Introduction
As the hidden support to our healthcare system, informal caregivers, specifically those who care for a spouse, parent, or other adult relative, make up an estimated 53 million adults in the United States[1]. Informal caregivers assist those with chronic or long-term illness, cognitive impairments, functional limitations, and other disabilities by providing unpaid care, most often to family members. Informal caregivers do not have formal training as healthcare providers and they often provide 20 hours of care a week or more, even and most often while working full-time or part-time jobs[2]. Their duties range from healthcare tasks, such as consulting with physicians or specialists about care needs, administering medications and performing complex medical tasks, as well as lifting and maneuvering the patient. They also help with administrative tasks, such as coordinating with health and human service agencies, managing finances and paperwork, but they also support the patient in other ways, such as by helping them navigate healthcare decisions and provide emotional comfort. In her interview[3] from the Southern Oral History Project, Heather Troutman describes the challenges of the role her father held as her mother’s primary caregiver while she was on chemotherapy for leukemia. She comments on the often-unseen role that the caregiver takes on, especially in her father’s case, but she primarily focuses on the mental and emotional struggles that he dealt with.
“Her[Mom’s] frustration with having leukemia and the limitations caused by the leukemia at times must have made her very difficult to live with. It was my dad who had to cope with the day-to-day rigors of helping support my mom emotionally.”
In rural areas, these demands for caregivers, both physical and emotional, are particularly exacerbated due to factors such as decreased social support, geographic isolation, and lack of health resources for both the caregiver and care recipient. These increased demands and stressors, along with higher reported levels of caregiver strain, show potential for a heightened, long-term detrimental health impact on the caregiver both physically and mentally in rural communities.
Effects of caregiving on psychological and physical health
Caregiving has been linked to detrimental health effects, both mental and physical. Due to the demands of caregiving, the caregivers often experience symptoms of chronic stress, which leads to negative health consequences[4] such as hypertension, increased inflammation that limits immune response, and an increase in unhealthy behaviors. One study[5] examining 38 studies over a 23-year period found that caregivers had a 23% higher level of stress hormones and a 15% lower level of antibody responses than non-caregivers. Another meta-analysis[6] with findings from 30 articles found an increased rate of other physical indicators of chronic stress, such as a compromised immune system and increased inflammation. Other mental health effects are also seen in higher rates in caregivers, with another study[7] analyzing the psychological and physical health between caregivers and non-caregivers finding an elevated rate of mental health symptoms such as higher rates of depression, anxiety, and stress, as well as poorer feelings of general well-being in a comparison between caregivers and non-caregivers.
Lack of social support in rural areas
For caregivers, social support is an important method to ameliorate feelings of burnout, help manage emotional stressors, and get physical or logistical assistance. Yet, due to lower population density and geographical separation, social isolation is de facto to rural areas[8]. In her interview[9] from the Southern Oral History Project, Karen Williamson compares urban caretaking to caregiving for her mother in a rural area and its challenges.
“If I could just pick this up and move it to rural but citified Yanceyville, that would take a lot of stress off of me because then I would know that her friends would come and see her more frequently. Now… [it’s] not as frequently because of the distance.”
Karen also mentions the lack of support from family due to their geographical distance. This lack of social support has long-term effects on both the caregiver and care recipient. University of Minnesota’s Rural Health Research Center[10] found that social isolation affects mental health, general health and well-being, diminished access to basic resources, and quality of life. Other research[11] supports the idea that that rural caregivers face higher strain due to a lack of social support. Caregivers already face increased health consequences, but compounded with these effects, rural populations are even more susceptible to mental illness and psychiatric morbidity[12].
