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P25. End-of-life care and decisions

Detailed programme and abstracts

P25.1. Kirkwood hospice end-of-life care admiral nurse: improving end of life care for people with dementia in Kirklees, west Yorkshire, England

CROWTHER Jaqueline, SHAW Sarah, ALLEN Julie, PEASELEY Lyndon

 Similar to cancer, dementia is a complex, life limiting condition, incidence increasing with age. Both conditions require skilled care by professionals who understand the significant impact on physical, emotional and social well- being for whole families. Recent work by Hospice UK (2015) resulted in guidance for hospices in embracing dementia care, collaboration and partnership being identified as key.

Kirklees has a diverse population, approximately 4,600 people currently live with dementia, a figure predicted to rise to 7,000 by 2030. A number of these will be living with multi—morbidities necessitating support from different agencies and professionals as end of life approaches.

The Kirkwood Admiral Nurse will ensure increasing numbers of families affected by dementia are supported to access skilled, competent, compassionate care.


  • Support people with dementia and carers make future plans for advancing illness and end of life care.
  • Enable and facilitate workforce development, internal and external.
  • Provide an expert resource for people with dementia, carers, hospice staff and external organisations.
  • Develop new collaborations and partnerships extending role of hospice in dementia care.
  • Promote role of hospice in dementia care amongst local community.
  • Support both local and national agendas from dementia and end of life care perspectives.

Service description: This innovative service is a collaboration between Kirkwood Hospice, Kirklees Council and Dementia UK. An open referral system is in place with referrals accepted from people with dementia, carers and professionals. The Admiral Nurse has a small caseload of complex cases, working largely in an advisory, consultancy capacity focusing on workforce development. A steering group, consisting of representatives from collaborating organisations and carer of a person with dementia provide guidance. Professional development is supported by Kirkwood Hospice and Dementia UK. 

This paper will describe how aims of the service have been implemented along with initial developments.

P25.2. On being a strange stranger. Hospice volunteers in end of life care of patients with dementia


Volunteers are playing an essential role in outpatient end-of-life care. Mobile hospice care in Germany is characterized by their support; there are approximately 80000 volunteers engaged in palliative care. 17 mobile hospice volunteers where included in the study. Beforehand they had cared for a person living with dementia at the end of life. They had visited the care recipient on an everyday basis, did ordinary things and spent time at their beds, holding hands. Almost all visits took place in a nursing home setting. The aim of the study was to analyze what the specific assignments and tasks of volunteers in the care of terminally ill patients with dementia at the end of life are all about. In short: What makes their care so special.

The researcher situated her study in general principles of grounded theory methodology. After the hospice volunteers had completed their service, they were interviewed. Contact to the volunteers was established through eight mobile hospice coordinators. Led by a growing theoretical sampling, hospice volunteers took part in a structured depth interview in a setting where they felt at ease. All interviews were transcribed and analyzed by the researcher until theoretical saturation was estimated.

Results from the study indicate that there seems to be a link between the volunteers reported satisfaction with their service and their ability of handling strange situations and dealing with their feelings of being a stranger for the person with dementia (the relatives and in the nursing home setting).

P25.3. Improving quality of end of life planning

BROWN, Juliette, BAILEY Cate, EVANS Sandra, MILLS, Sarah

Introduction: Improving end of life care in dementia demands the active involvement of people with dementia from diagnosis. Advance care planning (ACP) is a process of discussion in the context of a life limiting illness about wishes and choices for future care including - in the UK - advance statements, advance decisions and transfer of powers to a proxy. There are multiple benefits to ACP but significant barriers in dementia and few are adequately informed in the UK despite policy intent. Our study explores the views of professionals delivering ACP in dementia on the value of the work.

Objectives: To investigate the views of professionals experienced in advance care planning with people with dementia on the value of (and challenges inherent to) the work.

Methods: A qualitative (thematic) analysis of focus group interviews with healthcare professionals based in diagnostic memory services, all of whom have been involved in delivering advance care planning at dementia diagnosis.

Results: Clinicians identified major value to ACP, centred around empowerment, increased control, the opportunity to start important conversations, and the chance to surface psychological needs. ACP enabled a more person centred practice and better post diagnostic support, and in the longer term reduced the likelihood of family conflict. The challenges of ACP included sensitivity to the subject matter, variations in psychological readiness, gaps in shared knowledge, and resourcing.

Conclusion: Clinicians experienced in advance care planning acknowledged challenges in the task that demand time and clinical sensitivity. They also identified major value to the work, informed by their clinical experience, which centred on empowering the person with dementia, opening up a space to consider the psychological impact of a dementia diagnosis and improving post diagnostic care.

P25.4. Quality of end-of-life care for community-dwelling people with mild and severe dementia in Europe: A cross-sectional, retrospective study


Introduction: Providing high quality end-of-life care for people with dementia poses a huge clinical and public health challenge. To date, systematic cross-country comparison of the quality of end-of-life care for people with dementia in general practice in Europe is limited.

