Race in the Rock River Valley: African-Americans, Hispanics more likely than whites to have Alzheimer’s disease
Mary Allen took care of people her entire life as a mother of nine children, as a minister at Washington Park Christian Church and as a social worker who counseled gang members and people living in poverty. These days, Allen relies on her children and the staff at the Rockford nursing home where she lives to help her eat, get dressed and bathe. During rare moments of clarity, she can recall names and events from her past, but her memory is quickly disappearing.
Winnebago and Boone counties mirror nationwide trend.
By Isaac Guerrero
Staff writer
ROCKFORD — Mary Allen took care of people her entire life as a mother of nine children, as a minister at Washington Park Christian Church and as a social worker who counseled gang members and people living in poverty.
These days, Allen relies on her children and the staff at the Rockford nursing home where she lives to help her eat, get dressed and bathe. Allen received the Register Star’s Excalibur Award for exemplary community service in 1989. During rare moments of clarity, she can recall names and events from her past, but her memory is quickly disappearing.
Allen is among the estimated 5.4 million Americans living with Alzheimer’s disease, the sixth leading cause of death in the nation, and the only cause of death among the top 10 that cannot be prevented, cured or slowed. It’s also typically the sixth leading cause of death in Winnebago and Boone counties and in Illinois.
Allen is of the demographic that doctors worry about most. African-Americans are twice as likely — and Hispanics are about one and one-half times more likely — than whites to have Alzheimer’s and other dementias. Blacks and Hispanics are also more likely than whites to pay more for treatment and care because they tend to receive the diagnosis later, when the disease has progressed and the cost of care is higher.
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Allen, 76, received an Alzheimer’s diagnosis five years ago, and it changed the lives of everyone around her. Her daughter Recha Sofolawe became a mother about the same time and had to give up her job as a schoolteacher to raise her own family and help her siblings care for their mother.
“We have a lot of siblings and that helps,” Sofolawe said. “But I have had to literally quit my job to understand the system, to figure out the resources we need to take care of our mother. There’s a lot of red tape. You spend hours and days figuring it all out, talking to doctors and insurance and customer service representatives and caseworkers and social services.”
Advocates for those living with dementia say more funding and more public awareness is needed to find a cure for Alzheimer’s and help those living with the disease, particularly those in minority communities who often lack access to health care or financial resources for diagnosis and treatment.
“Why these disparities with Alzheimer’s and minorities exist is a really good question, but the answers are very complex,” said Richard Apple, a social worker who counsels dementia patients and their families at the Alzheimer’s Association Greater Illinois Chapter office in Rockford.
“One reason is that access to health care or perceived access to health care is a significant issue among minorities so there’s probably less likelihood that the person is aggressively pursuing a relationship with a doctor who is going to do a thorough evaluation and assessment of their condition,” Apple said.
“I think another reason is that there simply aren’t as many African-American or Latino physicians in many communities, and so many minority patients don’t feel comfortable going to a doctor or communicating with their doctor.”
The financial burden
Alzheimer’s is the most expensive disease in the nation in terms of treatment and care. Last year, direct costs to American society for caring for those with Alzheimer’s and other dementias were estimated at $236 billion, according to the Alzheimer’s Association. In the last five years of life, the costs for a person with dementia, on average, total more than $287,000 in 2010 dollars. Comparable costs are $175,000 for a person with heart disease and $173,000 for an individual with cancer.
Most of these costs are born by Medicare and Medicaid. In 2006, Medicare payments for African-Americans with Alzheimer’s and other dementias were 45 percent higher than for whites with the same conditions, while Medicare payments for Hispanics with the same diagnosis were 37 percent higher than for whites, according to the Alzheimer’s Association.
“People with dementia have huge health care costs and a lot of it is because people are not getting the medical support they need early on and they’re going to the hospital when a crisis situation develops,” Apple said. “Hospitalization is very costly and then rehospitalization often occurs because there’s no concerted effort to deal with Alzheimer’s and dementia among many of the health systems in this community.”
Skilled-care nursing homes for those living with dementia can cost thousands of dollars a month, Sofolawe said. Alzheimer’s is becoming so prevalent, she said, that it may cause some people to change the way they think about saving money for the future.
