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Plenary session: Improving the quality of life of people with dementia and their carers

Abstracts and presentations

The experience of people with dementia and their views on quality of life

When discussing the quality of life of people with dementia, it is essential to involve people with dementia in any discussions on the subject and to properly listen to their experiences. For that reason, LINAL and Alzheimer Europe have decided to place people with dementia at the very beginning of the conference. We are delighted that Marleen Declercq and Marina Thijssens have agreed to participate and share their views and experiences.

Their presentations will be preceded by excerpts from the DVD “Een steen in je hand” which gives a voice to people with dementia.

Alzheimer Europe recommendations for quality care at the end-of-life

Sigurd Sparr, Nasjonalforeningen Demensförbundet, Norway,

Alzheimer Europe set up a working group in 2007 to investigate the end-of-life care of people with dementia. The report was published at the end of 2008.

In the report, “end-of-life” is identified as being a matter of days or weeks before the actual moment of death. The recommendations are focused on end of life for those who die in end stage dementia, but also those who are have dementia and die of other identifiable conditions.

The presentation will deal with some guidelines for care and treatment including carers’ needs and some specific care issues like pain management, feeding problems etc.

The presentation will include some ethical issues as well, and deal with some of the recommendations for people with dementia, carers, health care professionals and policy makers.

Assessment of quality of life in dementia: problems, methods and results

Michel Ylieff, Université de Liège, Belgium,

The Quality of Life (QoL) is a popular concept and it is the topic of much scientific research. Its definition raises numerous questions and its assessment comes up against many methodological problems. QoL of people with dementia has been studied for the past 15 yeas. The concept was first used to assess the effects of different treatments (pharmacological, psychosocial), the contributions made by social and health services, and the effects of residential management. A number of assessment tools have been developed over the years and researchers are currently debating the best application of different methodologies concerning self or proxy reporting and QoL domains. In populations with dementia, cross-sectional and longitudinal studies show that QoL is not as bad as what is usually believed. However, it decreases gradually in the course of staging. It doesn’t differ strongly according to the place of residence (community setting/institution). Cognitive decline is a very limited explanatory factor. QoL disturbances are often associated with psychological or behavioural disturbances and with the physical and social environment in which the person with dementia lives and must cope with the disease.


Plenary session - Quality of life


Last Updated: Wednesday 21 October 2009