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Quality of life in dementia in perspective

An explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature

VU University Medical Centre, Amsterdam,The Netherlands

Ellen C.C. Boelens-Van Der Knoop

Nursing Home De Schiphorst, Meppel,The Netherlands

Joke Bos

Amsterdam Meeting Centre De Pijp,Amsterdam, The Netherlands

Lucinda Meihuizen

Stichting Zorgpartners Midden-Holland,Gouda,The Netherlands

Teake P. Ettema

Institute for Research in Extramural Medicine,VU Medical Centre, Amsterdam/Trimbos Institute Utrecht,The Netherlands

Debbie L. Gerritsen

Heyendael Instituut Nijmegen, The Netherlands

Frans Hoogeveen

Florence Care Group,Rijswijk, The Netherlands

Jacomine De Lange

Trimbos Institute,The Netherlands Institute of Mental Health and Addiction,Utrecht, The Netherlands

Carla J.M. SchöLzel-Dorenbos

Slingeland Hospital,Doetinchem, The Netherlands

Many different definitions of the concept of quality of life (QOL) are found in the literature. This raises the question as to which domains are viewed as really important by people with dementia and which are possibly based on views of others, such as (in)formal carers, or theoretical models. An explorative study was carried out among people with dementia living in the community and in nursing homes. Their opinions were compared to those of professional carers and to the current theoretical models and instruments for QOL in dementia. Data were gathered by means of interviews, focus groups and literature study. Most QOL domains mentioned as important by the persons with dementia were also acknowledged by the carers and in the literature. A few, however, were not mentioned by the carers (i.e. ‘sense of aesthetics in living environment’,‘financial situation’ and ‘being of use/giving meaning to life’), and not selected in the measuring instruments (‘security and privacy’, and ‘self-determination and freedom’). This indicates differences in perspectives on quality of life between persons with dementia, their carers and theoretical models. Further research is recommended on this point.

Key Words: opinions on quality of life • people with dementia • professional carers • QOL domains • theoretical models

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