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P21. End-of-life care

Detailed programme and abstracts

P21. End-of-life care (Wednesday 2 Nov., 10.30 - 12.00)

P21.1 Towards the end of life: An in depth exploration of the role of Admiral Nursing in dementia care


There is a growing impetus to improve care for people with dementia at the end of life. People with dementia, particularly those in the advanced stages, can experience poor end-of-life care because they are often not perceived as being in the dying phase of their illness, despite the fact that they are frequently bed-bound, doubly incontinent and unable to communicate (Sampson et al 2011). However, there are concerns in some settings and services that professionals are ill-equipped to care for this group of people, both in relation to environment and to knowledge and skills (Harrison Dening & Cooper. 2016).  

This presentation will discuss the results of a small in-depth study (Evans et al, 2016) that aimed to develop a greater understanding of the range of knowledge and skills required of nurse case managers (Admiral Nurses) in ensuring better support for families in the later stages of the illness.  Our findings show that carers face a range of complex decisions at the end of life of a person with dementia for which they need expert support. Findings also highlight some of the skills that lie at the heart of Admiral Nursing in this field. However, we found that such roles are demanding in respect of their high emotional labour, however there were also clear emotional rewards to be gained. Results are presented of both family carer experiences and the impact on the role of the case manager.

P21.2. Overview on an Advance Care Planning (ACP) model for care home residents living with dementia


Objectives: To report on the feasibility and acceptability of an ACP model for individuals living with dementia in a sample of care homes in the United Kingdom.

Method: As part of a cluster randomised controlled trial including 25 Care Homes, carers of residents living with dementia in 13 of these homes were exposed to an ACP intervention. This  comprised of five elements: an ACP facilitator; family education; a family meeting with a follow-up; documentation of ACP decisions; and, orientation for GPs and care home staff about the intervention. 

One feature of the evaluation included a detailed documentation and on the delivery of the intervention supplemented with stakeholder interviews to assess its feasibility and acceptability. The ACP Facilitator maintained both a narrative journal and a log of activities associated with tasks during the delivery of the intervention.  A qualitative interview was held with the ACP Facilitator to discuss their perceptions of the implementation, challenges and benefits of the ACP model.  Participating care home managers and family carers also completed a qualitative interview to determine whether they perceived such a model helped or hindered care.

Results: On average administration of the ACP intervention took two hours to complete on an individual family basis.  Care home managers (five from each study arm) and family carers  in combination with the findings from the ACP facilitator highlighted the acceptability of the intervention,  the importance of such a role to be fulfilled within the care home environment was stressed, however time and staff restraints were noted as key barriers. Nonetheless, the interest and motivation of staff to make such a role possible was clear.

 Conclusions: This presentation identifies the feasibility and perceived acceptability of an ACP intervention suitable dementia residents in care homes in the UK.

P21.3. Dementia carer well-being programme - innovative and creative hospice support for carers of people with dementia

CROWTHER Jacqueline, KNIGHT Helen, JONES Sandra, HAWKINS Joanne

Background: Hospice is historically known for excellent care of people with cancer. Similar to cancer, dementia is predominantly a disease of older age with the risk of developing these diseases increasing as we grow older. As the landscape of cancer and dementia changes so too does the work of hospices. Work commissioned by Hospice UK (2013) suggests hospices need to embrace other life limiting illnesses including dementia. More recent work by Hospice UK (2015) has resulted in guidance for hospices in taking first steps with collaboration and partnership being key.

Aims: Increase and improve dementia service provision locally, develop new collaborations and partnerships and extend the hospice role in dementia care. Support carers locally to make future plans: navigate local systems and services: build confidence and resilience: facilitate choice resulting in living and dying better with dementia.

Methods: A collaboration between East Cheshire Hospice and Alzheimer’s Society. A project lead is employed to manage the project and a steering group, including a carer guided the project over the first year. An eight week structured support programme for carers of people with dementia is offered. Carers and people with dementia come to the hospice together. Whilst carers attend information giving sessions dementia buddy volunteers support and occupy the person with dementia.  

Results: Two programmes completed, a further two planned. Positive changes in carer well-being identified along with anecdotal reports of positive changes in well-being for people with dementia.

