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Dementias and Neurodegeneration

The NIHR is the nation's largest funder of health and care research and provides the people, facilities and technology that enable research to thrive. We work in partnership with the NHS, universities, local government, other research funders (including industry and charities), patients and the public to improve the health and wealth of the nation.

In 2018/19, the NIHR Clinical Research Network (CRN) supported 323 dementias and neurodegeneration studies, 99 of which were new studies, and recruited 45,918 patients to studies in this area over the last year.

The Government’s Challenge on Dementia sets out the ambition for England to be the best place in the world to undertake research into dementia and other neurodegenerative diseases by 2020. UK dementia research is fully embedded in NHS clinical practice. Expertise exists in all stages and types of dementia, from pre-symptomatic through mild cognitive impairment to more advance stages. This includes Alzheimer’s disease, Lewy body dementias, vascular cognitive impairment, mixed dementias, frontotemporal dementia and other less common forms. Studies span the full translational research pathway.

DOMINO-AD: Donepezil and Memantine for Moderate-to-Severe Alzheimer's Disease

There is currently no cure for dementia or AD, but there are treatments which can modestly improve symptoms - including cholinesterase inhibitors (such as donepezil) and glutamate antagonists (such as memantine). However prior to the DOMINO-AD trial, there was limited evidence to guide treatment decisions as AD patients advanced beyond the mild to moderate severity stages. 

The NIHR CRN supported DOMINO-AD study set out to investigate whether patients with moderate to severe AD would have better cognitive and functional outcomes after 12 months treatment with donepezil, memantine or a combination of the two. The trial assessed whether AD patients with moderate to severe AD, who were already receiving donepezil, benefited from continuing treatment and whether initiating memantine at this stage conferred benefits.

It was the first trial to demonstrate the value of continued drug treatment for patients with moderate to severe AD, providing vital evidence used by the National Institute for Health and Care Excellence (NICE) in their 2018 dementia guideline: ‘Dementia: assessment, management and support for people living with dementia and their carers’. 

As a result of the trial's findings, the NICE guideline recommend that clinicians should not stop the use of cholinesterase inhibitors, such as donepezil, because of dementia severity (i.e. progression to the moderate to severe point). The guidelines also recommend that clinicians should consider combined memantine and cholinesterase inhibitors for patients with moderate AD, and offer the dual treatments to patients if they have severe disease (for those already taking an acetylcholinesterase inhibitor).

The PrOVIDe study - Prevalence of Visual Impairment in Dementia

The risks of developing dementia and visual impairment both increase with age. The PrOVIDe study, funded by the NIHR Health Services and Delivery Research (HS&DR) Programme, was designed to better understand the prevalence of visual impairment in people with dementia, and to identify how eye care can be improved for people with dementia.  The NIHR Clinical Research Network (CRN) provided a package of support throughout the study, from development, through setup and delivery, to study closure.

The findings have led to proposals to ensure eye care is recognised as being as important to those with dementia as the general population. The project has also lead to further activity prioritising areas for future research for people with both dementia and visual impairment.

A novel cervical orthosis to support neck weakness due to neurological disease

Many people with neurological conditions - such as motor neurone disease, amyotrophic lateral sclerosis and spinal muscular atrophy - develop neck muscle weakness. This can lead to pain and restricted movement, as well as problems with swallowing, breathing and communication.

A collaborative project led by the University of Sheffield and the NIHR Devices for Dignity MedTech Co-operative, in partnership with the Motor Neuron Disease Association (MNDA) charity and Sheffield Hallam University, obtained funding from the NIHR Invention for Innovation (i4i) Programme to work in collaboration with patients, carers, designers, physiotherapists and a consultant neurologist to develop a new orthotic collar.

The project has developed the Head Up Collar, a CE marked class 1 medical device. The collar has been trialled by over 100 patients – 80% of whom said the collar helped them and they wanted to carry on using it after the trial – and is now being used with suitable patients at 25 NHS Trusts.

