Summary of the impact

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.

Summary of the impact

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.

Summary of the impact

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.

Summary of the impact

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.

Summary of the impact

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.

Summary of the impact

Cognitive Stimulation Therapy (CST) is an evidence-based, brief, group therapy for people with mild to moderate dementia. It was developed and evaluated by UCL in collaboration with Bangor University. Our research showed significant benefits in cognition and quality of life plus cost-effectiveness. Cognitive Stimulation for people with mild/moderate dementia of all types is recommended by NICE and is now in widespread use across the UK and the rest of the world in a variety of settings including care homes, hospitals and the community. A recent audit by the Memory Services National Accreditation Programme reported that 66% of UK memory clinics surveyed were using CST.

Summary of the impact

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.

Summary of the impact

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.

Summary of the impact

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.

Summary of the impact

The project:

1. Achieved positive changes in local health and social care policy and practice that directly responded to the concerns and experiences of older people;
2. Enhanced the knowledge and practice of practitioners and policy makers, at national and local levels, about the experiences of older people and carers of moving across service boundaries ("transitions");
3. Developed approaches that researchers and service commissioners and providers can employ to 1) involve marginalised older people in research and service development and 2) promote the citizenship of older people through their participation as co-researchers;
4. Made the research findings accessible to practitioners and service providers through feedback events and workshops.