Health resource limitations in rural areas and its impact on caregivers
Health resource limitations increase the physical and mental load for caregivers in rural areas. Factors such as lack of nursing homes, long-term care facilities, and rehabilitation clinics within a geographical area can result in an increased demand at home, due to inability to offset one’s caregiving duties. In particular, decreased funding in rural healthcare leads to poorer quality of nursing home care. One study[13] comparing varying aspects of nursing homes across the United States found that rural facilities had smaller staff-to-patient ratios and were less likely to offer specialized services such as Alzheimer’s units. Other research found that in rural nursing homes and long-term care facilities, on average their nurses had fewer years of training. Some of these factors make the choice to move a relative to a nursing home or long-term care facility challenging. Karen Williamson, a woman who moved to Yanceyville, North Carolina to take care of her elderly mother, decided to take care of her mom on her own after a poor experience at the nursing home in the area.
“Because it takes a lot to make her mad. I mean, it takes a lot. And so when she’s upset, I know that she has reached her limit and in a period of 90 days, for her to be that upset … I’m not saying that all the people that are there are bad. I just cannot deal with elder abuse, I cannot deal with the dismissiveness.”
These negative experiences are often due to limited allocation of health resources and staffing in these facilities. As a result, caregivers like Karen are forced to provide full-time care to support the well being of their care recipient.
Particular effects on dementia caregivers and impact during COVID-19
Such forms of increased care intensity and workload are associated[14] with increased symptoms of emotional stress, such as higher levels of anxiety and depressive symptoms. For those caring for recipients with Alzheimer’s and dementia, those who typically necessitate a higher degree of care, lack of long-term care resources has a particularly detrimental effect. Dementia caregivers must also manage problematic patient behaviors such as apathy, depression, aggression, agitation, delusion, and irritability. These are some of the strongest predictors for caregiver strain[15] as well as nursing home placement, which is again limited in rural areas. In particular, the COVID-19 pandemic has exacerbated many of these effects on caregivers. This is due to a variety factors, such as from the social isolation from quarantine, fear and anxiety surrounding the disease itself, and the inability to utilize healthcare resources due to hospital and clinic overload. Older populations were especially affected due to their disproportionate vulnerability to COVID-19[16]. In her oral interview[17], Martha Hutt describes some of these effects on her role not only as a caretaker for her elderly husband with dementia, but as one during the pandemic.
“I was not allowed to go see him… But with the masking and then the shield, my husband was almost totally deaf… And he didn’t understand why—what was going on.”
Increased isolation, in already socially isolated rural areas, compounded with limited health resources heightens stress levels for caregivers like Martha during the pandemic.
Conclusion and future impact
The number of persons aged 85 and older is expected to triple by 2050 and reach a height of 18 million, according to the United States Census Bureau[18]. As a result, there will likely be an increase in the number of caregivers in the United States. For rural areas in particular, there has been found[19] to be an approximately one-third higher proportion of elder persons compared to urban areas, 7.4 percent and 5.6 percent respectively. Consequently, the need for informal caregivers in rural areas will increase. With the already-heightened intensity and workload for these caretakers due to diminished health resources in long-term care as well as from lack of social support due to social isolation, rural caretakers may experience especially severe health effects and consequences. In the United States, we must work to ameliorate these health effects by first recognizing this public heath issue, and then by funding expansion for health resources for caregivers in rural communities, such as by providing funding to long-term care facilities and increasing coverage for home healthcare services under insurance, especially Medicare, to offset caregiver duties.
References
[1] AARP and National Alliance for Caregiving. (2020) Caregiving in the United States 2020. Washington, DC: AARP. https://doi.org/10.26419/ppi.00103.001
[2] National Academies Press (US). (2010). Informal caregivers in the United States: prevalence, caregiver characteristics, and ability to provide care. The Role of Human Factors in Home Health Care – NCBI Bookshelf. https://www.ncbi.nlm.nih.gov/books/NBK210048/
[3] Allen, Nick. Interview with Heather Troutman. 22 June 2018 (Y-0057). Southern Oral History Program Collection (#4007), Southern Historical Collection, Wilson Library, University of North Carolina at Chapel Hill.
