Hanneke C Beerens1, Caroline Sutcliffe2, Anna Renom-Guiteras3, Maria E Soto4, Riitta Suhonen5, Adela Zabalegui6, Christina Bökberg7, Kai Saks8, Jan P H Hamers9. 1. Department of Health Services Research, Faculty of Health, Medicine and Life Sciences, CAPHRI School for Public Health and Primary Care, Maastricht, The Netherlands. Electronic address: h.beerens@maastrichtuniversity.nl. 2. Personal Social Services Research Unit, Faculty of Medical and Human Sciences, The University of Manchester, Manchester, United Kingdom. 3. School of Nursing Science, Faculty of Health, University of Witten/Herdecke, Witten, Germany. 4. Department of Geriatric Medicine, CHU Toulouse University Hospital, Toulouse, France. 5. Department of Nursing Science, University of Turku, Turku, Finland. 6. Fundació Privada Clínic per a la Recerca Biomèdica, Hospital Clinic of Barcelona, Barcelona, Spain. 7. Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden. 8. Department of Internal Medicine, University of Tartu, Tartu, Estonia. 9. Department of Health Services Research, Faculty of Health, Medicine and Life Sciences, CAPHRI School for Public Health and Primary Care, Maastricht, The Netherlands.
Abstract
OBJECTIVES: To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD) vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements; and to assess the association between QoL and QoC. DESIGN: Cross-sectional survey. SETTING: Institutional long term care and home care in 8 European countries (England, Estonia, Finland, France, Germany, the Netherlands, Spain, and Sweden). PARTICIPANTS: PwD receiving formal home care but at risk for admission to an institutional setting, and PwD who were recently admitted. MEASUREMENTS: QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer's Disease scale (QoL-AD) (range 13-52). QoC was measured using quality of care indicators (eg, the presence of depressive symptoms, the presence of pressure ulcers). RESULTS: A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutional care (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. No differences in QoL were detected among the settings. For the QoC indicators, no consistent patterns were visible in such a way that certain countries or settings scored "higher" or "lower." The presence of depressive symptoms was most consistently associated with lower QoL (P ≤ .001). CONCLUSION: There is great variation in QoL and QoC scores among European countries and settings. To gain insight into the underlying causes of these differences, more knowledge is needed about the effect of different national health care systems and dementia strategies on QoL and QoC indicators. Depressive symptoms were associated with QoL, and executing longitudinal studies investigating which factors are associated with change in QoL is highly recommended.
OBJECTIVES: To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD) vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements; and to assess the association between QoL and QoC. DESIGN: Cross-sectional survey. SETTING: Institutional long term care and home care in 8 European countries (England, Estonia, Finland, France, Germany, the Netherlands, Spain, and Sweden). PARTICIPANTS: PwD receiving formal home care but at risk for admission to an institutional setting, and PwD who were recently admitted. MEASUREMENTS: QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer's Disease scale (QoL-AD) (range 13-52). QoC was measured using quality of care indicators (eg, the presence of depressive symptoms, the presence of pressure ulcers). RESULTS: A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutional care (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. No differences in QoL were detected among the settings. For the QoC indicators, no consistent patterns were visible in such a way that certain countries or settings scored "higher" or "lower." The presence of depressive symptoms was most consistently associated with lower QoL (P ≤ .001). CONCLUSION: There is great variation in QoL and QoC scores among European countries and settings. To gain insight into the underlying causes of these differences, more knowledge is needed about the effect of different national health care systems and dementia strategies on QoL and QoC indicators. Depressive symptoms were associated with QoL, and executing longitudinal studies investigating which factors are associated with change in QoL is highly recommended.
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