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P18: End-of-life care

Detailed programme, abstracts and presentations

P18: End-of-life care

P18.1. What policy and practice change do we need regarding palliative care in dementia?


Palliative care needs of people with dementia are different from palliative care needs of people with cancer or people with other chronic-progressive disease that do not necessarily involve cognitive impairment. The European Association for Palliative Care (EAPC) recently defined palliative care in dementia in terms of eleven domains. For each of the domains, recommendations for practice, policy and research provide guidance as to how to optimize care. However, from a policy and practice point of view, it is also important to understand how optimal palliative care in dementia differs from usual dementia care provided in different countries, how it should be implemented and possible barriers to its implementation.

Therefore, we used the EAPC framework of domains defining palliative care in dementia in two studies to generate country-specific input for possible change. First, we evaluated the contents of national dementia strategies from fourteen countries, and second, we surveyed the perceptions of physicians providing end-of-life care for people with dementia in two countries with respect to barriers to implement palliative care in their countries.

Regarding the first study, we found that although palliative was not explicitly referred to in eight of the fourteen countries, a number of domains from the EAPC framework were well represented, including, for example, domains on continuity of care and family caregiving. However, only three countries addressed palliative care in a dedicated section, mainly referring to education and societal/ethical issues. All strategies lacked reference to the domains of prognostication/recognition of dying and to spiritual caregiving. Regarding the second study in 326 physicians, for most domains, general practitioners in Northern Ireland identified more barriers to implement palliative care in dementia than physicians specialized in care for older people in the Netherlands.

These finding may provide input to a discussion about integration of palliative care in dementia.

P18.2. Home hospice care for end stage dementia – a pilot project

GROFMAN Valeria, STERNBERG Shelly, KATZ Glynis

In Israel, 88% of the people with dementia live in their homes with home care, out of those, 31% of the individuals are in advanced stages. (Sternberg, Bartur, 2002). Evidence shows that advance stages of dementia are associated with complication such as chronic pain, recurrent infections, eating problems etc. These symptoms are associated with increased mortality rate and there is growing need for comfort care to alleviate symptoms and promote quality of life. However, at present in Israel, people with advance dementia are rarely recognized as being in terminal stages therefore they are not eligible to formal palliative care or hospice care. Three organizations, Maccabi health care service, Sabar Clinics- a private home care hospice, and EMDA the Alzheimer association of Israel, have partnered and initiated a time limited pilot project to offer 6 months hospice care for patients with advance dementia at home.  This has not been done before in Israel in a focused and tailored manner. The aim of the pilot was to provide home palliative care to 20 families during a period of 6 months in order improve quality of care, learn and demonstrate the medical, emotional and spiritual benefits,  as well as to make recommendation to stakeholders. Families were screened, out of 33 Patients referred, 11 were found inappropriate and 22 were accepted, two dropped out, patients had a total of 50 hospitalization days prior. During the pilot there were 33 hospitalization avoided (aspirations, UTI, fever, etc.) Some of the challenges were identifying the accurate inclusion criteria for end of life in dementia. Recommendation includes ongoing training for caregivers, spiritual care, speech therapist evaluation and training on feeding, staff availability 24hrs7/Wk, although only up to 15%home visits of the medical team outside regular working hours. Setting up equipment and medications at home in advance with training.

P18.3. Enhanced sensory day care: evaluation of a new model of day care for people living at home with advanced dementia


There is a gap in the provision of day care services for people in the advanced stage of dementia who are living at home. As dementia progresses, the individual may not benefit from existing day care resource or service. A decision to stop attending day services may lead to difficulty for family carers, for whom replacement home care is unlikely to match the hours provided by the day care.   Alzheimer Scotland Enhanced Sensory Day Care is a new model of day care attended twice weekly by people in an advanced stage of dementia. This is a sensory based approach that seeks to make connections with the person through the five senses: sight, smell, taste, sound and touch, delivered twice weekly over the twelve week pilot period.

The pilot service was evaluated by the University of the West of Scotland with the aim of understanding the model in practice, and making recommendations for the development and continued delivery of this model for people in the advanced stage of dementia. The evaluation included pre and post quality of life measures as perceived by family carers, pre and post group interviews with staff and volunteers, individual interviews with family carers, and a pre and post self-efficacy scale with staff and volunteers to determine their confidence in supporting people at end of life.

Thematic analysis of data led to findings suggesting an increase in staff and volunteer understanding of, and skill in delivering, a sensory approach within a day care service for people in the advanced stage of dementia. Family carers perceived that their family member benefitted identifying a desire to engage with activities at home upon returning from day care, increased communication and support for their own wellbeing. The evaluation demonstrated the viability and potential of Alzheimer Scotland Enhanced Sensory Day Care as a model for the supportive care of people in the advanced stage of dementia.

P18.4. Euthanasia in persons with severe dementia


The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. This provokes a feeling of being vulnerable in the people concerned. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality and the vulnerability caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid total deterioration and vulnerability. Euthanasia of persons with dementia is allowed by the Belgian Act on Euthanasia as long as the person still has the required competency to express his actual euthanasia request. However, euthanasia of persons with severe dementia, as decreed in an advance euthanasia directive (AED), is not allowed in Belgium. Bills have been put forward in the Belgian Parliament to extend the current Act on Euthanasia towards persons suffering from severe dementia.  In this contribution, we discuss some ethical and practical dilemmas regarding euthanasia in persons with severe dementia based on advance euthanasia directives. The main question is: Are advance euthanasia directives (AED) to be considered as dignity-enhancing care instruments to overcome the vulnerability of persons with severe dementia. Two main approaches to AED will be discussed: The principlist oriented or the ‘precedent autonomy’ approach on the one hand and the relational care oriented or ‘experiential interest’ approach on the other hand. We conclude our contribution with a critical ethical evaluation of euthanasia care practices in persons with severe dementia.

P18.5. “Is work stress in providing end of life care in a care home a cause for concern?”: A Qualitative Study

VANDREVALA Tushna, ROSE Charlotte

Background: Stress and burnout in care home staff has been well established, due to their direct contact with vulnerable older adults, job conditions and low pay. This has resulted in high staff turnover, psychological and physical impacts to the carer. With life expectancy in the UK increasing, many older people with dementia are likely to live and die in a care home. Providing care at the end of life compounds the expectations placed on carers and the psychological impacts of working in palliative care for care home staff are unknown. The aim of the current study was to investigate the ways in which care home staff experience working with people with dementia at the end of life and how this may contribute to their stress and burnout.

Method: A qualitative approach was employed and 15 care home staff who worked in dementia suites within residential care home, were interviewed. Thematic Content Analysis was used to analyse the data.

Findings: Care home staff perceived the physical aspects of caring for people with dementia as contributing to their workload, especially as there was little time to accommodate the patient’s needs. Frequent encounters with death, being unable to reduce suffering for the patient and their families and the feeling of helplessness, particularly as they have built established emotional bonds, contributed to the emotional labour experienced by staff. Despite the many psychological impacts of working in palliative care, high job satisfaction was reported.

Discussion: The implications of the environmental and individual characteristics in the process of work-related recovery will be discussed, particularly focusing on the lack of coping strategies and resources that are in place to support staff. Suggestions will be made for potential intervention to prevent negative health outcomes (compassion fatigue, vicarious traumatisation and burnout) due to increased work-related demands.



Last Updated: Monday 28 September 2015


  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene