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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.
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.
Newcastle research on dementia contributed two aspects that helped to shape high-level policy: first that prevalence of the condition was higher than previously suspected, with implications for care of the ageing UK population. Secondly, that patients often experienced long delays before a diagnosis of dementia was given, leading to distress both for patients and their families. This research informed policy documents such as the Prime Minister's 2012 Challenge on dementia and national guidance in the form of commissioning packs. Patients benefit from more timely diagnosis with a better understanding of their needs and wishes and the NHS benefits through potential reductions in long term care costs.
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.
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.
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.
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.
The Personal Social Services Research Unit (PSSRU) at the University of Manchester (UoM) has run a programme of research examining community care of older people since 1996. The findings have informed key government decision-making around two important national policy initiatives between 2008 and 2013: (1) the development and implementation of Personal Budgets in Social and Health Care and (2) National Strategies to improve Dementia Services. This has affected the national provision of social care for older people and other adult social care users. In 2011-12, there were over 1.2 million people in England receiving social care affected by these policy changes (over 800,000 aged 65+), with a cost of £6,600m spent on their care (NHS and Social Care Information Centre).
Quality of care for the increasing numbers of frail older people is an issue of international concern. Led by Professor Meyer at City University London, in partnership with Age UK and Dementia UK, My Home Life (MHL) is a collaborative movement of people involved with care homes for older people. It was established to improve the quality of life of everyone connected with care homes for older people and has become the recognised voice for the sector. The original underpinning research and ensuing projects all focused on knowledge translation, in particular the factors that enhance quality improvement in care homes. MHL actively works with care homes to progress quality improvement and share the lessons learned throughout the system. The programme has had a significant impact on both policy and practice in health and social care, influencing Government policy and supporting practice improvement across national and international borders.
The research has had significant impact in the UK on the development of social and spiritual support for people at the end of life and their families. With Professor Holloway as Social Care Lead on the National End of Life Care Programme (NEoLCP) since 2009, the research has underpinned the launch of a framework for the delivery of social care at the end of life which is now in its second phase of implementation. The framework is endorsed by the Association of Directors of Adult Social Services and has led to local and regional Action Plans and social care practice initiatives. The research on spirituality has led to scoping and training initiatives in healthcare practice and in the funerals industry within the UK and internationally.