Research Article: End of life care for people with dementia: The views of health professionals, social care service managers and frontline staff on key requirements for good practice

Date Published: June 16, 2017

Publisher: Public Library of Science

Author(s): Richard Philip Lee, Claire Bamford, Marie Poole, Emma McLellan, Catherine Exley, Louise Robinson, Terence J. Quinn.


Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia.

Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL) and tools to support end of life care (EOLC), Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia.

The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in four services) to develop an evidence-based intervention.

Partial Text

By 2050 it is estimated that at least 131 million people worldwide will live with dementia [1]. In England and Wales, dementia is the leading cause of death with 11.6% of deaths in 2015 attributable to dementia [2]. A significant proportion of the total costs of dementia care occur during the last year of life [3, 4]. Evidence consistently shows that people with advanced dementia experience suboptimal end of life care (EOLC) compared to those with cancer, with increased hospitalisation, inadequate pain control and fewer palliative care interventions [5–12]. People with dementia are also likely to be living, and dying, with significant co-morbidity [13]. In England and Wales their care–in care homes, own dwellings and in hospital–is provided within a mixed public and private health and social care system. The health system has increasingly shifted towards a (not uncontroversial) model of commissioning and contracting led by clinical commissioning groups, in an attempt to increase care skills and align general practitioners to the wider health system [14, 15]. At the same time social care budgets, managed by local authorities, have been subject to increased pressure with overall expenditure falling against increased demand driven by demographics [16].

Ethical approval for the research was granted by: UK Health Research Authority NRES Committee North East—Newcastle & North Tyneside 1 (13/NE/0335). In order to understand the perspectives of a range of service managers and frontline staff providing care (Table 1), the first stage of data collection involved semi-structured interviews with service managers from a range of services across England, including some participants who did not directly manage a service, but were responsible for the conduct or co-ordination of aspects of EOLC for people with dementia. Our definition of EOLC included early discussions about dying, through to final days and subsequent care for relatives. The study was focused on community care (namely in care homes, hospices and dwellings). Thirty three service managers were interviewed; our sample comprised a wide range of professional staff including doctors (n = 4) and nurses (n = 7); nursing and care home managers (n = 12); service development leads (n = 5), and senior managers/directors (n = 5). Interviews last between 27mins and 1h 03mins. The topic guide focused on: details of service and relationships with other services; key components of good EOLC for people with dementia; how this differs from/is similar to EOLC in other conditions; perceived value of existing frameworks and approaches. Service managers were recruited through a combination of recommendations from national experts [26], identification of services from the wider study team and snowballing. Following the interviews with service managers, we purposively selected eight sites across England for focus groups with frontline staff, making use of contacts established in earlier phases of the research programme. Services were selected to ensure a range of service type and location and were identified as being good or standard practice. They included two care homes, two specialist elderly mentally infirm (EMI) homes, two hospices and two services providing a range of services including group living homes and home care. Three were urban, three suburban, one rural and one semi-rural. A total of 54 staff took part in ten focus groups (two focus groups were conducted in two services). Participants in the focus groups included care assistants (n = 18); senior care assistants/team leads (n = 7); nurses (n = 17); doctors (n = 1), service development leads (n = 4) and managers (n = 7). Focus groups lasted between 48mins and 1h 48mins. Staff involved in end of life care for people with dementia were deemed eligible for participation. The topic guide focused on: successful (and less successful) examples of EOLC for people with dementia; key components of good practice; how this differs from/is similar to EOLC in other conditions; perceived value of existing frameworks and approaches. The composition of focus groups included care assistants, care home nurses, hospice clinical staff and senior care home managers, though this varied with each focus group.

Providing good EOLC for people with dementia is highly demanding and complex work. While the general issues discussed by service managers and frontline staff were similar, the ways in which they described their personal experiences and views of EOLC differed. Service managers tended to talk at a more abstract level while frontline staff often spoke in detail about specific cases of EOLC. Our analysis identified seven key themes:

Service managers and frontline staff identified seven key themes important to the provision of good quality EOLC for people with dementia and their families: these were recognition of the need for EOL and use of appropriate EOLC tools; communicating appropriately with families; collaborative working; continuity of care; ensuring comfort; supporting families; and developing and supporting care staff. Findings from such qualitative research can help inform the development of a complex evidence-based intervention to support professional carers to deliver better quality EOLC in dementia [49]. Our findings, grounded in in-depth empirical research resonate with key research priorities identified in a recent European expert consensus initiative to generate guidelines for optimal EOLC in dementia [23]. These include: person-centred care, communication and shared decision-making; optimal treatment of symptoms and provision of comfort; and advance planning.

In conclusion, we identified seven key areas which staff consider are crucial to the provision of good quality EOLC in dementia. A major implication of this study is the need to recognise, value and better support the expertise of nursing and care home staff in this area; this should come from both within the ‘organisation’ (by developing an ethos which values both the physical ‘hands on’ and emotional work needed in providing such cares) and from better collaborative working with healthcare services including GPs and palliative care teams. Better quality care can be achieved by ensuring continuity of care (for example named lead care home nurse and lead GP; planned OOH care), earlier more timely discussions with both people with dementia and their families to understand their personal wishes and appropriate documentation and dissemination of relevant ACP forms and closer, more collaborative working with specialist palliative care services, who provide both essential clinical advice but also support and mentor less qualified staff. A key component of good quality EOLC in dementia is also successful engagement with, and support of, family members both before and after the person with dementia’s death. Future research should explore how best this can be achieved within current service configuration and organisation and if new service initiatives, such as EOLC networks or community dementia palliative care nurses, are required above and beyond usual care to support professionals to deliver good quality care towards, and at, end of life in dementia.