How do we engage participants from underserved populations with a dementia in primary care research?

Problem

The DPACT-Dementia Support Study aims to evaluate the effectiveness of a primary-care based person centred dementia support intervention. One of the challenges we face is engaging people diagnosed with a dementia, who may also be living with frailty and emotional difficulties, and who live alone or lack an extended support network. Previous primary care based trials have struggled to recruit such individuals, who may respond least well to written material, yet have the potential to benefit most from the intervention.

Approach

We aim to test an assertive recruitment approach which balances the ethical imperatives of ensuring adequate opportunity to be involved and avoiding unwelcome pursuit or breaches in confidentiality. We have worked in collaboration with a Peer Research Group (PRG) consisting of people with dementia and their carers in the development of our approach. The approach is person-centred, accessible and flexible. The pathway starts with a standard approach letter from the GP leading on to alternative responses if adequate contact is not made. The pathway includes a series of exclusion points, with combinations of letters, phone calls and face-to-face meetings as appropriate. Ongoing assessment for each point at which contact is made will determine the person’s wish and ability to participate, the nature of the wider support network and the potential for carer participation in the study. For those who do not respond to any opportunity along the chain, clinical follow-up will be arranged through the GP practice, to allow identification of hitherto unknown clinical or social needs. In addition, qualitative interviews with participants will further reveal helpful and unhelpful recruitment strategies. We will operate a test and learn approach, whereby researchers and participants (through informal feedback processes) will reflect on every contact in the chain and adapt the protocol further.

Findings

We will present findings from the initial prototype pilot phase, trialling the recruitment process. We will report levels of engagement in each step and reported harms and benefits. Early findings from our qualitative enquiry will also be presented alongside consequent adaptations to the recruitment process.

Consequences

This innovative approach addresses an important gap in the evidence-base around recruitment of hard to reach groups. Our findings have the potential to inform future studies involving recruitment of people with dementia as well as other groups who lack capacity. By including strategies to follow-up those who do not take up or opt out of opportunities to participate at any of the contact points, anticipatory care is built into the recruitment process. This ethically sound approach enables us to gain knowledge of the characteristics of those with dementia who are usually left out of research, when this may be due to unknown and unmet clinical or social needs.