Care partners’ experiences managing behavioural and psychological symptoms of dementia: Scoping review protocol

Abstract

Behavioural and psychological symptoms of dementia (BPSD) affect most individuals living with dementia; and is among the most demanding aspects of care for caregivers. Care partners’ interpretations of and responses to these symptoms are shaped not only by clinical knowledge, but by their social locations and the structural conditions in which care unfolds. This scoping review will map how empirical studies conceptualize BPSD and represent care partners’ experiences. Coding will be done by integrating qualitative, quantitative, and mixed‑methods evidence through narrative, GBA + informed analysis, grouping studies by extracting descriptive meaning of BPSD, caregiver experiences, social identities, and structural inequities. Ongoing consultations with clinicians, care partners, community partners, decision makers and researchers will enhance the relevance and applicability of our findings. This scoping review will identify how inequities shape care partner’s responses to BPSD and provide preliminary evidence as to where change in research and clinical guidance is needed to support equitable, culturally safe dementia care.

Plain Language Summary

The question we want to study: We wanted to understand how families and close supporters care for people with dementia when that person’s behaviour becomes confusing, upsetting, or difficult to manage. These behaviours might include anger, fear, sadness, restlessness, or actions that seem out of character.
We noticed that many studies treat « caregivers » as if they were all the same. But in real life, people who care for someone with dementia come from very different backgrounds. Their experiences are shaped by factors such as culture, race, income, where they live, language, immigration experiences, and family expectations. We wanted to see whether research truly reflects this reality or overlooks it.

How we will study it: We will review existing research and interview people with lived experience of dementia. We will look at how families made sense of behaviours like restlessness,  wandering, agitation, sleep disturbance or repetitive questioning; How they responded day to day; Whether studies paid attention to differences between families, such as cultural background, gender roles, money, language, or access to services; We aim to work closely with clinicians, family caregivers, and community partners to stay connected real life using narrative enquiry.

What we found: This paper is a scoping review protocol. It means we publish the research project plan before we do the research. So, we do not have results yet. We present our plan only in this paper.

Why it matters: The findings of our study will help us learn who is represented and whose experiences are missing in dementia caregiving. Once we identify who/what is missing in the research, we will know whom to focus on.