UPDATED: Georgia’s Alzheimer’s caregivers face hurdles to care

Nationally, 1 in 9 people over the age of 65 are living with the progressive disease.

Credit: Family photo

Credit: Family photo

Shonda Bell felt her mental rope was fraying.

Bell, of Albany, Ga., who works as a special education teacher, takes care of her household and both parents who were diagnosed with Alzheimer’s disease several years ago.

It got so overwhelming that her adult daughter moved back home to help her.

“I felt like I was on the verge of something happening to me,” said Bell, who began to struggle at her job. “I could barely concentrate, I was barely sleeping. I had a constant tightening in my chest.”

She was starting to experience depression.

Bell is not alone. A recent study by the Alzheimer’s Association paints an alarming picture of the toll that the debilitating and progressive disease takes on caregivers, the healthcare system and healthcare workers.

“This new report clearly shows that dementia caregivers need more support now and in the coming years,” Linda Davidson, executive director of the Alzheimer’s Association, Georgia Chapter, said in a release.

Nationally, 1 in 9 people - or more than 6.5 million people - over the age of 65 are living with the progressive disease. The number is expected to increase to 13 million in 2050, according to the 2023 Facts and Figures report released annually by the Alzheimer’s Association.

In 2022, more than 11 million caregivers of people with Alzheimer’s or other dementias provided an estimated 18 billion hours of unpaid care, valued at more than $339.5 billion, the report says.

Alzheimer’s has become a important topic in Georgia and nationwide as the population ages. Experts agree that here and elsewhere that are many cases that have not been diagnosed.

On Wednesday, the Alzheimer’s Foundation of America brought its “Educating America Tour” to Atlanta, drawing a standing room only group of caregivers, senior adults, advocates and service providers.

Dr. Monica W. Parker, director of outreach, recruitment and education at Emory University’s Goizueta Alzheimer’s Disease Research Center, told those gathered that dementia is “not a normal part of aging. Your body may take longer to heal but your brain should still function as you get older.”

While there is no cure for Alzheimer’s and other dementias, she said people can take steps that are proactive including exercise, staying hydrated, not smoking and managing chronic conditions like diabetes and high blood pressure.

The AFA has made a number of grants to Georgia groups working to raise awareness and conduct research on dementias including a 2017 grant of $50,000 to the Goizueta’s Research Center to support education and community outreach efforts among the metro Atlanta African-American community.

Last year it awarded a grant to Duluth-based Peachtree Christian Health to help fund their Early Interventions for Brain Health and Resilience ((EIBHR) program, a pilot program designed to help individuals slow the progression of dementia by starting interventions earlier.

In Georgia, there are more than 150,000 people age 65 or older living with Alzheimer’s, a number that is expected to increase significantlyaccording to the Alzheimer’s Association report. The number of unpaid caregivers is roughly 343,000.

Alzheimer’s is the most common cause of dementia, accounting for an estimated 60% to 80% of cases, according to the report.

Credit: Family photo

Credit: Family photo

In the mildest cases, people with Alzheimer’s and other dementias may continue to work and drive with some assistance from relatives. In the most severe people can wander away, get lost and be at risk of injury or death.

However, it is a progressive disease with symptoms that eventually become severe enough to interfere with swallowing, remembering conversations and names, confusion, poor judgment, difficulty walking and speaking, depression and changes in behavior.

How quickly the disease progresses and what abilities are affected varies from person to person

Next week, Bell will travel to Washington, D.C. for the Alzheimer’s Association’s National Forum event, where advocates from all over the U.S. will lobby lawmakers.

Bell’s mother, who is 77, is in the late stages of Alzheimer’s and now lives with Bell. She can take walks and feed herself but has to be monitored because she tends to have trouble chewing and putting too much food in her mouth. There are issues with memory and some behavioral changes.

Her father, who is 80 and was diagnosed in 2018, has a mild case of the disease and is still able to live in the family home with support.

When the pandemic hit, Bell said it actually gave her a brief respite because she no longer had to be in the classroom or travel forth and back to her job.

“I finally felt like I was able to breathe for a little bit,” she said. “Just for a moment. I think Covid saved me.”

She has joined a support group for caregivers and relies on her faith.

There are roughly 140 potential treatments in the pipeline. Many, though, target early-stage cases of the disease, which Bell said will do little to help her mother, and her father is reluctant to take medication.

However, she knows so many people who have recently been diagnosed that “hopefully it will benefit them. I would love to see them have access to those treatments. There’s a lot more people than I knew who are dealing with Alzheimer’s.”

Caregiving by the numbers:

59% of unpaid caregivers report emotional stress due to caregiving.

38% of unpaid caregivers report physical stress due to caregiving.

The prevalence of depression is higher among dementia caregivers (30%-40%) when compared to caregivers for other conditions such as schizophrenia (20%) or stroke (19%)

Dementia caregivers report higher rates of chronic conditions including stroke, heart disease, diabetes, and cancer compared to caregivers of people without dementia or non-caregivers.

The number of direct care workers needed between 2020 and 2030 – an estimated 1.2 million more direct care workers are needed, which is more new workers than in any other single occupation in the United States.

In Georgia:

52% of caregivers reported at least one chronic condition.

25% of caregivers reported depression; 12% report frequent poor physical health.

Source: Alzheimer’s Association