By Laura L. Otto
The early signs of Alzheimer’s disease are often subtle, such as when a grandparent’s family recipes start to taste a bit different. Many families don’t seek medical help for their loved ones until these small changes give way to bigger problems.
But paying attention to such changes is important, especially for African American and Latino families, who tend to be hit particularly hard by dementia. Research has indicated that Alzheimer’s disease strikes African Americans twice as often as whites, and the disease occurs 1.5 times more often in Latinos than whites.
“In these communities, in-home caregiving of a family member with dementia lasts longer for a variety of reasons, including access to care,” says Melinda Kavanaugh, a UWM associate professor of social welfare.
With support from the National Institute on Aging, Kavanaugh and several community partners are launching a two-year project that will help African American and Latino families better avert “crisis points.” These are potentially dangerous incidents involving someone with dementia, such as leaving the stove unattended or getting lost outside the home.
Sometimes, even these kinds of incidents pass without registering as something serious. “You can see a family that is in crisis,” Kavanaugh says. “They may not recognize it because, to them, it’s normal.”
The project’s aim is to collect representative examples of the early indicators of advancing memory loss.
The goal: head off disaster by providing this information to families and health care providers of people who haven’t yet reached a crisis point. This advanced notice gives families of patients more time to plan needed care, Kavanaugh says.
The researchers will consult with professional caregivers, social workers and family members – including the youth who often care for affected family members after school while parents are still at work. Their observations have not been integrated in previous work.
More than 1.4 million children and teens in the United States provide care to a family member. These youth assist with everything from bathing and feeding to administering medications and monitoring activities to ensure safety. And youth may be more tuned-in to changes in family members because the period of care between school ending and parents returning from work is often a regular routine.
The project came about through longstanding relationships Kavanaugh has with community groups, such as the United Community Center, the Alzheimer’s Association and the Milwaukee County Department on Aging. These organizations, Kavanaugh says, bring a focus on the project’s cultural aspects.
For example, many people in minority communities are reluctant to seek a diagnosis for fear of the stigma. For many African Americans, engaging with medical practitioners is fraught with distrust. And language can be a barrier for Latinos.
“From this study, we’ll have details of how we can intervene earlier in populations that already are not getting the care they need,” Kavanaugh says.
Virginia Zerpa, community outreach coordinator for the Alzheimer’s Association’s Southeastern Wisconsin chapter, says Latino and African American families are less likely to recognize the signs of Alzheimer’s and dementia than white families. This results in a diagnosis not being made until the disease’s later stages.
One reason families don’t seek outside help, Zerpa says, is that they may not know help is available. Most Latin American countries do not have the kind of assistance for the elderly that exists in the United States. Another reason may be privacy-related, Zerpa says, with people tending to rely on their own family members for assistance.
“Because of this,” Kavanaugh says, “it’s important to develop focused, early interventions that are culturally relevant that would be supportive for families.”