Presenter: Priya Treesa Thomas (National Institute of Mental Health and Neurosciences, NIMHANS, India)

Abstract for the International workshop on COVID-19 and Long-Term Care systems: What have we learnt and what policies do we need to strengthen LTC systems?, 6 and 7th December 2021

Watch the presentation (see 2:30):

Abstract

Background: Home-based care provided by families is the cornerstone of long-term care for persons with dementia in India. Limited evidence exists on the impact of the COVID-19 pandemic on persons with dementia and their caregivers in the country.

Objective: To understand the impact of the COVID-19 pandemic on persons with dementia and their caregivers during the COVID-19 pandemic.

Methods: A three-phase mixed-method study was conducted during the COVID-19 pandemic to explore the experiences of persons with dementia and their caregivers, over a period of 18 months. During phased relaxations of the nationwide lockdown in the country [Phase 1], 104 persons with dementia were evaluated for severity of dementia and behavioural disturbances using the Clinical Dementia Rating Scale (CDR) and Neuropsychiatric Inventory. Caregivers were interviewed using an in-depth semi-structured interview, as well as the Depression Anxiety and Stress Scale (DASS-21). During later periods of the ‘cluster of cases’ transmission phase [Phase 2, N=66], participants were followed-up using the same measures. Finally we re-assessed the cohort for clinical severity [N=65] and also explored the status of vaccination, 18 months after first phase [Phase 3]. The in-depth qualitative interviews carried out at baseline were analysed using thematic analysis and standard statistical methods were used to analyse changes from baseline to follow-up in dementia severity, behavioural symptoms and caregiver stress.

Results: Phase 1 findings revealed that persons with dementia experienced a number of challenges:  behavioural symptoms, difficulties in accessing care and interruptions in social and functional rehabilitation activities. Caregivers highlighted that care provision had always been a challenge, with the pandemic further exacerbating problems. Both Phase 2 and Phase 3 demonstrated a trend towards an increase in proportion of persons with severe dementia. There was a significant increase in anxiety and eating disturbances in the dementia cohort and these neuropsychiatric symptoms were associated with caregiver distress. In addition, there was a substantial reduction in functional rehabilitation and social activities during the pandemic.  

Conclusion: Our findings demonstrate that in the background of the COVID-19 pandemic, persons with dementia demonstrated disease progression and significant behavioral problems that correlated with an interruption in their care, functional and social activities. These challenges were associated with an increase in caregiver stress. Results indicate that while preventive measures are crucial to reduce risk of infection, simultaneous efforts have to made to address care-needs of persons with dementia during the pandemic. 

Co-authors: Priya Treesa Thomas¹, Jayeeta Rajagopalan², Faheem Arshad³, Feba Varghese³, H.M Rakshith⁴, Saadiya Hurzuk⁵, Megha Tiwari³, Vasundharaa S Nair¹, Chandrasekhar Kammammettu⁶, Adelina Comas-Herrera⁷ and Suvarna Alladi³

¹Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences (NIMHANS), India; ²Strengthening Responses to Dementia in Developing Countries (STRiDE), National Institute of Mental Health and Neurosciences (NIMHANS), India; ³Department of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), India; ⁴ Dementia Science Programme, National Institute of Mental Health and Neurosciences, Bangalore, India; ⁵Strengthening Responses to Dementia in Developing Countries (STRiDE) India, Alzheimer’s and Related Disorders Society of India, Hyderabad, India; ⁶Department of Neuropsychiatry and Geriatric Psychiatry, ASHA Hospital, Hyderabad, India; ⁷Care Policy and Evaluation Centre, London School of Economics and Political Science (LSE), London, UK 

Publications:

Rajagopalan, J., Arshad, F., Hoskeri, R. M., Nair, V. S., Hurzuk, S., Annam, H., Varghese, F., BR, R., Dhiren, S. R., Ganeshbhai, P. V., Kammammettu, C., Komaravolu, S., Thomas, P. T., Comas-Herrera, A., & Alladi, S. (2021). Experiences of people with dementia and their caregivers during the COVID-19 pandemic in India: A mixed-methods study. Dementia.