About 90 percent of long-term, informal health care in the United States is provided by unpaid caregivers, typically women, who spend more than $5,000 annually in out-of-pocket expenses. A survey from the University of Alaska Fairbanks and Fairbanks Memorial Hospital seeks to better identify the strengths and needs of Alaska’s informal caregivers and to ultimately help them.
“These unpaid caregivers are the backbone of our health-care system,” said Ellen Lopez, project leader and public health researcher at the University of Alaska Fairbanks. “Informal caregivers need and deserve responsive and accessible support.”
According to the U.S. Centers for Disease Control and Prevention, more than 34 million unpaid caregivers provide care to someone age 18 or older who is ill or has a disability, and the majority of caregivers — 83 percent — are family members. The AARP valued their services in 2009 at $450 billion.
“We have to find out what caregivers are doing and being asked to do, and how confident they feel doing it,” said Lopez. “Our survey asks them about how caregiving is affecting their emotional, physical, spiritual and social health, and we’re asking what they want and how, where and when they want it.”
Fairbanks Memorial Hospital also wants to know what caregivers want and how the hospital can tailor existing programs and possibly add new programs that better fit caregivers’ needs, which in turn helps patients.
“We’re definitely interested in the caregiver,” said Corlis Taylor, project partner and head of Fairbanks Memorial Hospital’s education department. “Knowing what can we do to lessen their stress and help the patient and the caregiver manage an illness is very important.”
The survey asks caregivers about interacting with physicians and giving medications, what might be considered more Alaska-specific concerns such as wood and water hauling and subsistence activities and things like managing mail, finances and transportation.
“The survey is for anyone who has been a caregiver in the past or is currently caregiving,” said Lopez. “If the caregiver or the person receiving care lived out of Alaska for some period of time, we want to hear from them. A lot of people are giving care from a distance.”
Once the survey closes in October 2015, Lopez and FMH will begin assessing the responses and identifying programs and services to help care for the caregivers.
“We’re looking forward to seeing what caregivers say,” said Taylor. “What are the things out there that we could be doing that we haven’t even thought of?”
The Alaska Informal Caregivers Needs Assessment Survey is an online survey that can be accessed at http://www.AKcaregiver.com through October 2015. People can also request to conduct the survey with a researcher via telephone. The survey is open to any person 18 years or older who cares for other adults who are experiencing illness, disability or issues of aging – most often without pay.
For questions or to schedule a telephone survey, contact Ellen Lopez at edlopez@alaska.edu or 907-687-2962.
The Alaska Caregiver Assessment is supported by the University of Alaska Fairbanks, Fairbanks Memorial Hospital, Fairbanks Native Association, Tanana Chiefs Conference and Fairbanks Resource Agency.