Restricted accessResearch articleFirst published online 2025
Supporting U.S. Caregivers’ Mental Health: Analysis of Trends and Correlates Pre-COVID and COVID-Onward From the Health Information National Trends Survey,2018-2022
To compare correlates of mental distress among non-professional caregivers vs non-caregivers and evaluate trends in non-professional caregivers’ mental distress pre-vs COVID-onward.
Design
Cross-sectional study.
Setting
We used nationally representative data from multiple cycles of the Health Information National Trends Survey (HINTS) from 2018 to 2022.
Subjects
15 318 participants age 18 and older were included, comprising non-professional caregivers (n = 1387) and non-caregivers (n = 13 931). Professional caregivers and caregivers of child (ren) were excluded from this study.
Measures
The outcome (mental distress) was categorized based on the Patient Health Questionnaire-4 (PHQ-4) score. Caregivers were identified as those indicating that they provide care or make health care decisions for someone in a non-professional way.
Analysis
We analyzed the association between caregiving status and mental distress pre-COVID and COVID-onward and examined correlates of caregivers’ mental distress pre-COVID and COVID-onward through logistic regression models.
Results
Caregivers reported a higher mean PHQ-4 score than non-caregivers overall (|t| = 4.81, P < .001). Caregiving status was significantly associated with mental distress pre-COVID (OR = 1.47; 95% CI = 1.13-1.92; P < .01) and COVID-onward (OR = 1.51; 95% CI = 1.01-2.26; P < .05). Being in fair or poor health status was associated with a higher likelihood of mental distress pre-COVID (OR = 2.58, 95% CI = 1.31-5.09, P < .01), while having a college education or higher was associated with a lower likelihood of mental distress COVID-onward (OR = 0.46, 95% CI = 0.21-0.99, P < .05).
Conclusion
Caregiving continues to present significant risks for mental distress. The COVID-19 pandemic may continue to present risks to caregivers’ mental well-being, requiring policies and programs to improve caregiver mental health.
BomJBakxPSchutFVan DoorslaerE. The impact of informal caregiving for older adults on the health of various types of caregivers: a systematic review. Gerontol. 2019;59(5):e629-e642. doi:10.1093/geront/gny137
2.
StallNMKimSJHardacreKA, et al.Association of informal caregiver distress with health outcomes of community dwelling dementia care recipients: a systematic review. J Am Geriatr Soc. 2019;67(3):609-617. doi:10.1111/jgs.15690
3.
AARP and National Alliance for Caregiving. Caregiving in the US 2025. Washington, DC; 2025. doi:10.26419/ppi.00373.001
4.
ChangHYChiouCJChenNS. Impact of mental health and caregiver burden on family caregivers’ physical health. Arch Gerontol Geriatr. 2010;50(3):267-271. doi:10.1016/j.archger.2009.04.006
5.
CoreyKLMcCurryMKSetharesKABourbonniereMHirschmanKBMeghaniSH. Predictors of psychological distress and sleep quality in former family caregivers of people with dementia. Aging Ment Health. 2020;24(2):233-241. doi:10.1080/13607863.2018.1531375
6.
JohansenSCvancarovaMRulandC. The effect of cancer Patients’ and Their Family Caregivers’ physical and emotional symptoms on caregiver burden. Cancer Nurs. 2018;41(2):91-99. doi:10.1097/NCC.0000000000000493
7.
LiuYCChouMCChiangMC, et al.A biomarker of stress and self-reported caregiving distress predict poor quality of life in family caregivers of patients with heart failure. J Cardiovasc Nurs. 2024;39(6):543-551. doi:10.1097/JCN.0000000000001050
8.
KolodziejIWKCoeNBVan HoutvenCH. The impact of care intensity and work on the mental health of family caregivers: losses and gains. J Gerontol B Psychol Sci Soc Sci. 2022;77(Supplement_1):S98-S111. doi:10.1093/geronb/gbac031
9.
