Blog – Dementia Research in Rural Areas

There is no shortage of published material discussing the challenges of recruiting participants into health research from rural communities. If this already limited pool is further reduced by targeting older adults exclusively, the task becomes even more daunting. Several factors contribute to the difficulty of recruitment in rural areas, including geographical barriers, poor public transport infrastructure, limited healthcare resources, and the absence of major academic centres, which consequently results in fewer studies being conducted. Additionally, older adults face unique challenges that further complicate recruitment, such as chronic or complex medical conditions, cognitive and psychological changes associated with aging, polypharmacy, declining mobility, lower literacy rates, and a general mistrust of outsiders. All these elements combined make the recruitment process particularly challenging and not for the faint-hearted.

As a Clinical Studies Officer (CSO) for the Scottish Dementia Clinical Research Network (SDCRN), now part of the Neuroprogressive and Dementia Network (NDN), I had the privilege of coordinating and recruiting participants for several studies within the Scottish Borders. This region, with a population of approximately 100,000, is spread across nearly 2,000 square miles, making recruitment a significant logistical challenge. However, contrary to my initial expectations, recruitment targets were not only met but often exceeded. While I would love to attribute this success solely to my own skills, in reality, it was the result of several coinciding factors that created a “perfect storm” of favourable conditions.

When the SDCRN was established in 2009, the primary role of CSOs in each health area was to populate an interest register. This involved identifying and assessing patients diagnosed with dementia who expressed an interest in participating in research. As a Community Psychiatric Nurse working within the older adult mental health team, I had direct access to a steady stream of newly diagnosed patients. While I personally had clinical contact with only about 20% of them, I worked closely with all team members.

New referrals were discussed collectively, and I served as a constant reminder (some may say a pest!) to colleagues to provide patients with research information.

This was before the era of remote working, which many would agree has significantly altered team dynamics. As a result, the Scottish Borders achieved a remarkably high level of representation on the interest register, particularly in relation to the region’s overall population.

By the time the SDCRN began coordinating clinical trials, I was managing three nurse-led clinics within local GP practices, meaning that potential participants were already coming to me. After diagnosis and discussions about available treatment options, I would introduce the idea of research participation. I always made it clear that while direct clinical benefits from the research were unlikely, involvement itself could be therapeutic.

Many participants found value in the sense of purpose it provided, the opportunity to contribute to future advancements, or simply the ongoing engagement with healthcare professionals.

Normalizing research as part of routine discussions with patients significantly reduced reluctance to participate. Explaining research procedures and addressing concerns early on helped alleviate fears. Additionally, the continuity of care—where participants interacted with the same familiar healthcare professional throughout the process—further fostered trust and willingness to engage.

This sense of familiarity extended to other healthcare professionals as well. For instance, in two studies requiring blood samples, I lacked the necessary phlebotomy skills (none). However, because I had established good working relationships, district nurses were happy to assist. On one occasion when no district nurse was available, a GP willingly stepped in to perform the procedure. I’d suggest this level of cooperation shows how trust and familiarity within a small healthcare rural community can positively impact research recruitment.

The rural nature of the Scottish Borders posed additional challenges, particularly regarding access to specialized medical equipment. If an MRI scan of a certain specification was required, participants had to travel to Edinburgh, involving a round trip of three to four hours, plus waiting times. Despite this logistical hurdle, we found creative solutions. Utilizing local volunteer driver services—often familiar faces to participants—and personally escorting them when necessary ensured that travel did not become a barrier to participation.

Reflecting on my experience, I can see that some of the perceived barriers to research in rural communities can also serve as advantages. The “small-town mentality,” where everyone knows each other, again feeds that sense of familiarity and trust. In these communities, healthcare professionals may provide a diagnosis and ongoing support one day and the next meet in Asda deciding what to have for dinner that evening. This familiarity and trust helps dispel the “treated like a guinea pig” or “sticking needles in me” fears around research and integrating research discussions into routine clinical interactions we remove a lot of the scepticism that might otherwise arise.

This principle also applies to other healthcare professionals. In my experience, most clinicians are open to participating in research but are concerned about the time commitment involved. Given the existing demands on their schedules, they are often hesitant to take on additional responsibilities. However, when trust is established and they understand that their role is limited to occasional support they are generally more willing to contribute.

Recruiting participants for health research in rural communities presents unique challenges, particularly when targeting older adults. However, by placing research into normal clinical practice, using the trust and familiarity in these communities, creative solutions can be found and these barriers can be overcome. My experience in the Scottish Borders demonstrated that even in a geographically dispersed population, research recruitment can be highly successful when the planets align. Establishing strong relationships with both patients and healthcare colleagues is key to creating an environment where research participation is seen not as a burden but as an extension of quality healthcare.

Bernie McInally

Author

Bernie McInally is a Clinical Studies Officer at NHS Lothian and the Neuroprogressive and Dementia Network. Bernie’s background is in Nursing, working in Mental Health and with Older People. He retired from full time NHS clinical work, and is now back working in Clinical Research supporting delivery of the Enabling Research in Care Homes (ENRICH) Scotland. He is passionate about research delivery, and opening access to people in all communities.