Our ageing population will mean more people with long term, and age-related, illnesses like dementia. This will lead to an increased need for end of life care for those with complex needs living in the community. People with dementia already receive poorer end of life care compared to those with cancer, with more hospital admissions and worse pain control.
The idea for this research began in carer groups from the Alzheimer’s Society. It has developed through ongoing work between these groups and the National Institute for Health Research Dementia and Neurodegenerative Diseases Research Network (DeNDRoN). It aims to support professionals, both commissioners and providers, to deliver good quality, community-based end of life care in dementia. Our key outputs include:
i) An approach to individual care planning (ICP) for end of life care in dementia
ii) Educational resources to support the use of i)
iii) Commissioning guidance for clinical commissioners.
To develop the above outputs, we will firstly improve our understanding about what is already known about the organisation and provision of end of life care for people with dementia and their families. We will review current guidance and care pathways to find out which aspects are supported by evidence and which are not. We will also work with people with dementia, carers and professionals to examine how professionals deliver end of life care to people with dementia and their families, looking for examples of best practice and solutions to meet dementia-specific problems. We will identify person-centred outcomes to measure the quality of this care.
To develop the ICP, we will combine the above data with complementary data from the Marie Curie Dementia Programme (MCDP). The MCDP is looking at the health and social care use of people with advanced dementia and their families. We will see how the ICP fits into practice, if it is used by staff and whether we have identified meaningful outcomes to measure the quality of care. In addition, we will investigate the likely cost-effectiveness of the ICP versus existing care to see if further research is needed.
Finally we will create guidance for clinical commissioners on the provision of good quality end of life care in dementia. We will send this out to a wide range of audiences including patients and their families, commissioners and policy makers.
The SEED programme is funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (RP-PG-0611-20005).
The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.