RafnssonSBShankarASteptoeA. Informal caregiving transitions, subjective well-being and depressed mood: findings from the English longitudinal study of ageing. Aging Ment Health. 2017;21(1):104-112. doi:10.1080/13607863.2015.1088510
10.
Committee on Family Caregiving for Older Adults Board on Health Care Services, Health and Medicine Division, National Academies of Sciences E and M. In: SchulzREdenJ eds. Families Caring for an Aging America. Washington, DC: National Academies Press (US); 2016. doi:10.17226/23606
11.
DangSPenneyLSTrivediR, et al.Caring for caregivers during COVID-19. J Am Geriatr Soc. 2020;68(10):2197-2201. doi:10.1111/jgs.16726
12.
IraniENiyomyartAHickmanRL. Family caregivers’ experiences and changes in caregiving tasks during the COVID-19 pandemic. Clin Nurs Res. 2021;30(7):1088-1097. doi:10.1177/10547738211014211
13.
FreedmanVACornmanJCCarrDLucasRE. Time use and experienced wellbeing of older caregivers: a sequence analysis. Gerontol. 2019;59(5):e441-e450. doi:10.1093/geront/gny175
14.
CohenSAKunickiZJNashCCDrohanMMGreaneyML. Rural-urban differences in caregiver burden due to the COVID-19 pandemic among a national sample of informal caregivers. Gerontol Geriatr Med. 2021;7:23337214211025124. doi:10.1177/23337214211025124
15.
TruskinovskyYFinlayJMKobayashiLC. Caregiving in a pandemic: COVID-19 and the well-being of family caregivers 55+ in the United States. Med Care Res Rev. 2022;79(5):663-675. doi:10.1177/10775587211062405
16.
RodriguesRSimmonsCSchmidtAESteiberN. Care in times of COVID-19: the impact of the pandemic on informal caregiving in Austria. Eur J Ageing. 2021;18(2):195-205. doi:10.1007/s10433-021-00611-z
17.
KentEEOrnsteinKADionne-OdomJN. The family caregiving crisis meets an actual pandemic. J Pain Symptom Manag. 2020;60(1):e66-e69. doi:10.1016/j.jpainsymman.2020.04.006
18.
ParmarJAndersonSDobbsB, et al.Neglected needs of family caregivers during the COVID-19 pandemic and what they need now: a qualitative study. Diseases. 2021;9(4):70. doi:10.3390/diseases9040070
19.
LeggettAKooHJParkBChoiH. The changing tides of caregiving during the COVID-19 pandemic: how decreasing and increasing care provision relates to caregiver well-being. J Gerontol B Psychol Sci Soc Sci. 2022;77(Supplement_1):S86-S97. doi:10.1093/geronb/gbac002
20.
LiQZhangHZhangM, et al.Prevalence and risk factors of anxiety, depression, and sleep problems among caregivers of people living with neurocognitive disorders during the COVID-19 pandemic. Front Psychiatr. 2021;11:590343. doi:10.3389/fpsyt.2020.590343
21.
GallagherSWetherellMA. Risk of depression in family caregivers: unintended consequence of COVID-19. BJPsych Open. 2020;6(6):e119. doi:10.1192/bjo.2020.99
22.
NgamasanaELZarwellMEberlyLGunnLH. Difference in the physical and mental health of informal caregivers pre- and post-COVID-19 national emergency declaration in the United States. SSM Popul Health. 2024;25:101609. doi:10.1016/j.ssmph.2024.101609
23.
CzeislerMÉDraneAWinnaySS, et al.Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: relationships to age, race/ethnicity, employment, and caregiver intensity. J Affect Disord. 2021;295:1259-1268. doi:10.1016/j.jad.2021.08.130
NugraheniSEHastingsJF. Family-based caregiving: does lumping Asian Americans together do more harm than good?J Soc Behav Health Sci. 2021;15(1):87-103. doi:10.5590/JSBHS.2021.15.1.07
28.