“The reason I think that most people aren’t prepared is because of lack of awareness about Alzheimer’s” she said. “At some point, it may become just as important that people put money away for long-term skilled-care nursing just as they would save money for college when they are young.
“Alzheimer’s has progressed so rapidly in the U.S. and around the world in the last 20 years, and that’s not a lot of time. We’re kind of behind the eight ball with this when you look at what’s coming. Baby boomers are getting older. People are living longer. And with African-Americans, all the concerns about Alzheimer’s are greater.”
While deaths resulting from stroke, heart disease and many forms of cancer are declining, Alzheimer’s is the only top 10 leading cause of death in the country that is increasing on a per-capita basis, said Dr. Shawn Wallery, a neurologist at Mercyhealth in Rockford.
The number of people with Alzheimer’s disease in the U.S. is expected to nearly triple by 2050 to 13.8 million. If nothing changes by then, the Alzheimer’s Association estimates that Medicare spending on people with the disease will swell to $547 billion. Put another way: Medicare spending on people with Alzheimer’s will increase 345 percent by 2050 and consume one of every three dollars of total Medicare spending in the country.
Though that sounds dire, the growing incidence of the disease may fuel medical breakthroughs that will result in new treatments or even a cure, Wallery said.
“We really don’t have a good understanding of what causes Alzheimer’s so we don’t know exactly how to target it, but there’s such a growing prevalence of the disease that there’s a lot of money to be made for whoever cures it first and whoever develops drugs and treatments for it,” Wallery said.
The emotional toll
Sofolawe said she and her siblings began to notice their mother tended to be more forgetful and confused when she turned 70. About three years later “she lost all ability to be able to take care of herself,” she said.
Alderwoman Ann Thompson-Kelly saw a similar decline in her mother’s mental health in recent years. Her mother, Marie Yarbrough, has lived with Thompson-Kelly for six years.
She can still recite her birthday — May 23, 1928. She helps wash dishes and makes her bed daily. But she’s often confused about her surroundings, so her name is written on a sign that hangs on her bedroom door. Her dresser drawers are labeled so that she knows where to find her socks, blouses and other articles of clothing. Child gates in front of stairways and in most rooms of Thompson-Kelly’s home prevent her mother from wandering. An alarm system goes off when she roams too far.
A nurse visits once a week to provide medical care. A certified nursing assistant visits two or three times a week to help with bathing and changing bed sheets and other tasks.
“I would say the most heart-wrenching thing to accept is knowing your mom the way she used to be and accepting the fact that this disease is not going to get better or go away,” Thompson-Kelly said.
Prodding her mother to exercise is a challenge, but Thompson-Kelly said she takes great care to make sure her mother’s diet includes plenty of fruit, vegetables and other fresh foods.
Warning signs
Doctors believe that a balanced diet, regular exercise and mental engagement are keys to preventing the onset of Alzheimer’s and other diseases that affect cognitive and neurological function.
Studies have also shown that music fluency — playing music regularly or learning how to play a musical instrument — is key to keeping Alzheimer’s patients in a healthier status. The ability to sing and play music are often the last cognitive functions that people with Alzheimer’s tend to lose, Wallery said.
The volume of the human brain is largest when a person is 30 years old, and people tend to lose about 1 percent of that volume every year after that, Wallery said. Alzheimer’s accelerates this process. And while people can have the disease in their 30s or 40s, it generally doesn’t develop until a person is 65 or older. The disease tends to worsen noticeably every five years or so, he said.
“Mild forgetfulness is a very common complaint, but what you look for in terms of warning signs has more to do with mood changes, social construct changes, a social status change, a person’s ability to care for themselves,” Wallery said.
There are no known genetic markers for Alzheimer’s disease, but research has shown that people with other health problems, including obesity, high blood pressure and diabetes, are more at risk of developing dementia.
“The No. 1 thing we can do to keep our brain healthy is to exercise,” Wallery said. “People do better on cognitive testing who do routine aerobic exercise — at least five times a week. Another thing we know is that people who stay educated and remain socially engaged also helps.”
Isaac Guerrero: 815-987-1361; iguerrero@rrstar.com; @isaac_rrs
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