Guest Blog written by Adam Smith on Sunday September 27, 2015
In the UK, the majority of long-term care for frail older people is provided by staff working in care homes and care homes are places where people with complex health needs live. Approximately 376,000 people in the UK live in care homes (British Geriatrics Society, June 2011), which is around 4% of the population aged 65 years and over, and rising to 20% in those aged over 85.
Care home residents are a vulnerable group, often lacking an effective voice, and there is a risk therefore that their health and social care needs may become neglected. Residents need good care and research can help make this a reality. By driving improvements in care homes research can provide evidence to support new and better ways of working by giving staff and residents a real opportunity to make a difference. Research studies may focus on how to improve care, provide new treatments or offer new ways to manage disease and the problems associated with aging.
By bringing together researchers with care home staff and residents, we can:
The good thing is that researchers, research funders and government are beginning to wake up to the importance of the care home sector and the needs of their resident communities.
Around 1/3rd of all the research funding the recent Dementia Themed Call and Prime Ministers Challenge on Dementia has been channelled into studies, which will directly involve or impact care home residents. This is over £12m in the past year alone. Studies such as EPIC and MARQUE beginning in 2014 could result in new knowledge and guidance transforming elements of care in nursing and care homes.
ENRICH and research in care homes isn’t all about dementia research, despite 80% of care home residents suffering from the condition (Alzheimer's Society, February 2013). Around 25% of care home residents will have previously suffered from a Stoke (National Audit Office (NAO), 2010), and 5% will have Parkinson’s disease (Parkinson's UK, 2013) and these are all areas where care home residents can contribute to new research.
Managing someone’s care as they approach the end of their life is also an area of great interest to researchers - approximately 60% of all deaths that occur each year are expected and predictable. In England, that’s around 85,000 deaths and 17% of everyone who dies, lives in a care home (National Audit Office (NAO), 2010).
Communicating the benefits
Although care homes are beginning to recognise the benefits and opportunities that come with supporting research, it is still sometimes difficult to sell the value of participation to managers. This is because care home managers and staff are under pressure — trying to deliver high quality person centered care whilst managing on squeezed budgets, dealing with staffing and occupancy challenges and meeting regulatory demands. This means that the most successful recruiting studies are those which demonstrate real worth – adding value, not just in the long-term, but also during research delivery.
We have seen what should be the simplest and easiest studies to deliver struggle to recruit, not because the research wasn’t of high quality. This usually happens because the researchers failed to clearly communicate the benefits, or design a study that care home and residents would want to be a part of. Some studies will always face recruitment challenges, but talking about the benefits, and how the outcomes will be used, and sharing the outcomes will help. Through ENRICH, we hope to seek out and find those care homes that, despite these obstacles, still want to be involved – and they are out there!
Over the past few months, new Research Ready Care Home Networks have been set up in the North East, Scotland, East Anglia, South West, Yorkshire, South Coast and Kent, and the interest has been remarkable. In these regions alone, the network has recruited over 100 small group and independent care homes in just three months. The South West has recruited over 20 care homes within a few weeks.
The local networks now extend across the whole of England and Scotland and the NIHR Clinical Research Network is urging regions to continue with this progress and reach 10% sign-up by March 2015 – which would be almost 2000 care homes.
Large national corporate care home groups could help double this number. The top ten national providers account for around 10% of all care homes – and if they joined that would be another 2,000! Unfortunately, we have found these businesses and communities harder to approach. Corporate changes, restructures, changes in ownership and general bureaucracy have all worked against us, and these businesses face all the challenges of smaller providers, but on a bigger scale. Despite these set-backs, the team working on ENRICH are continuing to urge these providers to get involved – using our strong relationship with the Orders of St Johns Care Trust as a model way of working, providing a corporate overview but still allowing local engagement.
So why does the Research Ready Care Home Network exist? Because through it we can play vital role in helping researchers to connect with care homes and residents, making studies better; and helping the care homes connect with researchers making the lives of residents better.
First published for the twitter Dementia PHD community #demphd