Methods: This study is based on two years of workplace observations, interviews with clinical staff (geriatric and palliative teams) and 50 family caregivers of elderly patients who were patients of one of two rehabilitation facilities in the northeastern United States.

Findings: Two-thirds of the caregivers were women, most of the patients were also female, 70% of caregivers were in their forties and fifties, and 50% were employed either part time or full time. The authors found that there were a wide range of tasks family caregivers performed, including record keeping, managing and coordinating care, providing emergency care and advocating for their loved ones. Often these caregivers were untrained and unsupported in these roles. This sometimes led to a situation in which family caregivers felt they had significant responsibility for a loved one's health, but not the information and skills to do all they are expected to do. Furthermore, the family caregivers perform an integrative function by providing crossinstitutional links between formal health care intuitions and the community. The need for family caregivers to take on a number of these roles points to the extent of the problems within geriatric care, especially in regard to the continuity in care, the lack of shared medical records amongst providers, difficulties in patients getting sufficient health information, and in contacting people for services.

Conclusions: The amount and breadth of work family caregivers are providing is much greater than is usually recognized. In particular, the level of work they do within the delivery of health care is often overlooked. The range of services being provided for by family caregivers is becoming an essential part of the geriatric care system; and this fact needs to be considered when developing new geriatric care policies. There also needs to be greater support and training for family caregivers so that they are better able to perform all of the tasks the health care system is leaving for them to perform. Respite programs and support groups, expanded training, and flexible work and leave policies may assist and support family caregivers in their important role.

Reference: Bookman A, Harrington M. Caregivers: A shadow workforce in the geriatric health care system. Journal of Health Politics, Policy & Law. 2007; 32(6): 1005-1041.

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