Area of Research: Dementia and Neurodegeneration
Section 1: Summary of main strands/themes for research
This Unit will seek to inform policy in the areas of dementia and neurodegeneration. NIHR is increasing funding for dementia and neurodegeneration research through major funding programmes and via supporting training and career development. To date, our funding for policy research in these areas has been via the Policy Research Programme and within existing Policy Research Units (PRUs). This will continue to be the case, however this PRU will be a new resource to boost evidence for dementia and neurodegeneration policy. Themes we expect this new unit to cover include:
Policy interventions to reduce or prevent dementia and other neurodegenerative conditions, including:
- Determining which of the modifiable risk factors for dementia and other neurodegenerative conditions are most capable of being reduced by policy intervention, to help determine priorities for action.
- Determining whether risk factors identified for dementia are also risk factors for other neurodegenerative and neurological conditions.
- Using research to inform implementation of evidence-based practice on preventing or delaying the onset of dementia.
- Increasing knowledge of what works in dementia prevention, particularly in relation to take-up of positive interventions, and inequalities amongst people of black ethnicity, people from more deprived backgrounds, and women.
- Understanding whether dementia and other neurodegenerative conditions’ risk can be a motivating factor for the adoption of healthy behaviours.
- Understanding the most effective interventions to prevent or delay cases of dementia in the context of the ageing population.
- Modelling the relationship between dementia prevention work and demand for adult social care.
- Evaluating policy initiatives which aim to reduce risk of dementia.
How to improve the experience of diagnosis, and how to improve post-diagnostic care and support offered to people living with dementia and other neurodegenerative conditions, and their carers. This should include:
- Assessing this at all stages of the journey.
- Evaluating the training currently available to the health and social care sector on dementia and other neurodegenerative conditions to identify evidence-based best practice.
- Understanding the variation in access to health and social care services across England for people with dementia and other neurodegenerative conditions, including barriers to receiving a timely diagnosis.
- Scoping and advising on the design of an experience survey for people affected by dementia to support the delivery of the dementia strategy.
- Exploring the role of technology in supporting people with neurodegenerative conditions to live well.
- Building a greater understanding of how dementia and other neurodegenerative conditions interact with other most common co-occurring conditions (including for example frailty and depression) and examples of best practice in supporting people living with multiple conditions.
- Developing measures for quality of life for people with dementia and other neurodegenerative conditions, which can be used to help evaluate and improve local services.
Data needs for dementia and neurodegenerative condition policy, including developing and using data in relation to the following issues:
- Variation in provision of and access to local diagnostic and other community health services (including community rehabilitation).
- Avoiding crisis situations for people with dementia and other neurodegenerative conditions.
- What are the characteristics of “living well with dementia” when residing in a care home and in your own home?
- What are the characteristics of a well implemented good care plan/advanced care plan?
- Avoiding delayed discharges from hospital: What are the characteristics of a “good” acute hospital, community care and social care interface?
- How can people living with dementia and other neurodegenerative conditions be supported better in the community to avoid unnecessary admission and re-admission to hospital?
- A good end of life with dementia: What is required within service provision to ensure that people with dementia and other neurodegenerative conditions have a good death? What support is needed for their families, carers and health and care staff?
- Does the Dementia pathway deliver for people with dementia and their carers?
Approaches to End-of-Life Care and how these need to be tailored to different conditions/populations
Research is expected to include both secondary analysis of data as well as new primary research.
Section 2: Details of policy context and background
Dementia includes Alzheimer’s disease, Lewy body dementias, vascular cognitive impairment, mixed dementias, frontotemporal dementia and other less common forms. A new 10-year plan for dementia will set out the government’s intentions and commitment to improving the lives of people living with dementia and their carers, focusing on three main areas:
- Preventing avoidable cases of dementia
- Improving people’s experience of being diagnosed and living with dementia
- Championing participation and innovation in research
Neurodegeneration includes conditions such as Parkinson’s, Huntington’s, chronic traumatic encephalopathy and Motor Neurone Disease (MND) as well as associated risk factors including traumatic brain injury. Some neurodegenerative conditions, such as Huntington’s, ataxias, and certain rare metabolic disorders, are classified as rare, affecting fewer than 1 in 2,000 people. There are over 7,000 different rare conditions, collectively affecting approximately 3.5 million people in the UK. People diagnosed with rare conditions often experience common challenges, as well as having distinct needs relating to their condition.
There is significant variation in the services provided for people with neurodegenerative and wider neurological conditions, and addressing this variation is a policy priority. There is work underway within the NHS to improve neurology services, particularly the Neuroscience Transformation Programme which will support services to deliver the right service, at the right time, for all neurology patients closer to home.
While not typically considered a neurodegenerative condition, acquired brain injury (ABI) is a particular policy priority at present as the Department have agreed to lead the development of a cross-government strategy on ABI and potentially other neurological conditions (including some neurodegenerative conditions such as MND and Parkinson’s) subject to the outcomes of a call for evidence. The call for evidence closed on 6 June and officials are currently analysing responses. Any decisions made on the focus of the strategy will be communicated in due course, including any areas identified as a priority for policy development or research.
Section 3: Justification for research topics
We know that the number of people living with dementia and other neurodegenerative conditions will increase over the coming years, as our population ages. It is also likely that the length of time people live with these conditions will increase as treatments improve. It is therefore essential that our policy making in these areas is underpinned by robust data and evidence to ensure that the health and care system is best equipped to meet the challenges ahead and continue to provide the support needed in an efficient and compassionate way.
Section 4: Other related research activity of which the Unit will need to be aware
Government has invested considerably in dementia and neurodegeneration research during successive dementia strategies. This has included policy research commissioned via our Policy Research Programme and in current and former Policy Research Units (such as the Adult Social Care Research Unit, Economics of Health Systems and Interface with Social Care Unit and the Older People and Frailty Unit).
There is a growing evidence base internationally on the risk factors for dementia and translating these into prevention work, but limited research activity on the policy interventions that might be used and the costs / benefits of these.
The increased focus on Adult Social Care Research from the NIHR has also improved the evidence base for dementia, given that the majority of people in receipt of social care support will have dementia.
To date, our policy research on how to best support people with other neurodegenerative conditions has been limited.