Kate Harrington is an English professor at East Carolina University. She writes dark humor for her. It's a way to process and write about her experience with her father's dementia. I visited her at her home in Greenville.
“There were enough memoirs out there of people crying,” she said. This is my life and I just thought, 'Let's make this funny’ because it is funny. My life is very much a comedy of errors.”
Kate’s father, Van, was diagnosed with frontotemporal degeneration, or FTD, a rare case of dementia. 50,000 people are diagnosed with FTD in the U.S. each year. It’s the most common form of dementia in early onset cases — those younger than 65. FTD presents in the brain’s frontal lobe, where executive functioning skills — like decision-making and planning — are located. Van began presenting symptoms in his mid-40s, when Kate was in high school.
“Well, I knew my dad had been acting crazy when I. Was in high school. So that would have been like late 90s. We kind of thought midlife crisis. Of some sort.”
FTD is rare, and it can be difficult to diagnose. Symptoms like behavior changes and difficulties with speech and movement are similar to other conditions. Diagnosis usually comes from scans of the brain and ruling out other possibilities. A definitive diagnosis can only come from a genetic test, if there is a family history, or through an autopsy.
Kate's experience with her father shows just how hard it can be to receive a diagnosis. Her father was misdiagnosed 4 times. One doctor said it was a tumor. Another denied it was a medical problem, according to Kate.
“It was our third attempt, and the doctor told my mom that my dad was mentally retarded and a waterhead,” she said. “I had to look up that term and it's a derogatory term.”
Most of the doctor’s appointments were west of Raleigh, at Duke and UNC Health centers. Then, and now, there is a scarcity of doctors who specialize in memory care in Eastern North Carolina. In fact, there’s a general lack of healthcare infrastructure for those with dementia and Alzheimer's in the area. Brooke Banson Vallely is with the North Carolina chapter of the Alzheimer’s Association.
“We need to increase the number of geriatricians three times to be able to care for people,” Vallely said about the statewide need for medical professionals who can treat and care for people with memory loss.
A report by the Alzheimer's Association of North Carolina outlines a growing need for neurologists and direct care workers. The report estimates that 26% increase in the need for home health aides and nursing assistants by 2030. That's in a field that is already struggling to fill positions for Kate and her family after her father would leave one facility, they'd spend weeks searching for another that could meet her father's needs.
“I went to 40 different facilities from Wilmington all the way up to like Roanoke Rapids and from probably Raleigh all the way east and couldn't get anyone to take him because of the. His disease is just not that well understood.”
The most recent workforce analysis from the U.S. Department of Health and Human Services shows a growing gap between the number of geriatricians and the demand for care as the nation’s population grows older. That gap is even larger in rural areas. Vallely held a community listening session at ECU last month.
“We wanted to hear from everybody because everybody from the 38 year old that's been in financial planning. For four generations with his family up into, you know there's a a commissioner from Ayden that was going through this with her mother. So, it's nice to have. Such different perspectives.”
As the microphone was passed around, many people said they wished they’d received educational resources from their doctor after a family member was diagnosed and for PCPs to receive additional training in spotting dementia.
“It is difficult for primary care physicians because we know they have to cover a gamut of understanding about diseases and what could be going on there,” she said. “It just comes down to a point of how can we help our primary care physicians know more about this disease and what this looks like?”
The Alzheimer’s Association of Eastern North Carolina hosts events to connect caregivers and provide resources. They’re hosting a lunch and learn event in Greene County on June 27th. To find help with securing long-term care, you can reach out to your county’s Aging Council. Also, the Dementia Care Alliance hosts a Dementia Q&A online on the second Wednesday of each month.
