Log in
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.
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.
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.
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.
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.
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 very few evidence-based psychological interventions for people with Alzheimer's disease and other dementias. Of these, cognitive stimulation has the strongest evidence-base. Developed by Bob Woods (Bangor University) and Martin Orrell (UCL) in the late 1990s, the approach has proven effective in maintaining both cognitive function and quality of life. Recommended in guidelines around the world for use with people with mild to moderate dementia as the major evidence-based non-pharmacological intervention, it has assisted literally thousands of people with dementia and their carers globally to have a better quality of life both before and since 2008.
Research on the economic case for interventions to prevent mental illness, to address mental health needs and to promote mental wellbeing has been conducted by the Personal Social Services Research Unit (PSSRU) in the LSE Health and Social Care group with demonstrable impact on government policy in England and beyond. Research has influenced preparation of the National Dementia Strategy for England and the Prime Minister's Challenge on Dementia; underpinned the establishment of the Improving Access to Psychological Therapies (IAPT) programme; and generated part of the evidence base for the emphasis in the 2011 English mental health strategy on promoting mental health and preventing mental illness. The work has also influenced discussion led by the World Health Organization (WHO) and European Parliament.