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Transitions to family caregiving: enrolling incident caregivers and matched non-caregiving controls from a population-based study

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Abstract

Background and aim

Providing care to an older adult with a disability has been associated with increased risk to the caregiver’s health, but most previous studies of caregiving and health compare persons who are already caregivers with poorly matched non-caregiving controls and are often based on convenience samples. In this report, we describe the enrollment of persons who transitioned into a family caregiving role while participating in a national epidemiological study.

Methods

Participants in the REasons for Geographic And Racial Differences in Stroke (REGARDS) study were asked on two occasions 9–14 years apart if they were providing care on an ongoing basis to a family member with a chronic illness or disability. Those who answered “no” and “yes”, respectively, to this caregiving question and reported sufficient caregiving responsibilities after their transitions were enrolled in the present study as incident caregivers (N = 251). Participants matched on multiple demographic and health history variables and who reported no history of caregiving were enrolled as non-caregiving controls (N = 251).

Results

Among eligible participants, 84% agreed to participate, and 47% of caregivers reported caring for a person with dementia. Descriptive analyses confirmed the success of the matching procedures for balancing the groups on multiple demographic and pre-caregiving health variables. Depressive symptoms and perceived stress increased significantly after the transition to caregiving.

Conclusion

Comparable, population-based samples of incident caregivers and matched non-caregivers have been enrolled. Future analyses will examine within-person changes in health and circulating biomarkers as a function of the transition to caregiving.

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Data availability

In cooperation with the Institutional Review Board (IRB) of the University of Alabama at Birmingham (UAB), the REGARDS project facilitates data sharing through formal data use agreements. Investigators who wish to access the data should send their requests to regardsadmin@uab.edu.

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Funding

This work was supported by a cooperative agreement [U01 NS041588] co-funded by the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute on Aging (NIA), National Institutes of Health, Department of Health and Human Services; and by an investigator-initiated grant [RF1 AG050609] from the NIA. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NINDS or NIA. Representatives of the NINDS were involved in the review of the manuscript but were not directly involved in the collection, management, analysis, or interpretation of the data. The authors thank the other investigators, the staff, and the participants of the REGARDS study for their valuable contributions. A full list of participating REGARDS investigators and institutions can be found at http://www.regardsstudy.org.

Author information

Authors and Affiliations

  1. Center on Aging and Health, Division of Geriatric Medicine and Gerontology, Johns Hopkins University, 2024 East Monument Street, Suite 2-700, Baltimore, MD, 21205, USA

    David L. Roth, Orla C. Sheehan, Jin Huang, Marcela D. Blinka & Jeremy D. Walston

  2. School of Aging Studies, University of South Florida, Tampa, FL, 33620, USA

    William E. Haley

  3. Department of Biostatistics, School of Public Health, University of Alabama at Birmingham, Birmingham, AL, 35294, USA

    J. David Rhodes & Ya Yuan

  4. Department of Epidemiology, School of Public Health, University of Alabama at Birmingham, Birmingham, AL, 35294, USA

    Marguerite R. Irvin & Virginia J. Howard

  5. Department of Pathology & Laboratory Medicine, Larner College of Medicine, University of Vermont, Burlington, VT, 05401, USA

    Nancy Jenny, Peter Durda & Mary Cushman

Authors
  1. David L. Roth
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  2. William E. Haley
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  3. J. David Rhodes
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  4. Orla C. Sheehan
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  7. Ya Yuan
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  8. Marguerite R. Irvin
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  9. Nancy Jenny
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  10. Peter Durda
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  11. Mary Cushman
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  12. Jeremy D. Walston
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  13. Virginia J. Howard
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Contributions

DLR took the lead in conceptualizing the study, designing the analyses, and drafting the entire manuscript. WEH also led in the conceptualization of the study, literature review, and the drafting portions of the introduction and discussion sections. JDR contributed to the scientific design of the study, the execution of the procedures of the study, including training and supervising the research staff who obtained verbal informed consent and conducted participant interviews, and edited the manuscript. OCS, MDB, MRI, NJ, PD, MC, JDW, and VJH all contributed to the scientific design of the study and edited the manuscript. JH and YY contributed the design of the project, the data management systems, and the analyses reported in the paper. All co-authors contributed edits or refinements to the manuscript after initial draft were produced by DLR and WEH.

Corresponding author

Correspondence to David L. Roth.

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Conflicts of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Ethical approval

The study was reviewed and approved by the Institutional Review Boards of the University of Alabama at Birmingham and each participating institution. The research procedures also conform to the principles of the Declaration of Helsinki.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Nancy Jenny: posthumous co-author.

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Roth, D.L., Haley, W.E., David Rhodes, J. et al. Transitions to family caregiving: enrolling incident caregivers and matched non-caregiving controls from a population-based study. Aging Clin Exp Res 32, 1829–1838 (2020). https://doi.org/10.1007/s40520-019-01370-9

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  • DOI: https://doi.org/10.1007/s40520-019-01370-9

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