The Relationship Between COVID 19 Anxiety and Dementia Caregivers Burden and Suffering
Open accessAbstract
The impact of COVID-19 on dementia caregivers is gaining new interest. It is unknown how the pandemic has impacted caregivers’ burden and existential suffering. Analyses were performed on data for dementia caregivers (n=89) enrolled in the Indiana University Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) pilot trials. Individuals were primary caregivers of a family member with dementia and had clinically significant anxiety measured by a GAD-7 score >10 or between 5-9 with reported interference in life. COVID-19 anxiety was measured using the NIH CoRonavIruS Health Impact Survey (CRISIS) questions. Caregivers were on average 55.2 years of age with 56.2% being child or child-in-law, 71.9% were white and 24.7% were Black. Mean burden scores, measured by the Zarit Burden Index, were higher (44.29) compared to means reported across the literature (26.7) indicating the sample experienced higher than normal levels of burden. Mean existential suffering scores measured by the subscale of Experience of Suffering Scale were lower (9.37) compared to means across the literature (11.5) indicating that overall participants experienced lower levels of existential suffering compared to those in previous studies. A significant relationship was found between COVID-19 anxiety and burden levels (x2= 9.07, p<0.05), with higher levels of COVID-19 anxiety associated with greater burden. A non-significant relationship was found between COVID-19 anxiety and existential suffering (x2=5.99, p=0.11). Results highlight the impact of COVID-19 anxiety as an external stressor on dementia caregiving. and the importance of considering context of external stressors when implementing intervention protocols for caregivers of individuals with dementia.
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The CRISIS survey was administered only to the second cohort and found a significant relationship between COVID-19 anxiety and caregiver burden overall.
“The NIH Coronavirus Health Impact Survey (CRISIS) was administered to participants in the second cohort (only) to test for pandemic effects, which found a significant relationship between COVID-19 anxiety and caregiver burden overall(Lucas et al., 2021).”
From Feasibility and acceptability of a telephone-based ACT intervention for caregivers (TACTICs) of adults with Alzheimer's disease and related dementias (ADRD): a randomized pilot during the COVID-19 pandemic. (2025) · cites this paper as Lucas et al., 2021
The paper’s text (pp. 1049–1050) says COVID-19 anxiety was measured using CRISIS questions and reports a significant association with caregiver burden (χ²=9.07, p<0.05). It describes caregivers enrolled in TACTICs pilot trials but does not say that CRISIS was administered only to a second cohort. (LLM, conf=0.88)
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Hockemeyer, N. G., Johns, S. A., Judge, K. S., Baucco, C., Gowan, T., Slaven, J. E., & Fowler, N. R. (2025) · Aging & Mental Health · doi:10.1080/13607863.2025.2453823 · Cited by 4 · see citing works
“Studies have shown that the COVID-19 pandemic exacerbated these negative psychological factors (Carbone et al. 2021; Hwang et al. 2021; Lucas et al. 2021; Masoud et al. 2022), with 96% of caregivers reporting the pandemic affected their anxiety (Masoud et al. 2022), and up to 44% of caregivers…”
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Chiu, P., Hwang, Y. H., Siddiq, F., & Taylor, B. D. (2025) · Transportation Research Record Journal of the Transportation Research Board · doi:10.1177/03611981251365905
“The program matches older adults with university students and has reduced economic and social exclusion risk for both younger and older participants ( 40 , 41 ).”
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- Authors
- Lucas, K., Batista-Malat, E., Park, S., Johns, S., Fowler, N., & Judge, K.
- Affiliations
- Cleveland State University (US)
- Regenstrief Institute (US)
- Indiana University School of Medicine (US)
- Indiana University Indianapolis (US)
- Venue
- Innovation in Aging
- Publisher
- Oxford University Press (OUP)
- Published
- 2021-12-01
- Volume
- 5
- Issue
- Supplement_1
- Pages
- 1049-1050
- ISSN
- 2399-5300 (ISSN-L)
- PMC
- PMC8682508
- OpenAlex
- W4200616846
- Cited by
- 1
- References
- 0
- Citations by year
- 2025: 1
- FWCI
- 0.00
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Innovation in Aging (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- IUScholarWorks (Indiana University) (submittedVersion, cc-by)
- Topics
- Social Sciences › Psychology › Clinical Psychology › COVID-19 and Mental Health
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- COVID-19 anxiety, dementia caregivers, caregiver burden, existential suffering, family caregivers, external stressors, COVID-19 pandemic impact
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