Recommendations on end-of-life care for people with dementia

Abstract

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.