Quality of life in dementia care – differences in quality of life measurements performed by residents with dementia and by nursing staff

Abstract

Objectives: Quality of life (QoL) is a major outcome parameter in dementia care. Self-ratings are considered the best way to evaluate QoL, but staff-ratings also provide valid results. In particular, the discrepancies between self-ratings and staff-ratings are underrepresented. The aim was to identify characteristics of people with dementia that improve the probability of completing a self rating QoL instrument on the ‘Quality of Life – Alzheimers’ Disease’ (QoL-AD). Additionally, a level of agreement was set between self-rated and staff-rated QoL-AD and possible influencing factors.

Method: A cross-sectional study was conducted in 2010 in Berlin. Using the instrument QoL-AD, the self- and staff-rated QoL of people with dementia was assessed.

Results: 104 residents (73.1% female, mean age: 79.0 years, mean cognitive function (MMSE): 11.5) were included in this research project. 49 (47.1%) residents were able to complete the QoL-AD questionnaire. A predictor to complete the QoL-AD was the MMSE-part ‘language’. Residents rated their QoL as significantly higher than the nursing staff did. If the primary nurse rated the QoL, a significantly better agreement was identified.

Conclusion: The study generated new findings concerning a better understanding of QoL measurements. The results suggest the usefulness of performing self-ratings whenever possible. If proxy-ratings have to be used, these should be performed by primary nurses only in order to get reliable results.

Keywords:

• dementia
• quality of life
• self-ratings
• staff-ratings

Acknowledgements

The authors are indebted to all residents and nursing staff members who participated in the study. The WGQual study was funded by the German Federal Ministry of Education and Research. The first author is a doctoral candidate in the PhD program “Multimorbidity in Old Age” at the Charité-Universitätsmedizin Berlin, which is funded by the Robert Bosch Foundation.