"Utah is a state that is really good at encouraging people to take care of other people family, neighbors and loved ones but we don't have the best possible framework in place to protect the rights of those [caregiving] people," said Alan Ormsby, state director of AARP Utah.
Family caregivers need more training, notification when a loved one moves in or out of a hospital or nursing home, paid leave from jobs, help with stress, and the chance for a respite, even if just for a few hours, he said.
"One of the biggest challenges for any caregiver is burnout," Ormsby said.
Forty-three percent of family caregivers in Utah reported that they worry, are stressed, and don't have enough time or rest, ranking the state 47th on that indicator. The national median was 38 percent for such stresses.
While Utah is worst in its support for family caregivers a composite that includes scores based on laws as well as stress levels it ranks near the top on another composite measure: transitions.
Utah is No. 2 for having the least disruptive transitions between care settings, meaning a lot of people successfully move home after stints in nursing homes.
The community providers and family support that help them stay at home and out of the hospital are great in Utah, Ormsby said.
"We've got some things we do really, really well," he said.
Such services may be one reason the number of Utahns living in nursing homes dropped by nearly a third from 2000 to 2010, according to a report this week from the U.S. Census Bureau.
Ormsby credits Utah's high score on transitions to the Utah Department of Health's New Choices Medicaid waiver, which provides a seamless way for those in nursing homes to go home. If they can get the care they need and the cost is the same or lower, such Medicaid recipients can return home.
"One place we could step it up is in helping people avoid nursing home placement in the first place," Ormsby said.
He said he hopes the Utah Legislature will support providing more training and respite care for family caregivers and ensure hospitals or other facilities notify caregivers when an older or disabled family member is coming or going. The Utah Legislature passed HJR 14 on caregiving last session, but that was just a general statement expressing support for caregivers.
The AARP said in a news release that it hopes Utah will also consider allowing home health workers to perform more health maintenance tasks that now fall to family members, such as tube feedings, and giving tax credits to low-income caregivers.
Laws dictating that employers provide leave for workers who need to take care of loved ones may be a tougher nut to crack, he said.
"That's a bit more complicated and challenging for a state to do," said Ormsby, adding that many states do have such laws, going beyond what's required by the federal Family and Medical Leave Act.
Share your caregiving experiences
A town hall is planned from 5:30 p.m. to 7 p.m. Wednesday at the University of Utah so that researchers looking to improve the coordination of care for older residents can hear about the experiences of patients and caregivers.
The town hall will be at Spencer Fox Eccles Business building (SFE), room 5160A. Visitor parking is just south of the building, and organizers will have parking validations. Organizers ask that those planning to attend contact Christie North at email@example.com.
Other town halls also are planned and individual interviews can be scheduled as part of "Taking Care of Our Parents: Improving the Coordination of Care for Elderly Community Members."
It is a nationally funded research project, and has a Facebook page, Taking Care of Our Parents.
Persons interested in participating in the project can complete a screening questionnaire at this website.
Utah's caregiving highs and lows
A new national study from AARP ranked Utah:
No. 1 for the low percentage of patients receiving home health care who were hospitalized, less than 19 percent.
No. 1 for the percentage of people staying in nursing homes for 90 days or more and then successfully transitioning back into the community, nearly 16 percent.
No. 3 for the cost of nursing homes when those 65 and older pay out of their own pockets. The cost is 166 percent of median household income lower than in 46 other states.
No. 7 for the percentage of adults with disabilities in the community 89 percent who are satisfied or very satisfied with life.
No. 42 for the employee turnover in nursing homes, nearly 53 percent a year.
No. 43 for the low percentage at 3.3 of those over age 40 who have long-term care insurance.
No. 44 for the low number of home health and personal care aides, 22 for every 1,000 seniors.
No. 49 for the percentage of nursing home residents 25.5 being given anti-psychotic medicines (sedation).
Source: AARP's study Raising Expectations 2014, A State Scorecard, www.longtermscorecard.org.