Understanding How Black Communities View Dementia

In 2002, the Alzheimer's Association commented upon a "silent epidemic" of dementia within America's black community. Black people are not well represented at Memory Disorder Centers or Alzheimer's Disease Centers, and there appears to be a disproportionately high rate of dementia within the black community. But little else is really well understood. Findings from a small 2005 study in Florida, however, suggest that some black communities may accept dementia as a normal part of aging and don't use medical terms to describe the condition. Also, the role of family and community has both positive and negative implications for the person with dementia.

Dementia "No Big Deal"

The author of the research, Kathleen F. Jett, an associate nursing professor at Florida Atlantic University, had initial difficulties recruiting volunteers to join her study. Many people said they were unaware of dementia, but when terminology like "problems with thinking" was used people did make a connection. More typically, terms such as "mind-slipping", "not with it", "out of their heads" were commonly used and the term "old-timers" seemed to equate to senility. Behaviors that most health professionals would recognize as symptoms of psychiatric illness -- wandering, forgetfulness, hallucinations, repetitive speech -- were considered a normal part of aging and "no big deal". Loss of mind also was considered by some as "pay back" from God for some past sin.

Jett's findings are revealing and useful. The research methods used were guided interviews, supplemented by observation and field notes of14 people. This approach provides rich and deep information but the small numbers mean the findings may not apply to all black communities.

"Your Life is My Life" - Care in the Community

The study suggested that for black people, recognizing and responding to dementia may be especially focused within family and community. Support may come from neighbors, church members, acquaintances or even community workers. Needs are often "just known" and dealt with accordingly.

Jett gives an example of someone she describes as Ms. Brown (not her real name). Ms. Brown started to get lost when she was driving and became increasingly suspicious and frightened of people. Across the street lived a distant cousin whose daughter started to make sure that Ms. Brown was eating properly and that her mail did not build up. Another neighbor spent every night sleeping at Ms. Brown's home, another took over driving and yet another kept the garden neat.

Jett points out that the most commonly held expectation is that care is a family responsibility and then the responsibility of the community. As she cites in her research, one person said, "your life is my life, I am enmeshed in you".

Gains and Losses

In the context of this small but highly focused study, the closely knit community provides an almost spontaneous network of caregiving. At one level, the notion of mind-loss as something normal and inevitable appears very accepting and perhaps reassuring as the family and community work together to provide support. But there are problems.

Jett points out that in cases where interventions were offered by professional healthcare providers they were often mistrusted. Dementia, or any of the conditions that may mimic dementia, is less likely to be recognized or treated. So in situations where a person may improve through assessment and intervention, this becomes less of an option.

If the community is not closely knit it is much less likely to recognize and respond to the needs of others. As Jett suggests, there is a need to address the fears and suspicions of blacks in different community, and to learn more about specific idioms and their meanings -- "instead of cognitive functioning, we can ask about mind slippage," Jett said.

Source:
Jett, Kathleen F. "Mind-loss in the African American community: Dementia as a normal part of aging." Journal of Aging Studies 20(2006): 1-10.