Reasons for institutionalization of people with dementia: informal caregiver reports from 8 European countries.
OBJECTIVE
To explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries.


METHODS
An explorative cross-sectional study was conducted in 8 European countries.


METHODS
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.


METHODS
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.


METHODS
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.


CONCLUSIONS
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.
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.
Basema
B
Afram
School of Nursing Science, Faculty of Health, Witten/Herdecke University, Witten, Germany.
Astrid
A
Stephan
Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health, Medicine, and Life Sciences, Maastricht, The Netherlands.
Hilde
H
Verbeek
Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health, Medicine, and Life Sciences, Maastricht, The Netherlands.
Michel H C
MH
Bleijlevens
Department of Nursing Science, University of Turku, Turku, Finland.
Riitta
R
Suhonen
Personal Social Services Research Unit, Faculty of Medical and Human Sciences, The University of Manchester, Manchester, United Kingdom.
Caroline
C
Sutcliffe
Faculty of Medicine, University of Tartu, Tartu, Estonia.
Katrin
K
Raamat
School of Health Sciences, TecnoCampus Mataró, Mataró, Spain.
Esther
E
Cabrera
Department of Geriatric Medicine, Gérontopôle, CHU Toulouse University Hospital, Toulouse, France.
Maria E
ME
Soto
Department of Health Sciences, The Medical Faculty at Lund University, Lund, Sweden.
Ingalill R
IR
Hallberg
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.
Gabriele
G
Meyer
Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health, Medicine, and Life Sciences, Maastricht, The Netherlands.
Jan P H
JP
Hamers
D000058:Accidental Falls; D032721:Adult Children / Q000523:psychology; D001519:Behavior; D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003704:Dementia / Q000453:epidemiology* / Q000523:psychology* / Q000628:therapy; D006233:Persons with Disabilities; D005060:Europe / Q000453:epidemiology; D005260:Female; D006801:Humans; D007326:Institutionalization; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009735:Nursing Homes; D012944:Social Support; D018454:Spouses / Q000523:psychology / Q000706:statistics & numerical data
Dementia; family caregivers; informal caregivers; reasons for institutionalization