Objectives: To systematically investigate the quality of end-of-life care for community-dwelling people with mild or severe dementia in Belgium, Italy, and Spain

Methodology: Cross-sectional retrospective data on 874 patients aged 65 years or older, who died non-suddenly with mild or severe dementia, were collected from 2013 to 2015 through general practitioners’ (GPs’) epidemiological surveillance networks. GPs performed weekly registrations of patient death using standardized forms, evaluating the quality of end-of-life care using a core set of nine quality indicators that cover essential domains of end-of-life care.

Results: GPs indicated that regular pain monitoring was conducted in 9% (Italy) to 41% (Belgium) of patients with severe dementia. Between 48% (Italy) and 59% (Belgium) of patients with mild dementia accepted their approaching death. Illness-related topics were communicated with 6% (Italy, mild dementia) to 42% (Belgium, mild dementia) of patients. End-of-life treatment preferences were discussed with GPs by 4% (Spain) to 34% (Belgium) of patients with mild dementia. Repeated multidisciplinary consultations regarding end-of-life care took place for few patients in Italy and Spain (5-10%) and for approximately 40% in Belgium. Between 20% (Italy) and 60% (Belgium) of patients with mild dementia received specialized palliative care services. Communication about illness-related topics between GPs and relatives of patients, patient death outside a hospital ward, and bereavement counselling of relatives were common in Belgium, Italy, and Spain.

Conclusion: While the GP-relative communication, patient death outside a hospital ward, and bereavement counselling were similarly common in the three countries, their considerable differences in quality indicators highlight specific aspects of end-of-life care where improvements can be made.

P25.5. Heuristics: helping practitioners caring for people with dementia at the end-of-life manage uncertainty


Background: The end of life for someone with dementia can present challenges for practitioners. These challenges may be eased by the development of Heuristics (rules-of-thumb). Heuristics are broad principles which are brief, easy to remember and can be applied in complex situations. This study aimed to develop heuristics to aid practitioners making decisions about care for people with dementia at the end of life.

Methods: A co-design approach with three phases:

1) Qualitative study conducting two focus groups and three semi-structured interviews with family carers, and four focus groups with health and care practitioners, to identify key decisions and how these should be made.

Results of the qualitative data were presented to a co-design group consisting of health and care practitioners together with family carers. They synthesized the findings through a series of workshops to develop a set of heuristics.

2) Testing the heuristics in practice for six-months in five different clinical settings; two hospice teams, general practice, hospital ward, and community nursing

3) Evaluation of heuristics through interviews and questionnaires at three and six-months. Results were fed back to the co-design group to inform further iterations of the heuristics.

Results: Four sets of heuristics were developed; eating/swallowing difficulties, agitation/restlessness, reviewing treatment, and routine care. The heuristics are arranged as flowcharts. Eating/swallowing difficulties have two rules; ensuring eating/swallowing difficulties do not come as a surprise and reflection about ‘comfort-feeding’ only. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and caregivers’ health/wellbeing. Reviewing treatment/interventions prompts practitioners to consider the benefits to quality-of-life and comfort. Finally, routine care, such as bathing, prompts practitioners to ensure care interventions have positive impacts on quality-of-life.

Conclusion: Teams liked the simplicity of the rules-of-thumbs, making their implicit knowledge explicit, enhancing their confidence in making decisions at the end of life.

P25.6. Co-developing end-of-life resources: an equal and reciprocal relationship


Involving people with dementia (PwD) in the development of new resources to help support their care at end-of-life requires a sensitive approach recognizing not only disability but also empowering and supporting capability. Some models of patient and public involvement (PPI) identify a spectrum of participation modes (e.g. Arnstein, 1969; Savory, 2010). Indeed, there has been a discernable shift in PPI thinking from ‘doing to’, through ‘doing for’ to ‘doing with’ patients, i.e., from ‘coercion’ to ‘co-production’ (The New Economics Foundation, 2014). However, a recent review of PPI models currently being deployed concluded these were still too narrow, indeed often tokenistic, not acknowledging equality and diversity issues (Ocloo & Matthews, 2016). In the SEED study, concerned with the development of an intervention to increase the chances of a good death for PwD (SEED), designers joined the more traditional dementia, palliative and nursing care specialisms in the research team. The designers introduced methods and tools to involve all the key stakeholders (i.e., the PwD, family carers, the healthcare team and nurse specialists) in the design of new resources concerned with facilitating discussion and improving shared decision-making around key end-of-life plans. Specifically, through the nature and design of the workshops and use of participative tools these approaches were intended to better empower PwD and their family carers in this co-development process, to help open up their agendas in this very sensitive area. This presentation highlights key findings arising from this co-development process which enabled the PwD and family carers to voice their particular issues. Rather than outcomes being determined through a top-down ‘consultation’ model, the authors debate the value of a ground-up ‘collaborative’ model where new resources can be developed in a more equal and reciprocal partnership with PwD and their family carers.



Last Updated: Tuesday 24 October 2017


  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche