Needs of informal caregivers during transition from home towards institutional care in dementia: a systematic review of qualitative studies.

BACKGROUND: Alongside providing care, informal caregivers of people with dementia often need support and guidance themselves, especially during difficult periods such as the care-transition from home towards a nursing home. Knowledge on needs of informal caregivers during this period is sparse. This study aims to provide insight into problems and needs of informal caregivers caring for people with dementia during care-transition from home-based care to institutional long-term care. METHODS: A systematic electronic search in CINAHL, Cochrane, Medline, PsycINFO, Pubmed and Web of Knowledge. All qualitative articles up to September 2013 were considered. The included articles underwent a quality appraisal. Thematic analysis was used to analyze problems and needs described in the articles. RESULTS: Thirteen publications were included providing 14 topics comprising needs and problems of informal caregivers during the care-transition period. The most stated topics were: "emotional concerns" (e.g. grief and shame about the decision), "knowledge/information" (e.g. understanding the care system) and "support" (e.g. need for counseling). Similar topics were found prior and after admission, with examples specific to the either the home or nursing home situation. CONCLUSIONS: The care-transition period should be considered a continuum, as similar needs and problems were identified prior and after admission. This should be kept in mind in developing support and guidance for informal caregivers during this process. Whereas currently the situation prior and post admission are seen and treated as adjacent stages, they should be considered one integrated stage. Multicomponent programmes should be offered that are designed in a continuous way, starting prior to admission, and continuing after.

Predicting institutional long-term care admission in dementia: a mixed-methods study of informal caregivers' reports.

AIM: To investigate agreement between: (1) expected reasons and actual reasons for admission of people with dementia according to informal caregivers; (2) scores on measurement instruments prior to admission and the actual reasons for admission according to informal caregivers. BACKGROUND: Timely admission of people with dementia is a crucial issue. Information is highly warranted on whether informal caregivers are capable of prior identification of causes of admission and, can thus be considered a reliable prospective source on causes of admission. DESIGN: A cohort study among informal caregivers of people with dementia who made a transition to institutional long-term care. METHODS: Qualitative data on the expected and actual reasons for admission were collected via open-ended questions at baseline and follow-up. Furthermore, at baseline, data were collected using measurement instruments to measure pre-admission characteristics. Interviews took place between November 2010-April 2012. After categorizing the answers, the agreement between the expected and actual reasons was calculated. Furthermore, bivariate associations were calculated between the actual reasons for admission and scores on corresponding measurement instruments. RESULTS/FINDINGS: For most informal caregivers, there was agreement between their statements on the expected reason and the actual reason for admission. A third of the caregivers showed no conformity. Bivariate associations showed that there is also agreement between the actual reasons for admission and scores on corresponding measurement instruments. CONCLUSION: Informal caregivers can be considered reliable sources of information regarding what causes the admission of a person with dementia. Professional care should anticipate informal caregivers' statements and collaborate with them to strive for timely and appropriate admission.

Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals.

AIMS: To explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries. BACKGROUND: Healthcare professionals may have an important role in facilitating informal caregivers' decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization. DESIGN: Cross-sectional survey in eight European countries (November 2010-January 2012). METHODS: Healthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa). RESULTS: Judgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain. CONCLUSION: Agreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.

Reasons for institutionalization of people with dementia: informal caregiver reports from 8 European countries.

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.