Original Study
Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

https://doi.org/10.1016/j.jamda.2013.09.012Get rights and content

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.

Section snippets

Design

Embedded in the RightTimePlaceCare project,19 an explorative cross-sectional study was conducted in 8 countries: England, Estonia, Finland, France, Germany, the Netherlands, Spain, and Sweden.

Sample

As part of the RightTimePlaceCare project, dyads were recruited consisting of people with dementia who were recently admitted to long term nursing care facilities and their main informal caregiver.19 Possible participants were identified by the long term care facilities through their administration of new

Data Collection

Data were collected between November 2010 and January 2012. Before data collection, ethical approval was obtained in each country to conduct the study. Before each individual interview, written informed consent was obtained from informal caregivers.

During a comprehensive structured face-to-face interview, a specific open-ended question regarding the institutionalization was posed. Informal caregivers were asked, Please state the main reason for institutionalization. Informal caregivers also

Sample Characteristics

Of the 791 interviews conducted for RightTimePlaceCare, 786 informal caregivers were eligible for this study. Table 1 presents the sociodemographic characteristics of the sample. Informal caregivers were predominantly female (65%), had an average age of just over 61 years, and were, for the largest part, a child of the person with dementia (63%). Some variation between the samples of the countries was found, with Sweden having older caregivers, and Estonia having younger caregivers. France

Discussion

This study aimed to explore reasons for institutionalization of people with dementia according to informal caregivers within 8 European countries. Variations among countries were found in reasons for institutionalization; however, overall results showed that caregivers mainly stated reasons related to the person with dementia. This is contrary to some previous research in which more reasons related to informal care came forward.12 Informal caregivers often stated multiple reasons in their

Conclusion and Implications

The contributions of this study imply that there is no definitive reason for the institutionalization of a person with dementia, with multiple factors contributing to the decision. The wide variation of reasons found across the countries and between spouses and child-caregivers indicates that several aspects influence the final reason for the institutionalization of the person with dementia. Despite a wide variation of reasons, neuropsychiatric symptoms seem a very important factor. This

Acknowledgments

The authors thank Elles Lenaerts and Anna Renom for their help in categorizing the data.

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    The RightTimePlaceCare study is supported by a grant from the European Commission within the seventh framework programme (project 242153).

    The authors declare no conflicts of interest.

    1

    The RightTimePlaceCare Consortium partners and their affiliations are listed in Appendix 1.

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    Copyright © 2014 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.