Blog – No Care Homes Left Out in Dementia Research

ENRICH (ENabling Research in Care Homes) Scotland works to ensure that care home residents, relatives and staff across Scotland have the opportunity to take part in research, regardless of where they live. As a Clinical Studies Officer with ENRICH, my role is to support care homes to become ‘research ready’ and to act as a bridge between researchers and care homes interested in participating in studies.

Alongside covering Aberdeen and Aberdeenshire, I also work with care homes in the Western Isles, Orkney and Shetland. Initially, I had concerns that engaging with island communities might be difficult. However, post-COVID ways of working have shown that meaningful engagement does not always require face-to-face contact. With the right technology and a willingness to connect, distance quickly becomes less of a barrier.

What has stood out most is how enthusiastic island care home managers are about research. They are keen to be involved, motivated to improve care for residents, and determined not to be left behind. With the right technology and a decent internet connection, all it really takes is someone willing to talk to you while sitting at their desk!

The key word there is ‘willing’, and I have found the managers of the Island care homes to be very willing to not only hear about research but to actually participate in it! I have been inspired by the commitment these care home managers have to their residents and staff to ensure that quality improvement is ongoing, and that these homes are not left behind the times. There is recognition of the challenges faced such as connectivity issues, travel issues, recruiting and retaining staff, and a limited pool of people meaning people can be teachers by day, carers by night and firefighters when needed! However, this does not seem to deter staff in care homes from wanting to go the extra mile for their residents.

In late 2024, a care home in the Western Isles took part in a research project on music provision in Scottish care homes.  Senior Social Care Worker, Marina Macleod said “Being able to be part of research programme in our remote care home was of great benefit and interest to not only our staff group but our residents thoroughly enjoyed taking part. The outcome of this research has helped to shape the current activity package, which in turn has enhanced social interactions for our residents.

It was lovely to see both residents and staff working together in this project, with staff learning from resident experiences and insights to have an active role in shaping their activity programme” It is clear from this summary that the time invested in this project, was indeed time well spent.

To use another example, ENRICH and some island care homes, have recently undertaken a dementia training board game via Teams – An unusual experience from my point of view, to be part of a board game taking place in care homes on the Western Isles and Orkney while I am sat at my desk in Aberdeen. But it worked and saved us having to exclude sections of the population based on geographical location. This takes more organisation and collaboration than a face-to-face game, but thankfully we ensured the homes had copies of the correct paperwork and a copy of the game prior to the arranged date.

We gleaned some valuable insights from working with the island care homes on the game; For example, the game highlights that people living with dementia who live in rural areas can have difficulty accessing care. The staff reflected that people on the islands can face a delay in diagnosis, (Indeed, the community in Shetland even raised money to buy a CT scanner in an attempt to overcome delays in diagnosis) and that there is a lack of healthcare teams available, including psychiatrists and community psychiatric nurses. This echoes thoughts of an island care home manager had previously voiced to me in that care staff are on the islands are forced to have a wider knowledge base as they don’t always have quick access to specialists.

Importantly, this engagement also highlighted how rural and island communities can experience a more covert form of exclusion from research. While they are rarely excluded through formal eligibility or “exclusion criteria”, practical barriers such as travel feasibility, cost, and limited time allowances can make it difficult for researchers to justify or fund work in remote locations. As a result, the voices of care staff and people living with dementia in these settings are often absent from research. This is despite the fact that staff bring wide-ranging expertise and first-hand insight shaped by limited access to specialist services and delayed diagnoses. These perspectives are not less relevant, but they are far easier to overlook when research designs prioritise convenience over inclusion. Island care homes also face unique practical challenges, such as staff shortages linked to travel disruption during adverse weather. Nevertheless, staff remain highly engaged, travelling to attend events such as the most recent ENRICH conference, research workshops and actively contributing to research discussions.

For early career researchers in particular, there is an important lesson here. Rural and island care homes are not “hard to reach” because they lack interest or capacity, rather, they require more flexible and creative research approaches. Virtual methods, hybrid designs and collaborative planning can make inclusion possible and rewarding.

By broadening how we design and deliver research, we can ensure that dementia research reflects the experiences of all communities, not just those that are easiest to access. The willingness, insight and readiness of rural and island care homes make them invaluable, and well worth the extra effort if you engage them as research partners at the earliest opportunity.

To conclude, I would like to thank our homes on the islands for being such willing participants in research. Thanks in particular to Amanda and Marina who willingly gave up their time to speak to me regarding this article.  I am grateful that the opportunity to work with the islands has arisen and this has allowed me to glean pockets of knowledge that I would otherwise have been unaware of.

If you would like help finding care homes in more remote and rural areas to support Patient and Public Involvement and Engagement work in your research, get in touch with ENRICH Scotland.

Kirsty Hynes

Author

Kirsty Hynes is a Clinical Studies Officer with ENRICH, part of the Neuroprogressive and Dementia Network, supporting care homes to take part in research. She trained as a mental health nurse at Robert Gordon University and spent nine years working in a secure unit before moving into research. Her work focuses on neurodegeneration and improving access to meaningful research opportunities for care home residents and staff. Kirsty is passionate about making research inclusive and practical, and enjoys running and home projects in her spare time.