI-Q score was not significantly associated with the presence of troublesome pain. Of all NPI-Q symptoms, only disinhibition showed associations with both painseverity and multisite pain (44% vs 0% and 38% vs 0% respectively, both p <0.05). Conclusion Community-dwelling people living with dementia can self-report pain using a range of pain scales. Certain neuropsychiatric symptoms may be more common in the presence of pain but requires further study with larger cohorts.