Admiral Nursing Projects

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 An assessment of end of life care for people with dementia in Haringey Project

This report is a summary of findings from a mixed method in-depth study of the experiences of carers and service providers supporting people with dementia who died in the last six months within one community, the London borough of Haringey.

The work was led by Marie Curie Cancer Care and conducted in partnership with service providers and commissioners in Haringey, the National Council for Palliative Care and Dementia UK. Using a case note audit, interviews with carers of people with dementia who had recently died and a series of focus group meetings with professionals, we sought to explore current experience from the perspective of carers and service providers.

The objectives of the project were to:

· Identify key issues of importance and concern to people with dementia, their carers and those providing services to them
· Identify the major barriers for people with dementia and their carers in accessing good quality end of life care
· Scope existing services in Haringey for people with dementia
· Suggest cost effective recommendations to enable improved care pathways and outcomes for people with dementia at the end of life

Based on the evidence from this small sample, it would appear that the time at which a medical or social crisis occurs for a person with advanced dementia and/or their carer is a critical point at which appropriate intervention by services could enable them to remain in their usual home (which may be a Nursing Home), including at the time of their death. The support provided by the community matron and district nursing teams is highly valued by carers, but is not available out of hours when crises frequently occur. Episodes of hospital care often have a severely detrimental effect on the health and the quality of life of people with dementia and on the morale of carers. It would appear that many of the common reasons for hospital admission could have been appropriately treated in the community. Timely support could either prevent some crises from occurring, or create an opportunity to intervene that would help avoid a hospital admission.

Many of our findings are likely to be generalisable to other locations and reinforce those of the recent National Dementia Strategy and End of Life Care strategy. Small changes to local health and social care services, could significantly improve end of life care for people with advanced dementia who live in Haringey. The findings of this report should be linked with other UK initiatives which are seeking to scope the challenges to caring for patients with dementia at the end of life, for example the St Christopher's Hospice Dementia Project. Identification of the key trigger points in current pathways of care could stimulate development of interventions that could be tested systematically. Further exploration of the issues related to advance care planning, its possible timing and impact on people with dementia and their carers is needed. Further work on the cost implications and impact on quality of care could be undertaken, including consideration of total cost, to the family and wider society.

 For a full copy of the report and the associated toolkit for replication of this work contact Admiral Nurse, Karen Harrison Dening at or visit the website of NCPC or Marie Curie


Copyright (c) Dementia UK 2014, Charity Registration Number: 1039404

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