Caregiving Caregivers in Rural Communities 1/28/2022 | By Latorius Adams Latorius Adams of the Harnett County Family Caregiver Program in North Carolina addresses specific challenges faced by caregivers in rural communities. Family caregiving is the backbone of the United States long-term care system as well as the core of what sustains frail elders and adults with disabilities, yet caregivers often make major sacrifices to help loved ones remain in their homes. However, this responsibility has deep and lasting effects – both positive and negative – on family caregivers’ lives. According to the “Caregiving in the U.S. 2020” report published by the National Alliance for Caregiving and the AARP Public Policy Institute, 53 million Americans are providing unpaid care for relatives and friends. These family caregivers live in urban, suburban, and rural areas of the country. Although many of their needs are similar, caregivers in rural communities face unique challenges – whether they are providing assistance for a parent, spouse, family member, friend or neighbor. Responsibilities and challenges of caregivers in rural communities Caregivers assume a wide variety of responsibilities for which they have not been trained (Marks et al., 2002). The most common caregiver responsibilities can be categorized as personal care, emotional support, financial assistance, and linking with formal care providers, with each category representing an array of time-consuming tasks (Stone, Cafferata, & Sangl, 1987). As an elder becomes more fragile and functionally limited over time, informal caregivers provide more direct care services such as assisting with mobility, dressing, eating, and toileting. Family caregivers are advocates. They often help research long-term care solutions, resources, and benefits; communicate with health care providers; respond to emergencies; create and update care plans; and make difficult care decisions regarding their loved ones’ health and finances. Family caregivers are also a vital source of social interaction and emotional support. Caregivers often suffer greatly from the demands of caregiving, with greater caregiver burden for those caring for people with complex chronic illnesses (Levine, Reinhard, Feinberg, Albert, & Heart, 2004). Caregiving is always challenging, but rural caregivers face even greater challenges. The U.S. Census Bureau defines rural areas as territory, population, and housing units located outside of urbanized areas (densely settled areas with a Census population of at least 50,000) and outside of urban clusters (densely settled areas with a Census population of 2,500 to 49,999), with fewer than 2,500 people or areas where people live in open country. For caregivers in rural communities, caregiving challenges are compounded by factors such as geographical isolation, gaps in rural service delivery systems, and the unique needs of agricultural workers with disabilities. For caregivers and care recipients, not only is limited access to primary and emergency health care a problem, but it is combined with limited access to other services that could be of help to both parties, including the entire array of social, volunteer, and in-home supportive services, and accessible transportation. The rural population has increased since 1950 and has been aging rapidly for several reasons, include the desire to “age-in-place,” out-migration of youth from agricultural and mining areas, and the immigration of elders from urban areas (Siegel, 1993). The majority of older adults who live in rural settings are long-term residents who benefit physically, emotionally, and spiritually from the stability and continuity of living in a close-knit, small community. Rural caregivers are likely to include a combination of: Spouses who are equally frail and impaired.Adult children who live at a distance but are “weekend” caregivers for their elderly parents.Neighbors or friends who live at a distance and have their own health problems.Specific obstacles for rural caregivers Several barriers can prevent rural caregivers from using supportive care resources. For example, rural communities may be limited in fiscal resources and infrastructure and thus be less likely to offer supportive care services compared to urban or suburban communities. Access to health care may also be limited in rural settings, forcing caregivers to travel greater distances or forgo needed services. Rural caregivers also face extremes in weather that may not allow them to travel even short distances until conditions change. Unsafe weather conditions can make country roads inaccessible by ambulances, too. Complicating matters, 75 percent of rural caregivers live separately from the patient, exacerbating travel challenges. Residing in rural settings may also lead to difficulty accessing help from family and friends who do not live nearby (Nightingale, 2017). In addition, the more remote the area, the less likely the nearest doctor will be specialized in geriatric care. In addition, many rural caregiver support and service delivery organizations and systems rely heavily on the internet to provide information and assistance, but this can cause its own set of problems. In rural areas, lack of access to broadband connections, comfort level with using computers, and limited access to computers is a barrier to communication and care. Finally, rural caregivers may have attitudes and beliefs that prevent them from seeking supportive care services. Examples include perceiving stigma or feeling guilt for seeking help and receiving services, valuing self-reliance, and reluctance to seek help when not in crisis. Similarly, rural caregivers may also believe that family members should be responsible for their loved ones’ care. This culture makes communities resilient, strong, and tight knit. On resources for caregivers in rural communities As a Family Caregiver Support Specialist, I work to provide caregivers with proper training, knowledge of resources available to them in their areas, and tools for managing difficult behaviors or their own stress. Such tools are critical to supporting their journey as caregivers and their personal mental and physical health. Because of their multifaceted roles, family and informal caregivers need a range of support services to remain healthy and improve their caregiving role. Based on the diverse needs of rural caregivers and the characteristics of their social networks, providing successful caregiver support and training programs will include information, assistance, counseling, respite, home modifications or assistive devices, caregiver and family counseling, and support groups. Many services are available through local government agencies, service organizations, or faith-based organizations. Employers’ programs can also mitigate the impact that caregiving has on workers. In North Carolina, for example, all counties offer a Family Caregiver Support Program. This program was established nationally in November 2000 under the Older Americans Act of 1965 to help support family members caring for an aging loved one. While each county is a bit different, the Harnett County Family Caregiver Support Program provides information about available services, assistance-gaining access to services, caregiver trainings, respite care, and supplemental services. Resources For more information about the Harnett County Family Caregiver Program and resources, contact Latorius Adams, Family Caregiver Support Program Coordinator at (910) 814-6075 or visit the Division on Aging website.Seniors Guide connections to local resources. National caregiver resources. Notes Siegel, J. S. (1993). A generation of change: A profile of America’s older population. New York: Russell Sage Foundation.Nightingale, Chandylen. “Rural Caregiving in the United States.” CADCA, 16 Nov. 2017, https://www.cadca.org/blog/rural-caregiving-united-states.Stone, R., Cafferata, G.L., & Sangl, J. (1987). Caregivers of the frail elderly: a national profile. The Gerontologist, 27(5), 616-626.Levine, C., Reinhard, S. C., Feinberg, L. F., Albert, S., & Hart, A. (2004). Family caregivers on the job: moving beyond ADLs and IADLs. Generations 27(4), 17-23. Read More Latorius Adams Latorius Adams, MHS acts as Family Caregiver Support Program Specialist / Medicare Counselor at the Harnett County Family Caregiver Program.