MINNEAPOLIS, Minn. – "He was saying that some fellow across the street was taking gas out of his truck," said Ann Small about her husband James. "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, who is 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 the disease, according to the Alzheimer's Association.
She didn't see it coming
Small's wife didn't see it coming. She wondered if the changes in his personality – his angry outbursts – just meant that the two were spending too much time together.
"Anything I'd say, he would be negative about it," Small remembered. "Every day it was something new."
The couple's daughter described her father as a handyman around their house, yet routine home improvement projects started taking 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.
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.
"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, a licensed social worker.
Harris heads the Family Memory Care for African program at Volunteers of America-Minnesota.
Alzheimer's 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, 5.1 million people in the United States have Alzheimer's, the most common form of dementia. In Minnesota, the Alzheimer's Association estimates that 110,000 people ages 65 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. Her husband has diabetes and his mother had dementia, two factors that increase the risk for Alzheimer's or other forms of dementia.
Chuck Williams also has diabetes. African Americans also have higher rates of vascular diseases, such as high blood pressure and high cholesterol. About 44 percent of African Americans ages 20 or more have high blood pressure, one of the highest levels in the world, according to an American Heart Association 2011 statistics report. Cardiovascular diseases and Alzheimer's disease may have common risk factors.
Education to combat denial
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.
Johnson, who works with Dorothea Harris, said, "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 some of the limited medication available can help some patients more effectively manage symptoms and during the initial stages of Alzheimer's. Yet many African Americans do not become diagnosed until the later stages of the disease.
Juanita Williams, for instance, knew something was wrong with her husband. She described him as intelligent and very responsible, but he began to behave irresponsibly. He refused to see 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 60s, but he was not diagnosed until the disease had progressed to the middle stages.
The family just thought he had a kooky personality, Juanita said, until he became lost and had two accidents. Early-onset Alzheimer's disease, which affects people before age 50, is uncommon, but it 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.
On May 15, the U.S. Department of Health and Human Services released its National Plan to Address Alzheimer's Disease, which includes among its goals strategies to support families and caregivers of those with Alzheimer's disease and to address ethnic and racial health disparities.
Additionally, the Alzheimer's Association has a webpage for African Americans (www.alz.org/ africanamerican) explaining Alzheimer's disease and the 10 warning signs. They also provide information for caregivers, such as the support group, and Alzheimer's helpline (1-800-272-3900).
In addition, those new to family caregiving will find useful information at www.WhatIsACaregiver.org.
(Andrea Parrott wrote this story as part of a MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America.)