Family Caregivers' Needs Are Often Invisible

The needs of family caregivers often go unnoticed. Family caregivers are not the “identified patients” and formal care is usually predicated on the identified needs and medical condition of the care recipient, as determined by the specialties that provide services to the care recipient. Therefore, there is often little or no routine assessment of caregivers’ well-being by healthcare or psychosocial providers, and there is little attention to problems and concerns they experience or report in their role as care providers. These circumstances persist despite the wide acknowledgement that caregivers benefit from a partnership with health care and social service agencies, and in these “family-centered” care models, caregiver input is considered essential for providing strategic and expert services for health and well-being of the care recipient and the caregiver.

Senior coupleFamily caregivers also often lack support networks or the time to access available support networks, and there is evidence that social support networks dwindle over time in many caregiving scenarios, resulting in a sense of isolation. Caregiving takes time from usual support sources, including interactions with colleagues, spouses, children, friends and task-oriented groups or clubs. Caregiver activities are also often limited by distance and mobility restrictions, and difficulties in obtaining respite care, which in turn constrains their ability to participate in traditional models of counseling and psychotherapy. Social support is also often hard to come by in work settings for many caregivers, as many feel they must minimize or hide the adverse impact of caregiving on them when at work.

Less traditional primary caregivers also often face the added stress of possible restrictions on their access to the loved ones they care for. Lesbian, gay, bisexual or transgendered (LGBT) caregivers often face barriers to participating fully when their partner or spouse is hospitalized or in residential care. Problems may arise in visitation privileges if restricted to next-of-kin or “family” as defined by the institution, inclusion in discussions with doctors or other medical staff, participation in care coordination discussions restricted to “family,” end-of-life or other critical decision-making about the patient’s care, and claiming the body of a deceased partner or spouse. Similarly, unmarried heterosexual couples, caregivers who are friends or more distant relatives who have not been previously designated as next of kin or given health care proxy rights may encounter similar restrictions, often despite years of having served as a primary caregiver for the patient.