Researchers worldwide are seeking better treatment options for Alzheimer’s disease. In the meantime, almost 6 million Americans live with its direct effects, and about 16 million people providing unpaid care for people with Alzheimer’s or other dementia live with its less-direct effects, according to the Alzheimer’s Association.
A recent Baylor University study exploring the effects on caregivers came about in part through discussions with members of the association’s local chapter. In the study, doctoral candidate and lead author Chenlu Gao and Sleep Neuroscience and Cognition Laboratory Director Michael Scullin zero in on the way those who take care of people with dementia are likely to become sleep-deprived over time. Local Alzheimer’s Association Program Director Audrey Kwik said the study’s findings even surprised association staff.
“One of the things that’s very much on our radar is caregiver support, but I personally had never looked at sleep in terms of something we needed to be looking at and asking caregivers about,” Kwik said.
In a hopeful turn, the Baylor study found simple behavioral strategies improve rest quality, including exposure to sunlight early in the morning and making time for exercise.
Nan Rentz, a former Baylor instructor, took on the caregiver role for her husband Stanley, a former county judge and lawyer, after he received an Alzheimer’s diagnosis. They said they have had to make changes but consider themselves relatively fortunate. The house they live in with their Australian Shepherd, Lucy, is within walking distance of Stanley Rentz’s sister. Nan Rentz said they have still become more socially withdrawn over time. Spontaneity is not an option, hosting guests is difficult and going out is even tougher.
“I guess I’ve always felt a little bit isolated since we’ve been out here, which has been about 16 years,” she said. “I feel more isolated now because we don’t go as many places.”
Stanley Rentz said the isolation wears on him as well, but he is adamant about accepting his situation.
“Consequently, I just don’t go much,” he said. “I try to entertain myself here as best I can, which is not a lot. But I’m not a high-pressure person. I don’t have to go, go, go all the time.”
Nan has chronic lymphocytic leukemia, a cancer of the blood and bone marrow that causes fatigue and back pain that further complicate the matter. She said she is strategic about planning her days around getting enough rest. When they first began telling people about Stanley’s diagnosis, not everyone understood, she said.
“Most of the time they don’t understand that it goes in stages,” she said. “They wouldn’t try to relate to Stanley, they wouldn’t try to engage him. Our close friends were a little bit better, especially after a few months or a few years.”
The pair, Nan 75 and Stanley 81, said they attend support groups, educate themselves about Alzheimer’s as much as they can and lean on friends who have had similar experiences.
“We have to be on the lookout for it all the time,” Stanley said.
Kwik, with the Alzheimer’s Association, said for family members who become caregivers, social isolation, age, sleep and health all play in to one another.
“Anecdotally, we hear they (caregivers) neglect their own health, particularly elderly caregivers,” Kwik said. “They’re so concerned about taking care of their spouse that medical issues that could be perhaps prevented are ignored, and they end up with significant medical issues.”
The Baylor study on caregivers’ sleep is one more tool in the association’s toolbox for helping families, she said.
As Alzheimer’s progresses and it becomes more difficult for families to go out, it is common for their social circles to shrink, said Christine Schroeder-Morren, the association’s education and family care specialist.
“Once they’re to that point that they need so much coaching or help to get dressed, they’re exhausted by the time they’re ready to go and they’re just like ‘I don’t even want to do it anymore,’” Schroeder-Morren said.
While anyone can take on the caregiver role — a spouse, an adult child or an in-law — women tend to take the role on more often, she said.
“A lot of times they’ll feel like there’s no one else to do that,” she said.
Age is the biggest risk factor for Alzheimer’s, meaning elderly spouses are likely to fall into the demanding role of helping their loved one eat, dress, bathe and perform other daily tasks.
“You have people in their 70s and 80s caring for each other,” Schroeder-Morren said. “As the disease progresses, the things they’re helping them with become more physically demanding. So they’re getting more and more exhausted emotionally, psychologically and physically.”
In other cases, adult children with families and full-time jobs of their own become caregivers.
“The role of those women in particular, they’re caring for their parents so much more as the disease progresses that they start to miss out on other family things,” Schroeder-Morren said.
Robbie Company helps her step-mother take care of her father, Frank Payne. He and his wife, Helena, moved to the Waco area to be closer to Company and her sister shortly after Payne was diagnosed about five years ago.
“Dad doesn’t do anything without her,” Company said of her step-mother. “I remember the first time she told us Dad follows her everywhere. We were like, ‘What do you mean? Dad has always been an independent person.’”
She said Alzheimer’s Association support groups she attends have been a godsend for her family, which has been as proactive as they have known how to be.
“We just dealt with stuff as it came up,” Company said. “As we started seeing more signs and differences, we really started researching more.”
She said a large part of being a caretaker is coming up with ways to address new obstacles as they arise, something support group members are good at helping each other with. For example, when her father started wandering the house in the dark at night, they bought motion-activated lights so he could navigate more safely.
“That’s been new for us,” Company said. “We just kind of see what’s going on and see what we can do to solve it or go a different way, whatever will help both of them. We just adjust wherever we need to adjust.”
She said while connecting with people who have been through the same thing has been key to helping herself and her loved ones, it is also important to reach out directly to people who bear the primary responsibility for someone with Alzheimer’s, because people might downplay or deny the severity of the situation.
“Start being there,” Company said. “Start calling. Check on them. Say ‘Is there anything I can do to help?’ The more often someone is around, they’ll get used to them and they’ll start to depend on them and ask for more help. They’re going to open the door and let you in, because they’re not going to be able to handle all of that by themselves.”