In recent months, Shemetricia Jones felt a jolt of fear every time her cellphone rang.
The incoming calls were increasingly about her mother, who had dementia: about how mom was hearing voices, how she had wandered into oncoming traffic, or how the cops were threatening to arrest her. Over the past year, Jones repeatedly tried to get her 58-year-old mom the care she needed, but nothing worked.
“No one wants to assist us. It’s like pulling teeth to try and get help,” said Jones, who lives in Atlanta, in an interview in mid-October. “We had to get locks on the doors to keep her inside.”
Just one week later, Jones’ mother died in her sleep, the exact cause still unknown.
Jones’ turbulent final months with her mom highlight an experience many caregivers in the United States face when their loved ones are diagnosed with dementia: one marked with frustration, isolation and fear of what’s next. The state is making strides to improve care for Georgians with dementia, and has poured funds into efforts focused on diagnosing people earlier, with the hope of slowing the disease’s progression. And there are signs of real progress: the state has opened clinics across the state to diagnose people with dementia, and hopes to start administering Alzheimer’s drugs that are coming onto the market.
But significant challenges remain. Dementia care is costly, and there’s currently a dearth of health care workers, as well as few specialists that focus on dementia.
In Jones’ case, her calls for help went unanswered.
She called the police who threatened to arrest her mom for wandering the neighborhood. She called a crisis hotline for Georgians and was told her mom didn’t qualify for help. She tried getting her mom on Medicaid, to no avail.
“Mom, she constantly struggles, and right now is slipping through the cracks,” Jones said in the interview shortly before her mom’s death.
Access to dementia expertise is a problem across the United States. National reports have shown that only a small portion of older people are being properly screened for the symptoms of memory loss. There are also issues around the public’s basic understanding of dementia.
Dr. Jim Lah, associate professor for the Department of Neurology in the Emory University School of Medicine, said dementia and Alzheimer’s disease are terms that are often used interchangeably, but that dementia refers to any condition that causes a deterioration in a person’s thinking abilities. This includes Alzheimer’s disease, which is the most common form of dementia, as well as vascular dementia and strokes, among other health issues.
According to Lah, there are only a handful of neurologists in the state of Georgia who have specialty expertise in dementia, most of whom are at the Emory Integrated Memory Care Clinic. This means primary care doctors are often responsible for diagnosing patients with dementia.
“There’s no way that we can meet the demand,” Lah said of Emory’s clinic. “And so eventually we wind up booking out, booking out, and several times we’ve booked out so far that our scheduling system — which only goes 13 months — was now full. Access has been a real big problem.”
Other barriers to access include a lack of places providing services, and the cost, according to Nancy Pitra, director of government affairs for the Alzheimer’s Association, Georgia Chapter. She said that Medicaid doesn’t cover some of the more intensive services, nor will Medicare, except for rehab services.
What’s more, many health care workers left their low paying, high stress jobs for better positions during the pandemic. This resulted in a health care workforce crisis.
“What we do know is that we do need more providers, there’s a workforce shortage out there,” Pitra said.
In 2017, the state Legislature set aside funds for a statewide program that makes it easier for Georgians to find a location where they can be evaluated for signs of dementia. The program, Georgia Memory Net, is a partnership between the state and Emory that trains physicians on screening for dementia, and collects data the state can use to support those living with the disease. The program, which started opening clinics in 2018, also provides support for patients and families who are coping with dementia.
Under this program, experts in Emory’s Cognitive Neurology Program train and work alongside “Memory Assessment Clinics” that have been set up across the state in Atlanta, Augusta, Macon, Albany, Savannah, Vidalia, and Gainesville. There are now also expanded options for telehealth appointments. As of this year, DHS now has a dementia care specialist at each Area Agency on Aging around the state.
Credit: Miguel Martinez
Credit: Miguel Martinez
Kylie Winton, a spokesperson with the state’s Department of Human Services, said that the program has provided services for more than 2,748 patients and conducted over 5,084 patient visits to date.
There are other reasons for optimism: drugs that could help slow the progression of Alzheimer’s disease are now coming onto the market, and there’s evidence these drugs could help, particularly if Alzheimer’s is identified in its early stages. Lah, who also serves as the director of the Georgia Memory Net, said that Emory is working with the clinics to start administering these drugs, but doing so will take some time.
Other states have begun turning to Georgia for advice on how to get their state governments to invest in similar programs, he said.
“We still have got a lot of work to do, but Georgia is actually well ahead,” Lah said. “I would argue that we have put together the most effective statewide program anywhere in the country.”
The Alzheimer’s Association has a free helpline that is available 24 hours a day, seven days a week. Specialists and master’s-level clinicians can offer confidential support and information to people living with dementia, caregivers, and their loved ones. The phone number is (800) 272-3900.
About the Author
