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PO4. Legal and ethical issues

Detailed programme and abstracts

PO4.1. Physician perceptions in the Netherlands and the United Kingdom on the provision of palliative care for persons living with dementia

BRAZIL Kevin, GALWAY Karen, CARTER Gillian, van der STEEN Jenny

Background: The European Association for Palliative Care (EAPC) recently issued a framework that defines optimal palliative care for persons living with dementia. However, implementation of the guidelines may pose challenges for physicians working in practice.

Objective: To measure and compare the perceptions of physicians in two European regions regarding the importance and challenges of implementing recommendations for optimal palliative care for person living with dementia.

Design: Cross-sectional observational study.

Setting: The Netherlands and the United Kingdom.

Subjects: Physicians (n = 317) providing palliative care to patients living with dementia.

Measurements: Postal survey.

Results: Physicians in the Netherlands and Northern Ireland (NI), United Kingdom, prioritized the same domains of optimal palliative care for persons living with dementia and these match the priorities in the EAPC-endorsed guidelines. Respondents in both countries rated lack of education of professional teams and lack of awareness of the general public among the most important barriers to providing palliative care for persons living with dementia. NI respondents also identified access to specialist support as a barrier. The results indicate that there is a strong consensus among experts, elderly care physicians, and general practitioners across a variety of settings in Europe that person-centered care involving optimal communication and shared decision making is the top priority for delivering optimal palliative care for persons living with dementia.

Conclusions: The current findings both support and enhance the new recommendations ratified by the EAPC. To take forward the implementation of EAPC guidelines for palliative care for persons living with dementia, it will be necessary to assess the challenges more thoroughly at a country-specific level and to design and test interventions that may include systemic changes to help physicians overcome such challenges.

PO4.2. Demystifying palliative care in dementia care homes


Palliative care is strongly advocated for all people living with advancing incurable illness. Within a care home setting there should be a particular emphasis on the importance of palliative care, particularly for those residents who, because of their advancing age, are likely to live with non-malignant diseases such as dementia.  The aim of this study was to determine care home managers’ knowledge of palliative care using the palliative care quiz for nursing (PCQN). 

Before the beginning of a workshop on optimising palliative care for people living in care homes, 56 care home managers (all nurses) completed the PCQN, a validated questionnaire that is used to assess a nurse’s knowledge of palliative care, as part of a learning exercise.  The quiz consisted of 20 questions for which participants could answer true, false or don’t know. The average score was 12.89 correct answers out of a possible 20 (64.45%) which is considered as an average score when considering previous empirical studies. 

In response to this 581 nurses and care assistants, who deliver care for people in care home, received a full day workshop on optimising palliative care in dementia.  The evaluation of this educational session correlated in notable improvements in palliative care knowledge and practice within the care home setting.  Palliative care and dementia awareness e-learning education are now mandatory e-learning modules for all care staff at Four Seasons Health Care.  Furthermore, our dementia care framework (DCF) has enabled our colleagues providing care to ensure that our residents receive special resident experiences throughout their journey.  In particular care homes which have undergone DCF have reported significant improvements in relation to assessment and management of pain in dementia care, person-centred approaches to spiritual care and sensitive communication at the end-of-life.

PO4.4. Policies regarding older people’s mental health - qualitative results of a survey performed in the European MINDMAP Consortium


Introduction: The MINDMAP consortium (2016-2019) aims to identify opportunities offered by the urban environment for the promotion of mental wellbeing and functioning of older individuals in Europe, by bringing together 10 European cities with urban longitudinal aging studies: GLOBE, HAPPIE, HUNT, LASA, LUCAS, RECORD, Rotterdam study, Turin study). For a profound data-interpretation a survey on mental health-care planning policies and programmes was performed in these cities (health promotion to care). The particular focus will be on those addressing dementia (e.g. risk reduction, but also care services).

Methods: First, MINDMAP partners identified experts in their cities with broad knowledge (e.g. from the Health Department). Second, a structured telephone interview (1–2 h) was performed always by the speaker Wienke Jacobsen. All interviews were transcribed and analysed using analysis pattern based on the WHO public-health framework for Healthy Aging. The aim is to visualise all cities regarding their priorities within the WHO framework for Healthy Aging.