Santoyo-OlssonJCovinskyKECheslaCA, et al.Predictors of psychological distress among rural family/friend caregivers of people living with dementia in the United States: consequences of the COVID-19 pandemic. J Gerontol B Psychol Sci Soc Sci. 2024;79(2):gbad164. doi:10.1093/geronb/gbad164
29.
ShethKLorigKStewartAParodiJFRitterPL. Effects of COVID-19 on informal caregivers and the development and validation of a scale in English and Spanish to measure the impact of COVID-19 on caregivers. J Appl Gerontol. 2021;40(3):235-243. doi:10.1177/0733464820971511
ScalesK. It is time to resolve the direct care workforce crisis in long-term care. Gerontol. 2021;61(4):497-504. doi:10.1093/geront/gnaa116
32.
ZengBRivadeneiraNAWenASarkarUKhoongEC. The impact of the COVID-19 pandemic on internet use and the use of digital health tools: secondary analysis of the 2020 health information national trends Survey. J Med Internet Res. 2022;24(9):e35828. doi:10.2196/35828
33.
ZhuYJhaSCShuttaKH, et al.Psychological distress and metabolomic markers: a systematic review of posttraumatic stress disorder, anxiety, and subclinical distress. Neurosci Biobehav Rev. 2022;143:104954. doi:10.1016/j.neubiorev.2022.104954
34.
KroenkeKSpitzerRLWilliamsJBWLöweB. An ultra-brief screening scale for anxiety and depression: the PHQ–4. Psychosomatics. 2009;50(6):613-621. doi:10.1016/S0033-3182(09)70864-3
35.
Westat. Health Information National Trends Survey 5 (HINTS 5) cycle 2 methodology report HINTS 5-Cycle 2 methodology report; 2018.
36.
ErvinJFleitas AlfonzoLTaoukYMaheenHKingT. Unpaid caregiving and mental health during the COVID-19 pandemic—A systematic review of the quantitative literature. PLoS One. 2024;19(4):e0297097. doi:10.1371/journal.pone.0297097
37.
ZwarLKönigHHHajekA. Consequences of different types of informal caregiving for mental, self-rated, and physical health: longitudinal findings from the German ageing survey. Qual Life Res. 2018;27(10):2667-2679. doi:10.1007/s11136-018-1926-0
38.
BaytakSDogru-HuzmeliEUysalHH. The effect of the COVID-19 pandemic on the caregiving burden of individuals caring for patients with chronic neurological diseases. Work. 2024;79:1-12. doi:10.3233/wor-230710
39.
HoritaNFukumotoT. Global case fatality rate from COVID 19 has decreased by 96.8% during 2.5 years of the pandemic. J Med Virol. 2023;95(1):e28231. doi:10.1002/jmv.28231
40.
PillemerSDavisJTremontG. Gender effects on components of burden and depression among dementia caregivers. Aging Ment Health. 2018;22(9):1162-1167. doi:10.1080/13607863.2017.1337718
41.
ChamCQIbrahimNSiauCS, et al.Caregiver burden among caregivers of patients with mental illness: a systematic review and meta-analysis. Healthcare. 2022;10(12):2423. doi:10.3390/healthcare10122423
42.
SchulzRSherwoodPR. Physical and mental health effects of family caregiving. Am J Nurs. 2008;108(9):23-27. doi:10.1097/01.NAJ.0000336406.45248.4c
43.
ChenXSLydonEAMathiasVFRogersWAMudarRARajM. Loneliness among older caregivers: an analysis of the 2020 California health interview survey. J Appl Gerontol. 2025;44(7):1193-1204. doi:10.1177/07334648241301484
44.
StokesJEPattersonSE. Caregiving and self-esteem in mid and later life: is there variation by age, parental status, and gender?Int J Aging Hum Dev. 2023;97(3):306-326. doi:10.1177/00914150221128976
ArcherJReiboldtWClaverMFayJ. Caregiving in quarantine: evaluating the impact of the Covid-19 pandemic on adult child informal caregivers of a parent. Gerontol Geriatr Med. 2021;7:2333721421990150. doi:10.1177/2333721421990150
47.