Reaching recruitment targets and beyond

People with Parkinson’s disease often have problems with their speech as well as difficulty moving. Speech and language therapy is likely to help, but to date there is little scientific evidence as to which kind of treatment would be most effective.

The NIHR Clinical Research Network (CRN) Dementias and Neurodegeneration (DeNDRoN) Specialty recently assisted the team working on the Parkinson’s Disease COMM study, a pilot project looking at the cost-effectiveness of different speech and language therapy treatments for people with Parkinson's Disease.

  • Read more about the PD COMM study in our case study.

A collaborative success: The South Asian Voices Enabling Dementia Care ‘SAVE-D’ study in Manchester

The NIHR Clinical Research Network (CRN) Dementias and Neurodegeneration (DeNDRoN) Specialty supported a study sponsored by University of Manchester titled ‘SAVE-D’ (South Asian Voices Enabling Dementia Care). This study looked at the challenges that South Asians in Greater Manchester faced, when presented with recognising and addressing memory problems and dementia.

The collaboration was a success and, together with DeNDRoN’s support, the team effectively recruited a strong cohort of South Asian individuals from local NHS Trusts and community settings, surpassing the original recruitment target of 180 participants.

  • Read more about the ‘SAVE-D’ study in our case study.

The DiPALS study - Safety and efficacy of diaphragm pacing in patients with respiratory insufficiency due to amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease or Lou Gehrig’s disease, is an uncommon neurodegenerative disease that affects the brain and nerves and causes weakness that gets worse over time. The DiPALS study, funded by the NIHR Health Technology Assessment (HTA) Programme, was designed to establish the safety and efficacy of diaphragm pacing with the NeuRx/4 Diaphragm Pacing System in patients with respiratory muscle weakness due to ALS. The NIHR Clinical Research Network (CRN) provided a package of support throughout the study, from development, through setup and delivery, to study closure.

The trial results showed that the addition of diaphragm pacing to standard care with non-invasive ventilation was associated with decreased survival in patients with ALS. The results suggest that diaphragmatic pacing should not be used as a routine treatment for patients with ALS in respiratory failure.

Managing Agitation and Raising Quality of Life in Dementia: The MARQUE study

Professor Gill Livingston is a researcher at the Mental Health of Older People Unit, University College London (UCL), and is leading the MARQUE study, a major longitudinal study aimed at improving management of agitation and raising quality of life for people with dementia living in care homes.

Find dementia and neurodegeneration studies in your area

You can find out more about dementias and neurodegeneration studies in your area through the Be Part of Research website.

We provide world-class health service infrastructure - research support staff such as clinical research nurses, and research support services such as pharmacy, pathology and radiology - to support organisations seeking to conduct clinical research in the NHS in England. Some of this research is funded by the NIHR, but most of it is funded by NHS non-commercial partners and industry.

We support the set up and delivery of clinical research in the NHS through our Study Support Service and our Research Design Service helps researchers develop proposals to secure funding from our research programmes.

Support Dementias and Neurodegeneration research

The Dementias and Neurodegeneration (DeNDRoN) specialty supports the set up and delivery of clinical research in the NHS in a range of dementia and neurodegenerative diseases. Our job is to ensure that studies into dementias and neurodegeneration that are included in our national portfolio of research receive the right support to make sure they are delivered successfully in the NHS.

The Government’s Challenge on Dementia sets out the ambition for England to be the best place in the world to undertake research into dementia and other neurodegenerative diseases by 2020.  UK Dementia research is fully embedded in NHS clinical practice. Expertise exists in all stages and types of dementia, from pre-symptomatic through mild cognitive impairment to more advance stages. This includes Alzheimer’s disease, Lewy body dementias, vascular cognitive impairment, mixed dementias, frontotemporal dementia and other less common forms. Studies span the full translational research pathway.

Neurodegeneration as part of the Dementia and Neurodegenerative Diseases (DeNDRoN) Specialty, is made up of leading research-interested clinicians and practitioners at both national and local levels. We support studies in neurodegenerative conditions such as Parkinson’s, Huntington’s and Motor Neurone Disease and ensure they are delivered to time and target.

