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Sheroll Carby learned first-hand how Alzheimer’s disease impacts every part of a person’s brain after her grandmother was diagnosed.
The community education coordinator for the Alzheimer’s Association office in Louisville passed on lessons she learned from her personal experience and career Thursday during a program at Pritchard Community Center on South Mulberry Street in Elizabethtown.
About 30 local residents turned out to learn more about caring for those with dementia during the first of a three-part series. The next event is scheduled for 1 to 3 p.m. Feb. 5 at Pritchard.
The first lesson focused on the care of patients in the early stages of Alzheimer’s. The disease accounts for about 70 percent of dementia patients, and tips could be applied to all forms of dementia.
A caregiver must make small changes to suit a patient’s needs, Carby said.
Deterioration of visual and spatial comprehension might make it hard for a dementia patient to use a toilet because the area typically is white. That can be remedied by buying a colored toilet seat, she said.
Another tip is to not rephrase a sentence when repeating it.
Dementia makes patients less able to pick the right words and understand things said to them.
If they don’t respond to something said, they’re likely trying to comprehend the words. Rephrasing the sentence forces them to begin again, Carby said.
It’s best to repeat the sentence with the exact same wording.
Other tasks are more challenging.
Carby suggested caretakers keep a journal of new symptoms and secretly email the patients’ doctors if they’re uncomfortable with disclosing all the information.
It’s also up to caregivers to speak up for patients to make sure they receive what they need, while remaining tactful enough not to make enemies of health care professionals, Carby said.
“They’re losing their voice, so you’ve got to gain yours,” she said.
It’s important to help patients stay active by encouraging them to continue their everyday tasks and routines. That might require modifying activities to match their abilities, adapting the activities over time to declining abilities and focusing on unique strengths and interests, Carby said.
Patients might stop doing some of the things they once did because those tasks are harder. They might also withdraw from social activities because they’re overwhelmed and embarrassed, she said.
Withdrawing and not being active can make symptoms worse. It’s important to encourage some activity and socializing, while allowing time for rest.
“No matter what age, people need purpose,” she said.
Andrea Stivers of Elizabethtown especially was interested in learning about guardianship and power of attorney.
Stivers wanted more information about how to help her younger sister, who might be developing dementia.
She also wanted to learn about how to handle tricky situations, such as taking away car keys, without making a person with dementia feel bad.
Carby said taking away driving privileges is one of the most difficult parts of being a caregiver because it is a loss of independence for the patient.
Dementia patients don’t usually believe they might hurt or kill someone, she said.
A more compelling argument is to tell the patient they might be hit through no fault of his or her own. The at-fault driver might get a lawyer who finds out the patient has a diagnosis of dementia and take everything the patient has in a lawsuit. Lawsuits are common enough to seem like a real danger, she said.
Tasks such as these and the tendency of dementia patients to say unfiltered, hurtful things can combine with the heavy responsibility and time commitment to make caretakers feel resentful, angry and guilty, Carby said.
“It’s important to remember that those feelings don’t make caretakers bad people.
“No one signs up to get this disease or to be a caregiver for this disease because it’s hard and there are some tough decisions,” she said.
The stress and work also mean caretakers have to pay attention to their own needs. Older caretakers have a 50 percent chance of dying before the people of whom they’re taking care.
Phyllis Jewell of Elizabethtown never has had to confront dementia.
Jewell is a caregiver to a woman who doesn’t have that problem, but she thought it was important to educate herself about the topics Carby discussed.
“I thought she covered it well,” she said.
Several audience members expressed an interest in learning more about the legal side of being a caregiver to someone with dementia. Jewell thought that would be a helpful class.
Allegro employees; June Whitlock, resident services director; and Victoria Lewis, memory care program director, previously heard Carby speak.
They attended the program to refresh themselves on important lessons for caregivers and to let audience members know about the caregiver support group at the facility.
To talk about the disease or obtain information about Alzheimer’s-related resources in the area, call the association’s 24-hour help line at (800) 272-3900.
Amber Coulter can be reached at (270) 505-1746 or firstname.lastname@example.org.