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Supporting dementia research in social care settings

Professor John O’Brien discusses the need for more dementia research in social care settings and highlights the range of benefits that getting involved in research can bring.

People living with dementia rely on care and support from a wide range of health and social care professionals – with many dementia services delivered by social care providers.

Due to the complex nature of dementia and the broad range of co-morbidities associated with memory decline and ageing – including hypertension, mental health conditions and retinal disorders – the need for an integrated and whole-systems approach to dementia, bringing together the full spectrum of health and social care providers, has never been more apparent.

An integrated approach to dementia care must be person-centred, co-ordinated and tailored to the needs to the needs of the individual, their families or carers. However, integration cannot and should not be limited to the provision of care itself. The majority of people living with dementia rely on help and support from their carers, but equally from social care, care homes and NHS providers. Health and social care professionals working in these areas are extremely well-placed to get involved in health research and help glean important discoveries about dementia, such as disease trends or risk factors; or develop and evaluate new interventions which may have the potential to make a difference to people’s lives.

Despite the challenges of undertaking research outside of hospital environments – particularly recruiting suitable participants – it is vital that health and social care professionals of all disciplines seek to do so. Dementia research is key to advancing our understanding of the condition and will eventually lead to the development of better care and treatment for those living with dementia.

At the National Institute for Health Research (NIHR), we are facilitating more dementia studies each year. In 2017/18, NIHR’s Clinical Research Network (CRN) – the arm of NIHR which enables patients to get involved and healthcare professionals to run clinical research studies within the NHS – supported nearly 250 dementia and neurodegeneration studies nationwide, helping to recruit over 32,000 participants. This ranks as one of the CRN’s best years yet in terms of performance. However, the majority of dementia studies are still undertaken within the NHS – so we must do more to foster an environment which makes it as easy as possible for all types of care providers and health and social care professionals – as well as people living with dementia and their carers – to get involved in dementia studies.

A number of recent developments and initiatives from the National Institute for Health Research aim to achieve exactly that.

NIHR support for your study

In January 2018, the CRN expanded the scope of its portfolio eligibility criteria to include health and social care studies delivered outside of clinical NHS settings. This more wide-ranging offer of support includes eligible studies run by social care providers, which we hope will help facilitate more research where the prevalence of the disease is at its highest.

CRN support can help researchers in a number of ways – including the provision of research support around identifying and recruiting participants, gaining consent, or supporting on-site research professionals. The range of NIHR support for studies accepted on to the CRN Portfolio includes expert advice on how to get studies off the ground, such as research design and delivery, study support advice and potentially funding to meet the costs of research staff and facilities.

A range of online support for researchers

Despite dementia being one of the biggest global health challenges we face, five times fewer researchers choose to work in dementia than cancer. To help overcome this shortfall, earlier this year NIHR launched a new website and network called Dementia Researcher – aimed exclusively at new-to-the-field or early career dementia researchers.

Developed by NIHR’s office of the National Director for Dementia Research with support from Alzheimer’s Research UK, Alzheimer’s Society and the Medical Research Council, the website provides a range of support and resources to encourage and enable emerging health and social care talent to get involved in dementia research – including information on funding opportunities for research, guidance on how to produce grant proposals, opportunities to ask a dementia expert, and a range of podcasts.

One of the priorities set out in the Government’s Dementia 2020 Challenge is explicitly around delivering more research in care home environments. In response to this, NIHR launched ENRICH – a network of 1,000 research enabled care homes along with a website which provides a comprehensive toolkit to enable more health research in care homes. The site contains a range of guidance and support for researchers and care home staff on how best to deliver effective studies – for example advice on overcoming the challenges around recruiting participants and important lessons for researchers to consider.

Benefits of research

Delivering health research is not only beneficial for the participants or groups of people with a specific disease or condition. Recent figures from two studies, including research published in the international peer-reviewed journal PLoS One, show that research-active organisations consistently achieve better outcomes for their patients or clients – based on higher survival rates for colorectal cancer patients, and lower mortality rates for research-active NHS trusts following emergency admissions.

Research active organisations also offer individuals more choice and provide early access to what may eventually become the best new and emerging treatments – providing the trial is successful.

But not only that – getting involved in health research is good for business and good for staff. Enabling health and social care professionals to take part in studies has been shown to improve staff training, continuing professional development and clinical knowledge – ultimately increasing staff motivation.

Get involved

The benefits of research are plain to see and there’s never been more opportunities for care providers and health and social care professionals without research experience to get involved.

Dementia is one of the biggest health challenges we currently face and enabling better dementia research is the key to tackling this challenge. New discoveries will one day enable us to transform dementia care and develop effective treatments and management strategies – but to achieve this, we need to up the momentum and enable even more health professionals and patients to get involved.

Professor John O’Brien is National Speciality Lead for Dementia at the National Institute for Health Research (NIHR). Email: crnspecialtyclusterE@nihr.ac.uk Twitter: @NIHRCRN

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