Alzheimer’s disease affects more than five million Americans, but caring for people with the disease is a job that usually goes unpaid.
The disease is the sixth-leading cause of death in the United States, according to the Alzheimer’s Association, and it affected 53,000 Mississippians in 2010.
Family members are often stretched to devote an increasing amount of time to caregiving or put their loved ones in a nursing home or day program.
University of Mississippi pharmacology and research professor John Matthews, who has researched neurodegenerative diseases such as Alzheimer’s, believes that the impact of the condition is undercut by cultural misunderstandings of the disease.
“I think there’s a perception in the population that dementia is a natural consequence of aging — nothing can be further from the truth,” Matthews said. “It’s not normal to get memory loss as we get older. Memory loss is due to a disease condition.”
Memory Makers in Oxford is a respite day service for people with early- to middle-stage dementia.
Director Dianne Arnold knows firsthand the stresses of caring for a family member suffering from the disease and started the program with the intention of making a difference.
“We wanted to create a day program that was low-cost, where people could actually afford to bring somebody with Alzheimer’s,” Arnold said. “We figure that’s $5 an hour, and you couldn’t get a sitter for that expense.”
It costs $20 a day to enroll a family member in the program.
This does not cover salaries of those who work at Memory Makers or any of the other expenses that keep the business running. Arnold said the service became a 501(c)(3) nonprofit to accept donations to stay afloat.
“We don’t break even,” Arnold said.
Memory Makers is moving to a larger location to accommodate more participants, but a larger space will invariably increase costs.
Currently, the organization relies on a donor to pay its rent, but the new location will cost $800 more per month.
Arnold said Memory Makers is also struggling to find the funds to renovate the new space.
“We don’t have that covered,” Arnold said. “We will need more support at a bigger place.”
Arnold said she lost her father to the disease and that caring for him caused her family great stress.
“I was up all day working, and all night with him — you don’t get any rest,” Arnold said. “He would follow me around because he knew that he couldn’t manage things by himself.”
Arnold said that caring for someone with this disease is often so stressful that the caregiver dies before the person with Alzheimer’s.
“My mother was 66 years old and she died taking care of my daddy, just because it was too much for her,” she said. “It’s just overwhelming responsibility.”
According to the Alzheimer’s Association, last year 15.4 million caregivers provided more than 17.5 billion hours of unpaid care. In Mississippi, 203,000 caregivers provided 231 million hours.
“I’ve had lots of friends who have struggled with enough hours and energy in the day,” said Rita Cauthen, a volunteer at Memory Makers.
Matthews and his wife are also transitioning into the role of caregiver for his mother-in-law, who suffers memory problems but has not yet been given a definitive diagnosis.
“It’s a huge burden on my wife. I can see it in her behavior and her level of anxiety and the level of energy that she’s got, because it’s wearing her down,” Matthews said. “Her mother isn’t there anymore, and that makes her angry.”