SEED WS4
Research type
Research Study
Full title
SEED Workstream 4: A pilot trial of the supporting excellence in end of life care in dementia intervention
IRAS ID
211291
Contact name
Louise Robinson
Contact email
Sponsor organisation
Northumbria Healthcare NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, 31 days
Research summary
Currently one in three people aged over 60 years die with dementia. People in the advanced stages of dementia experience similar symptoms to those dying with cancer yet research shows that professional carers have difficulties in providing end of life care to people with dementia (PWD). Symptoms such as pain, agitation or low mood are common but may not be recognised or treated effectively. Most PWD would prefer to die in their usual place of care, but a significant proportion die in acute hospitals.
To improve quality of care and facilitate preferred place of dying, it is crucial to explore more effective, integrated models of care and interventions. We have drawn on data collected in earlier workstreams, to develop an evidence-based intervention comprising a Dementia Care Facilitator (DCF), selected resources and a core intervention team to promote change. The DCF will be introduced in two geographical areas for twelve months. Their role will be (i) to support PWD who are approaching or planning for the end of life and their friend/family carers and (ii) to develop capacity and skills among community health and social care staff (e.g. GPs, district nurses and care home staff). The resources include some readily available documents (e.g. produced by the Alzheimer’s Society) and some newly developed resources. The core intervention team will comprise the DCF, palliative care consultant, specialist palliative care nurse, community matron, lead GP/practice manager, old age psychiatrist/community psychiatric nurse and representatives from local care homes and hospice(s). This team will provide multidisciplinary support to the DCF and facilitate links with existing services. This pilot trial will allow us to see how the DCF fits into existing services and to collect data to inform a future definitive trial. In addition, we will investigate the likely cost-effectiveness of the DCF compared with existing care.
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
16/NE/0356
Date of REC Opinion
16 Jan 2017
REC opinion
Further Information Favourable Opinion