RECOMMENDATIONS ON END-OF-LIFE CARE FOR PEOPLE WITH DEMENTIA

Objective: To establish, in collaboration with national Alzheimer Societies in Europe, practical and consensual recommendations for the end-of-life care of people with dementia. The aim of these recommendations is to provide a basis for understanding and action with regard to end-of-life care not only for family caregivers but also for professionals, policy makers and anyone with an interest in palliative care. Design: A literature review was carried out by Alzheimer Europe in collaboration with a working group comprised of people from different backgrounds such as family caregivers, physicians, palliative care nurses and members of Alzheimer associations, who also prepared the draft recommendations during 4 sessions. These recommendations were then discussed with external experts and sent to Alzheimer Europe’s member associations to be broadly discussed within their countries until a consensus was reached. Setting: Alzheimer Europe is an umbrella association of European Alzheimer societies with 34 member associations in 30 different countries. Subjects: Not applicable. Methods: Literature review, workshops, dissemination by e-mail and during conferences, consensus finding. Results: At the end of 2008, Alzheimer Europe prepared written recommendations on good end-of-life care for people with dementia. We are aware that this topic is challenging and that there is therefore a need for further discussion. Conclusion: In this article we aim to present these recommendations and to invite professionals to consider these important issues and to contribute towards a broader discussion.