LeiLLeggettANMaustDT. A national profile of sandwich generation caregivers providing care to both older adults and children. J Am Geriatr Soc. 2022;71:799-809.
48.
HorowitzABoernerK. Long-distance caregiving: unique challenges and service needs. In: Later-Life Social Support and Service Provision in Diverse and Vulnerable Populations: Understanding Networks of Care; 2017:136-154.
49.
DuongMTKarlawishJ. Caregiving at a physical distance: initial thoughts for COVID 19 and beyond. J Am Geriatr Soc. 2020;68(6):1170-1172. doi:10.1111/jgs.16495
50.
NganganaPCDavisBLBurnsDPMcGeeZTMontgomeryAJ. Intra family stressors among adult siblings sharing caregiving for parents. J Adv Nurs. 2016;72(12):3169-3181. doi:10.1111/jan.13065
51.
RurkaMJill SuitorJGilliganM. The caregiver identity in context: consequences of identity threat from siblings. J Gerontol B Psychol Sci Soc Sci. 2021;76(8):1593-1604. doi:10.1093/geronb/gbaa099
52.
BristolAAMataACMickensM, et al.“You feel very isolated”: effects of COVID-19 pandemic on caregiver social connections. Gerontol Geriatr Med. 2021;7:23337214211060166. doi:10.1177/23337214211060166
53.
Robinson LaneSGLeggettANJohnsonFU, et al.Caregiving in the COVID 19 pandemic: family adaptations following an intensive care unit hospitalisation. J Clin Nurs. 2024;33(1):203-214. doi:10.1111/jocn.16560
54.
LongacreMLMillerMFFangCY. Racial and ethnic variations in caregiving-related physical, emotional, and financial strain during COVID-19 among those caring for adult cancer patients. Support Care Cancer. 2021;29(7):4137-4146. doi:10.1007/s00520-020-05933-9
55.
SwartzKCollinsLG. Caregiver care. Am Fam Physician. 2019;99(11):699-706.
56.
LeeJAKimHJJuE, et al.A culturally and linguistically appropriate telephone support intervention for diverse family caregivers of persons with dementia during the COVID-19 pandemic. J Fam Nurs. 2022;28(3):231-242. doi:10.1177/10748407221106531
57.
TsapanouAPapatriantafyllouJDYiannopoulouK, et al.The impact of COVID‐19 pandemic on people with mild cognitive impairment/dementia and on their caregivers. Int J Geriatr Psychiatr. 2021;36(4):583-587. doi:10.1002/gps.5457
58.
JaywantAGunningFMOberlinLE, et al.Cognitive symptoms of Post–COVID-19 condition and daily functioning. JAMA Netw Open. 2024;7(2):e2356098. doi:10.1001/jamanetworkopen.2023.56098
59.
DiotaiutiPValenteGManconeS, et al.Effects of cognitive appraisals on perceived self-efficacy and distress during the COVID-19 lockdown: an empirical analysis based on structural equation modeling. Int J Environ Res Publ Health. 2023;20(7):5294. doi:10.3390/ijerph20075294
60.
CohenSASabikNJCookSKAzzoliABMendez-LuckCA. Differences within differences: gender inequalities in caregiving intensity vary by race and ethnicity in informal caregivers. J Cross Cult Gerontol. 2019;34(3):245-263. doi:10.1007/s10823-019-09381-9
61.
OrnsteinMTCarusoCC. The social ecology of caregiving: applying the social–ecological model across the life course. Int J Environ Res Publ Health. 2024;21(1):119. doi:10.3390/ijerph21010119
62.
JinKNeubeckLKooFDingDGullickJ. Understanding prevention and management of coronary heart disease among Chinese immigrants and their family carers: a socioecological approach. J Transcult Nurs. 2020;31(3):257-266. doi:10.1177/1043659619859059
63.
UtzRL. Caregiver respite: an essential component of home & community-based long-term care. JAMDA. 2022;23(2):320-321. doi:10.1016/j.jamda.2021.12.020
64.
