TAMPA — One day a respite aide came to Lori Stanton's home for a few hours to look after her mother, who has dementia. The aide urged Stanton to go out and do something fun.
"No,'' Stanton replied. "All I want to do is go in my room, shut the door and go to sleep."
Millions of caregivers know just what she meant. People with dementia often get up at night, turning on appliances, opening doors, even wandering away.
"My husband and I traded nights sleeping on the sofa to listen for my mother. We never knew when she was going to get up," Stanton said. "She would get up four or five times a night, every night. She would turn on the stove and walk away, forget what she was doing. She would fall frequently. We were getting up every couple of hours."
The stress and sleep loss took a toll on Stanton. She lost weight, developed heart palpitations, chronic headaches, depression and insomnia.
"I had to quit my job after three months. I was so exhausted I couldn't be productive. All I wanted to do was sleep," said Stanton, 53. "I was in that hyper vigilant mode for four years."
She ultimately placed her mother, Elli Cone, 88, in a nearby care facility where she visits her frequently. It took counseling and almost a year before Stanton felt normal again.
"I became so programmed to wake up in the middle of the night, even though (my mom) wasn't here, I still woke up at night repeatedly for about six months," she said.
Lack of sleep is a common problem for the 15 million caregivers who live with a dementia patient. "We hear it from probably 70 percent of our callers," said Lisa Milne, vice president of programs for the Alzheimer's Association-Florida Gulf Coast Chapter, which fields more than 15,000 calls annually. "It's a big problem that affects their health and their ability to provide care.''
Chronic stress by itself is a risk factor for high blood pressure, diabetes, obesity, heart attacks and stroke. "But there are other things at play," said Meredeth Rowe, a professor at the USF College of Nursing. "That's why we are trying to untangle this caregiver stress. Stress alone doesn't have this effect. We're looking at vigilance and sleep."
Rowe is the lead investigator on a federally funded study of sleep loss in caregivers like Stanton. Many feel they must provide 24-hour supervision to keep their loved one safe.
"So they can't relax, even at night," Rowe said. "We're trying to determine if the constant vigilance keeps the sympathetic nervous system on high alert, working even at night. That would increase their risk for heart disease because it's like having untreated high blood pressure."
The USF team is placing a monitoring system in participants' homes to alert them whenever the patient gets out of bed. Rowe is seeking caregivers willing to use the CareAlert system, provide blood samples and answer periodic questionnaires about coping.
"Caregivers don't have to leave home or their loved one in order to participate," she said. "We want to know if the monitoring system improves (caregiver) sleep, and if so, if that improves their biomarkers for heart disease."
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