We support researchers from across a range of disciplines including neurology, old age psychiatry, geriatric medicine, genetics, general practice, psychology, nursing and other allied health professions. We deliver this research across a wide range of health care settings, including primary and community care, mental health services and acute hospitals.

We are working with NHS trusts, research funders and patient support organisations to promote the successful delivery of research studies in the NHS that will address patient’s needs. We help researchers to understand how their studies into dementias and neurodegenerative diseases will work in the NHS.

Where there are considerable overlaps with other specialty areas, for example neurological disorders, mental health and age and aging, we work closely with our colleagues from across the Network to deliver high quality collaborative research.

VIDEO: How the NIHR can support your dementia research in the UK.

National Dementias and Neurodegeneration Clinical Specialty Leads

Each of our 15 Local Clinical Research Networks has at least one nominated local Clinical Specialty Research Lead for Dementias and Neurodegeneration. These clinicians lead research groups to promote and support Dementias and Neurodegeneration research within the NHS Trusts in their area.

At a national level the local leads come together to manage the national Dementias and Neurodegeneration clinical research portfolio. This involves regularly reviewing the progress of studies, identifying barriers to recruitment, and coming up with solutions and strategies to help overcome those barriers. Our National Specialty Group of clinical experts offer advice and support to commercial and non-commercial customers looking to conduct research in the NHS.

Working with the Life Sciences

The NIHR Clinical Research Network Dementias and Neurodegeneration Specialty has been very successful in recruiting patients to studies.  With our membership extending throughout the UK we can facilitate and recruit to a wide range of diverse studies. In addition to this, Join Dementia Research has been established to facilitate recruitment to ethically approved dementia research studies taking place in the UK.

Specialty Profiles for Life Sciences Industry

Find out about what our Dementias and Neurodegeneration specialty can offer the life-sciences industry and why you should place your study in England.

What else do we offer?


Clinical Studies Groups (CSGs)

Clinical Studies Groups provide strategic oversight, support and monitor development and delivery of specialty research across the UK. The groups aim to ensure high quality delivery of a well-designed and balanced mix of commercial and non-commercial research, and that this is available to all NHS patients. Membership includes clinical, scientific, funding body, patient and carer representatives from around the nation. It provides leadership, facilitated research development and multi-centre collaborations as well as bringing new studies to the clinical environment in an effective and timely manner. CSGs are represented on the NIHR CRN specialty groups, enabling collaboration.

CSGs exists for the following neurodegenerative disorders:

Portfolio Development Groups (PDGs)

Portfolio Development Groups are composed of experienced researchers from diverse disciplines and lay members within the specialty field that promote the development of innovative ideas into funded research. The groups' remits includes identifying research gaps as well as supporting Writing Groups to formulate and prepare grant applications for clinical studies.

PDGs exist for the following neurodegenerative disorders:

Dementia and Neurodegenerative Diseases are increasingly understood to have commonalities in underlying mechanisms, patient experience, and symptoms; and their management is increasingly multi-disciplinary and converging over time. Advances in understanding of these diseases and new treatments are likely to come from inter-disciplinary research between them.  Where there are considerable overlaps with other specialty areas, for example neurological disorders, mental health and ageing, we also work closely with our colleagues from across the Network to deliver high quality collaborative research.

The Dementias and Neurodegeneration (DeNDRoN) Specialty supports a wide range of research in these disease areas, including research into the underlying mechanisms and causes, ways to prevent, new symptom- and disease-modifying treatments and better care.

Our local teams of research staff are specialists in facilitating the set up and recruitment to studies in England. We have substantial experience of supporting all types of research studies including complex and multi-centre clinical interventions. We work with researchers and clinicians in a diverse range of specialities and collaborate with patient charities.  We have a strong tradition of public and patient involvement in our research.

