Do oldest old individuals perceive receipt of informal care as a restriction or support of their autonomy?

Abstract

Objectives

Autonomy (defined as self-governance; not equivalent to independence) is relevant to well-being and psychological functioning. However, there is a lack of research on individuals aged >85 years and their perception of autonomy when receiving informal care. This study aims to answer the question if and how the receipt of informal care is associated with perceived autonomy of individuals aged over 85 years.

Method

A cross-sectional study was conducted with data from follow-up 9 of the AgeQualiDe study (2015/2016), which is a multi-centric prospective cohort study in Germany. The analytical sample included 570 participants aged >85 years and with a score of ≥ 19 on the Mini-Mental-State-Examination. Perceived autonomy was assessed with the Perceived Autonomy in Old Age Scale. Receipt of care was assessed as performance of at least one care task (help with basic and instrumental activities of daily living, and supervision) by relatives or friends. Sociodemographic information, mental health, functional level and receipt of professional ambulatory care were controlled for.

Results

Unadjusted and adjusted linear regression analyses indicated a significant negative association between receipt of informal care and perceived autonomy. The results remained stable in sensitivity analyses; no significant interaction effect was found for gender or education.

Conclusion

Findings indicate that informal care recipients aged >85 years perceive lower autonomy compared to those not receiving care. Additional or other forms of support, and improving the care relationship and communication might be considered to support autonomy of care recipients aged >85 years.

Keywords:

• Autonomy
• informal care
• 85 years and older
• multi-centric study
• quantitative methods

Disclosure statement

The authors report no conflict of interest.

Data availability statement

Due to ethical restrictions involving patients’ data, underlying data are only available on reasonable request. Interested parties may contact the Working Group Medical Statistics and IT-Infrastructure, Institute for General Practice, Hannover Medical School, Hannover, Germany (Birgitt Wiese; [email protected]).

Ethics approval and consent to participate

All participants in the AgeQualiDe study provided written informed consent before participation. If participants were categorized as not being capable to provide consent (e.g. due to dementia), their guardian provided informed consent. The study has been approved by the ethics committees of all participating study centers, and complies with the ethical standards of the Declaration of Helsinki.

• Ethics Commission of the Medical Association Hamburg (reference number: MC-390/13)

• Ethics Committee of the Medical Faculty of the Rheinische Friedrich-Wilhelms-University of Bonn (reference number: 369/13)

• Medical Ethics Commission II of the Medical Faculty Mannheim/Heidelberg University (reference number: 2013-662 N-MA)

• Ethics Committee of the Faculty of Medicine of the University of Leipzig (reference number: 309/2007; AZ: 333-13-18112013)

• Ethical Committee of the Medical Faculty of the Heinrich-Heine-University Düsseldorf (reference number: 2999)

• Ethics Committee of the Faculty of Medicine of the Technical University of Munich (reference number: 713/02 E)

Additional information

Funding

This study is part of the German Research Network on Dementia (KND), the German Research Network on Degenerative Dementia (KNDD; German Study on Ageing, Cognition and Dementia in Primary Care Patients; AgeCoDe), and the Health Service Research Initiative (Study on Needs, health service use, costs and health-related quality of life in a large sample of oldest-old primary care patients (85+; AgeQualiDe)) and was funded by the German Federal Ministry of Education and Research (grants KND: 01GI0102, 01GI0420, 01GI0422, 01GI0423, 01GI0429, 01GI0431, 01GI0433, 01GI0434; grants KNDD: 01GI0710, 01GI0711, 01GI0712, 01GI0713, 01GI0714, 01GI0715, 01GI0716; grants Health Service Research Initiative: 01GY1322A, 01GY1322B, 01GY1322C, 01GY1322D, 01GY1322E, 01GY1322F, 01GY1322G).