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. 2017 Oct 10;17(1):232.
doi: 10.1186/s12877-017-0620-3.

Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study

Silke F Metzelthin  1 , Ellen Verbakel  2 , Marja Y Veenstra  3 , Job van Exel  4 , Antonius W Ambergen  5 , Gertrudis I J M Kempen  6
Affiliations

Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study

Silke F Metzelthin et al. BMC Geriatr. .

Abstract

Background: Our ageing society is putting tremendous strain on public health and welfare programs to meet the needs of ageing individuals. Promoting informal caregiving is one way for policymakers to reduce this burden. However, caregiving may be experienced as stressful and is associated with adverse health consequences. While quite a lot of research focuses on caregiving for community-dwelling older adults, little is known about informal care in institutionalised long-term care (ILTC). Therefore, the objectives of this study were: 1) to compare characteristics of informal caregivers and care receivers and caregiver outcomes - at home and in ILTC; 2) to study the association between these characteristics and positive and negative caregiver outcomes; 3) to investigate the moderating effect of the setting (at home vs. ILTC) on these associations.

Methods: A cross-sectional study was conducted using the TOPICS-MDS DataSet. A total of 5197 Dutch dyads were included. The average age of the care receivers and caregivers was respectively 80.7 years and 63.2 years. Several sociodemographic, health-related and caregiving-related characteristics of care receiver and caregiver and two caregiver outcomes (i.e., subjective burden and care-related quality of life) were included in the analyses.

Results: Caregivers in both settings experienced comparable levels of subjective burden. Caregivers at home had slightly lower care-related quality of life than caregivers in ILTC. Several care receiver characteristics (i.e., male sex, married/cohabiting, more morbidities/disability, and less self-perceived health/psychological wellbeing) and several caregiver characteristics (i.e., female sex, being younger, living together with the care receiver, more objective burden, less self-perceived health, and more support) were associated with an increase in burden and/or a decrease in care-related quality of life. Some of these associations were stronger for dyads at home compared to dyads in ILTC.

Conclusions: Informal caregiving does not stop with admission to an ILTC facility. Both settings need an informal caregiving policy, which is (1) tailored to the individual characteristics of care receivers and caregivers; (2) pays attention to the identified risk groups; and (3) reduces the negative caregiver outcomes and emphasizes the positive outcomes at the same time.

Keywords: Ageing in place; Caregiving burden; Community-dwelling older adults; Family caregiving; Home care; Informal caregiving; Institutionalised long-term care; Quality of life.

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Conflict of interest statement

Ethics approval and consent to participate

This study made use of the TOPICS-MDS database (www.topics-mds.eu). TOPICS-MDS is a public data repository which contains information on the physical and mental health and wellbeing of older persons and informal caregivers across the Netherlands. To access data potential users have to complete a TOPICS-MDS Data Request Form. Following submission, requests will be assessed by TOPICS Project Group for feasibility and overlap with previous or on-going data requests. To avoid preferential release of data, requests will also be review by TOPICS Societal Board, which focuses on societal relevance of the research question. The data of the TOPICS-MDS database is de-identified and available for public access. Therefore, research which is conducted using TOPICS-MDS fall outside the scope of the Dutch Medical Research Involving Human Subjects Act (WMO).

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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