PATHFINDER

Qualitative Approach and Methods

Aim of the qualitative component

To adapt and optimise Problem Adaptation Therapy (PATH) for people with mild to moderate dementia by grounding intervention content and delivery in the lived experiences of people with dementia, caregivers, and clinicians, and by resolving key uncertainties around acceptability, feasibility, and trial readiness within routine NHS services.

Qualitative methodology

A two-stage person-centred approach to intervention design was used: the first involved interviews and focus groups to identify priorities and concerns surrounding depression in dementia; the second used think-aloud interview methods to pilot PATH sessions with people with dementia and their caregivers, allowing us to see what worked well from the manual and what needed further adaption.

Which qualitative methods were used?

• Individual interviews with people with dementia and family caregivers.
• Focus groups with clinicians and therapists.
• Think-aloud methods during piloting of adapted PATH sessions and materials.
• Embedded Patient and Public Involvement (PPI) throughout design, analysis, and refinement.

Sampling & recruitment

People living with dementia were purposively recruited via NHS memory services and community mental health teams to capture variation in dementia severity, depressive symptoms, living arrangements, caregiver relationships, and service contexts. Clinicians represented a range of professional roles (e.g. nurses, occupational therapists, assistant psychologists, clinical psychologists). PPI contributors with lived experience of dementia and caregiving were involved across study phases.

Data analysis: how the team made sense of the data

Interview and focus group data were analysed using reflexive thematic analysis. Analysis was iterative and team-based, informing successive refinements to the PATH manual, therapist training, and caregiver role. Think-aloud data were analysed pragmatically to identify usability challenges and optimise materials for participants with cognitive impairment.

Findings, Learning & Impact

Summary of main findings

The qualitative findings showed that depression in dementia is shaped by experiences of loss (identity, roles, independence), anxiety about cognitive decline, social isolation, and shifting power dynamics within caregiving relationships. Participants emphasised the importance of respectful language, flexibility, and problem-solving approaches that foreground remaining strengths rather than deficits. Caregiver involvement was viewed as essential but emotionally and practically complex, requiring careful structuring to avoid increasing burden or undermining autonomy.

Why were qualitative methods used in this project, and what did they enable?

Qualitative methods were essential to ensure PATH was meaningfully adapted rather than simply transferred from a US research context into UK dementia services. They enabled the research team to:

• Centre the voices of people with dementia in intervention design.
• Identify emotional, relational, and contextual mechanisms shaping engagement.
• Test intervention materials in real-world settings with cognitively impaired participants.
• Define progression criteria (acceptability, credibility, feasibility) for moving to full trial evaluation.

Lessons learnt / reflections?

• People with dementia can engage in rich qualitative research when methods are appropriately adapted and paced.
• Qualitative development work is valuable even when subsequent trials yield neutral or mixed outcomes, by clarifying mechanisms, feasibility limits, and contextual constraints.
• Embedding qualitative leadership within trials strengthens ethical sensitivity, implementation relevance, and interpretation.

Impact & influence

The qualitative component directly shaped the adapted PATH intervention manual, therapist training programme, and delivery model tested in the PATHFINDER trial. It informed interpretation of the trial’s outcomes and contributed to methodological advances in qualitative intervention development for dementia care.

Links, Outputs & Resources

Links to publications

• McCombie, C., Cort, E., Gould, R. L., Kiosses, D. N., Alexopoulos, G. S., Howard, R., & Lawrence, V. C. (2021). Adapting and Optimizing Problem Adaptation Therapy (PATH) for People With Mild-Moderate Dementia and Depression. The American Journal of Geriatric Psychiatry, 29(2), 192–203. Available here.
• Howard, R., Cort, E., Rawlinson, C., Wiegand, M., Downey, A., Lawrence, V., Banerjee, S., Bentham, P., Fox, C., Harwood, R., Hunter, R., Livingston, G., Moniz-Cook, E., Panca, M., Raczek, M., Ivenso, C., Russell, G., Thomas, A., Wilkinson, P., … Gould, R. (2024). Adapted problem adaptation therapy for depression in mild to moderate Alzheimer’s disease dementia: A randomized controlled trial. Alzheimer’s & Dementia, 20(4), 2990–2999. Available here.