James McNally of the Inter-university Consortium for Political and Social Research, part of the U-M Institute for Social Research (ISR), found significant variations in the emotional reactions of blacks, whites, and Hispanics to both caring for and grieving for Alzheimer’s patients. McNally presented his research at a meeting of the Alzheimer’s Association’s International Conference on Alzheimer’s Disease in Honolulu.
The findings could point to improvements in support services for caregivers of Alzheimer’s patients.
“For those caring for a family member with Alzheimer’s, the process of bereavement often begins long before the family member’s physical death,” McNally said.
“These results bring into sharper focus some distinct social and cultural responses to the bereavement process, and help increase our understanding of the emotional costs of Alzheimer’s. This understanding can help to inform and improve culturally competent resources to help caregivers not only throughout all stages of their loved one’s illness, but also in finding a healthy resolution to grieving.”
Considerable research has looked at how responses to deaths from Alzheimer’s vary by gender of the caregiver and relationship to the care receiver, but less work has looked at differences between ethnic groups. McNally’s research examined data from the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) project lead by Richard Schulz of the University of Pittsburgh’s Institute on Aging.
The Bereavement Component of REACH studied more than 600 caregivers in three racial/ethnic groups: Blacks, whites, and Hispanics. McNally found marked differences across these groups in a number of measures, including expressions of relief, anger and emotional acceptance.
Whites and Hispanics, for example, are three to five times more likely than blacks to report a sense of emotional relief at the death of the Alzheimer’s sufferer.
McNally said that fits with existing research that shows blacks have more stressors in their lives than other racial groups. Whereas white and Hispanics tend to find some sense of relief after caregiving duties end, blacks have no such respite. “Blacks are not getting a break,” he said.
McNally emphasized that his research does not predict any individual reactions to Alzheimer’s, but instead presents big-picture trends.
Other findings of the study show that whites are twice as likely to report emotional acceptance at the death as blacks and Hispanics.
Also, Hispanic caregivers were only half as likely as blacks to report feelings of anger toward the deceased. But white caregivers were considerably more likely to report anger than the other two groups.
McNally said Hispanics’ lack of anger and difficulty accepting the loss of a loved one points to the tight support network often found in Hispanic families.
“Those findings are fairly consistent with the existing research on family support,” he said.
Factors such as relationship to the Alzheimer’s patient, the emotional and physical health of the caregiver, and sociodemographic background moderated those differences, but variance still remained between ethnic and racial groups.
These results can inform the support services offered for Alzheimer’s caregivers, McNally said. For example, blacks may need to address the ongoing other stressors in their lives, but Hispanics could need to focus on separation issues with the deceased.
“If you’re thinking about support services, you want to come at it in different ways,” McNally said.
The REACH study was established in 1995 through a multi-institution grant from the National Institutes on Aging. Data was collected at by six institutions: University of Alabama – Birmingham; the Research and Training Institute of the Hebrew Rehabilitation Center for Aged in Boston; University of Tennessee – Memphis; University of Miami; Veterans Affairs Palo Alto Health Care System and Stanford University; and Thomas Jefferson University in Philadelphia.
A second wave, REACH II, was completed between 2001-2004.
McNally’s research used REACH II in order to include caregivers that have been tracked over a longer period of time and to access data specifically on bereavement.