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Diagnosis and management of dementia in primary care

Date: 21 May 2015

Information about how to manage symptoms and access services by people with dementia and their carers, is often insufficient during the course of the disease, from diagnosis through to end of life care. Funded by an NIHR Programme Grant, Steve Iliffe, Professor of Primary Care for Older People at University College London, and his research team, developed the EVIDEM (Evidence-based Interventions in Dementia) programme to help change this situation by studying the diagnosis and management of dementia in primary care. The findings have been published in the journal Programme Grants for Applied Research.

EVIDEM sought to find out whether workplace-based, tailored education would improve medical practitioners’ recognition of and responses to dementia in general practice but concluded that education would not change clinical practice. An exercise therapy trial, for behavioural and psychological symptoms in people with dementia, did not reduce symptoms but had a positive impact on carer burden. An award-winning project on continence established the scale of continence problems in people with dementia living in the community, and developed new ways to reduce the impact of incontinence on people with dementia and their families. An end of life care study explored the experiences of people with dementia and their families at the end of life, and showed how they could be improved by promoting collaboration between care homes and general practice. How different types of practitioners working with people with dementia understood and applied the new Mental Capacity Act (2005) was investigated, which pointed out the gaps in knowledge as well as the value of the Act to practitioners. Finally, the programme successfully piloted a research register for people with dementia and their carers who wanted to take part in research studies.

Steve Iliffe said: “The EVIDEM programme successfully pioneered a research register with the North London dementia research network, which has grown into Join Dementia Research, a national service that enables people to log their interest and be matched with suitable research studies. The studies of continence management in people with dementia broke new ground and demonstrated the scale of the problem – a taboo within a stigma. Our studies of professional education showed where attention is needed, and revealed the limitations of ‘training’. Further research and development work is underway to learn more about exercise as a therapy for challenging behavior in people with dementia, and about improving end of life care. We were able to learn so much because of our close working relationships with practitioners of many disciplines, particularly through our collaboration with Central and North West London NHS Foundation Trust. We gained much from extensive patient and public involvement in these projects, and user and carer perspectives contributed to project design, implementation and analysis.”

Read the full report in Programme Grants for Applied Research.