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Observational Study
. 2022;51(1):90-100.
doi: 10.1159/000519616. Epub 2022 Feb 18.

Cognition, Behavior, and Caregiver Stress in Dementia during the COVID-19 Pandemic: An Indian Perspective

Jayeeta Rajagopalan  1 , Faheem Arshad  2 , Priya Treesa Thomas  3 , Feba Varghese  2 , Saadiya Hurzuk  4 , Rakshith Maneshwar Hoskeri  5 , Renuka Bavikatti Ramappa  5 , Vasundharaa S Nair  3 , Avanthi Paplikar  2 , Shailaja Mekala  6 , Tejaswini S Manae  5 , Deepa Boralingana Palya Ramanna  2 , Gurrapu Rakesh  3 , Patel Vishal Ganeshbhai  2 , Shah Rutul Dhiren  2 , Shashidhar Komaravolu  7 , Chandrasekhar Kammammettu  8 , Girish N Rao  9 , Suvarna Alladi  2
Affiliations
Observational Study

Cognition, Behavior, and Caregiver Stress in Dementia during the COVID-19 Pandemic: An Indian Perspective

Jayeeta Rajagopalan et al. Dement Geriatr Cogn Disord. 2022.

Abstract

Objectives: Little is known regarding the cognitive and behavioral status of patients with dementia and their caregivers in lower middle-income countries during the COVID-19 pandemic. This study aimed to understand the impact of the pandemic on persons with dementia and their caregivers in India.

Methods: This was an observational study. A cohort of 66 persons with dementia and their caregivers were evaluated during the COVID-19 pandemic in 2 specialist hospitals in South India. Caregivers were interviewed at 2 distinct time points of the pandemic: during the national lockdown and 5 months after during later periods of the "cluster of cases" transmission phase. Participants were assessed via telephone utilizing validated instruments (Neuropsychiatric Inventory [NPI], Clinical Dementia Rating [CDR] Scale, and Depression, Anxiety and Stress Scale [DASS-21]) and a semi-structured questionnaire. The questionnaire documented sociodemographic information, clinical history, infection measures adopted, changes in caregiving routines, involvement in functional rehabilitation activities, and access to medical and long-term care support services.

Results: The 2-phase follow-up study found a significant worsening of behavior in dementia patients, demonstrated by a difference in the NPI sub-domain scores for anxiety (mean difference [standard deviation, SD] = -0.552 [1.993], t58 = -2.109, p = 0.039) and eating disturbances (mean difference [SD] = -1.121 [2.493], t59 = -3.424, p = 0.001). A relatively high proportion of patients developed anxiety (cumulative incidence = 24.53%) and eating disturbances (cumulative incidence = 26.92%), without having these symptoms at baseline. There was a trend toward an increase in proportion of persons with severe dementia (19.7% vs. 39.4%) on follow-up. Caregiver distress reported was significantly associated with neuropsychiatric symptoms (r = 0.712, p < 0.001) and dementia severity (ρ = 0.365, p = 0.004). In addition, difficulties in accessing medical care persisted between the 2 assessments, and there were statistically significant differences between functional rehabilitation activities such as indoor activities (p < 0.001), outdoor activities (p = 0.013), and physical exercises (p = 0.003) between baseline and follow-up.

Conclusion: Findings suggest interruption of functional rehabilitation activities and disruption in medical care services are likely to have had an adverse impact on patients with dementia and contributed toward caregiver distress.

Keywords: COVID-19; Caregiving; Cognition; Dementia; India; Lower middle-income countries; Pandemic.

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Conflict of interest statement

The authors have no conflicts of interest to declare.

Figures

Fig. 1
Fig. 1
Flow diagram of the recruitment process.
Fig. 2
Fig. 2
Comparison of NPI-CD at baseline and follow-up. NPI, Neuropsychiatric Inventory.
Fig. 3
Fig. 3
Functional rehabilitation involvement and access to dementia care-related services.
Fig. 4
Fig. 4
COVID-19 infection prevention measures adopted at follow-up.
See this image and copyright information in PMC

References

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    1. Alzheimer's and Related Disorder's Society of India Dementia India Report. 2010. Available from: http://ardsi.org/downloads/main report.pdf.
    1. Rajagopalan J, Huzruk S, Arshad F, Raja P, Alladi S. The COVID-19 long-term care situation in India. LTCcovid, international long-term care policy network, CPEC-LSE. 2020 May 30

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