Basema Afram1, Astrid Stephan2, Hilde Verbeek3, Michel H C Bleijlevens3, Riitta Suhonen4, Caroline Sutcliffe5, Katrin Raamat6, Esther Cabrera7, Maria E Soto8, Ingalill R Hallberg9, Gabriele Meyer10, Jan P H Hamers3. 1. Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health, Medicine, and Life Sciences, Maastricht, The Netherlands. Electronic address: b.afram@maastrichtuniversity.nl. 2. School of Nursing Science, Faculty of Health, Witten/Herdecke University, Witten, Germany. 3. Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health, Medicine, and Life Sciences, Maastricht, The Netherlands. 4. Department of Nursing Science, University of Turku, Turku, Finland. 5. Personal Social Services Research Unit, Faculty of Medical and Human Sciences, The University of Manchester, Manchester, United Kingdom. 6. Faculty of Medicine, University of Tartu, Tartu, Estonia. 7. School of Health Sciences, TecnoCampus Mataró, Mataró, Spain. 8. Department of Geriatric Medicine, Gérontopôle, CHU Toulouse University Hospital, Toulouse, France. 9. Department of Health Sciences, The Medical Faculty at Lund University, Lund, Sweden. 10. School of Nursing Science, Faculty of Health, Witten/Herdecke University, Witten, Germany; Institute of Health and Nursing Science, Medical Faculty, Martin-Luther-University Halle-Wittenberg, Halle, Germany.
Abstract
OBJECTIVES: To explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries. DESIGN: An explorative cross-sectional study was conducted in 8 European countries. SETTING: Per country, a minimum of 3 long term care facilities, offering care and accommodation as a package, participated in this study. Participating countries were selected to represent different geographic areas in Europe. PARTICIPANTS: Of the 791 informal caregivers involved in the RightTimePlaceCare project of people with dementia who were recently admitted to a long term care facility, 786 were included for this study. MEASUREMENTS: As part of a semistructured interview, informal caregivers were asked the main reason for institutionalization in an open-ended question. Answers were categorized according to a conventional coding approach. All reasons were then quantified and tested. RESULTS: Mainly patient-related reasons were stated, such as neuropsychiatric symptoms (25%), care dependency (24%), and cognition (19%). Neuropsychiatric symptoms were among the most often mentioned reasons in most countries. Besides patient-related reasons, caregiver burden and the inability of the informal caregiver to care for the patient were stated as reasons (both 15%). Further analyses showed countries differ significantly in reasons according to informal caregivers. Additionally, reasons were analyzed for spouses and child-caregivers, showing that spouses more often stated reasons related to themselves compared with child-caregivers. CONCLUSION: Multiple reasons contribute to the institutionalization for people with dementia, with several factors that may influence why there were country differences. Variation in the organization of dementia care and cultural aspects, or the relationship between the informal caregiver and person with dementia may be factors influencing the reasons. Because of a wide variation in reasons between countries, no one-size-fits-all approach can be offered to guide informal caregivers when facing the possibility of institutionalization of the person with dementia.
OBJECTIVES: To explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries. DESIGN: An explorative cross-sectional study was conducted in 8 European countries. SETTING: Per country, a minimum of 3 long term care facilities, offering care and accommodation as a package, participated in this study. Participating countries were selected to represent different geographic areas in Europe. PARTICIPANTS: Of the 791 informal caregivers involved in the RightTimePlaceCare project of people with dementia who were recently admitted to a long term care facility, 786 were included for this study. MEASUREMENTS: As part of a semistructured interview, informal caregivers were asked the main reason for institutionalization in an open-ended question. Answers were categorized according to a conventional coding approach. All reasons were then quantified and tested. RESULTS: Mainly patient-related reasons were stated, such as neuropsychiatric symptoms (25%), care dependency (24%), and cognition (19%). Neuropsychiatric symptoms were among the most often mentioned reasons in most countries. Besides patient-related reasons, caregiver burden and the inability of the informal caregiver to care for the patient were stated as reasons (both 15%). Further analyses showed countries differ significantly in reasons according to informal caregivers. Additionally, reasons were analyzed for spouses and child-caregivers, showing that spouses more often stated reasons related to themselves compared with child-caregivers. CONCLUSION: Multiple reasons contribute to the institutionalization for people with dementia, with several factors that may influence why there were country differences. Variation in the organization of dementia care and cultural aspects, or the relationship between the informal caregiver and person with dementia may be factors influencing the reasons. Because of a wide variation in reasons between countries, no one-size-fits-all approach can be offered to guide informal caregivers when facing the possibility of institutionalization of the person with dementia.
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