African American families face Alzheimer's disease

“He was saying that some fellow across the street was taking gas out of his truck,” said Ann Small about her husband James Small. “I know that he [the neighbor] would never do such a thing… and then he accused someone of taking tires off of his truck. I didn’t pay much attention to it. Then after he was diagnosed, a lot of these little things come to mind.”

James Small, an African American, was diagnosed with Alzheimer’s disease in 2011. African Americans living in the United States are two to three times more likely than whites to be diagnosed with Alzheimer’s disease, according to the Alzheimer’s Association. His wife didn’t see it coming. She wondered if his personality changes—his angry outbursts—just meant that the two were spending too much time together. “Anything I’d say, he would be negative about it,” she said. “Every day it was something new.”

The couple’s daughter described her father as a handyman, yet routine home improvement projects took him hours. Another time he became confused while driving on the highway and wanted to stop the car. She ended up receiving the task of taking him to a neurologist, who made the diagnosis. While someone can live with Alzheimer’s disease an average of 8 to 10 years, and up to 20 years in some cases, the disease is ultimately fatal, and there is no cure.

African American community and Alzheimer's disease: This is the first in a series of articles focusing on Alzheimer's disease in the African American community. James and Ann Small and Juanita and Chuck Williams are African Americans who have shared their stories about their personal journeys with Alzheimer’s disease. Andrea Parrott researched and wrote this series as part of a fellowship MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America.

Juanita Williams said she screamed and cried alone in her car for over 10 minutes after learning that her husband Chuck Williams, a professor, had early-onset Alzheimer’s disease. In the doctor’s office, she said her husband slumped forward as though a weight had come upon him. She was strong for him then, but broke down as she rode alone to pick up his prescription. Now nine years later, Williams continues to care for her husband as he nears the advanced stages of the disease. “I’m not in denial. It’s getting worse for him,” she said, “and I think he needs so much more help.” She has begun to consider assisted living or long-term care.

Dangerous Silence

“People aren’t comfortable about telling people about it because they feel embarrassed, and they don’t understand it. That’s their business,” said Dorothea Harris, licensed social worker. Harris heads the Family Memory Care for African Americans program at Volunteers of America-Minnesota.

Alzheimer’s disease is a progressive disease of the brain and results in memory loss as well as personality and behavior changes in those afflicted. In the end stages of the disease, sufferers have difficulty swallowing and may be unable to control movement. According to the National Institute on Aging, about 5.1 million people in the United States have Alzheimer’s disease. It is the most common form of dementia. In Minnesota, the Alzheimer’s Association estimates that 110,000 people who are 65 years old or older will have the disease by the year 2025.

“As a black community, we don’t want to talk about it,” said Ann Small about Alzheimer’s disease. James Small has diabetes and his mother had dementia, two factors that increase the risk for Alzheimer’s disease or other forms of dementia. Chuck Williams also has diabetes. African Americans have higher rates of vascular diseases, such as high blood pressure, high cholesterol, and diabetes. About 44 percent of African Americans have high blood pressure, one of the highest rates in the world, according to an American Heart Association 2011 statistics report. Vascular diseases and Alzheimer’s disease may have common risk factors.

Combating the disease includes increasing awareness and education about Alzheimer’s disease among African Americans. “What’s needed first is education after they come out of denial,” said Ellen Johnson, senior aide at Volunteers for America. She works with Dorothea Harris and commented on the needs of families. Johnson continued, “Most people don’t know what it is. They don‘t know why the person is doing what they’re doing.”

Early diagnosis is important because medication more effectively manages symptoms and prolongs life during the early stages of Alzheimer’s disease. Yet many African Americans do not become diagnosed until the later stages of the disease. Juanita Williams knew something was wrong with her husband. She described him as intelligent and so responsible, but he began to behave irresponsibly. He refused to go to the doctor until she gave him an ultimatum: either go to the doctor or get out. He chose to go to the doctor.

Chuck Williams had a brother, on the other hand, who also exhibited symptoms in his early sixties, but did not obtain a diagnosis until the disease had progressed into the middle stages. The family just thought he had a kooky personality, Juanita Williams said, until he became lost and had two accidents. Early-onset Alzheimer’s disease is uncommon, but has genetic links and tends to run in families.

Post Diagnosis: What’s next?

A diagnosis of Alzheimer’s disease does not necessarily mean immediate, drastic life changes, but there are ways for families to prepare and plan for the future stages. There are several organizations in the Twin Cities that provide resources for families, caregivers, and people experiencing memory loss. Organizations such as the Volunteers of America, Alzheimer’s Association and the Wilder Foundation connect families with resources and help them navigate the journey ahead. The Alzheimer’s Association has a webpage for African Americans explaining Alzheimer’s disease and the 10 warning signs.