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

Rajagopalan, Jayeeta, Arshad, Faheem, Hoskeri, Rakshith Maneshwar, Nair, Vasundharaa S, Hurzuk, Saadiya, Annam, Harikrishna, Varghese, Feba, Br, Renuka, Dhiren, Shah R, Ganeshbhai, Patel V, Kammammettu, Chandrasekhar, Komaravolu, Shashidhar, Thomas, Priya T, Comas-herrera, Adelina ORCID: 0000-0002-9860-9062 and Alladi, Suvarna (2022) Experiences of people with dementia and their caregivers during the COVID-19 pandemic in India: a mixed-methods study. Dementia, 21 (1). 214 - 235. ISSN 1471-3012

[img] Text (Experiences of persons with dementia manuscript_Phase 1 India_JR (002)) - Accepted Version
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Identification Number: 10.1177/14713012211035371

Abstract

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.

Item Type: Article
Official URL: https://journals.sagepub.com/home/dem
Additional Information: © 2021 The Authors
Divisions: Personal Social Services Research Unit
Subjects: H Social Sciences > HV Social pathology. Social and public welfare. Criminology
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Date Deposited: 09 Aug 2021 13:39
Last Modified: 01 Feb 2022 12:06
URI: http://eprints.lse.ac.uk/id/eprint/111570

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