IottBRajMPlattJAnthonyD. Family caregiver access of online medical records: findings from the health information national trends survey. J Gen Intern Med. 2020;35(11):3267-3269.
65.
UtzRL. Caregiver respite: an essential component of Home- and community-based long-term care. J Am Med Dir Assoc. 2022;23(2):320-321. doi:10.1016/j.jamda.2021.12.020
66.
RoseMSNoelkerLSKaganJ. Improving policies for caregiver respite services. Gerontol. 2015;55(2):302-308. doi:10.1093/geront/gnu120
67.
SwartzellKLFultonJSCrowderSJ. State-level medicaid 1915(c) home and community-based services waiver support for caregivers. Nurs Outlook. 2022;70(5):749-757. doi:10.1016/j.outlook.2022.06.005
68.
SöylemezBAÖzgülEKüçükgüçlüÖYenerG. Telehealth applications used for self-efficacy levels of family caregivers for individuals with dementia: a systematic review and meta-analysis. Geriatr Nurs. 2023;49:178-192. doi:10.1016/j.gerinurse.2022.12.001
69.
OgunjesaBGaoXRajM. Factors influencing caregivers’ use of respite care services: secondary analysis of the national study of caregiving. J Appl Gerontol. 2024;43(8):1100-1110. doi:10.1177/07334648241229574
70.
LiJ. Digital technologies for mental health improvements in the COVID-19 pandemic: a scoping review. BMC Public Health. 2023;23(1):413. doi:10.1186/s12889-023-15302-w
71.
ChiNCDemirisG. A systematic review of telehealth tools and interventions to support family caregivers. J Telemed Telecare. 2015;21(1):37-44. doi:10.1177/1357633X14562734
72.
RajMIottB. Characterizing telehealth use in the US: analysis of the 2022 health information national trends survey. Am J Manag Care. 2024;30(1):50-56. doi:10.37765/ajmc.2024.89486
73.
MolfenterTHeitkampTMurphyAATapscottSBehlmanSCodyOJ. Use of telehealth in mental health (MH) services during and after COVID-19. Community Ment Health J. 2021;57(7):1244-1251. doi:10.1007/s10597-021-00861-2
74.
GriffithsPCKovalevaMHigginsMLangstonAHHepburnK. Tele-savvy: an online program for dementia caregivers. Am J Alzheimers Dis Other Demen. 2018;33(5):269-276. doi:10.1177/1533317518755331
75.
KhubchandaniJBreyRKoteckiJKleinfelderJAndersonJ. The psychometric properties of PHQ-4 depression and anxiety screening scale among college students. Arch Psychiatr Nurs. 2016;30(4):457-462. doi:10.1016/j.apnu.2016.01.014
76.
ZhouSOgunjesaBARajM. Mental health outcomes of Immigrant- and US-Born caregivers: california health interview survey, 2019–2020. Am J Public Health. 2024;114(S2):219-232. doi:10.2105/AJPH.2023.307396
77.
OlveraRGSwobodaCMJosephJJBose-BrillSMcAlearneyASWalkerDM. Individuals’ desire for social needs sharing among healthcare providers: findings from the 2022 health information national trends survey. J Gen Intern Med. 2025. doi:10.1007/s11606-024-09339-9
78.
VolkmanJELugerTMHarveyKLL, et al.The national cancer Institute’s health information national trends survey [HINTS]: a national cross-sectional analysis of talking to your doctor and other healthcare providers for health information. BMC Fam Pract. 2014;15(1):111. doi:10.1186/1471-2296-15-111
79.
RajMChenTIottBAnthonyD. Changes in caregivers’ use of the online medical record Pre- and Post-COVID: analysis of the health information national trends survey, 2018–2022. Med Care Res Rev. 2025;82(2):184-194. doi:10.1177/10775587241298029
80.
JensenAJ. Emerging adulthood (s): the cultural psychology of a new life stage. In: Bridging Cultural and Developmental Approaches to Psychology. Oxford University Press; 2010:255-275. doi:10.1093/acprof:oso/9780195383430.003.0012
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