Living with dementia and other long-term conditions: what works for patient/caregiver dyads? A realist review

Objectives Globally, increasing numbers of people are living with multiple long-term conditions. When dementia is a co-occurring condition, contact with services is complicated due to the person’s cognitive difficulties and is often achieved as a dyad (person and carer). This realist review aimed to explain how dyads living with dementia alongside other long-term conditions are enabled (or not) to access and navigate health and care systems. Method An iterative, three stage approach synthesised evidence from empirical studies and stakeholders with lived and professional experience (ethics reference 23/LO/0829). Results Evidence from 61 studies and stakeholders (30 participants, 68 consulted) built and refined five programme theories for how health and care systems can achieve continuity of support, anticipate adverse events and maintain quality of life. Belief that concerns would be listened to and acted upon led dyads to seek assistance. Time and permission to discuss priorities, prognosis and acceptable levels of burden enabled uncertainties to be managed as a shared endeavour. The collective capacity of the dyad was enhanced by peer support, expertise they accrued over time and professionals who helped anticipate points of change. Conclusion Despite years of system changes, structural factors still create excessive burdens for dyads accessing services and constrain professionals’ ability to respond to complex needs.