Michelle Agaston, 63, of Pittsburg, knows all too well how quickly things can change when an elderly parent develops Alzheimer's disease.
"We started noticing little things," Agaston says. Her mother was diagnosed at the age of 72, twelve years ago, which instantly put her family on the journey of learning about the disease and caregiving. Her mother passed away in October of 2016.
Agaston was also a caregiver for her uncle, her mother's brother, during the same time period she and her siblings were caring for her mother. Alzheimer's seems to run in the family — her grandfather also died from the disease.
Alzheimer's continues to take a toll on more African-American families every day.
Her family is not alone. According to the Alzheimer's Foundation, there are over 5.4 million people currently living with the disease. And African-Americans have the highest rates of Alzheimer's of any racial or ethnic group. They are also two times as likely to develop late onset Alzheimer's, like Michelle's mother, and her uncle—more than their white counterparts. But is it genetic?
A study from researchers at the Mayo Clinic, published in the February issue of the Journal of Alzheimer's Disease, may show some insights into the genetics of the disease in Black Americans who develop the disease after age 65.
The study's senior investigator, Dr. Nilufer Ertekin-Taner, M.D., Ph.D., a neurogeneticist and neurologist at Mayo Clinic's Florida campus says that while the reasons for these high rates of Alzheimer's in the Black community remains unknown, there could be multiple reasons. She cites "higher vascular risk factors such as hypertension, diabetes, high cholesterol, as well as differences in genetics and/or differences in socioeconomic factors."
"It is likely that the reason is some combination of these factors, all of which require further exploration," Dr. Ertekin-Taner adds.
Alzheimer's is the sixth leading cause of death in the United States, but for older African-Americans it is the fourth leading cause of death. And currently there is no cure, or no real slow down in the progression of the disease. One of the challenges has been a lack of research on African-Americans.
While the study points to more clues as to what causes the disease in African-Americans, Dr. Ertenkin-Taner says, "it is not conclusive and there needs to be more research and other studies to establish a definite risk mutation."
But before you run out to get genetic testing for yourself and your family members, Dr. Ertenkin-Tanner suggests that unless there is strong family history of early-Alzheimer's disease in multiple generations, "we do not advocate genetic testing for the known early-onset familial Alzheimer's genes."
Also, according to Dr. Ertenkin-Taner, findings from such genetic screens are unlikely to change the management of patients or the prognosis. "This situation will likely change when we have more targeted therapies for Alzheimer's disease," she says.
Age is a key risk factor in all racial and ethnic groups. More than ten percent of all persons over the age of 65 and nearly half of people over the age of 85 have Alzheimer's. The number of African-Americans over 65 will reach 6.9 million by 2030. The number of African-Americans over the age of 85 will increase to 638,000 in 2030, and will reach 1.6 million in 2050.
Dr. Ertekin-Taner adds that "despite being the largest published study of this type in this population to our knowledge, this study is still much smaller than similar ones being conducted in Caucasians."
High Economic and Emotional Costs
The economic impact of Alzheimer's not only places a burden on families like Agaston's, but also on the troubled health care system, as well. It is estimated that the cost of care for an individual patient runs somewhere around $20,000 per year. It doesn't begin to capture the lost wages of caregivers. And the annual costs related to the disease currently run somewhere around $200 billion for patients in the U.S.
Agaston was fortunate enough to be able to manage the financial cost of care. But she says the constant juggling and the emotional toll of seeing her mother and uncle slip away can't be measured.
"There is no question that it was so hard," she says. "But I am so glad I could care for them."