Lessons on life with dementiaSandra Haisten was diagnosed with dementia at Emory after she and her husband, Harry, spent a year searching for answers to her memory loss.
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Finding out a loved one has dementia is stressful. And that’s just the start of a challenging journey.
Many caregivers are quickly overwhelmed with feelings of inadequacy and frustration because they may not understand the illness or know about available resources.
Sandra Haisten was diagnosed with dementia at Emory after she and her husband, Harry, spent a year searching for answers to her memory loss.
After other doctors dismissed the idea of Sandra having Alzheimer’s or dementia, Harry pushed on at the urging of a friend and took his wife to Emory, where she was diagnosed by cognitive neurologists. They referred her to Emory Integrated Memory Care (IMC), a nationally recognized primary care practice designed specifically for people living with dementia.
“It allows you to get more complete medical attention from one [place],” he said. “Which is very, very helpful to me.”
Harry has learned that when you’re living with someone with dementia, you have to approach them in a “much different manner and realize that, in some cases, they just are not sure what they’re talking about.”
He said not to argue with someone with dementia.
“When a person with this disease says it’s black outside, and it’s a bright sun, you say yeah it is, but it’s getting a little brighter or something,” Harry said. “You’re living with someone who, in many cases, is not sure of right from wrong. And I don’t mean evil versus good. I mean just whether you finish eating dinner now or later or whether you put on your coat before you go out.”
Here to help with your needs
Sara Baxter’s mother, Virginia Carlin, was diagnosed with semantic dementia and soon began treatment at the IMC.
“As you can imagine, it’s very frustrating sometimes to be the caregiver of somebody who has dementia because you can’t talk to them or reason with them,” said Baxter, a caregiver to her mother. “You’re trying to take care of them, but they don’t make it easy at all.”
Baxter describes the IMC at Emory Healthcare as comprehensive care for people with dementia. Patients transfer their primary care to the IMC, a nurse practitioner-led clinic that cares for not only the patient’s mental health, but also their general physical well-being.
“The IMC is a very unique program in the way that it’s operated with normal patient care, along with [addressing] neurological problems,” Harry said.
Carlin went to the clinic with heart issues. Instead of sending her to a cardiologist, her nurse practitioner spoke with the cardiologist and they found a solution without an unnecessary extra visit.
“If they don’t know the answer, they go find it for you,” Baxter said.
For many caregivers, they face the struggle of feeling alone. Transitioning Baxter’s mom into the IMC felt like it was much more personal, she said.
“And I felt like I had an advocate and they cared about my mom,” Baxter said.
She used the after-hours call line, which provides caregivers with a number to call in the evenings and on weekends when her mom was staying at an assisted living facility. One day, she saw a huge gash on her mom’s arm and called Emory first, as advised, remembering she was told that “it’s traumatic for someone with dementia to go to the ER,” Baxter said.
Unsure if the injury was infected, Baxter called a nurse practitioner. She discussed the situation with the nurse practitioner, and her mom’s needs were addressed without an ER visit.
“She phoned in a prescription for an antibiotic, and I never had to take my mother out of her facility,” Baxter said.
Navigating the illness
As the patient’s health diminishes and the disease progresses, treatments and directions for care change. To help caregivers through those transitions, the IMC may host family meetings with a clinical social worker for the patient and their caregiver. At these meetings, a discussion is held about care goals and needs. The social worker also offers psychoeducational classes, support groups, and family therapy to help families navigate the challenges that come along on the dementia journey.
Baxter said she could call or email the clinical social worker for advice, ask questions about her mother’s care, or help with different transitions.
“I feel like these people are my friends,” she said. “Usually, you just don’t have that access at the doctor’s office.”
Integrated Memory Care Clinic has been open since 2015, and in 2022, the program launched a domiciliary practice, Integrated Memory Care in Community, that makes the comprehensive dementia care model available in select senior living communities. More information about both programs can be found on the website or by calling 404-712-6929.