By Matt Perry
It was dubbed “The Fog Bowl.”
On New Year’s Eve in the late 1980s, two professional football teams watched as a dense fog descended on Chicago’s Soldier Field, rendering the game largely invisible to coaches, fans and broadcasters alike.
As one player trudged off the field, a coach asked him a simple question: “What’s going on out there?”
A new California task force is asking this same question about family caregivers.
Overwhelmed family caregivers feel lost and frustrated, unable to navigate a fragmented and confusing system of support that should integrate adult daycare, long-term care and respite care for exhausted caregivers, while educating families on complex topics like dementia.
The problem is so acute that family caregivers often get sick themselves — and sometimes wind up hospitalized.
The California Task Force on Family Caregiving is diving headfirst into the problem with hopes of slicing through the fog and offering solutions during its two-year effort. After its first meeting in the fall, the task force released an interim report clarifying its direction and goals early this year.
Those affected by the caregiving crisis include busy Baby Boomers trying to juggle careers while taking care of aging parents, impoverished Latinos living within intergenerational households, and isolated members of the Greatest Generation caring for a spouse with Alzheimer’s disease.
To address this wildly complex issue — 44 million Americans perform 37 billion hours of unpaid care annually –- the task force is starting at the beginning.
“We really have very little data on family caregivers in the state of California,” says Kathy Kelly, one of 12 task force members and executive director of the San Francisco-based Family Caregiver Alliance.
There are question marks aplenty.
Back to basics
The median age, income levels and employment status of family caregivers today are just guesses. How many are caring for both children and older adults? What support do they receive, and from whom? How many are affected by Alzheimer’s disease and other forms of dementia?
And then there’s race.
In the melting pot of California, Latinos are now the majority population.
The needs of each group are drastically different, and require culturally appropriate support.
California has 11 family caregiver centers dotting the state. The centers field questions from caregivers and offer education and support groups for stressed family members. Staff members perform home visits and create individual care plans.
Why not simply expand the scope of these existing centers?
“They’re operating on budgets that are dramatically smaller with a population that is dramatically increasing,” says task force chair Donna Benton, who is also co-director of USC’s Family Caregiver Support Center. She says during the financial services collapse of 2008, center budgets were slashed nearly 75 percent.
Yet even fully staffed and funded, the state’s existing system wouldn’t be enough.
“If you really advertised these services, you wouldn’t be able to fill the demand,” says Kelly.
Peering into the fog of family caregiving reveals estimates from AARP’s Public Policy Institute that the ratio of potential caregivers to older adults is declining dramatically from sevent to one in 2010 to just four to one in 2030 and a meager three to one by 2050 according to the report You Take Care of Mom, But Who Will Take Care of You?
Besides collecting critical data, the task force is eyeing ways to streamline the state’s complex system of care. California’s aging services are spread out over 112 programs and 20 different agencies, as outlined in the 2015 legislative report A Shattered System.
The task force will also explore best practices from other states, with Minnesota considered the country’s gold standard.
Surprise: you’re a caregiver
The ugly truth is that caregiving comes as a surprise to most families.
“Many people become caregivers and don’t even realize they’re caregivers,” says Karen Lincoln, a task force member and senior scientist at USC’s Edward R. Roybal Institute on Aging, where she specializes in African American caregiving.
California was the first in the nation to recognize the need to support family caregivers. Its pioneering 1970’s program In-Home Supportive Services keeps impoverished older adults outside expensive nursing homes.
The caregiving problem includes the need for a “universal assessment tool” — a way to collect and share information across myriad state and local organizations
“Everybody talks about this information as being very important,” says Kelly, who has authored national guidelines on family caregiving. “But when the rubber hits the road and you try to get consistencies across the state, or even talk about consolidating, it doesn’t go anywhere.”
No more waiting
Some aren’t waiting for government action.
A handful of unique private ventures and social media campaigns are slashing through the fog.
Launched in 2015, Daughterhood Circles are making tentative inroads into the world of family caregiving. Supporting those often hit hardest by family caregiving obligations —daughters — the circles are the brainchild of long-time aging advocate Anne Tumlinson.
“I have been working at the high-level, policy and systems change level, and I had one of those big ‘a-ha’ moments when I was talking to a friend about caregiving,” says Tumlinson. “The way this plays out in the real world is so much more complicated and challenging than when we’re making policy at the federal and state level. We’re kind of clueless about how these activities of care play out. Because it’s really the family that is the caregiving system.”
She singles out the original Daughterhood Circle — started by Karen Van Dyke in San Diego — as the most active and successful nationally. (California’s only other circle, in Santa Cruz, is largely inactive.)
Monthly, 30 San Diego members hear speakers on various caregiving topics, swap stories and offer support. Its Facebook page is a social hub for advice and activity.
“What is truly magical is connecting with incredible women to make the daughterhood journey a more meaningful one,” says Van Dyke. “You don’t feel so isolated.”
Ties that bind
Another intriguing idea from Canada embraces the power of social networking to assist frustrated family caregivers.
Tyze.com connects neighborhood caregivers so they can pool their efforts, save time and foster community.
While members of the task force are largely unaware of Daughterhood Circles and Tyze, they are looking for innovations like these to fill the gaping holes in family caregiving.
The family caregiver crisis is escalating. And Benton says it will require all hands on deck.
“Formal and informal systems have to work together,” she says.