Camilla White’s days as a part-time caregiver for her mother began at 4 a.m. They ended at 10 or 11 at night.
“It just depended on Mom,’’ White says.
White was living in Huntsville, Ala., at the time. Her mother, Lillian Barber, had been diagnosed with Alzheimer’s disease, so White regularly commuted to Carrollton in west Georgia (more than 150 miles one way) to care for her.
After the disease took hold, Barber “liked to get into everything,” White says. “We couldn’t leave her alone.’’
White later retired from her job and moved to Georgia so she could be a full-time caregiver for her mom. Barber has since been moved to an assisted living facility.
She still likes to “ramble,” says White. “She seems to want to know what’s in this drawer, what’s in that drawer. She is always rearranging things.” It’s one of the ironies of dementia that sufferers can lose their ability to make basic decisions but still be aware enough to get into things that may not be safe.
White’s father also had Alzheimer’s before his death in 2017.
African-Americans, like the Barbers, are twice as likely to develop Alzheimer’s disease as Caucasians. And that disparity is a mystery to researchers.
“We don’t know why that is,” says Maria Misiura, a doctoral student who’s working with Jessica Turner, the lead investigator for a Georgia State University study on brain differences between blacks and whites with Alzheimer’s. The GSU researchers recently received a National Institutes of Health grant for that work.
Their study is seeking to find some answers through “functional magnetic resonance imaging,” a procedure that will measure brain activity in its natural resting state.
GSU’s Turner says understanding the increased prevalence levels among blacks is difficult — even when the researchers take into account the various lifestyle and genetic factors involved with ethno-racial identity.
Overall, Alzheimer’s has significantly increased in Georgia. An estimated 150,000 Georgians have the disease, and that number is expected to reach 190,000 by 2025, according to the Alzheimer’s Association.
The number of Georgians dying from Alzheimer’s is growing at a fast pace, exceeding the national average, said a study released in March.
Alzheimer’s disease is the sixth-leading cause of death for all Americans, and the fourth-leading cause of death for older African-Americans, according to the Goizueta Alzheimer’s Disease Research Center at Emory University.
The GSU researchers say African-Americans have generally shown little interest in participating in Alzheimer’s studies, and there are various reasons for this reluctance.
For one thing, participation can be costly, and African-Americans are statistically less wealthy than some other ethnic groups in Georgia. Caregivers may have to take time off from work and lose income to bring patients to studies. Researchers may have found it easier to recruit participants from more affluent populations.
And many African-Americans may also have a lingering mistrust of the scientific community. In the South during the era of racial segregation, it was often a deliberate policy to deprive blacks of proper health care. The most notorious example is the Tuskegee Syphilis Study from 1932 to 1972, in which medical treatment was intentionally withheld from the African-American participants.
Currently, there is no cure for Alzheimer’s and no way to stop the deaths of brain cells as a result of the disease. But some medications are beginning to help with symptoms, making the job of caring for Alzheimer’s patients a bit easier.
Lastly, the staggering economic toll of the disease is changing everything. The estimated 2019 costs for people living with Alzheimer’s or other forms of dementia in Georgia are $1.18 billion.
Normal living ceased to be an option
The personal and financial fallout from the disease can be seen in Camilla White’s family.
She and her siblings had to separate their parents at about the time she moved to Georgia, because her father’s dementia had taken a turn for the worse.
“Dad had been a wanderer,” White says, and given his wife’s dementia, the family realized that they “couldn’t handle both parents in the same home.” It was too much to keep up with.
They moved Pat Barber to the West Point area, where White’s siblings lived. “It was a very difficult time for the family,’’ she says.
He had started making calls to the police, imagining that “someone was trying to kill him, or that someone was stealing from him,” says White.
The family has learned that “no one is the same” when it comes to Alzheimer’s disease, White says. Different patients can behave very differently. “My dad was the opposite of my mom. My mom was real mellow, but my dad was just all over the map,” she says.
When it comes to dealing with an Alzheimer’s patient, there are some “surprise” expenses that many potential caregivers may not know about, says White. Some are fairly small, but they add up. She recalls having difficulty paying for medications for her mom that were not covered by insurance.
This year, White placed her mother in a senior living facility and decided to come out of retirement. She’s working again, this time to help with the added expenses.
“I speak to all families about the importance of early diagnosis and getting help from the Alzheimer’s Association,” she says.
Early detection of dementia (especially Alzheimer’s) will help support the care of individuals in their homes and prevent unnecessary visits to emergency departments and hospital admissions — translating to billions of dollars in savings.
Judi Kanne, a registered nurse and freelance writer, combines her nursing and journalism backgrounds to write about public health. She lives in Atlanta.
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