Abstract
Different definitions of quality of life (QOL) are found in the literature. This raised the question which domains are viewed as really important by persons with dementia. In an explorative study the opinions of persons with dementia (community-dwelling and living in nursing homes), were compared to those of professional carers and instruments for QOL in dementia. Data were gathered through interviews, focus groups and literature study. Most QOL-domains mentioned as important by persons with dementia were also acknowledged by carers and in measurement instruments. Some domains, however, were not mentioned by the carers ('sense of aesthetics', 'financial situation', 'being useful' and 'spirituality'), or not selected in the measuring instruments ('security and privacy', 'self-determination and freedom', 'being useful' and 'spirituality'). This indicates differences in perspectives on quality of life between persons with dementia, professional caregivers and researchers. Subsequently it was studied to what degree professionals focus on the QoL-domains that persons with dementia consider essential. Caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire (N = 374). They reported to focus at least to some degree on most domains considered important by persons with dementia. However, little attention was paid to the domains 'financial situation' and 'being useful'. Professionals offering daytime activities focused more than 24-hour care staff on 'attachment', 'enjoyment of activities', 'sense of aesthetics', and 'being useful'. This article is a translation and merging of 1) Droes et al. 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. Dementia: The International Journal 2006; 5 (4): 533-558, and 2) Gerritsen et al. Differences in perspective: do professional caregivers focus on the Quality of life domains that are important for people with dementia? American Journal of Alzheimer's Disease and Other Dementias 2007; 22:176-183.
