Informal caregivers, often family members, are responsible for the home care of about 22 million older adults in the United States (National Institute for Nursing Research [NINR], 2002). One third of informal caregiving occurs at a distance with family members coordinating provision of care, maintenance of independence, and socialization for frail elders living at home.
Caregivers live, on average, 450 miles from care recipients and spend about 7 hours traveling to reach the elder. Distance caregivers report an average of 35 to 41 hours per month providing care and lose 15 million work days annually to perform care ("Miles Away," 2002). Distance caregiving, compared to on-site caregiving, includes additional responsibilities, and roles become more complex when elders are physically or cognitively impaired.
Unfamiliarity with local and state regulations makes the task more difficult. It may be difficult to locate assistance to navigate the healthcare system, or to know which local providers to consult about care issues. While needs of distance caregivers may be similar to those living near the elder, the extent to which geographical distance between family members and elders affects caregiving remains largely unknown.
Interventions have been developed to modify stress and role strain of on-site caregivers. Research suggests these interventions may achieve only moderate success due to limited information from the caregiver about the actual, real-world relevance of the interventions. Therefore, a crucial first step is to have distance caregivers identify, in their own words, the concerns, needs, and perspectives of providing care. We can advocate for distance caregivers in the following ways:
* Support research to identify the caregiving needs of distance caregivers. We must recognize the nature and characteristics of caregiving: staying connected with the elder, addressing concerns about safety and physical health, and dealing with functional decline.
* Champion the exploration of interventions to assist the distance family caregiver and the elder living at home. Although technology-based interventions hold great promise interventions must be developed that make meaningful differences.
* Best practices emerge when multiple disciplines work together. Nurses, physicians, gerontologists, social workers, therapists, bioengineers, and consumers should be included in these research and policy discussions.
* Inform legislators and decision makers of the role professional home care nurses can play in addressing the concerns of distant caregivers and elders.
In 2001, NINR identified a need to address caregiving issues including chronic illness, aging, technology-dependence, cognitive impairment, and caregiver support systems. The workgroup recommended research to better understand generic caregiver knowledge, skills, and support, including "caregiver needs related to sorting through options and then making decisions on behalf of their family members and themselves." Home care nurses are perfectly positioned to champion this cause.
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