Dementia Specialty Profile
Why you should deliver dementia research in the UK
Dementia research is fully embedded within National Health Service (NHS) clinical practice. We have well-established, highly regarded quality clinical services for patients with dementia and their carers, in both primary and secondary care. Expertise exists in all stages and types of dementia, from pre-symptomatic (e.g. Dementias Platform UK) through mild cognitive impairment to more advanced stages. This includes Alzheimer’s disease, Lewy body dementias, vascular cognitive impairment, mixed dementias, frontotemporal dementia and other less common forms. World-wide, the UK is ranked second in terms of the amount and quality of dementia research, with studies spanning the full translational research pathway.
The NIHR Clinical Research Network (CRN) provides researchers with the practical support they need to make research happen in the NHS and the wider health and social care environment. As well as providing research delivery staff, we also bring together communities of clinical practice to provide national networks of research expertise. The Dementias and Neurodegeneration Specialty is one of 31 such communities, made up of leading research clinicians and practitioners at national and local levels. Our job is to ensure that the dementia studies we support are delivered to time and target.
Clinical research in dementia is delivered by highly trained staff supported by nationally and internationally recognised opinion leaders, fully supported by strong NHS and University infrastructure. This includes a network of accredited memory clinics, clinical trial units, clinical research facilities, a national PET-MR dementia network, informatics supporting e-records research, a stem cell network and nationally co-ordinated brain banking.
Partnerships between clinical services and universities are strong as evidenced by Biomedical Research Centres specialising in dementia and ageing translational research.
There is high level political support for dementia research, with Prime Ministerial commitment (Prime Minister's Challenge 2020; £250m Dementia Research Institute established) and a dedicated National Director for Dementia Research.
Access to patients
The NHS provides access to representative samples of people with dementia and their carers within a highly regarded, comprehensive and equitable healthcare system, strengthened by evidenced based practice, such as the National Institute for Health and Care Excellence (NICE).
Year on year the number of patients recruited into dementia research in the UK grows. In 2018/19, over 45,900 participants were recruited into 262 Dementias and Neurodegeneration (DeNDRoN) studies within 159 secondary care NHS trusts. Of these, 33,588 participants were recruited into dementia and 12,330 participants into neurodegeneration studies.
The UK has a free national service to help support participation and facilitate recruitment into dementia research. This service is called Join Dementia Research (JDR). Over 40,000 volunteers have joined the JDR register since its launch - with over 20,000 participants recruited into dementia studies via the service.
In 2018/19, the Dementias and Neurodegeneration speciality delivered 80 per cent of studies to time to target. There is expertise in the delivery of Phase II and III studies, including multi-site international, randomised clinical trials.
The UK dementia research portfolio is diverse. Expertise exists across all key domains, but in particular Alzheimer’s disease, Lewy body dementia and Fronto-temporal dementia; application of brain imaging; research into the pathology and genetics of dementias; qualitative research including the development of person-centred care; and epidemiological work.
Collaboration lies at the heart of what we do. From a clinical perspective we aim to optimise participation in studies by working closely with clinicians, health care professionals and patients across the dementia care pathway. We work with patient charities and have a strong tradition of public and patient involvement.
We have a skilled and experienced workforce, enhanced by the NIHR CRN Rater training programme.
Case study: Donepezil or memantine for moderate to severe Alzheimer’s disease (DOMINO-AD) study
Previous NICE clinical guidelines for Dementia indicated that cholinesterase inhibitors should not be prescribed for severe dementia because of a lack of evidence for their efficacy. The DOMINO-AD study addressed this gap, recruiting 295 participants from 26 sites across the UK who were at the moderate to severe stages of AD and on stable donepezil treatment. They were randomised to continue therapy, switch to or add memantine, or go to placebo. Results were clear and showed significant benefits for cognition and function for continuing donepezil or switching to, or adding, memantine.
Findings heavily influenced two new NICE (2018) Dementia Guideline recommendations:
i) not to stop medication when dementia severity increases and
ii) to offer memantine, in addition to cholinesterase inhibitors, to those with moderate or severe AD as combination therapy.
This study has altered clinical practice around the world for patient benefit.
The CRN played a central role in helping to promote and support the study, with 13 LCRNs assisting with the identification and recruitment of participants, ensuring its success and impact.
“The recruitment support provided by the CRN was invaluable in helping us achieve the participant numbers we needed.”
Professor Rob Howard, Chief Investigator, DOMINO-AD