University of Iowa study offers tools for dementia patients, caregivers

Participants given iPads to record interactions with dementia patients

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About two years ago, Patricia Boggs noticed something was off with her husband, Mike. He was agitated, nervous and forgetful.

The Sioux City couple started looking for answers, scheduling doctors appointments and meeting with specialists in Iowa and Nebraska. They eventually got a diagnosis: Alzheimer’s disease.

From there, Boggs said they went from zero to 60 in terms of care and treatment.

“But this is a progressive disease — the journey is a challenge,” Patricia said.

“I have taken over giving him his medication. I’m in charge of finances, cooking and transportation. He still is a very capable person and he can carry on a conversation.”

Since Mike’s diagnosis, Patricia has done a good deal of research on the disease, joined a caregivers support group and worked to advocate on Mike’s behalf.

That’s how she came across a University of Iowa study for dementia patients and their caregivers.

The four-year study, funded by a $1.9 million National Institutes of Health grant, is reviewing telehealth’s effectiveness when giving support to caregivers of dementia patients, said Kristie Williams, the study’s principal investigator as well as a registered nurse and professor of gerontological nursing in the University of Iowa’s College of Nursing.

Participants are given an iPad mini with a special app that allows the caregiver to record situations where he or she may have questions on how best to handle an incident.

The Behavior Imaging app — originally created to capture video of children with autism — has a buffering feature that allows the user to capture events before he or she starts recording.

The caregiver then sends in the video, and a committee made up of medical professionals from the hospital and the university review the footage and provide feedback.

“The idea in this is that it’s an easy way to provide support,” Williams said.

Williams works with four families for three months at a time, periodically sending the families questionnaires to fill out in addition to weekly phone calls.

She is about two years into the study and said she still is looking for additional families, especially in rural communities, to participate.

Caregiving is a stressful, time-consuming and isolating job, Williams said.

A July AARP report estimates that family caregivers in the United States provided about $470 billion in unpaid medical support and other services in 2013. That report also found that caregivers work an average of 18 unpaid hours each week.

There are an estimated 40 million caregivers across the country — and 540,000 in Iowa — who provide medical care, help around the house and transportation to aging parents or spouses with a chronic illness such as Alzheimer’s.

For the Boggs family, Patricia said the feedback has helped tremendously. After Mike developed tremors and had trouble holding utensils to eat or cups to drink, the committee suggested he use a straw.

“They offer easy, simple solutions,” Patricia said. Williams even “did research for us on exercises so he can work on his balance.”

The couple also sent video in once after Mike had an episode and was home by himself.

“I came home and found him on the sofa,” Patricia said. “He said, ‘Get the iPad, I’m not feeling well.’ ”

Patricia turned on the iPad and began asking him clarifying questions — did he know where he was, what happened? They then sent in the vignette and talked about the episode in their weekly call with Williams.

“They’re really helping us more than we’re helping them,” Patricia said.

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