Summary The construction of a dementia-specific Quality of Life instrument rated by professional caregivers in residential settings: the QUALIDEM

During the last fifteen to twenty years Quality of Life (QOL) has been recognized as an important outcome of the care for people with dementia, but the first instrument to assess QOL in dementia did not appear until the late 1990s. Many researchers felt the need for such an instrument, as most behavioral observation scales focus on behavioral and psychological symptoms (BPSD), not on positive aspects of life. Within a study on the effects of integrated emotion-oriented care (that ran from 1996 to 2000) the researchers therefore conducted a qualitative study using the method of participant observation, to assess variables that could not be measured with the existing quantitative measures. After completing the study, the researchers expressed the need for a good QOL instrument. This thesis describes the development and evaluation of such a QOL instrument. The aim of the project was an instrument that can assess QOL of all residents with dementia living in nursing homes. The project started in December 2001 with a literature study in order to conceptually define QOL in dementia (chapter 2). A broad orientation was preferred to avoid omissions within the dementia-specific concept of QOL, and QOL was therefore studied in the elderly population, in chronic disease, and in dementia respectively. Adaptation proved an important outcome in many studies investigating interventions aimed at improving QOL in chronic disease. In 1991 Dröes presented the adaptation-coping model as a hypothetical framework to describe and explain psychosocial problems of people with dementia. The results of our literature study provided sufficient support to qualify adaptation as an important indication for QOL in both chronic disease and dementia. The following conceptual definition of QOL in dementia could then be offered: dementia-specific QOL is the multidimensional evaluation of the person-environment system of the individual, in terms of adaptation to the perceived consequences of the dementia. A second literature study was conducted to identify and discuss instruments that had been used to assess QOL or elements of QOL in dementia up to 2003 (chapter 3). Six dementiaspecific QOL measures, eight generic QOL measures, and three dementia-specific QOL– related measures were found. The measures vary considerably in scale content and in method of data collection. The severity of the dementia of the people studied affects the method of data collection: self-report for people with mild dementia, and proxy-report for people with severe