Vulnerable Older Americans Aren’t Getting Adequate Care—Even With Paid Caregivers or Grown Children
Half of older parents who need daily care at home have unmet needs, and those with stepchildren are less likely to get help from their kids. Other at-risk groups include those with in-home caregivers or dementia, new studies show.
Half of older American parents who need help at home with daily activities are not getting that assistance, new analysis of the nationally representative National Health and Aging Trends Study (NHATS) data shows.1
“We find that unmet needs are quite high among older adults with care needs,” says Sarah Patterson of the University of Michigan’s Population Studies Center and lead author of the study. Unmet needs refer to going without things like showering, getting dressed or having clean laundry, or eating hot meals because of a lack of help, she explains.
Older people with paid in-home caregivers are more likely to go without such help than their peers in residential care facilities and are more likely to miss medication, sit in soiled clothing, or skip meals, finds another new study of the NHATS data.2 And older people with dementia face an especially high risk of unmet need, a third new study shows.3
Spouses and adult children provide most of the care for older Americans who need help; however older adults in stepfamilies are half as likely to get help from adult children than those with only biological children, a difference Patterson and colleagues call the “step gap” (see figure).
FIGURE. Older Parents With Only Biological Children Are More Than Twice as Likely to Receive Care From Their Adult Children Than Those in Stepfamilies
Source: Sarah E. Patterson et al., “Care Received and Unmet Care Needs Among Older Parents in Biological and Step Families,” The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 77, Supplement 1 (2022): S51-62.
“The step gap may show up because of complex relationships within stepfamilies, but it could also reflect a dilution in resources,” explains Patterson. “When there is remarriage, there are simply more parents who need care—pulling some adult children in multiple directions and forcing them to choose whom to support based on the time and money they have available.
“In the future, parents may have to shift how they find care—that is, begin to change their expectations of their children and instead rely on friends or other sources of care,” she suggests.
Older Adults With Paid Home Caregivers Are More Likely to Have Unmet Needs Than Those in Residential Care
Older adults receiving paid care in their homes face twice the odds of experiencing the consequences of unmet need than those living in residential care settings, such as a personal care homes or assisted living facilities, Meghan Jenkins Morales and Stephanie Robert of the University of Wisconsin – Madison find.4
Their study used 2015 and 2017 NHATS data to explore the relationship between negative consequences of unmet need and type of care arrangement, focusing on older adults receiving assistance with at least one self-care, mobility, or household activity because of their health or physical functioning.
In both years, the risk of having persistent unmet needs for care was more than four times higher among older adults receiving paid care in their homes compared with their peers in residential facilities.
Improving paid care arrangements to meet the needs of older adults should be a top priority, Jenkins Morales and Robert argue.
“Older adults receiving paid care face significant and consequential gaps in care, particularly in comparison to other care arrangements,” they write. Simple solutions such as installing grab bars and shower seats could improve access and independence, particularly for those who may be less comfortable receiving help bathing, they note.
Often, unmet needs involve not receiving enough hours of care or receiving poor quality care or care that does not match individual needs, such as help with laundry but not food preparation. Evidence shows that care is often insufficiently coordinated and that better communication among paid and unpaid caregivers and other health care providers is needed, they report.
Because of high costs, residential care is usually only an option for older adults with significant financial resources, Morales and Robert point out. Their findings can “provide additional impetus for advocates and policymakers to consider how to promote equitable access to quality residential care,” they argue.
Older Adults With Lower Incomes and Dementia Are More Likely to Face Consequences of Unmet Need
Due to the long and costly course of dementia, older adults with the condition often deplete their financial resources and ultimately become dual-enrollees, or participants in both Medicaid and Medicare, says Chanee Fabius of Johns Hopkins University.5 Dual enrollees typically have more limited financial resources and social support than those on Medicare alone, she explains.
Their study used 2011 to 2015 NHATS data on dual-enrollees with disabilities living in the community rather than residential care facilities. Among those receiving paid help, those with dementia faced higher odds of experiencing adverse consequences related to unmet care needs than those without dementia, they found. In addition, those with dementia were more likely to use paid help if they lived in a state with more generous Medicaid-related home- and community-based services.
These findings underscore the complexity of supporting dual-enrollees with dementia living in the community, Fabius explains.
Although Medicaid has shifted funds from nursing home services to home-based services, more than 700,000 people were on waitlists in 40 states in 2017, she reports. “Dual-enrollees may be unable to afford all the care they need, particularly the extensive assistance needed by people with more advanced dementia,” she says.
“Caregiving is often a collaborative effort between paid helpers and family and other unpaid caregivers,” she says, seconding Jenkins Morales and Robert’s call for better coordination and communication among those providing care.
“When there are gaps in care, family and unpaid caregivers are often left to help, especially those assisting an older adult living with dementia,” Fabius reports. “Caregivers may feel unprepared for this role and may be juggling other responsibilities, such as child care and paid employment.”
Fabius says the findings also demonstrate the need for more generous and accessible Medicaid home- and community-based services for low-income people with dementia, including expanded training and wage increases for paid caregivers.
Older People in Stepfamilies Are Less Likely to Receive Help From Adult Children
Increases in divorce and remarriage and declines in fertility mean that older parents today have fewer biological children and more stepchildren than previous generations, Patterson reports. “About one in eight older adults with activity limitations has a stepchild,” she says.
Adult children may feel less obligated to care for elderly stepparents or for parents they did not live with during childhood, Patterson notes.
Older adults in need of care who have only biological children are more than twice as likely to receive care from their adult children than older adults with any stepchildren, Patterson and colleagues show (see figure).6 Despite this “step gap,” they found the same high rate of unmet needs—about 50%—among the two groups.
“We know that family relationships don’t exist in isolation—we all operate within a family system,” says Patterson. “When research only looks at individual relationships, like between a mother and a daughter, it might miss the dynamics of the larger family system.”
The researchers used 2015 NHATS data on more than 2,000 older parents, examining the kind of care they receive, including who is providing care and whether they have unmet needs. The researchers also considered whether the parents received any paid care over the previous month, whether they were married or living with a partner, and whether they had received care from their partner over the previous month.
Even among those with partners who could care for them, older adults with only biological children were more likely to receive help from their adult children than those with a stepfamily, they found. But those living with partners had the same level of unmet need, whether they had any stepchildren or just biological children.
“Even if older people have a partner or an adult child to care for them, older adults in the U.S. still have high rates of unmet need for care,” Patterson says. “Partners and children are seen as front-line caregivers. We expect they will take care of older family members, and I think what our study says is that partners and children might need help doing so.”
That help could take many forms, from programs offering respite care and home modifications to skills training and counseling on benefits. Policies such as paid family leave, paid sick leave, and tax credits to help cover family caregiving expenses could make a difference, she notes.
 Sarah E. Patterson et al., “Care Received and Unmet Care Needs Among Older Parents in Biological and Step Families,” The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 77, Supplement 1 (2022): S51-62.
 Meghan Jenkins Morales and Stephanie A. Robert, “Examining Consequences Related to Unmet Care Needs Across the Long-Term Care Continuum,” The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 77, Supplement 1 (2022): S63–73.
 Chanee D. Fabius et al., “Associations Between Use of Paid Help and Care Experiences Among Medicare-Medicaid Enrolled Older Adults With and Without Dementia,” The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences (2022).
 Morales and Robert, “Examining Consequences Related to Unmet Care Needs Across the Long-Term Care Continuum.”