Results: Almost every contacted city developed specific mental health-care planning policies with corresponding intervention programmes. Most strategies consider dementia or even separate strategies are published. Examples of good practices were based on national guidelines and local strategies to strengthen physical and mental health simultaneously. Promising intervention programmes for older people were based on the bio-psycho-social approach and some considered even the new definition of positive health by Huber. However, the focus on older citizens regarding mental health promotion, which includes risk reduction for dementia, should be strengthened.

Key conclusions: The findings will contribute to the establishment of preventive strategies in urban settings to promote the mental dimension of healthy ageing and preserve cognitive function in old age.

Funding: EU HORIZON 2020, Research and innovation action 667661.

PO4.5. At the nursing home “Beim Goldknapp” of the Association Luxembourg Alzheimer (ala)


Since its opening in 2007 the nursing home “Beim Goldknapp “, which offers specialised care and services for people with dementia, has attached great importance to a palliative culture and its own in-house palliative concept.

On this account the institution takes part in the pilot project of “Palliative Geriatrics” offered by “Omega 90” in collaboration with Dirk Müller, network expert of the “Kompetenzzentrum Palliative Geriatrie Berlin”.

In this project, the nursing home collaborates with 8 other Luxembourgish institutions to improve their common measures to further the palliative culture in each participating organisation.

Based on educational contents, analyses, exchanges and common strategies, each institution develops its own project within its multidisciplinary team.

Contents: The project group of the nursing home “Beim Goldknapp” has developed a document pointing out the palliative path for people with dementia.

This practical guideline includes the main ideas and approaches that have been developed and implemented at the institution in the last 10 years.

The practical guideline of palliative care at the nursing home “Beim Goldknapp” focuses on 3 major subjects:

1. General theoretical aspects of palliative care

  • Legislation in Luxembourg
  • Ethical questions
  • Support of next of kin and relatives

2. Practical implementation of palliative-care at the institution

  • Understanding the presumable wishes of the residents in the final stages of their lives
  • Dealing with the physical mental and social symptoms
  • Design of the living space in the final stages of life
  • Handling the fear of dying people
  • Important information on nutrition, hydration and pain

3. Farewell-culture at the institution

  • Different adoption rituals of the institution
  • Social, cultural and spiritual aspects

This practical guideline reflects the in-house palliative culture and allows to take a critical look at its realization.

The document is meant to be a practical tool for staff members to facilitate their workaday life. It is a “living” document that may grow or shrink with the constant aim of reflecting the palliative culture of the nursing home and its realization.

PO4.6. The CHOICE Study: enabling staff confidence and resident choice at end-of-life in care homes


In England, it is estimated that 70 per cent of individuals living in care homes for older people have dementia or severe memory problems. Improving end-of-life care (EoLC) for older people living in care homes is a global priority, with a current emphasis on choice regarding place of death. Good end-of-life-care is hindered by a lack of collaborative working both within care homes and with external agencies. The CHOICE (Care homes and hospitals innovating collaboratively to improve end of life care) study developed, implemented and evaluated an EoLC intervention in collaboration with care homes, an acute hospital and specialist palliative care team. This collaborative intervention sought to increase the confidence and competence of care home staff in EoLC, and to enable more individuals the opportunity to receive EoLC in the care home rather than a hospital. A two-phase exploratory mixed methods design was used to evaluate the impact of developing and implementing the intervention (an EoLC toolkit and associated training) in care homes. Six care homes were recruited to the intervention; 24 staff participated in discussion groups; 54 staff attended at least one training session; pre-and post-intervention questionnaires were completed by 78 and 103 staff respectively. Results suggest staff confidence in receiving emotional and clinical support and managing EoLC symptoms increased post-intervention; but confidence in discussing death and dying with residents/relatives decreased. Audit data indicate greater reduction in the number of residents dying in hospital from participating care homes than from comparison homes. The results of this study have important implications for practice; providing evidence that regular themed meetings with care home staff, facilitated by palliative care experts can build staff confidence in end-of-life-care and support resident choice in terms of preferred place of death.



Last Updated: Tuesday 18 July 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