Measuring what matters: challenges in pain assessment among people with dementia and rheumatic and musculoskeletal diseases.

Population ageing will lead to a growing number of people living with both dementia and rheumatic and musculoskeletal diseases (RMDs). Current clinical practice and research methods in rheumatology are, however, largely built around people who can reliably communicate symptoms and report pain. Dementia fundamentally alters how RMDs present, as joint pain may manifest through behavioural change, and treatment response may not be captured by standard assessments such as disease activity scores. Observational pain scales used in geriatric care, such as the Pain Assessment Checklist for Seniors with Limited Ability to Communicate, were developed for routine clinical observation. These tools are, however, not specific to RMD-related symptoms. We argue that pragmatic study designs incorporating outcomes collected in daily living situations, such as mobility and qualitative input from informal caregivers and nursing staff, are needed to better detect treatment effects in people with dementia and RMDs.