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2008: End-of-Life care for people with dementia

Ethical issues in practice

In 2007, on the occasion of its Annual Conference in Estoril (Portugal), Alzheimer Europe set up a working group to investigate the end-of-life care of people dying with or from dementia. I was invited to chair this working group, a responsibility which I gladly accepted.

The members of the working  group came  from a wide range of professional backgrounds such as palliative care, old age psychiatry, psychology, medicine and  nursing. Some had personal experience of caring  for a person with  dementia in the final stage of life. In addition to the various knowledge and experience that people brought to the working group, the fact that they also came from a range of different countries with different cultural and historical backgrounds led to a great deal of discussion about certain issues.  I feel that this has resulted in a very comprehensive document which combines theoretical and philosophical arguments with very practical and straightforward advice, including, where necessary, information about the medical aspects of end-of-life care.

The document is addressed to everyone with an interest in providing good quality end-of-life to people who have dementia, not just those with end-stage dementia but also people in the earlier stage of dementia who may have  another terminal condition. We have tried  to emphasize the importance of involving people with dementia and their carers in the whole care process.

Many of the recommendations contained in the report are dependent on an effective financing, organisation and coordination of end-of-life care, including multidisciplinary trained professionals and appropriate care facilities in all geographical areas. For this reason, our executive summary contains concrete recommendations for policy makers which highlight the main areas where improvement is needed.

I would  like to thank Dianne Gove, the information officer of Alzheimer  Europe, for her work in carrying out an extensive literature review, preparing the various drafts of the document and incorporating the comments and advice provided by the members of the working group. I would  of course also like to thank the members of the working group (Ana Bernardo, Mary Cosgrave, Iva Holmerová, Sabine Jansen,  Birgitta  Martensson, Barbara Pointon and Catalina Tudose, and) for their dedication and the very active role they played in sharing their vast expertise, experience and ideas. Last but not least, I would like to thank the following who also commented on the final draft: Jennifer Abbey, António Oliveira Costa, Jenny Henderson,  Annemarie Kesselring, Lukas Radbruch, Elisabeth Reitinger, Charles Scerri and Maria Rosário Zincke dos Reis.

I hope that this document contributes towards the development of a positive approach to the care of people with dementia who are dying and to greater support of those involved in their care.

Sigurd Sparr

Honorary Secretary

Alzheimer Europe



Last Updated: Monday 18 July 2016