Dementia and cognitive impairment

Evidence based interventions in dementia - the EVIDEM programme - was one of the first wave NIHR programmes of translational research 2007-2012.

EVIDEM was hosted by Central and North West London Foundation Trust, was based in the community, and led by primary care.  The academic consortium of five universities was led by the department of Primary Care and Population Health at UCL. The programme produced evidence based tools, techniques and skills that were directly applicable to providing good quality services to people with dementia and their families across the dementia trajectory from diagnosis to end of life care.

This was an 18 month Alzheimer's Society and Marie Curie jointly funded study led by Professor Steve Iliffe and Dr Nathan Davies. 

What do we already know?

Many practitioners lack the confidence to provide end of life care for someone with dementia, including practitioners from palliative care backgrounds but also practitioners experienced in dementia care.

End of life care that is delivered to people with dementia is for these reasons often poor, with improvement needed in many areas of care. We know there is currently poor access to end of life care for people with dementia, with a lack of the recognition of pain - some even believing that people with dementia do not experience pain. There is little training in end of life care for people with dementia, with dementia still often not being accepted as an illness which will lead to death, requiring any form of specialist end of life care input.

The next challenge is how best to improve end of life care in the light of the recent review, family anxieties and media controversy. The critically important resource is those close to the person with dementia, often family members.

However, many have noted that 'rarely have the views and experiences of family carers in their own right been elicited' and little is known about the experiences of carers about end of life care. The recent descriptions of poor end of life care create an urgent need for health and social care services to use the knowledge of families who experience care on a daily basis.

The removal of the Liverpool Care Pathway leaves a gap in the guidance for practitioners, which needs to be filled. The researchers propose that this gap should be filled with the assistance of the families of people with dementia, some of whose experiences brought about the demise of the Liverpool Care Pathway.

What did this project involve?

Using data from 47 interviews with family carers about end of life care for dementia, collected as part of a previous study as a starting point, this research aimed to:

1. Explore what family carers want from end of life care for people with dementia

2. Develop heuristics (rules of thumb) for end of life care for people with dementia by combining family carers' perceptions with advice from practitioners, in home and hospital settings

3. Test and evaluate the use of heuristics with practitioners in real settings; both home and hospital

The output of this study was be a series of heuristics (rules of thumb) which have been tested with a small group of practitioners at various levels with a sample of people with dementia, developed by carers' experiences and opinions that have essentially brought the demise of the Liverpool Care Pathway. They will help fill a gap by the departure of the Liverpool Care Pathway, acting as a framework for practitioners in both home and hospital care.