[4] Chronic stress puts your health at risk. (2023, August 1). Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress/art-20046037
[5] Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological bulletin, 129(6), 946–972. https://doi.org/10.1037/0033-2909.129.6.946
[6] Roth, D. L., Sheehan, O. C., Haley, W. E., Jenny, N. S., Cushman, M., & Walston, J. D. (2019). Is Family Caregiving Associated With Inflammation or Compromised Immunity? A Meta-Analysis. The Gerontologist, 59(5), e521–e534. https://doi.org/10.1093/geront/gnz015
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[8] Pickering, J., Wister, A., O’Dea, E., & Chaudhury, H. (2023). Social isolation and loneliness among older adults living in rural areas during the COVID-19 pandemic: a scoping review. BMC Geriatrics, 23(1). https://doi.org/10.1186/s12877-023-04196-3
[9] Dixon, Ina. Interview with Karen Williamson. 28 September 2018 (Y-0140). Southern Oral History Program Collection (#4007), Southern Historical Collection, Wilson Library, University of North Carolina at Chapel Hill.
[10] Henning‐Smith, C., Ecklund, A. M., Lahr, M., Evenson, A., Moscovice, I., & Kozhimannil, K. B. (2018). Policy Brief: Key Informant Perspectives on Rural Social Isolation and Loneliness. University of Minnesota Rural Health Research Center. https://experts.umn.edu/en/publications/policy-brief-key-informant-perspectives-on-rural-social-isolation
[11] Cohen, S. A., Kunicki, Z. J., Nash, C. C., Drohan, M. M., & Greaney, M. L. (2021). Rural-Urban Differences in Caregiver Burden Due to the COVID-19 Pandemic among a National Sample of Informal Caregivers. Gerontology & geriatric medicine, 7, 23337214211025124. https://doi.org/10.1177/23337214211025124
[12] Koutsampasopoulos, K., Ralli, F., Gavana, M., & Benos, A. (2008). Psychiatric morbidity and burden among caregivers: a cross sectional study in rural north Halkidiki (Greece). Annals of General Psychiatry, 7(S1). https://doi.org/10.1186/1744-859x-7-s1-s124
[13] Quigley, D. D., Estrada, L. V., Alexander, G. L., Dick, A., & Stone, P. W. (2021). Differences in Care Provided in Urban and Rural Nursing Homes in the United States: Literature Review. Journal of gerontological nursing, 47(12), 48–56. https://doi.org/10.3928/00989134-20211109-09
[14] Longacre, M. L., Valdmanis, V. G., Handorf, E. A., & Fang, C. Y. (2017). Work Impact and Emotional Stress Among Informal Caregivers for Older Adults. The journals of gerontology. Series B, Psychological sciences and social sciences, 72(3), 522–531. https://doi.org/10.1093/geronb/gbw027
[15] Hong Li , Gregory A. Kyrouac , Dennis Q. McManus , Robert E. Cranston & Susan Hughes (2012) Unmet Home Care Service Needs of Rural Older Adults With Alzheimer’s Disease: A Perspective of Informal Caregivers, Journal of Gerontological Social Work, 55:5, 409-425, DOI:10.1080/01634372.2011.650318
[16] Coronavirus Disease 2019. (n.d.). Centers for Disease Control and Prevention. https://www.cdc.gov/media/releases/2024/s-0228-covid.html
[17] Penman, Susie. Interview with Martha Hutt. 9 June 2021 (AA-0006). Southern Oral History Program Collection (#4007), Southern Historical Collection, Wilson Library, University of North Carolina at Chapel Hill.
[18] U.S. Census Bureau. (2014). An aging nation: The older population in the United States. Retrieved from https://www.census.gov/prod/2014pubs/p25-1140.pdf
[19] Phillips, C. D., Holan, S., Sherman, M., Williams, M. L., & Hawes, C. (2004). Rurality and nursing home quality: results from a national sample of nursing home admissions. American journal of public health, 94(10), 1717–1722. https://doi.org/10.2105/ajph.94.10.1717