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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.
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.
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 University of Nottingham's Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care has enhanced the understanding, implementation and uptake of advance care planning for end of life care. Its work has shaped public policy and influenced national initiatives that have improved quality of life and reduced the number of deaths in hospitals. The research has been cited as an exemplar by the World Health Organisation and has helped inform policymaking at European level. It has guided professional practice, educated care staff and contributed to a more positive public attitude towards talking about end of life issues.
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.
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.
Research findings have informed the development of training and support for care home inspectors and toolkits for use by caring professionals, all of which are provided through the Care Quality Commission (CQC) website. Findings have also been disseminated nationally and internationally through a book aimed at practitioners and policy makers that has now been published in German and Polish and is selling strongly in Australia and the USA. The study has furthered professional and public awareness of the need for improved night-time care in care homes, in particular improved communication (from staff to residents) and training.
Improving patient experience of health services is a policy priority worldwide. The University of Manchester (UoM) has conducted research on patient experience since 1995, leading to the development of a series of validated measures for assessing patient experience of quality of care in primary care, including access to care and the degree to which services are patient-centred. Our measures have been in routine use in the NHS since 2004, sent to samples of several million patients. The data have been used to provide incentives for the highest quality practices, and to inform policy makers about current care throughout the UK.
Beneficiaries of this research are patients in intensive care and healthcare staff. This research has had impacts in two distinct but related areas:
These advances are informed by our synthesis and application of rigorous, innovative methodologies relating to questionnaire development and real-time data collection.
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.