Title: Identification and Care of Patients at Risk of Post-Stroke Dementia
Funder: Department of Health and Social Care

Abstract: Stroke and dementia are closely linked; like stroke, the most common types of dementia are more common in people with high vascular risk. In the year after a stroke, one in ten people can develop dementia; this is called post-stroke dementia (PSD). National standards define the initial specialist care for stroke-survivors; six months post stroke, patients are usually returned to the care of their General Practitioner (GP). Primary care follow up involves yearly check-ups, via the Quality and Outcomes Framework standards, focused mainly on management of individual risk factors. In England, a policy emphasis on improving dementia care has led to the introduction of memory assessment in people at high risk; one group is stroke-survivors over 60 years. Generally there is no agreed formal process in specialist stroke services to identify which stroke patients are at the greatest risk of developing dementia. There is also no single accurate and practical risk assessment tool for health professionals to use. This is in contrast to heart disease, where electronic tools such as QRISK2, enable clinicians to combine variables to calculate an individual's future risk of disease. This allows better planning of care for those at increased risk. Aim(s) The aim of my research is to critically review the care received by people who have had a stroke and are at high risk of dementia through: i) Describing current care provision from the perspectives of patients, carers and key professionals ii) Developing and exploring the use of risk prediction tools to identify those most at risk and iii) Seeking the views of professionals on the key findings from i) and ii) with a view to improving future care through the development of an integrated clinical pathwaySpecific objectives include: Describe the current care experience of stroke-survivors with cognitive difficulties and the views and experiences of primary and secondary care professionals providing their care (Phase 1) Validate the accuracy of risk prediction models for dementia in stroke survivors (Phase 2) Seek consensus expert opinion on findings from phases 1 and 2 on how to improve the management of these individuals in the future (Phase 3) Plan of Investigation The programme utilises mixed methodology with 3 separate but interlinked work-phases.Phase 1 (Descriptive/qualitative study): Data from the cognitive difficulties section of the Sentinel Stroke National Audit Programme will be collated from eight local stroke service providers. Semi-structured interviews will be conducted with health professionals (stroke and primary care) and with a range of stroke-survivors and their carers to explore their current care experiences. Themes and identified gaps in clinical care will be used to develop material for the electronic Delphi study (phase three). Phase 2 (Secondary analysis of cohort data): National and International longitudinal cohort datasets will be harmonised and stroke-survivors will be identified from this dataset. Existing dementia risk models will then be validated and accuracy assessed. The accuracy with additional (and/or removal) of variables in existing models will also be assessed. The most accurate model in predicting dementia in stroke-survivors will then be brought into phase three. Phase3 (Delphi Study): Phase 1 and 2 findings will be used to inform a modified three round electronic Delphi survey with primary and secondary care experts. Consensus will be sought on the essential components of a dedicated clinical service and if a risk prediction model should be used. Benefits to Patients and the NHS I aim to develop a dedicated clinical pathway, incorporating an objective risk assessment tool, to identify stroke-survivors at greatest risk of future dementia. This will promote the use of secondary prevention strategies and timely access to information and treatments.

Lay abstract: Numbers of people with stroke or dementia are increasing because of our ageing population. These diseases are closely linked; they can both be caused by problems with the brain's blood supply. Like stroke, the most common types of dementia are more common in people at high risk of heart disease and diabetes. After a stroke, a person's risk of developing dementia in the future is doubled. In the year after a stroke, one in ten people can develop dementia; this is called post-stroke dementia (PSD). National standards guide the initial specialist care for people who have had a stroke. After six months of specialist care, the General Practitioner (GP) usually takes on responsibility for follow up of patients who have had a stroke. Yearly check-ups are focused mainly on management of individual risk factors such as blood pressure. In England, a policy emphasis on improving dementia care has encouraged health professionals to identify people with dementia at an earlier stage in the illness; GPs and acute hospitals now undertake memory assessment in people at high risk. One high-risk group is people over 60 years who have had a stroke. However, specialist stroke services have no guidance on how to identify the stroke patients who are at the greatest risk of developing dementia. Also there is no single accurate and practical risk assessment tool for health professionals to use. This is in contrast to heart disease, where electronic tools such as QRISK2, allow doctors to take a number of different factors (e.g. age, cholesterol, blood pressure) and combine them to calculate an individual's future risk. For people at high risk, this allows better planning of care. The aim of this programme of work is to critically review the care received by people who have had a stroke and are at high risk of dementia through:i) Describing current care provision from the perspectives of patients, carers and key professionals ii) Developing and exploring the use of risk prediction tools to identify those most at risk and iii) Seeking the views of professionals on the key findings from i) and ii) with a view to improving future care. In phase one, I will describe the current care of people who have had a stroke and have memory problems. Firstly, data from eight local stroke services (collected for a national stroke audit) will be used to identify the number of people who have been asked whether they have had any memory problems before leaving stroke services at six months. We will then interview two groups, stroke-survivors (and their carers) and a number of professionals: i) stroke doctors and nurses who perform six-month reviews to find out how these people are assessed, what support they get if they have memory problems and what they feel their role should be and ii) primary care staff including GPs (providers and commissioners) and practice nurses, about their experience of assessing individuals over the age of 60 who have had a stroke.In phase two, I will explore the development and usefulness of a risk assessment tool for PSD by combining data from several large, world-wide studies involving people who have developed PSD. This will find out how accurate existing risk assessment tools are in predicting PSD.In phase three, I will use a technique called a Delphi Study, which seeks a consensus from a panel of experts over the course of several surveys. I will survey professionals (GPs, practice nurses, stroke and memory service experts) on best care' and clarify the role of risk assessment tools for finding those at high risk of PSD based on the earlier phases of the research programme. In terms of benefits to patients and the NHS, I intend to use my findings to develop a clinical pathway, which links specialist stroke services and primary care, to improve the detection and care of people with PSD. This will enable doctors to diagnose PSD earlier, which will mean that patients and families have access to appropriate support and information when they need it and plans can be made for future care. With the help of stroke and dementia research networks, I have had strong patient and public involvement in developing this programme, including people who have had a stroke or have early dementia. They will continue to help develop materials for the project and steer the project to ensure that patient benefit remains at its focus. Following the completion of the project, they will also help to inform their networks of the findings.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: STROKE;NEUROLOGICAL