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Research by Professor Carol Brayne, has led to increased understanding and awareness of dementia as a key public health issue of our time. Outcomes of her DH/MRC funded longitudinal Cognitive Function and Ageing Studies (CFAS) have contributed to national and international health policy on dementia as well as public debate.
Specifically, the CFAS study provided evidence that was used in the highly influential report "Dementia UK" which led to the development of the 2009 National Dementia Strategy. Results from CFAS have increased healthcare workers' understanding of the condition, such as the complexity of cognitive impairment and the relationship between illness and disability.
World leading research from the Bradford Dementia Group (BDG) has transformed policy and practice in dementia care by demonstrating the need to understand the experience and perspective of people living with dementia in order to ensure their well-being. It has provided a model of dementia care, Person-Centred Care (PCC), and an observational measure and practice development methodology, Dementia Care Mapping (DCM). In England, PCC and DCM are integral to the National Institute for Health and Care Excellence (NICE) guidelines and DCM is endorsed by the National Audit Office. Regulators use our DCM derivative, the Short Observational Framework for Inspection (SOFI) to audit care. Our research has wide international reach. Since 2008, 3616 practitioners have been trained in DCM in the UK and a further 3189 internationally.
King's College London (KCL) research and the engagement of KCL researchers in the process of national policy formation have led to the implementation of early diagnosis for people with dementia. Being diagnosed early and well is one of the most important interventions for people with dementia and their families, ensuring effective interventions can be provided early and throughout the course of the illness. This is the fundamental aim of the Croydon Memory Service Model, initially developed by KCL researchers. KCL research has also featured in patient-focused literature and in reports circulated globally by the World Health Organization and Alzheimer's Disease International.
The work of the Scottish Dementia Working Group (SDWG), a self-advocacy and campaigning group of people with dementia, has influenced the image and role of people with dementia in Scotland and internationally. Since 2005 there has been increasing engagement with, and involvement of, people with dementia in the policy process leading up to the Scottish Dementia Strategy (launched 2010). The SDWG currently has 171 members across Scotland and has acted as a catalyst for change in dementia care, as evidenced by its direct involvement and representation in influencing education, training and practice development across dementia care in Scottish and European health and social care sectors. In 2012 the European Dementia Working Group was launched based on the SDWG model. Its work is underpinned by research that rejects the exclusion of people with dementia from claiming and using a voice in policy and practice.
Dementia with Lewy bodies (DLB) is one of the most common subtypes of dementia. Although DLB shares characteristics with Alzheimer's disease, the condition requires specific treatment and care. New diagnostic criteria generated at Newcastle allow diagnosis of DLB as a distinct condition from Alzheimer's, and these criteria have been incorporated into five national and international guidelines. The work also resulted in an accurate and sensitive diagnostic technique, commercialised by GE Healthcare as the DaTSCAN imaging tool, which is approved by the US Food and Drug Administration and the European Medicines Agency. These new diagnostic criteria allow appropriate treatment and management of DLB for the first time.
Dementia poses substantial public health and societal challenges for Europe as there is currently no cure, and it is estimated that 10 million Europeans will be living with the disease in 2040. Good quality information allows for decision-makers to establish appropriate health policies and target resources where they are needed and where they are effective. The ALCOVE project (2011-2013) established a European network where knowledge on dementia could be shared and developed a series of recommendations for improving dementia care and quality of life across Europe. A particular strand of research within the project on timely diagnosis of dementia led by Worcester's Association for Dementia Studies has already stimulated policy debate on this issue in the UK and elsewhere in Europe, while a `toolbox' developed through the project for those living with dementia and their carers and for health and social care professionals has informed care practice.
UCL research into end-of-life care has informed policy on palliative care for dementia patients and influenced NICE quality standards for end-of-life care in three areas: spirituality, psychological assessment, and advance care planning. The research has also been used by the charity St Mungo's to develop educational resources for services working with homeless people with advanced liver disease. Evidence collated by UCL on the importance of palliative care in heart failure has formed the basis of Caring Together, a £5m investment by Marie Curie Cancer Care and the British Heart Foundation to improve end-of-life care in heart failure. A review of the effectiveness of hospice care is being used to support commissioning bids for end-of-life care services.
CIRCA, Computer Interactive Reminiscence and Conversation Aid, is a novel touchscreen computer system designed to support conversation between people with dementia and their caregivers. CIRCA was based on research into the memory and communicative problems of people with dementia. The beneficiaries of this research are: i) practitioners and professionals in healthcare services, who have improved training and caregiving relationships - a total of 46 NHS, third sector and private care organisations from across the UK have installed CIRCA since 2009; and ii) people with dementia, who have enhanced social interactions and quality of life.
There are an increasing numbers of people living into very old age. At the same time there is a drive to enable people to live within their own homes for as long as possible. Consequently, health and social care services that previously would have experienced very few people with dementia now have this as part of their core function. Yet there is no tradition in these services of supporting people with dementia and there are many reports of inadequate care. For example, Valleley reports that over half of people living in extra-care housing with dementia were admitted to other care settings during the first two years due to challenging behaviour, conflicts with staff and other residents, and distress on the part of the person with dementia.i Similarly, hospital patients with acute and chronic medical conditions concomitant with dementia are consistently reported to experience poorer quality outcomes than patients with similar conditions without dementia.ii The research described below has had significant benefits for those living with dementia both in extra-care housing and in hospital settings, primarily at the national level but also internationally. It has enhanced quality of life for individuals living with dementia, improved the practice of professionals working with people with dementia and had economic benefits.
Research at UCL has greatly contributed to the understanding of the dopaminergic system in Dementia with Lewy bodies (DLB) with an initial publication in Lancet 1999 showing that patients with DLB have reduced uptake of dopamine transporter compared to patients with Alzheimer's disease and that this could be a useful biomarker for DLB. Since then the research conducted on imaging of dopamine transporter uptake has had national and international impact and significantly contributed to a change made in the Revised Clinical Criteria for the diagnosis of Dementia with Lewy bodies (McKeith et al 2005) which now includes "low dopamine transporter uptake in the basal ganglia demonstrated by SPECT imaging" as a "suggestive feature" for DLB.