Blog – Why Care Home Communities Deserve a Place in Research

Care homes are vibrant communities — rich in diverse people with a wealth of knowledge, experience, stories, wisdom, and insight. Yet when it comes to research, particularly health and social care research, they are too often left out. Not because they can’t or don’t want to contribute, but because it’s complicated.

But complicated shouldn’t mean impossible.

People living at home, should they wish, can easily contribute to research, via GP surgeries, outpatient departments, social media, hospital visits, and community outreach. As someone who has worked closely with care home communities over the last three years, I’ve seen both the barriers and the potential. I’ve seen residents, staff, and families eager to share their voices and be part of something bigger — and I’ve also seen them left out because the systems around them weren’t ready to listen.

This reflection explores why it matters, what gets in the way, and how, if we’re willing we can do better.

Too often, care homes are seen as separate from the wider community, but they are buzzing  with life. They are not just care homes; they are homes to the people who live in them and workplaces for dedicated staff.

Despite growing awareness of the importance of inclusion, care home residents are still often excluded — not because they cannot contribute, but because assumptions are made about their ability.

Many residents live with dementia, many do not. Living with dementia does not mean a person automatically lacks the capacity to make decisions — including the decision to take part in research. Capacity is specific to the decision at hand and can fluctuate.

Unfortunately, these nuances are often overlooked by researchers and care home staff alike, leading to exclusion.

But inclusion is possible — even for people with more complex needs — if the right support is provided.

From my own experience I can offer 2 examples;

• A resident with dementia took part in a survey about what mattered most to her. Staff were hesitant, thinking she might not manage. But by taking our time, pausing when she became distracted, and creating space for gentle conversation, she shared her important views.
• Another resident, younger but with significant physical and sensory impairments, completed the same survey with additional time and tailored support. Her pride in having her voice heard was evident.

Yes, it took more time. But it was worth it. Research after all should be about listening to the people who matter.

“If we are serious about improving lives … we must ensure people living and working in care homes are given fair, meaningful opportunities to participate in research.”

Despite growing recognition of the importance of research in care homes, many challenges remain:

• Care home staff at times do not fully appreciate the value of research, leading to missed opportunities to share information with residents, families, and colleagues.
• Researchers sometimes fail to ensure their work is relevant to care home life. Staff question what difference research makes to daily care and resident experience.
• Policy makers need to better integrate research into social care policies and practices. Without this, research risks remaining academic and not actionable.
• Busy staff juggle many priorities. Research can feel like an extra task that doesn’t fit their routines.
• Academic studies frequently use specialised jargon that is not familiar to frontline care staff. This creates a communication barrier, making the research seem distant or irrelevant, and discourages meaningful participation from those providing direct care.
• The time lag between research participation and the delivery of actionable findings—often spanning months or even years—can lead to frustration among care home communities. This delay may reduce motivation and diminish the perceived value of being involved in research activities.
• Risk aversion and complex ethics procedures sometimes prevent participation. While safeguarding is vital, current ethical frameworks may not suit social care settings. Work is ongoing to streamline these processes.

How can we ensure care home practices are based on the best possible evidence if care homes are excluded from research or if research isn’t designed to meet their needs? How can we build on lessons learned from care home communities to improve future research opportunities?

At ENRICH Scotland, we believe research in care homes should be shaped with the people who live and work in them—not just be about them. Voices of residents, staff, and families must be heard to ensure research is fit for purpose and supports positive change.

Our dedicated team will

• Share best practices and insights on what makes participation easier.
• Help researchers design studies shaped by lived experience, making sure research addresses the real priorities of care home communities.
• Connect researchers with a growing network of care homes open to research, fostering trusted relationships for long-term collaboration.
• Visit care homes to support study delivery—minimising the burden on staff and making participation easier.

If we are serious about improving lives — about shaping care, services, and policy around what people actually need and want — then we must ensure people living and working in care homes are given fair, meaningful opportunities to participate in research. Not as token gestures, but as respected and valuable contributors.

Let’s challenge assumptions. Let’s open doors. Let’s work together to make research for care home communities more relevant, inclusive, and impactful. For further information contact us at tay.enrichscotland@nhs.scot

Lesley Cousland

Author

Lesley Cousland is a Clinical Studies Officer with the Neuroprogressive and Dementia Network and ENRICH Scotland. A retired mental health nurse with over 40 years’ experience, she now supports research in care homes, ensuring residents and staff help shape studies that matter to them.

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