Reviewing the landscape of the decision-making process for pain assessment and management for people living with dementia: A systematic review

Aim: To understand the steps in the decision-making process regarding pain assessment and management for people living with dementia from the perspectives and experiences of people with dementia, formal and informal carers. Methods: A systematic review was conducted. Seven English databases were searched, including PubMed, Psychological Information Database, Cochrane Library, Scopus, Cumulative Index of Nursing and Allied Health Literature, Web of Science, and ProQuest, using synonyms and derivatives for “dementia”, “cognitive impairment”, “pain”, “pain assessment”, “pain management”, “decision”, “decision support”, and “decision-making”. Results: Twenty-eight studies fulfilled the eligibility criteria. Pain assessment and management in dementia are complex, successive, and collaborative processes carried out by different individuals over a period based on one's understanding of the person with dementia but with high uncertainty. Pain assessment involves a certain degree of guesswork, while pain management is a trial-and-error process. Conclusion: More pragmatic approaches are needed to overcome challenges, including uncertainty and decisional conflicts.