Across the United States, more than 34 million people provide unpaid care to adults 50 and older. Most of them are related to the care recipients — about half are caring for a parent or parent-in-law — and three out of five are the sole caregiver.
“This can be rewarding but also emotionally, physically and financially draining,” says Jean Accius, Ph.D., vice president of independent living and long-term supports and services at the AARP Policy Institute. “Family caregivers need support. Their strengths should be valued, and supports should be tailored to their needs and preferences.”
Whether that support is available depends in large part on where you live. Some states offer a wide range of services and assistance for family caregivers, while others lag behind.
For more information about this study: Contact Laura Dixon, Caring.com Editorial Manager, at firstname.lastname@example.org.
The 2017 Long-Term Services and Supports State Scorecard compiled by AARP, the Commonwealth Fund and the SCAN Foundation, sheds some light on which states are making it easier for caregivers to perform these duties and which aren’t.
“But even in the top-performing states, there is always opportunity to improve,” Accius says.
In addition to supportive state and local policies and services for family caregivers, the availability of quality senior care options is another key factor that can provide crucial assistance and peace of mind for caregivers. Caring.com consumer reviews data indicates that some states fare much better than others with the availability of highly ranked senior care facilities and home care agencies relative to the state’s senior population.
For example, both Massachusetts and Virginia are states with high populations of adults aged 65 and older, but Massachusetts boasts a higher number of highly rated senior care providers.
The Best and Worst States for Family Caregivers, Ranked
Below, we’ve ranked all 50 states, from best to worst for family caregivers. To compare the states, Caring.com weighed two main categories. The first is the state’s score for “Support for Family Caregivers” in the 2017 Long-Term Services & Supports State Scorecard. The second is the availability of highly rated senior care options (such as assisted living communities and in-home care agencies) relative to the state’s population of residents aged 65 and older.
|State||Overall Rank||Caregiver Support Rank||Senior Care Options Rank|
|New Hampshire||12 (tied)||9||42|
|New York||12 (tied)||11||36|
|South Dakota||36 (tied)||34||42|
|North Carolina||42 (tied)||42||28|
What Makes a State a Good Place for Caregivers?
The first topic addressed in the AARP scorecard’s Family Caregivers section — support for working family caregivers — is important because, according to Caring.com’s 2017 Family Caregiver Journey Survey, more than a third of caregivers of seniors report being employed at least part-time, and 68 percent of those working caregivers say their work has been negatively affected by their caregiving responsibilities.
Working family caregivers often need to take time off from work to care for their family members, but doing so isn’t always easy.
“In the United States, we don’t have the infrastructure to support caregivers in the workplace —things like tele-work and flexible time,” Whiting says. “But the biggest issue is paid family medical leave, which our country does not provide.”
Under the federal Family and Medical Leave Act, employees can take up to 12 weeks of unpaid leave annually to care for family members. However, 12 states provide more coverage, and since 2014, California, Massachusetts, Oregon and Vermont have enacted legislation to mandate paid sick days.
Another piece of legislation that has benefited family caregivers in recent years is the CARE (Caregiver, Advise, Record, and Enable) Act. The law, which has been passed in almost 40 U.S. states and territories, requires hospitals and rehabilitation facilities to record the name of a family caregiver when a care recipient is admitted for treatment. That family caregiver must be notified when their relative is going to be released, and the hospital or rehabilitation facility must also provide explanations and in-person instructions about medical tasks the caregiver will be required to perform.
“The complexity of being a family caregiver has increased over time,” Accius says. “It’s important to make sure that they get the instruction and training they need to do complicated medical tasks.”
In addition to helping with home health care and activities of daily living, transportation is another main role provided by family caregivers. That’s because many senior care recipients can’t or won’t drive themselves. Options that can ease the burden on caregivers include volunteer driver programs and community transportation programs.
The scorecard found that states have lots of room to improve when it comes to transportation policies, but it listed five standouts — Colorado, South Carolina, California, Massachusetts and Washington — that offer more than the rest.
Then there's the money issue. Regardless of the specific tasks caregivers do, caregiving can be costly. Caring.com’s Family Caregiver Journey Survey this year revealed that more than four in 10 family caregivers spent at least $5,000 in out-of-pocket costs related to caregiving in the past year, and 25 percent of caregivers surveyed spent at least $10,000.
Why Some States Lack Adequate Support for Family Caregivers
“One of the areas where we haven’t really been able to gain ground is the South,” says Grace Whiting, J.D., chief operating officer of the National Alliance for Caregiving (NAC), a coalition that includes Caring.com. “Part of the reason is that there is resistance to regulation … particularly in rural areas, where people tend to be very independent." In the case of family caregivers, this can manifest itself as an aversion to seeking or accepting any kind of outside help.
She points out that in the South, like the rest of the country, some states are better places for family caregivers than others.
In Mississippi, for example, a caregiving task force was created in 2014 to study and address the needs of those caring for the elderly and disabled. The task force’s efforts resulted in new legislation requiring hospitals to help teach family caregivers how to take care of loved ones after they're sent home.
“Southern states are starting to see that you can’t ignore the needs of caregivers,” Whiting says.
In some cases, those needs include medical training. That’s because it’s becoming increasingly common for family caregivers to perform medical tasks — such as injections, tube feedings and catheter care — that have traditionally been handled by nurses. In fact, among those who care for seniors, 43 percent who do these medical tasks have had zero training or preparation, according to Caregiving in the U.S. 2015, a report compiled by NAC.
“I once heard a family caregiver say that every time she gave her mom an injection, she didn’t know whether she was helping her or hurting her because she’d had no proper training,” Accius says.
Regardless of whether they're performing medical tasks, a major proportion of family caregivers of seniors help with activities of daily living — which include everyday routines like bathing, using the toilet and getting dressed. Many caregivers provide transportation to medical appointments and other outings, as well as running errands and cooking meals for their loved one. Most often, caregivers fulfill some combination of duties.
A Few Final Reminders
Regardless of where a family caregiver lives, Accius and Whiting emphasize that help is available. It may just be a matter of finding it.
For starters, the Family Caregiver Alliance offers a tool on its website — the Family Care Navigator — that can help caregivers identify useful agencies and resources in any state.
“Always remember to take care of yourself in the process of providing care — don’t lose your sense of identity,” Accius says. “It’s also important for caregivers to realize that it’s OK to ask for help and seek help—and that they are not alone.”