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P16. End-of-life care in dementia

Detailed Programme, abstracts and presentations

P16.1. Opening conversations: developing a model for the Alzheimer Society of Ireland of best practice palliative care interventions for people with dementia and their carers.

Una MacConville, Annie Dillon, Aileen Doran, Grainne McGettrick, Majella O’Donnell, Sarah White, Catherine Keogh

Opening Conversations is an Alzheimer Society of Ireland (ASI) research initiative to develop a model of palliative care interventions within, and beyond, ASI services. A number of objectives were identified including clarifying appropriate palliative care interventions within dementia care contexts, establishing with service users and providers, the extent of palliative care needs in order to develop a model for best practice and identifying awareness of the illness progression and preparation for end-of-life care amongst people with dementia and their carers. The research project reports on conversations with people with dementia and their family/carers about end-of-life care. The needs of people with dementia at the end of life differ in some key respects to other patient groups. This research is an important step in understanding the dimensions of end of life care provision from the perspective of people with dementia and their family/carers. The project engaged with a broad range of stakeholders. However, this abstract focusing on the aspect of the research that involved engagement with people living with dementia and their carers. ASI staff conducted individual interviews with people with dementia and their carers. Process consent protocols were developed and adopted for this research.

The results in terms of the conversations with people living with dementia indicated their real uncertainty and awareness about their diagnosis, a limited awareness of the changes that were happening in their lives and with the illness progression and little or no legal and financial preparation. For carers, the findings indicated their limited understanding of illness progression and required planning and their difficulty in discussing the illness with person with dementia. Carers reported that the strain of caring for a person with dementia puts relationships with spouses/children under considerable strain and that they are uncertain of what their role is in the long term care setting, with no preparation for their post caring role. For both the person with dementia and the carer, the timing of information was a key issue as was the high degree of social isolation. The research concluded that it is difficult to have conversation about end-of-life care needs when it is already difficult to talk about having dementia. The stigma attached to dementia can lead to difficulties in discussing the illness and delays in ascertaining an accurate diagnosis thus increasing social isolation. The illness characteristics, in particular, cognitive impairment, gives a greater imperative to talk about illness progression and end of life care at the very early stage of the condition. The research was part funded by the Irish Hospice Foundation.

P16.2. Exploring the future wishes and priorities of people with dementia and their carers

Karen Harrison Dening

This paper will present the findings of stage one of a doctoral that examines people with dementia and their carers’ ability to express wishes and preferences for end-of-life care.

End-of-life care received by people with dementia is often poor (Sampson et al, 2006) with inequitable access to palliative care services (Hanrahan & Luchins, 1995). This could in part be because few people with dementia have a developed advance care plan (ACP).

Advance care planning is a process of discussing and recording priorities and wishes for future care and treatment held between an individual and their care providers (Henry and Seymour, 2007). It is a process that anticipates the future deterioration of a person’s condition and facilitates the acknowledgement and recording of wishes and preferences for future care so that when a person is no longer able to communicate, for whatever reason, these can be met.

People with dementia are at risk of losing the ability to make their own decisions as the condition progresses.

Method: A modified version of nominal group methodology (Delbecq et al 1974) was used to enable people with early dementia and their carers to generate ideas about the choices they may wish to make for their future care. We explored how people with early dementia and their carers define their wishes and priorities for future care and whether the expression of wishes and priorities for future care by the person with early dementia are better facilitated or inhibited by the carer being present. Three groups were held, one with carers, one with people with dementia and one mixed group.

The results indicated that most carers indicated euthanasia as a priority for their own future based on a need for ‘control’ and with the majority of people with dementia indicating their wish for comfort, closeness of family and to die in their preferred place of care.


Delbecq A. L. and VandeVen A. H, (1971). "A Group Process Model for Problem Identification and Program Planning," Journal of Applied Behavioral Science VII (July/August, 1971), 466 -91

Hanrahan P, Luchins DJ. (1995) Access to hospice programs in end-stage dementia: A national survey of hospice programs. Journal of the American Geriatrics Society. 43(1):56-59

Henry C & Seymour J (2007) Advance Care Planning: A Guide for health & social care staff. NEEoLC Programme, DoH

Sampson EL, Gould V, Lee D, Blanchard MR. (2006) Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age Ageing. 35(2):187-189

P16.3. Are shared housing arrangements beneficial to people with dementia concerning nutritional status during end-of-life care?

Saskia Meyer, Johannes Gräske, Andreas Worch, Karin Wolf-Ostermann

Introduction: Malnutrition, weight loss and disabilities in activities of daily living are common nursing challenges in elderly care. Especially people with dementia have a high risk of malnutrition and of losing weight, particularly in later stages of dementia. Besides the traditional care of people with dementia in nursing homes shared housing arrangement (SHA) for older, care depended people, frequently suffering from dementia evolved during the last years, in Germany. SHA follow the home for life principle, which means, that most of the residents pass away in these care arrangements. But there is a lack on findings concerning nutritional status and health outcomes of people living in SHA at the end of their life. Therefore, the presentation aims to discuss relationships of malnutrition, health outcomes and activities of daily living of residents in SHA in end-of-life care.

