Background & Aims
The number of people caring for adult family members because of disability continues to increase worldwide, especially as populations age and the global prevalence of dementia rises (WHO, 2021; Wolff et al., 2018). Many caregivers are older adults themselves, and caregiving is associated with poorer physical health in this population. Studies in Europe and the U.S. suggest that caregivers are more likely to experience pain than non-caregivers (Barbosa et al., 2021; Jackson et al., 2022) with certain caregivers (e.g., those providing more hours of care per day) especially likely to have pain (Parker et al., 2022). However, existing studies used cross-sectional designs, and there is limited longitudinal research examining how caregiving is associated with pain over time. Accordingly, we utilized longitudinal data to compare caregivers’ and non-caregivers’ pain over a 5-year period. We also analyzed how caregiving dynamics (e.g., hours of care per day) were associated with pain over time.
Methods
We analyzed data from 2,644 older adults who participated in the most recent two waves (2010-2011 and 2015-2016) of the United States’ National Social Life, Health, and Aging Project. We used logistic regression models to calculate the odds that caregivers (versus non-caregivers) at baseline would report having any pain at follow-up. Among participants who reported pain, we used analysis of variance (ANOVA) models to compare mean differences in self-reported pain intensity (i.e., pain level in the past 4 weeks from 0 [no pain] to 6 [most intense pain imaginable]) at follow-up between caregivers and non-caregivers. Finally, we compared pain intensity at follow-up between various types of caregivers, using regression models for continuous variables (age of care recipient, hours of care per day, days of care per week) and ANOVA models for categorical variables (dementia caregivers versus non-dementia caregivers; whether the caregiver is the primary caregiver).
Results
Participants were, on average, 72 years old, and 52% were female. 14% (n=404) were caring for an adult family member (mean age=76.94) at baseline. 72% of caregivers and 66% of non-caregivers had pain at baseline, and 76% of caregivers and 70% of non-caregivers had pain at follow-up. Caregivers and non-caregivers were equally likely to report having pain at baseline and at follow-up. Among participants who reported having pain, caregivers’ and non-caregivers’ pain intensity did not differ at baseline. However, compared to non-caregivers, caregivers reported greater pain intensity at follow-up (estimate=0.19; p=0.03). Among caregivers with pain, more hours of care per day (estimate=0.15; p<.001) and more care days per week (estimate=0.05; p<.001) were both associated with higher pain intensity at follow-up. There were no differences in follow-up pain intensity between dementia caregivers and non-dementia caregivers, nor between primary caregivers and non-primary caregivers.
Conclusions
Worldwide, family caregivers are being relied on as primary supporters of an increasingly aging population. The evidence that caregiving negatively impacts caregivers’ physical and mental health is strong (Bom et al., 2019), and this study adds to that literature by identifying pain as a possible physical health consequence of caregiving. Caregivers should be considered a high-risk population for pain and a priority population for pain management interventions. Further research on caregivers’ pain is urgent, and the avenues are numerous. For example, researchers should identify the incidence of caregivers’ new pain conditions after the onset of caregiving, consider how caregivers’ pain impacts their ability to perform care tasks and meet care recipient needs, analyze how caregivers’ cope with their pain, and given population aging is a global phenomenon, characterize the scope of the problem of caregiver pain and its consequences for caregiving internationally.
References
Barbosa, F., Delerue Matos, A., Voss, G., & Costa, P. (2021). Spousal care and pain among the population aged 65 years and older: A European analysis. Frontiers in Medicine, 8. https://doi.org/10.3389/fmed.2021.602276
Bom, J., Bakx, P., Schut, F., & van Doorslaer, E. (2019). The impact of informal caregiving for older adults on the health of various types of caregivers: A systematic review. The Gerontologist, 59(5), e629-e642. https://doi.org/10.1093/geront/gny137
Jackson, E. M., Omura, J. D., Boring, M. A., Odom, E. L., Foster, A. L., Olivari, B. S., McGuire, L. C., & Croft, J. B. (2022). Prevalence and characteristics of arthritis among caregivers—17 states, 2017 and 2019. Morbidity and Mortality Weekly Report, 71(44), 1389-1395. https://doi.org/10.15585/mmwr.mm7144a1
Parker, L. J., Fabius, C., Rivers, E., & Taylor, J. L. (2022). Is dementia-specific caregiving compared with non-dementia caregiving associated with physical difficulty among caregivers for community-dwelling adults? Journal of Applied Gerontology, 41(4), 1074-1080. https://doi.org/10.1177/07334648211014352
Wolff, J. L., Mulcahy, J., Huang, J., Roth, D. L., Covinsky, K., & Kasper, J. D. (2018). Family caregivers of older adults, 1999–2015: Trends in characteristics, circumstances, and role-related appraisal. The Gerontologist, 58(6), 1021-1032. https://doi.org/10.1093/geront/gnx093
World Health Organization (WHO). (2021). Global status report on the public health response to dementia. https://iris.who.int/bitstream/handle/10665/344701/9789240033245-eng.pdf