Our Dementia Specialty has a skilled and experienced workforce, enhanced by our Rater training programme. Through Join Dementia Research we help facilitate patient participation in research and accelerate recruitment to dementia studies.

You can find out more about Dementias and Neurodegeneration studies in your area through Be Part of Research.

Dementia Researcher: A network for early career researchers

Being an early career researcher can be incredibly rewarding and challenging too. It is as much about new discoveries, collaborations and ideas as it is about the pressure to publish papers and the competition for funding. The Dementia Researcher website is a place to go to when you need some inspiration or want to get advice from other early career researchers and leading experts

Join Dementia Research

Join Dementia Research is a nationwide service that allows you to register your interest in volunteering for vital dementia research studies.  Once signed up you’ll be alerted to appropriate studies in your area. It’s also possible to register on behalf of someone who may not be able to register themselves, acting as a representative.

Find a Dementia and Neurodegeneration study in your area

You can find out more about dementias and neurodegeneration studies in your area through the Be Part of Research website.

Patients and carers: Taking part and getting involved in Parkinson's or Motor Neurone Disease research

If you are a patient, carer, or perhaps a member of public with an interest in either Parkinson's or Motor Neurone Disease (MND), you can help research. We are keen to involve you in the research that is developing and ongoing in the United Kingdom. Find out more:

We have strong links with national charities. For dementia research, that includes Alzheimer's Research UK and Alzheimer's Society. For neurodegeneration, we have links with Parkinson’s UK, the Huntington’s Disease Association and the Motor Neurone Disease Association.  These relationships facilitate patient involvement in research and provide important synergies with providing service excellence across the UK. Several studies on the NIHR Clinical Research Network portfolio have been funded by these charities and, through the efforts of our Specialty Group, have recruited to time and target.

The specialty works closely with Dementias and Parkinson’s Disease Portfolio Development Groups and the Motor Neurone Disease and Huntington's Disease Clinical Studies Groups.

Helen Robinson: A nurse Principal Investigator

Helen Robinson is an Advanced Nurse Practitioner from Middlesbrough, who became one of the first Nurses to become a Principal Investigator of a research study in her Trust in Tees, Esk and Wear Valleys. We interviewed Helen to find out how and why she got involved in clinical research.

Read Helen's story

Taking part in Parkinson's disease research: Stephen's story

Stephen Roberts talks about his experience of taking part in Parkinson's Disease research.

Stephen's story

Caring for someone with dementia and taking action on research

Shirley Nurock recalls her experience of caring for someone with dementia and how you can take action on research.

Shirley's story

Research changed my life: Michelle

Michelle was diagnosed with Parkinson’s in August 2009, which really knocked her for quite a while.  Increasingly, over the last five years, clinical research has helped to rebuild her confidence and given her hope for the future.

Michelle's story

Why I’m involved in Parkinson's disease research

Colin Sanders was diagnosed with Parkinson’s in 1999. He’s part of our Research Support Network and is passionate about supporting progress towards a cure. He talks about his involvement in research...

Colin's story

Funders of Dementia Research

Funders of Neurodegeneration Research

The NIHR provides the support and facilities the NHS needs for first-class research by funding a range of infrastructure.

NIHR Biomedical Research Centres

NIHR Biomedical Research Centres (BRCs), partnerships between England’s leading NHS organisations and universities, conduct translational research to transform scientific breakthroughs into life-saving treatments for patients. The following BRCs undertake dementias and neurodegeneration research:

NIHR Collaborations for Leadership in Applied Health Research and Care

NIHR Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) are collaborations between local providers of NHS services and NHS commissioners, universities, other local organisations and the relevant Academic Health Science Network. The primary focus of CLAHRCs is on research targeted at chronic disease and public health interventions. The following CLAHRCs undertake dementias and neurodegeneration research:

NIHR Medtech and In vitro diagnostics Co-operatives

NIHR Medtech and In vitro diagnostics Co-operatives (MICs) build expertise and capacity in the NHS to develop new medical technologies and provide evidence on commercially-supplied in vitro diagnostic tests. The following MIC undertakes dementias and neurodegeneration research:

NIHR Dementia Translational Research Collaboration

The NIHR Dementia Translational Research Collaboration (D-TRC) provides a network of world-leading investigators who are available to work with industry, charities and other funders to further research and develop new treatments for dementia. Our researchers are experts in translating new discoveries in dementia research from basic science into the clinic, and can provide access to patients from multiple sites across England.

