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

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.

Experiences of people with dementia and their caregivers during the COVID-19 pandemic in India: A mixed-methods study.

BACKGROUND: The COVID-19 pandemic has unprecedented consequences for the management of chronic diseases such as dementia. However, limited evidence exists on the condition of persons with dementia and their caregivers during the pandemic in lower-middle-income countries (LMICs). The study aimed to provide insights into the experiences of persons with dementia and their families during the early phases of the pandemic in India. METHODS: This study adopted a mixed-method approach. One hundred and four persons with dementia and their caregivers were evaluated via telephone using validated instruments and a semi-structured interview guide. We used the quantitative data collected to establish a baseline, whereas qualitative data were analysed thematically. RESULTS: The study revealed that persons with dementia and their caregivers experienced difficulties during the pandemic, which included worsening of behaviour, problems in accessing care, disruptions in functional activities and struggles in enforcing infection prevention contributing to caregiver distress. An important finding that emerged was the unchanging reality of caregiving for families. The relative success of the public health response to the COVID-19 pandemic contrasted with the lack of awareness and formal support for dementia. CONCLUSIONS: The COVID-19 pandemic has exposed the vulnerabilities of persons with dementia and their caregivers. This calls for a collaborative reframing of medical care and public health policies to address dementia care.