Across the United States, millions of people are caring for elderly and disabled relatives. Estimates of exactly how many caregivers there are vary, with the Bureau of Labor Statistics reporting 37.1 million people offer unpaid eldercare, while Johns Hopkins estimated the number at closer to 24.1 million in 2022, up from 18.2 million in 2011.
Regardless of the specific number, these caregivers are devoting many hours — an estimated 36 billion of them per year — to helping loved ones cope with the effects of aging, as well as with serious conditions ranging from dementia to mobility issues and beyond. Many of these caregivers are still working themselves, have children under 18 at home, and are compromising their own retirement security to offer aid.
Many also need help — and they are clear on what kind. In fact, researchers from the University of Massachusetts, Boston, and the Center for Retirement Research recently conducted focus groups to ask what would most improve their lives, and several policies received broad support among the caregiving community.
Direct payments for caregiving
Direct payments to family care providers was the number one policy caregivers said would be beneficial. In total, 44% of focus group respondents said being paid for their services would be the most helpful policy change for them.
Black and Hispanic caregivers were especially likely to favor direct payments, in part because they are often younger and devote an average of 60 hours monthly to caregiving, which impacts their ability to work. Still, direct payments were broadly supported. “We don’t have unlimited funds,” one focus-group participant said. “While mom was sick, it would’ve helped.”
While USA.gov indicates some caregivers are eligible for direct payments through Medicaid or long-term care insurance, most caregivers don't qualify, as Medicaid is a means-tested benefit with narrow eligibility requirements, and only 3.3% of Americans have long-term care insurance.
If payments were offered to all caregivers, researchers estimate they'd add up to $76,000 over seven years (the average time spent caregiving). While this is a bargain compared to nursing home care, which averages $104,025 annually for a semi-private room, Medicare almost never covers nursing home care. Paying caregivers would be a significant new expense for the government, which is unlikely to receive support with the current focus on cutting costs.
Still, without direct payments, society will continue to rely on unpaid caregivers to make great sacrifices, both personally and financially. "Family caregivers are a scarce resource and should be protected and supported,” Susan Reinhard, the AARP senior vice president, said in an AARP article. “If they walked off the job, we’d be $600 billion short.”
Reimbursing caregiving costs
Financial concerns are a prime focus for caregivers, as the second most popular policy was reimbursement for the direct cost of caregiving. A total of 24% of focus group respondents said this would make a notable difference, with most reporting they'd like reimbursement for home modifications such as ramps as well as assistive devices like wheelchairs.
Angie's List estimates making a home wheelchair accessible can cost $2,000 to $75,000, depending on the types of upgrades. Unfortunately, Medicare often doesn't cover the costs, although it will pay for durable medical equipment like wheelchairs. Private insurance policies generally don't either. Some Medicaid programs do offer home modification waivers that pay for recommended modifications, but again, eligibility is strictly limited.
Unfortunately, for those who don't qualify for financial assistance, caregivers are left choosing between making their lives harder by offering support in a home that is not accessible, or paying out-of-pocket for the necessary modifications, which can further strain their finances.
Paid respite care
Finally, paid respite care was another popular policy, which 12% of caregivers said would be the most important change for them.
"It’d be very nice to have the time not to worry about being here … so I could go and do what I want," one caregiver said. Unfortunately, not being able to take breaks adds to caregiver stress, worsening the emotional strain and increasing loneliness.
The National Respite Network and Recess Center recommends that caregivers who need this type of support reach out to their State Respite Coalition or Lifespan Respite Program for advice on both programs and their area, as well as funding for respite care services.
Unfortunately, many caregivers simply don't have access to anyone who can provide them with time off, as their state provides few or no resources. Others are afraid to leave loved ones with low-paid providers who they fear may not be fully qualified to provide the necessary assistance.
Will caregivers get the help they need?
Unfortunately, all of the policies caregivers desire most would come at a substantial financial cost. As a result, caregivers are unlikely to see their desired changes for the foreseeable future.
Without the support they need from the government, those providing care to loved ones are left with few options but to turn to community groups, nonprofits, or other family members to find support in shouldering the significant burden they have taken on.
Local Area Agencies on Aging can be a helpful resource for those in need, and joining a caregiver support group could also provide social connections, emotional support, and access to helpful resources that could make caregiving just a little bit easier. While these are stopgap measures, they are better than nothing, and may be the best options available for now.
