By Athan Bezaitis

Caregivers in California face higher levels of serious psychological distress and negative health behaviors compared with the general U.S. population, according to Stressed and Strapped: Caregivers in California, a September 2011 policy brief from the UCLA Center for Health Policy Research that was supported by The SCAN Foundation.

The brief, which used data from the 2009 California Health Interview Survey (CHIS), profiles California’s more than 6 million informal caregivers, ages 18 and older, who are caring for family or friends with illness or disability. The survey found that California caregivers provide an average of 20 hours of care per week for a friend or relative who can no longer bathe unassisted, shop, manage medications or pay bills. In 2009, California caregivers provided nearly 4 billion hours of care at an approximate value of $47 billion.

Caregivers Will Need Care

The U.S. Census data project that the population of people ages 65 and older will more than double in the next 30 years, an effect that will drive increasing need for caregiving by family and friends—work that is largely uncompensated.

The estimated 2.6 million caregivers between ages 45 and 64 are particularly vulnerable because of higher rates of poor health behaviors, compared with both non-caregivers in the same age range and older caregivers.

“This group is the next generation of care recipients, and they will put a tremendous burden on the system,” said Geoffrey Hoffman, a pre-doctoral candidate at the UCLA School of Public Health and the brief’s lead author. “Given the stresses they are experiencing and their engagement in worse health behaviors, coupled with the dismantling of the services and supports system, we are heading toward a bleak future.”

“Family members and friends supporting loved ones in need provide the bulk of personal assistance
services and often absorb the high costs of caregiving, both financially and emotionally,” said Dr. Bruce Chernof, president and CEO of The SCAN Foundation, which provided funding for the analysis.

Health Reform to the Rescue?

UCLA researchers suggest that there should be a support system for providing much-needed assistance to caregivers in California, but recent cuts to the state’s home- and community-based services infrastructure will likely place greater burdens on informal caregivers.

There may be relief, however, via provisions in the new health reform law that offer a range of initiatives to provide in-home care to elders and people with disabilities, and to reduce dependence on high-cost Medicaid nursing homes, according to the UCLA brief.

States will have more flexibility to offer home- and community-based services to low-income older adults and persons with disabilities through the Community First Choice Option, which provides community-based attendant supports and services to disabled individuals who require an institutional level of care.  roposed new Medicaid funding for Aging and Disability Resource Centers could also lift some burden off informal caregivers, the researchers say.

“Programs that support family caregivers can help with sustaining vulnerable elders in the community, which promotes the values of dignity, choice and independence as loved ones grow older,” Chernof said.

The brief also calls for better coordination and integration of programs run by the state’s aging, healthcare services and public health departments to deliver streamlined and comprehensive access to support services for elders, people with disabilities and their caregivers. 

While difficult financial times present mounting challenges to informal caregivers and California, they also can create opportunities for breaking down programmatic silos and building a more efficient, effective and person-centered network of care. 

Athan Bezaitis, a communications specialist at The SCAN Foundation, is a frequent contributor to Aging Today. Click here to read the brief. Read the brief here or here,  For more information, please visit The SCAN Foundation’s website or the UCLA Center for Health Policy Research website.

Editor’s Note: This article appears in the January/February, 2012, issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy nationwide. ASA members receive Aging Today as a member benefit; non-members may purchase subscriptions at our online store.