More than 16 million people provide unpaid care for individuals with Alzheimer’s disease and related dementias in the United States, logging an estimated 18.5 billion hours (according to the Alzheimer’s Association) of essential—but often taxing—work each year. It’s a responsibility that starts with the best of intentions but often slides into feelings of frustration, isolation and burnout.
During those hours of care, informal caregivers—particularly the primary caregiver—juggle a dizzying array of disparate tasks: giving medication, preparing meals, assisting physical movement, answering sometimes repetitive questions, facilitating social interactions, scheduling appointments, managing finances, coordinating with other caregivers, and making decisions on behalf of their loved one, to name a few.
“It’s really hard work and it’s extremely unsupported,” says Nicole Werner, Harvey D. Spangler assistant professor of industrial and systems engineering at the University of Wisconsin-Madison. “These caregivers are trying to do what they can to provide care to their loved one with dementia, and they don’t really have the support they need.”
Werner, PhD student Siddarth Ponnala and UW-Madison collaborators dug into greater depth of informal caregiving work for individuals with dementia, and published their findings in a paper that will appear in the May 2020 issue of Applied Ergonomics.
By identifying and categorizing the different functions caregivers perform and examining the nature of caregiving networks, the researchers say they’re uncovering details that could inform the design of more effective work systems and technological solutions. And those kinds of interventions could reduce stress and burnout among caregivers and improve the quality of the care they provide.
After gathering qualitative data from in-depth interviews with 20 primary caregivers, Ponnala, Werner and their collaborators broke down caregiving tasks into 13 discrete categories. That kind of breadth of work means caregiver support tools need to account for a wide variety of responsibilities.
“If we’re not thinking about support comprehensively, then we’re not helping the caregiver as much as we could be,” says Werner.
The researchers also analyzed the structures of caregiving networks and the roles within them—important considerations for elevating support offerings beyond those focused solely on one caregiver. Werner says she was surprised to learn that additional caregivers in a network often increased demands on the primary caregiver, because of all the management and coordination required.
Werner and her students plan to use this more nuanced and accurate picture to develop a quantifiable measure of caregiver workload and create an app to better connect and inform caregiving networks. The app, called HelpCare Connect, will offer information tailored to an individual’s care, keep the whole network informed, and help coordinate the distribution of work to ease the burden on the primary caregiver.
“As we know, dementia is a neurodegenerative condition, so it only gets worse with time. So the work is always changing and it’s also not necessarily done by one person, it’s usually done by a network of people,” says Ponnala, who is finishing up his PhD while working as a human factors engineer at Children’s Hospital of Philadelphia. “We need to make sure all caregivers within a network are on the same page so they can work together to provide the care required by the person with dementia.”
Other authors of the paper include Laura Block, a student in the UW-Madison School of Nursing; A.J. Lingg, a graduate student in industrial and systems engineering; and Amy Kind, an associate professor in the UW-Madison School of Medicine and Public Health’s Division of Geriatrics.
Author: Tom Ziemer