The involvement of people living with dementia in research: lessons learned from a doctoral thesis

Purpose Involving people living with dementia as research participants is increasingly recognized as essential to ensuring the relevance, quality and impact of dementia research. Yet participation remains limited due to structural and methodological barriers, including assumptions about decision-making capacity, communication challenges and informed consent processes that often exclude individuals beyond early stages. The purpose of this paper is to highlight approaches for including people living with dementia in research. Design/methodology/approach Drawing on emerging findings from the first author’s doctoral research and the broader literature, this commentary outlines practical strategies for meaningful inclusion, focusing on communication practices, pacing and interview design that respect autonomy and lived experience. Findings The authors highlight approaches such as sharing materials in advance, using clear, non-infantilizing language, allowing additional response time and reinforcing the value of participants’ contributions. By addressing common participation barriers and offering concrete, person-centered recommendations, this paper supports more inclusive qualitative research practices and strengthens efforts to ensure that the perspectives and experiences of people living with dementia are directly represented in research. Originality/value As advances in science and healthcare extend the scope and complexity of research participation, there is a corresponding ethical imperative to ensure that people living with dementia are not excluded, but meaningfully and respectfully engaged. This manuscript addresses this challenge by translating emerging findings from doctoral research, alongside existing literature, into concrete, field-tested strategies that support accessible, consent-sensitive and dignity-preserving research practices. In doing so, it contributes to ongoing discussions around informed consent, vulnerability and equity in research, and offers applied methodological guidance for qualitative researchers navigating these evolving ethical and regulatory landscapes.