Professor Steve Iliffe
University College London
After the Liverpool Care Pathway - What next for people with dementia?
End of life care (EOLC) is rapidly becoming a priority for those working with people with dementia. Average life expectancy from symptom onset is less than 5 years, and from diagnosis is 3.5 years. There is as yet no disease-modifying treatment available or in prospect. There is a lack of guidance for EOLC and dementia, especially following the withdrawal of the flawed Liverpool Care Pathway (LCP). We aim to develop practical guidance with a series of heuristics (rules of thumb) for practitioners (GPs, community nurses, hospital & home staff) to use at end of life with people with dementia, in both hospital and community settings. These heuristics will be grounded in the experience of carers. The study will have three phases: phase one will adopt a co-design approach to combine the experience of family carers of people with dementia, and of practitioners, to develop a set of heuristics; phase two will then test the heuristics in real settings (one community nursing team, one general practice and one hospital ward) with practitioners using the heuristics to guide their care with people with dementia at the end of life; phase three will evaluate the heuristics using semi-structured interviews of the practitioners which used them in phase two. The output of this study will be a series of heuristics which have been developed from carers experiences, which fill the gap left by the departure of the LCP, and which act as a framework for practitioners in both home and hospital care