Conclusion: This project contributes to the local dementia agenda from a hospice perspective. It also contributes to the wider international and UK agendas and call for hospices to embrace dementia as a life limiting illness. It demonstrates creativity and helps support people with dementia and their carers locally to live and die better.

P21.4. Alzheimer Scotland’s advanced dementia practice model: understanding and transforming advanced dementia and end of life care


The Alzheimer Scotland Advanced Dementia Practice Model was developed through extensive consultation and in-depth analysis of research evidence.  Current models of support within Scotland do not respond to the needs created by the complex and intensive physical and psychological symptoms, and the difficult transitions in the advanced illness. This most complex phase of dementia requires a multi-disciplinary coordinated and planned approach to support those providing day-to-day care.

The Advanced Dementia Practice Model is an integrated and comprehensive, evidence-based approach to supporting people living with advanced dementia wherever they are. Advanced dementia presents a range of complex health issues in addition to the social and psychological impact of the illness. Whilst the distinctions between the different illnesses of dementia will diminish as a result of the progressed condition, experience of advanced illness will be influenced by a range of factors unique to each person.

The Advanced Dementia Practice Model honours the human rights of those living with advanced dementia and provides a bio-psychosocial approach in responding to the individual experience. In Scotland’s National Dementia Strategies (2010, 2013) key target areas have included building resilience and support for self-management through post diagnostic support and then providing coordinated support in the community as the illness progresses. The Advanced Dementia Practice Model is a vision for how the care of people living in the community with advanced dementia can be similarly transformed in Scotland.

P21.5. Improving end of life care in dementia: Key areas for improvement

BAMFORD Claire, POOLE Marie, LEE Richard, McLELLAN Emma, EXLEY Catherine, ROBINSON Louise

Despite attempts to theoretically define what constitutes good EOLC, relatively little work has been undertaken to understand how such care is supported or constrained in practice. As part of a five year programme of research, we explored the delivery of end of life care from a range of perspectives (family carers, frontline staff, service managers) and using a range of methods (interviews, focus groups and observation). Through an integrative analysis of our extensive dataset, we identified seven key factors which influence the delivery of end of life care in dementia. These factors span the entire illness trajectory from key planning discussions relatively soon after diagnosis to continuing care after death.

The identification of these factors, however, was insufficient to improve care. Our next task was therefore to develop evidence-based interventions informed by the seven factors for evaluation in a pilot trial. This process involved a series of meetings of a multi-disciplinary group. Different understandings of ‘evidence’ and varying levels of knowledge about dementia created a number of challenges for the group. In addition to contributing to our understanding of the factors influencing the delivery of end of life care in dementia, this presentation will also provide insights into the process of intervention development

This presentation describes independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Grant Reference Number RP-PG-0611-20005). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

P21.6. Advance care planning for persons with dementia in primary care: an integrative review


Introduction: For persons with dementia (PWD) timely access to palliative care often fails and aggressive interventions frequently take place. As a consequence, their quality of life is threatened. Therefore, it is important to anticipate on the future and register needs and wishes. Advance care planning (ACP) addresses timely and cyclic assessments of future healthcare issues by discussions between the PWD, their primary caregivers, and healthcare professionals. In the Netherlands, most PWD live at home and have a longstanding relationship with their general practitioner (GP). This makes the GP the ideal healthcare professional to initiate ACP. Unfortunately, ACP with PWD seldom occurs. Therefore, the purpose of this integrative review is to determine what influences the application of advance care planning for PWD by the GP.

Methodology: An integrative review of English peer-reviewed literature between 1995 and 2015 regarding dementia, ACP and primary care was conducted by searching 5 electronic databases using predefined key search terms. The PRISMA method was used to select suitable papers which were assessed on quality using the MMAT tool and systematically analyzed by two researchers independently.

Results and conclusion: Of the 2398 papers identified through database searching, eighteen studies met the inclusion criteria. The application of ACP is influenced by the abilities of the GP and a timely start. ACP should be a continuous process and initiated by the GP. Also, the involvement of all stakeholders (PWD, family caregiver, GP) and their attitudes effect ACP. The actual conversation should include different elements, namely: informing the PWD about ACP and dementia, the actual decision-making and documentation in the patient file. It should be noted that the exploration of wishes and needs of PWD is seldom mentioned in the selected papers. 



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche