Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries |
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| Affiliation: | 1. Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health, Medicine, and Life Sciences, Maastricht, The Netherlands;2. School of Nursing Science, Faculty of Health, Witten/Herdecke University, Witten, Germany;3. Department of Nursing Science, University of Turku, Turku, Finland;4. Personal Social Services Research Unit, Faculty of Medical and Human Sciences, The University of Manchester, Manchester, United Kingdom;5. Faculty of Medicine, University of Tartu, Tartu, Estonia;6. School of Health Sciences, TecnoCampus Mataró, Mataró, Spain;7. Department of Geriatric Medicine, Gérontopôle, CHU Toulouse University Hospital, Toulouse, France;8. Department of Health Sciences, The Medical Faculty at Lund University, Lund, Sweden;9. Institute of Health and Nursing Science, Medical Faculty, Martin-Luther-University Halle-Wittenberg, Halle, Germany;1. Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health, Medicine, and Life Sciences, Maastricht, The Netherlands;2. School of Nursing Science, Faculty of Health, Witten/Herdecke University, Witten, Germany;3. Department of Nursing Science, University of Turku, Turku, Finland;4. Personal Social Services Research Unit, Faculty of Medical and Human Sciences, The University of Manchester, Manchester, United Kingdom;5. Faculty of Medicine, University of Tartu, Tartu, Estonia;6. School of Health Sciences, TecnoCampus Mataró, Mataró, Spain;7. Department of Geriatric Medicine, Gérontopôle, CHU Toulouse University Hospital, Toulouse, France;8. Department of Health Sciences, The Medical Faculty at Lund University, Lund, Sweden;9. Institute of Health and Nursing Science, Medical Faculty, Martin-Luther-University Halle-Wittenberg, Halle, Germany;1. Department of Health Economics and Health Services Research, Hamburg Center for Health Economics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany;2. Institute of Primary Medical Care, University Medical Center Hamburg-Eppendorf, Hamburg, Germany;3. Department of Psychiatry, Technical University of Munich, Munich, Germany;4. Department of General Practice, Medical Faculty, University of Düsseldorf, Düsseldorf, Germany;5. Department of Psychiatry, University of Bonn, Bonn, Germany;6. German Center for Neurodegenerative Diseases (DZNE), Bonn, Germany;7. Institute of Social Medicine, Occupational Health and Public Health, University of Leipzig, Leipzig, Germany;8. Central Institute of Mental Health, Medical Faculty Mannheim/Heidelberg University, Mannheim, Germany;9. Institute of Biometrics, Hannover Medical School, Hannover, Germany;1. Centre de recherche Inserm, U897, Univ Victor Segalen, Bordeaux, France;2. Department of Geriatrics, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico;1. CAPHRI School for Public Health and Primary Care, Department of Health Services Research, Maastricht University, Maastricht, The Netherlands;2. Zuyd University of Applied Sciences, Research Centre on Autonomy and Participation, Heerlen, The Netherlands;3. Hunter College, City University of New York, New York, NY;1. Department of Health Services Research, Faculty of Health, Medicine and Life Sciences, CAPHRI School for Public Health and Primary Care, Maastricht, The Netherlands;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;1. Research, Development and Innovation Department, Gerontological Complex La Milagrosa, Provincial Association of Pensioners and Retired People (UDP) from A Coruña, Avenida de Cadiz-5, E-15008 A Coruña, Spain;2. Gerontology Research Group, Department of Medicine, Faculty of Health Sciences, Universidade da Coruña, Campus de Oza, E-15071 A Coruña, Spain;3. Center for Research in Ageing and Dementia, Faculty of Health Sciences, VIA University College, Campus Holstebro, Gl. Struervej 1, 7500 Holstebro, Denmark;4. Department of Nutrition and Health, Faculty of Health Sciences, VIA University College, Campus Aarhus N, Hedeager 2, 8200 Aarhus N, Denmark;5. Department of Clinical Psychology, Poznan University of Medical Sciences, 70 Bukowska Street, 60-812 Poznan, Poland;6. Department of Physiotherapy, Rheumatology and Rehabilitation, Poznan University of Medical Sciences, 135/147, 28 Czerwca 1956r. Street, 61-545 Poznan, Poland;1. Department of Nursing, Hospital Clínic de Barcelona, Villarroel 170, 08036 Barcelona, Spain;2. School of Health Sciences TecnoCampus, Pompeu Fabra University, Ernest Lluch 32, 08032 Mataró, Spain;3. Personal Social Services Research Unit, The University of Manchester, M13 9PL, United Kingdom;4. Faculty of Health, School of Nursing Science, Witten/Herdecke University, Germany;5. Department of Health Sciences, Lund University, Sweden;6. Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Maastricht University, the Netherlands;7. Department of Internal Medicine, University of Tartu, Estonia;8. Department of Nursing Science, University of Turku, Finland;9. Department of Internal Medicine and Geriatrics, Gerontopole, Toulouse, France |
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| Abstract: | ObjectivesTo explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries.DesignAn explorative cross-sectional study was conducted in 8 European countries.SettingPer 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.ParticipantsOf 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.MeasurementsAs 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.ResultsMainly 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.ConclusionMultiple 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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| Keywords: | Dementia informal caregivers family caregivers reasons for institutionalization |
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