FCRP Policy Statement

Information provided by recent studies on arrangements of care and division of labor among primary and secondary family caregivers for patients with physical or mental impairments, such as Alzheimer's disease, is largely based on data from white families. In a recent study, 112 African-American and 112 Caucasian families involved in a family caregiving situation were compared. All of the patients and family caregivers involved in the study met the following criteria: same medical diagnosis and the same number of self-care dependencies (e.g., eating, dressing, bathing, etc.). Seventeen percent of the study participants were diagnosed with Alzheimer's Disease or dementia, 61% were diagnosed with physical disabilities, such as need for help in getting in or out of bed, urinary incontinence, etc., and 21% were diagnosed with cancer. (Diagnoses were reported with equal distribution for African-American and Caucasian participants).

The goal of the study was to determine whether or not the division of labor between primary and secondary caregivers shows distinctly different patterns for African-American and Caucasian caregivers who face the same caregiving tasks. The primary family caregiver is the main provider of care for a patient, performing care tasks including eating, dressing, bathing, toileting, grooming, walking, moving about in the home, getting in and out of bed, cleaning, and shopping. Secondary family caregivers are often other family members who provide additional help and perform some (although not the majority) of the care tasks. Specialist helpers are secondary caregivers who take over whole care tasks and are usually paid for their services (e.g., cleaning service).

Results of the study revealed that a larger percentage of Caucasian patients rely on primary family caregivers for all their care tasks, including eating, dressing, bathing, walking, transferring in and out of bed, cooking, cleaning, and shopping. Also, specialist helpers were employed 1.4 times more in Caucasian families than in African-American families. African-American patients relied twice as much on secondary family caregivers for assistance with these tasks. Specifically: 58% relied on secondary helpers for assistance with intimate care tasks (e.g., bathing), 71% relied on secondary helpers for mobility care tasks (e.g., walking), and 62% relied on secondary helpers for assistance with housework tasks (e.g., cooking, cleaning).

Policy Implications

• Families should be informed and counseled on the availability of services to assist with care in their communities.
• Health care professionals should monitor patient and family caregiver need for services throughout the illness trajectory.
• Community groups and agencies should focus on supplying support to African-American female caregivers (particularly daughters), as a much larger percent of women provide care in African-American families than in Caucasian families.
• Because of their heavy involvement in providing care, informational classes, support programs, and booklets should be designed specifically to meet the needs of African-American women.

From Stommel, M., Given, C. W., Given, B. A., & Mickus. M. (1995). Racial differences in the division of labor among primary and secondary caregivers. Paper presentation at the 48th Annual Scientific Meeting of the Gerontological Society of America, Los Angeles, CA. Research supported by grant #RO1 AG06584, "Caregiver Responses to Managing Elderly Patients at Home"; grant #PBR-32ABC, "Family Homecare for Cancer Patients"; grant #RO1 NR01915, "Family Homecare for Cancer -- A Community-Based Model"; grants #RO1 MH41766 and RO1 MH41766-03, "Impact of Alzheimer's Disease on Family Caregivers."