Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation

Family carers of people with dementia face particularly stressful and time-intensive care situations, yet their involvement in research is vital to understanding and addressing their specific needs. To inform involvement approaches, it is important to understand activities, roles, barriers and enablers associated with involving this group. This scoping review aimed to identify, map and summarise evidence on the involvement of family carers in dementia care research.

We conducted a scoping review following JBI methodological guidance. Empirical studies involving family carers of people with dementia who actively contributed to research processes were included irrespective of study design. We systematically searched MEDLINE, CINAHL, Scopus and PsycInfo, complemented by backward citation searching, searches of relevant evidence syntheses and an expert survey. Two researchers independently screened a randomly selected 20% of titles/abstracts and full texts. Data items were organised into six categories and guided the charting process. Findings were synthesised descriptively and narratively. Consultation with four family carers was carried out to contextualise and enrich the results.

Forty-eight studies published between 2002 and 2026 met inclusion criteria, most using qualitative designs. Research contexts included development of social or digital interventions, Patient and Public Involvement, implementation, exploration, evaluation and adaptation. Forty-five studies reported involvement during the execution phase, six in the preparatory and nine in the translational phase. In 35 studies, family carers acted as co-thinkers, in 10 as partners and in 1 as decision-makers. Seven studies reported barriers and enablers, while 17 reported impacts of involvement on carers and on the respective projects.

Dementia care research involving family carers as co-researchers shows heterogeneous and often limited methodological reporting. Meaningful involvement may benefit from careful considerations of roles, potential barriers and enablers and expected impacts. More research is needed on strategies that enable meaningful involvement and on formalised methods for recording and reporting impact.

The impetus for this scoping review came from a group of family carers of people with dementia who had worked with us in a previous project and shared with us their lived experiences and difficulties. In collaboration with them, we raised the questions that are described in the scoping review. During the scoping review, family carers were also asked to give their views on the findings and share their thoughts.