Objectives
To describe the current literature on pain assessment and pain treatment for community‐dwelling people with dementia.
Method
A comprehensive systematic search of the literature with narrative synthesis was conducted. Eight major bibliographic databases were searched in October 2018. Titles, abstracts, and full‐text articles were sequentially screened. Standardised data extraction and quality appraisal exercises were conducted.
Results
32 studies were included in the review, 11 reporting findings on pain assessment tools or methods, and 27 reporting findings on treatments for pain.
In regard to pain assessment, a large proportion of people with moderate to severe dementia were unable to complete a self‐report pain instrument. Pain was more commonly reported by informal caregivers than the person with dementia themselves. Limited evidence was available for pain focused behavioural observation assessment.
In regard to pain treatment, paracetamol use was more common in community‐dwelling people with dementia compared to people without dementia. However, non‐steroidal anti‐inflammatory drugs (NSAIDs) were used less. For stronger analgesics, community‐dwelling people with dementia were more likely to receive strong opioids (e.g. fentanyl) than people without dementia.
Conclusion
This review identifies a dearth of high quality studies exploring pain assessment and/or treatment for community‐dwelling people with dementia, not least into non‐pharmacological interventions. The consequences of this lack of evidence, given the current and projected prevalence of the disease, are very serious and require urgent redress. In the meantime, clinicians should adopt a patient and caregiver centred, multi‐dimensional, longitudinal approach to pain assessment and pain treatment for this population.