Pain in care home residents with dementia: an exploration of frequency, prescribing and relatives' perspectives

Objectives: This study aims to determine pain frequency amongst care home residents with dementia, to investigate variables associated with pain, to explore analgesic use among residents and to seek residents' relatives' views on provision of care and management of pain by the care home. Methods: Structured face-to-face interviews were conducted with residents, nursing staff and relatives from nine dementia care homes in Northern Ireland, between May 2010 and March 2012. Demographic information was collected from participants, neuropsychiatric tests were used to assess residents' cognitive functioning, medication use was determined from care home records and residents' pain was assessed using a verbal descriptor scale. Relatives' views were sought on care provision and management of pain. Results: Forty-two residents, 16 nurses/care assistants and 35 relatives participated; the participation rate of residents was low (27.6%). Most residents were suffering moderate-severe dementia, and some residents (26.2%) were unable to provide a self-report of pain. A significantly higher proportion of relatives (57.1%) deemed residents to be experiencing pain at the time of the interview, compared with residents (23.8%, p = 0.005) and nurses/care assistants (42.9%, p = 0.035). Most residents (88.1%) were prescribed with analgesia; non-opioid analgesics were most commonly prescribed. High proportions of residents were prescribed with psychoactive medications. Antipsychotic drug use was associated with presence of pain (p = 0.046). Conclusions: This study has reinforced the challenge of assessing and managing pain in this resident population and highlighted issues to be addressed by long-term care providers and clinicians. Participation of people with dementia, and their families, in healthcare research needs to be improved.