WS2 qualitative data collection was completed on time. A full report detailing the methods, data collection and findings from WS2, defining and delivering good quality EOL care in dementia is under review by our funders.
A brief summary of key findings is provided below.
1. Explore the views and experiences of key stakeholders including national experts, service providers and people with dementia and their family carers. Data collection comprised:
The findings indicated a number of common themes as well as differences in emphases and some tensions in priorities and perspectives. Several issues were more pertinent to professionals (national experts, service managers and frontline staff) than to people with dementia and family carers.
2. Understand day-to-day practice in end of life care in dementia with a focus on defining and identifying good practice (observations from case studies) and comparative case studies were undertaken in three research sites, representing examples of both ‘usual care’ and ‘good practice’, to explore how end of life care for people with dementia, and their family carers, was enacted in real world practice. Data were collected using ethnographic methods: non-participant observation, informal discussions and individual interviews. Transcripts, observation experiences and field notes were discussed and reviewed by the team during the data collection period to inform future observation and interviews. Data were analysed using a thematic approach. Five key overarching themes were identified:
Key differences between sites related to access to GP support, links with hospices and palliative care, and the emphasis on staff training and development. As in the stakeholder interviews and focus groups, experienced staff were confident in their ability to recognise people with dementia approaching the end of life. Comfort and companionship for people with dementia and support for families were consistently identified as key components of good EoLC. The case studies also highlighted the extent of the practical and emotional work required from professional carers which underpinned both planning for and delivering end of life care.
3. Integrative analysis to inform development of the intervention (WS3) for evaluation in WS4:
The integrative analysis brought together the data from the whole of WS2, drawing upon the key themes identified in each of the sub-studies to identify seven key factors which supported professionals to deliver good quality end of life care for people with dementia. These factors were:
i) Undertaking timely planning discussions to ensure plans are discussed when the person with dementia still has capacity and that they are approved, documented and disseminated. While person with dementia may be reluctant to engage in planning, evidence indicates that failing to do so can increase pressure on family members at already stressful times.
ii) Co-ordinating care includes liaison between day and night staff in services and having established links with local hospices, particularly for support out of hours.
iii) Working effectively with primary care can be facilitated by having a named liaison person in the practice. For care homes liaison can be improved by scheduled routine visits and limiting the number of GP practices with which their residents are registered.
iv) Managing hospitalisation includes avoiding unnecessary admissions by appropriate out of hours support and documentation of wishes and preferences. It also involves managing admission and discharge effectively where hospitalisation is required.
v) Recognising end of life and providing supportive care to ensure effective management of key symptoms (e.g. pain, anxiety and nausea), and minimising distress by providing comfort in a familiar environment.
vi) Continuing care after death can enable family members to be supported by known members of staff who were involved in providing end of life care for the person with dementia. This continuity of care is valued by family members.
vii) Valuing staff and ongoing learning facilitates staff retention and results in a more skilled and knowledgeable workforce. Stable staff teams are more able to detect signs of emotional vulnerability in their colleagues and ensure timely and appropriate support.