Methods: In a standardised cross-sectional study, face-to-face interviews were conducted in June 2010. Data concerning the nutritional status (MUST and MNA), activities of daily living (Extended Barthel Index), cognitive impairment (MMSE) and apathy (AES) as well as other socio-demographic characteristics of 104 residents from SHA in Berlin/Germany were recorded.

Results: The average age of all residents was 79.0 years. The majority of the residents were suffering from dementia syndrome (83.7%). The average MMSE was 11.5. According to MNA 85.7% had no risk for malnutrition. 10.7% had a poor nutritional status and 3.6% were at ​​risk for malnutrition. According to the MUST, 13.8% of all residents have a high risk for malnutrition. A poor nutritional status is associated with low cognitive ability, old age and low activities of daily living. There were no gender differences to be seen. Only 2 residents were receiving tube feeding in SHA at the time of data collection.

Discussion: The results show that residents of SHA certainly have an increased risk for malnutrition. Compared to results from inpatient facilities this risk is slightly lower but still one of the main impact factors for a loss in daily functioning. More scientifically reliable results concerning the nutritional status of residents with dementia in SHA are essential to clarify whether different living facilities show different results concerning malnutrition of people with dementia.

P16.4. When dementia care comes to an end: a study of former Greek family carers

A. Efthymiou, A. Vlachogianni, D. Potamianou, P. Zoi, A. Nika, E. Margioti, C. Nikolaou, P. Sakka

Introduction: The “Life After Care’’ Project was funded by the Lifelong Learning Programme ‘’Grundtvig’’ and carried out by the partnership of British, Irish, Italian and Greek NGOs. Aims included exchanging ideas and good practices about caring and post caring experience in Europe, supporting the transition of the role of carers to the role of former carer on local and national level and assisting carers’ reintegration into labour market or volunteering activities. This study aims at evaluating the post caring experience of Greek former carers.

Methods: 31 former carers, 87.1% women and 12.9% men, mean age 59 years and mean years of education 13, users of Dementia Day Care Centres and Home Care Programme of Athens Association of Alzheimer’s Disease and Related Disorders participated in this study.

Data were collected be means of a semi-structured interview, which was provided by Anziani e Non Solo società cooperative and Arco, the two Italian partners of the Grundtvig partnership “Life after care” and were analysed by Statistical Package for Social Sciences SPSS (V.16).

Results: Former carers’ answers regarding the evaluation of caring, the changes of their daily routine, social contacts, critical events during caring, self-esteem, ways of coping during caring and post caring period were analysed. 48.39% of the carers answered that lack of time was one of the most important changes in daily life during caring. 80.6% found themselves efficient as carers and 31% found neuropsychiatric symptoms as the most critical symptoms of the disease. At the post caring period, former carers have answered that leisure time was the most important change in their daily life and felt better when they participated in outdoor activities (38.7%) and when caring for another frail person (25.8%). 22% found it difficult to add new activities in their daily routine and 60% has answered that they were no longer bereaved.

Discussion: The existing literature of post caring is limited. According to Larkin (2009), carers after their relative’s death experience 3 transitional phases: “the post caring void”, “closing down the caring time” and “constructing life past caring”. Many carers, especially spouses determine their role through caring and it is difficult to imagine themselves in any other role. Alzheimer’s Associations could provide support and consultation to family carers at the end stage of their relatives’ disease in order to prepare them for the forthcoming changes and to help them getting “life together” again.

P16.5. Advanced medical treatment in persons with dementia

Sigurd Sparr

Persons with dementia should have the same right to advanced medical treatments as other persons. There is a tendency, however, to withhold certain treatments from persons with dementia when the person has got a diagnosis of dementia.

Examples are cancer treatment, surgery, renal replacement, TAVI (Transcatheter Aortic Valve Implantation), and others.

In my presentation, I will discuss this problem by TAVI as an example, a new technique to treat aortic stenosis in frail and seriously ill patients.

  • How serious is the dementia situation?
  • What is the prognosis with and without treatment?
  • What is the risk and calculated problems with the treatment?
  • What is the quality of life with and without treatment?
  • What is the will of the patient?
  • Are there any advance directives?
  • What do the carers want?
  • Are costs relevant?
  • Who should take part in decision making?

I will propose that this is a decision to be made by cooperation and consent between the patient, the carers, cardiologist, heart surgeon and geriatrician (and may be others!)



Last Updated: Wednesday 26 October 2011


  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene