Frail Elders and Nursing Family Care
Family Caregiving to Frail Elders
Family caregiving to frail elders refers to the informal caretaking by immediate and extended family of older adults needing assistance due to physical or cognitive impairments.
Family caregiving is an important concept for nurses because many older adults will receive some help with activities of daily living and/or in-home care for acute or chronic health problems, including end-of-life care. Such care is frequently provided informally by family members and supplemented by formal care arrangements.
The family caregiver does not always live in the
same home as the care recipient, and although there is no minimum amount of
time that family must provide care to be considered family caregivers, many
researchers use 5 hours of care per week as a criterion.
Caregiving and Role of Female
Women are more likely to assume the role of family caregiver to elders, in part due to their traditional caregiving roles in families. Balancing competing responsibilities as a caregiver, employee, spouse, parent, and family and community member is a challenge often faced by midlife women.
At what point in one's life caregiving occurs may influence the effects of caregiving (Moen, Robison, & Dempster-McClain, 1995). Some studies suggest that initiating caregiving is especially stressful because it requires many adaptations, but that continued caregiving may be viewed as less difficult as it becomes more routine.
Family caregivers often report both burden and reward from the caregiving experience. Whether adult children experience more burden than do spouses is not conclusive.
There appear to be ethnic differences in burden from
caregiving, with minority caregivers likely to report less burden. Instrumental
support from other family members has been associated with less burden.
Care Giving and Impact on Whole Family
Family caregiving affects the entire family, regardless of whether the caregiver and care recipient live in the same home. Caregiving requires an investment of resources (time, energy, money) that are diverted from other activities.
In one study of caregivers of frail elders ( Covinsky et al., 2001), 22% of caregivers either quit a job or reduce work hours. Minority care recipients and those with lower ADL function, dementia, or a history of stroke were more likely to have family who reduced or quit work; daughters and daughters-in-law of the elder were likely to quit working ( Covinsky et al.).
Minority caregivers were more likely to care for frail elders at home (Cagney & Agree, 1999). Maintaining the health of family caregivers is a priority, and caregiver health has been the focus of considerable research.
Caregivers are often older adults themselves (spouses, siblings, or friends of the care recipient), prone to muscle and back injuries from lifting and other activities, and may neglect their own health in the process of care giving. Many studies examining the health of older adults have been cross sectional, and thus evidence about the long-term consequences of care-giving is scanty.
In general, caregivers who report greater stress and burden and less ma stery tend to report worse health, more health problems, and more depressive symptoms. Most studies have used self-report rather than objective or direct measures.
Few studies have followed caregivers after they cease caregiving, although the Canadian Study of Health and Aging Working Group (2002) found that caregivers to healthy elders reported fewer health problems than caregivers to impaired elders, but that death or institutionalization of the elder did not have a consistent impact on caregiver health.
Understanding of the consequences of caregiving is complicated by the
need to disentangle the effects of caregiver aging from any effects of
caregiving burden or activity.
Paid or Support Service as Care
In many situations, formal, paid support services (meal service, home health, respite care) supplement the family's caregiving efforts.
Such formal assistance often is associated with less caregiver depression and better self-assessed health, although one longitudinal study ( Musil , Morris, Warner, & Sacid , 2003) found that an increase in formal support over 2 years was associated with worsening ing self-assessed but better muscular-skeletal health.
Caregivers may seek outside support from formal services if they need to compensate for their own deficits, but lack of help may cause wear and tear from the physical burdens of caregiving.
Current research is examining ethnic differences in the use of services, including formal care and respite services, little is known about how the support from the care recipient's health care provider (nurse practitioner, physician) affects family caregiving, although provider support has been shown to influence the perceived rewards of caregiving ( Musil et al., 2003).
An emerging area of interest involves the
types of provider interactions that are viewed as supportive by caregivers, or
at what points in the caregiving trajectory various interactions are viewed as
beneficial by family caregivers.
Patient Discharge Plan and Family Role
Family caregivers to frail elders participate in caregiving not only in-home, but across transitions to other facilities, including hospitals, nursing homes, long-term care, and hospice.
Involvement in discharge planning is important for the caregiver and care recipient well-being; caregivers who were more involved in discharge planning for their elder care recipient reported better health and greater acceptance of their caregiving role 2 months post discharge (Bull, Hansen, & Gross, 2000).
Recent trends include predicting when families will seek nursing home placement. Coordination of care between informal and formal caregivers with nurse and physician providers is advocated in the literature but often difficult to achieve in practice.
A number of recent studies have looked at interventions to support caregivers' work, maintain or improve caregiver health, or increase caregiver knowledge of the care recipient's disease processes. Intervention studies have examined the effects of support groups, telephone support, computer support, and RN and Advanced Practice Nurse interventions ( Dellasega & Zerbe, 2002).
In a meta-analysis of 26 intervention studies, Yin, Zhou, and Bashford (2002) found positive effects for group and individual interventions to reduce caregiver burden. Another line of intervention research focuses on interventions to assist caregivers in their daily care of impaired elders.
Interventions focus on caregiver activities, such as toileting and feeding impaired elders; maintaining care recipient nutritional status, mobility, and skin integrity; dealing with confusion, verbal outbursts, wandering, and falls; and participation in adult day-care situations.
Increasingly, current research examines family caregiving from different cultural perspectives, including international comparisons of burden, stress, coping, and support. In addition, ethnographic methods illuminate similarities, differences, and the nuances of family caregiving within cultural groups.
Such research is increasingly important. Other directions for future family caregiver research include the need for longitudinal perspectives and mixed method designs incorporating qualitative and quantitative methods to better describe aspects of the family caregiving experience, including gender differences in caregiving.
Additional work with interventions aimed at the
caregiver and at the care recipient is needed.
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