Exploring the prevalence of and factors associated with pain: a cross- sectional study of community-dwelling people with dementia Heather E. Barry MPharm PhD 1 , Carole Parsons MPharm PhD 1 , A. Peter Passmore BSc MD 2 and Carmel M. Hughes BSc PhD 1 1 Clinical and Practice Research Group, School of Pharmacy, Queen’s University Belfast, Belfast, UK and 2 Department of Geriatric Medicine, School of Medicine, Queen’s University Belfast, Belfast, UK Accepted for publication 28 November 2014 Correspondence Prof. Carmel M. Hughes Clinical and Practice Research Group School of Pharmacy Queen’s University Belfast, 97 Lisburn Road Belfast BT9 7BL, UK E-mail: c.hughes@qub.ac.uk What is known about this topic • Community-dwelling people with dementia (PWD) are at risk of experiencing pain that is both under-recognised and under- treated. • Caregivers of PWD have an important role to play in the accurate and timely assessment and management of pain in this patient population. What this paper adds • Pain is prevalent among community-dwelling PWD, both as reported by patients themselves and by their caregivers. • Analgesic and antidepressant drugs are frequently prescribed for, and taken by, community-dwelling PWD. • Factors such as patients’ use of prescribed analgesic medication and caregiver gender may predict the presence of reported pain among this patient population. Abstract Few pain studies have made community-dwelling people with dementia (PWD) their focus. The aim of this study was to determine the prevalence of pain among this patient population and to explore medication use. Moreover, we sought to investigate patient and caregiver variables associated with the presence of pain. Community-dwelling PWD and their caregivers were recruited between May 2009 and July 2012 from outpatient memory clinics in Northern Ireland to take part in a face-to- face structured interview with a researcher. Patients’ cognitive status and presence of depression were established. A full medication history was taken. Both patients and caregivers were asked to rate patients’ pain, at the time of the interview and on an average day, using a 7-point verbal descriptor scale. From the 206 patients who were eligible to take part, 75 patient–caregiver dyads participated in the study (participation rate = 36.4%). The majority of patients (92.0%) had dementia classed as mild or moderate. Pain was commonly reported among the sample, with 57.3% of patients and 70.7% of caregivers reporting patient pain on an average day. Significant differences were found between patients’ and caregivers’ reports of pain. Two-fifths of patients (40.0%) were prescribed analgesia. Antipsychotic, hypnotic and anxiolytic drug use was low, whereas antidepressant drugs were prescribed more commonly. Presence of pain was unaffected by dementia severity; however, the use of prescribed analgesic medication was a significant predictor of the presence of pain in these patients, whether reported by the patient or their caregiver ‘right now’ or ‘on an average day’ (P < 0.001). Patient and caregiver recruitment was challenging, and remains a barrier to research in this area in the future. Keywords: caregivers, community-dwelling, dementia, older people, pain Introduction Many dementia patients continue to live at home fol- lowing diagnosis with informal caregivers, often fam- ily, providing the majority of care (Alzheimer’s Association 2012, Alzheimer’s Society 2012). The physical, psychological and emotional effects of care- giving can be extensive and are widely reported (Campbell et al. 2008, Etters et al. 2008, Kim & Schulz 2008). Among the reasons for this, poorly managed © 2015 John Wiley & Sons Ltd 1 Health and Social Care in the Community (2015) doi: 10.1111/hsc.12204