A new study shows that millions of unpaid family and friends caring for community-dwelling older adults face social isolation and loneliness: About 1 in 8 (12% or 2.8 million) have limited social connections and more than one-quarter (27% or 6.3 million) say they experience loneliness, according to a team from Johns Hopkins University.1
Caregivers Risk Declining Mental and Physical Health; Respite Care and Other Support May Help
A growing body of research suggests that prolonged isolation can take a toll on physical and mental health–an effect similar in magnitude to smoking or physical inactivity, the Johns Hopkins researchers report. Social isolation can hasten death by raising risks of high blood pressure, heart disease, obesity, weakened immunity, depression, and anxiety.
Using data from 2,100 participants in the 2022 National Study of Caregiving (NSOC) linked to the National Health and Aging Trends Study (NHATS), the study team, led by Yiqing Qian, described the experiences of 23.9 million family caregivers. They classified participants as socially isolated if they met at least one of the following criteria: living alone; not confiding in others in the previous year; not attending religious services in the previous month; and not participating in clubs, meetings, or group activities or volunteering in the past month. Participants who reported feeling lonely “every day, most days, or some days” were considered lonely.
The researchers found that caregivers who were male, in poor or fair health, and caring for spouses or people with dementia face a higher risk of social isolation or loneliness. They noted that those caring for a spouse compromised by dementia or other conditions have often lost the support of their primary social companion. Consistent with other studies, the Johns Hopkins team found that non-Hispanic Black and Hispanic caregivers were less likely to report loneliness compared to non-Hispanic white caregivers, which may reflect ethnic differences in community and family ties and support.
To counter isolation, the Johns Hopkins team recommends various types of interventions. Formal respite care services can give caregivers breaks from their duties, allowing them to reconnect with social contacts, participate in social activities they value, and attend religious services, they argue. Peer support groups comprised of other caregivers are an effective way to develop social connection through shared experiences, particularly for men.
The researchers also note that caring for older adults in the later stages of dementia or at the end of life brings heightened responsibilities that can exacerbate isolation and loneliness, making these caregivers high priority targets for support. In addition, they point out that some community programs could be adapted to engage both caregivers and older adults they care for, such as art and wellness activities at community centers, to bolster social connections and health.
Caregivers Reporting Better Health Are Also Less Socially Isolated
Not participating in community groups or activities appears to be an indicator that family caregivers are in poorer health, researchers at University of California, Davis; Arizona State University; and the University of Washington report.2
Using nationally representative data from 3,500 caregivers in the 2015 NSOC, the researchers, led by Janet Pohl, examined the relationship between social isolation and self-reported health in family caregivers of older adults. Self-reported health (on a 5-point scale from poor to excellent) is strongly related to actual health and well-being, numerous studies have shown.
They found that about 25% of caregivers in this sample were socially isolated (based on measures somewhat different from the ones used by the Hopkins study, including taking into account the number of close confidants and in-person visits with friends). The researchers also found that younger caregivers tended to be more socially isolated than older ones, a finding they said needs additional study to fully understand.
Caregivers who did not participate in community activities had significantly higher odds of reporting they were in poor health, the researchers found. They suggest community participation may be a key indicator of poor health and greater participation may boost mood and improve well-being. “Caregivers have been recognized as invisible patients and work is needed to bring caregiver health into focus for health care providers and systems,” the researchers write.
Caregivers' Anxiety and Depression Linked to Restricted Social Participation
A team from Case Western Reserve and University of Tennessee examined the link between restricted social activities and the mental health of caregivers using data from the 2017 NSOC.3 Led by Elliane Irani, the study included data on caregivers for older adults with dementia (541) and without (1,701).
They reported that any restriction on social activities was related to more symptoms of anxiety and depression and lower levels of psychological well-being for both groups of caregivers, but those caring for older adults with dementia “experienced stronger psychological repercussions from social activity restriction” than their counterparts. Visiting friends and family and attending religious services were key activities linked with symptoms of depression and anxiety for those caring for older people with dementia, while visiting friends and family was crucial for those whose care partners did not have dementia. By contrast, caregivers who had fewer restrictions on their social activities tended to indicate better psychological health, reporting to researchers that they felt confident and good about themselves, that their lives had meaning and purpose, and that they liked their living situation very much.
The research team recommends interventions that consider caregivers’ responsibilities and enable them to take part in social activities they consider meaningful to improve health and potentially improve the quality of care they provide.
Social Isolation Increases Over Time Even When Other Family Members and Friends Help Out
Support from other family and friends may provide short-term relief, reducing primary caregiver’s experience of social isolation, but the benefits diminish as months pass and social isolation tends to increase as caregiving continues regardless of the level of support, researchers from University of Texas Health Science Center at Houston and University of Southern California document.4
Using data from the 2015 and 2017 NSOC and NHATS on 782 primary caregivers and 1,003 secondary caregivers (helpers), the team, led by Jiaming Liang, identified three support patterns (low, medium, and high) based on numbers of helpers, types of tasks shared, and hours of care contributed per helper.
They linked higher levels of support to lower social isolation at the outset, but found social isolation still increased over the two-year follow-up period with support by family or friends continued. Depressive symptoms rose over time no matter the level of support from other family and friends. They found no strong differences by gender and race suggesting this pattern of increasing isolation and depression is widespread.
The researchers argue that simply having family "chip in" is inadequate to protect primary caregivers from social isolation. They echo the recommendations of the Johns Hopkins team: Respite services, peer support groups, and formal family care-coordination meetings to better share tasks and improve communication, potentially reducing stress for the primary caregiver. They suggest that policymakers and health care providers assess caregivers to identify those “who may be at greater risk of social isolation and mental health declines” in order to better target support.
1 Yiqing Qian, Mary Louise Pomeroy, Claire M. Petchler, Martha Abshire Saylor, Thomas K. M. Cudjoe, and Katherine A. Ornstein, “The Epidemiology of Social Isolation and Loneliness Among Family and Unpaid Caregivers of Older Adults: Findings From the National Study of Caregiving,” The Journals of Gerontology: Series B, Psychological Sciences and Social Sciences 80, no. 7 (2025): gbaf101. https://doi.org/10.1093/geronb/gbaf101
2 Janet S. Pohl, Janice F. Bell, Daniel J. Tancredi, and Nancy F. Woods, “Social Isolation and Health Among Family Caregivers of Older Adults: Less Community Participation May Indicate Poor Self-Reported Health,” Health & Social Care in the Community 30, no. 6 (2022): e6175-e6184. https://doi.org/10.1111/hsc.14054
3 Elliane Irani, Fei Wang, Kylie Meyer, Scott Emory Moore, and Kedong Ding, “Social Activity Restriction and Psychological Health Among Caregivers of Older Adults With and Without Dementia,” Journal of Aging and Health 36, no. 10 (2024): 678-88. https://doi.org/10.1177/08982643231209089
4 Jiaming Liang, Maria P. Aranda, Yuri Jang, and Kathleen H. Wilber, “The longitudinal Impacts of Secondary Caregiver Networks on Primary Caregiver's Social Isolation and depression,” Innovation in Aging 9, no. 7 (2025) https://doi.org/10.1093/geroni/igaf073
The National Health and Aging Trends Study and National Study of Caregiving are funded by a grant from the National Institute on Aging (U01AG032947).