Work with our infrastructure

All of the NIHR facilities and centres are opening to working with the public, charities, industry and other partners. If you are interested in collaborating with the NIHR please contact the NIHR Office for Clinical Research infrastructure: nocri@nihr.ac.uk 

The NIHR funds and supports world-class experts in the field of dementias and neurodegeneration. In addition, our experts in the NIHR Clinical Research Network (National Specialty Leads) can advise on delivering your dementias and neurodegeneration study in the NHS

Professor John O'Brien

Professor John O'Brien is the NIHR Clinical Research Network National Specialty Lead for Dementias.

Professor O’Brien is Professor of Old Age Psychiatry at the University of Cambridge and Honorary Consultant Old Age Psychiatrist. From 1995 to 2012 he was Senior Lecturer and then Professor at Newcastle University. He has research interests in the application of imaging biomarkers in dementia and late life depression, and has particular expertise in Lewy body and vascular dementias. He has published over 450 peer reviewed scientific papers on these topics, and is a NIHR Emeritus Senior Investigator.

Currently he leads several research programmes, including a NIHR Programme on improving the diagnosis and management of Lewy body dementia (DIAMOND-Lewy). He is a member of several national and international guideline, advisory and diagnostic groups, and was a member of the NICE Dementia Guideline Group. He co-leads the British Association for Psychopharmacology Dementia Guideline Group and he has had several international roles, including as a Past President of the International College of Geriatric Psychopharmacology. He has a keen interest in teaching and training, co-leads the annual BAP Old Age Course and has developed e-materials for both BAP and IPA.

He led the North East DeNDRoN Clinical Research Network from 2007-2012 and was appointed National Specialty Lead for Dementias in 2015.

E: john.obrien@medschl.cam.ac.uk

Dr Camille Carroll

Dr Camille Carroll is the NIHR Clinical Research Network National Specialty Lead for Neurodegeneration.

Dr Carroll is an academic consultant neurologist at Plymouth University Peninsula Schools of Medicine and Dentistry.

She undertook preclinical medical training, with an intercalated PhD, at the University of Manchester  and completed her clinical training at the University of Oxford in 1997.

In 2007 Dr Carroll was awarded a Medical Research Council fellowship. This allowed her to develop research interests investigating neuroprotective mechanisms in cell culture models of Parkinson's disease.

Her current focus is on early disease detection and clinical trials of neuroprotective interventions in Parkinson's disease (PD), currently being the chief investigator of a multi-centre clinical trial of simvastatin as a potential neuroprotective therapy in PD. She is also interested in the use of technology (wearable sensors and apps) for early disease detection, personalising therapy and monitoring disease progression.

She has overseen the development of a PD DNA bank (2700 samples) and a regional PD clinical research register. She leads development of the Parkinson’s disease service in Plymouth and is Chair of the Peninsula Parkinson’s Excellence Network.

She was appointed National Specialty Lead for Neurodegenerative Disease in 2017. This subspecialty includes PD, Motor Neurone Disease (MND) and Huntington's Disease (HD).

E: camille.carroll@plymouth.ac.uk

Professor Martin Rossor

Professor Martin Rossor is the NIHR National Director for Dementia Research, a programme that facilitates the Department of Health’s research response to commitments under the Dementia Challenge and the G8 Dementia Summit.

He is Professor of Clinical Neurology at the National Hospital for Neurology and Neurosurgery. He is also an NIHR Senior Investigator.

Related specialties

Ageing

Neurological disorders

Primary Care

 

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