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 Rutul; Ganeshbhai, Patel Vishal; Kammammettu, Chandrasekhar; Komaravolu, Shashidhar; Thomas, Priya; Comas-Herrera, Adelina; Alladi, Suvarna

doi:10.1177/14713012211035371

Cited by 23 publications

(25 citation statements)

References 31 publications

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“…[11][12][13] There is emerging evidence of the impact of the pandemic on carers. Qualitative studies have highlighted that for carers, the pandemic exacerbated an already di cult situation having a negative impact on well-being 12,[14][15][16][17] . Given the unprecedented situation and the speed in which data were collected, some quantitative studies just focused on reporting data collected during the pandemic; for example, rates of anxiety, depression, and stress in carers during periods of lockdown/con nement.…”

Section: Introductionmentioning

confidence: 99%

Impact of COVID-19 on carers of people with dementia in the community: Findings from the IDEAL cohort

Quinn

Gamble

Parker

et al. 2022

Preprint

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Background Unpaid carers for people with dementia play a crucial role in society. Emerging evidence suggests the COVID-19 pandemic has negatively impacted on carers. Objective To explore the impact of the COVID-19 pandemic on carers for community-dwelling people with dementia and compare responses with pre-pandemic data. Methods Data were collected between September 2020 and April 2021 in England and Wales. Carers were identified from the IDEAL cohort and data were collected either through the telephone, video conferencing or an online questionnaire. Responses from 242 carers were compared against benchmark data from the IDEAL cohort. Analyses were conducted for the full sample of carers and for the spousal/partner carers only. Results 48.8% of carers identified their healthcare needs were negatively affected during the pandemic. Compared with pre-pandemic data carers were more optimistic and had higher social contact with relatives. There were changes in the methods carers used for contacting relatives and friends. Carers were more lonely and experienced less life satisfaction. Most carers coped very or fairly well during the pandemic. There was little impact on carers’ experience of caregiving, although carers felt trapped by the person’s dementia. There was little difference in the experiences of spousal/partner carers and the full sample. Conclusions To some extent carers were coping with the pandemic but clearly would benefit from support in terms of alleviating feelings of loneliness and increasing life satisfaction. Services need to consider how to improve access to health care under conditions such as those experienced during the pandemic.

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Section: Introductionmentioning

confidence: 99%

Impact of COVID-19 on carers of people with dementia in the community: Findings from the IDEAL cohort

Quinn

Gamble

Parker

et al. 2022

Preprint

View full text Add to dashboard Cite

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“…Coherent studies on the status of patients with dementia or memory disorders were carried out in countries worldwide, such as India, Spain, the United States, and Argentina. However, most of these studies adopted semi-structured interviews or self-designed questionnaires ( Cohen et al, 2020 ; Goodman-Casanova et al, 2020 ; Rajagopalan et al, 2021 ; Rising et al, 2021 ) that may lack wide applicability and representativeness. In one of our previous studies, we interviewed 787 patients and their caregivers using widely used assessment scales such as neuropsychiatric inventory (NPI), Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder Scale (GAD-7), and Relative Stress Scale (RSS).…”

Section: Introductionmentioning

confidence: 99%

The Neuropsychiatric Changes After COVID-19 Quarantine in Patients With Cognitive Impairment and Their Caregivers in Chongqing, China: A Cohort Study

Yuan

Zhang

Yao

et al. 2022

Front. Aging Neurosci.

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BackgroundThe follow-up study on neuropsychiatric changes after the lifting of coronavirus disease 2019 (COVID-19) quarantine in patients with cognitive impairment and their caregivers is still lacking, and relative information is needed to formulate more comprehensive healthcare prevention measures worldwide.AimsTo provide data on the changes in neuropsychiatric performance after the lifting of COVID-19 quarantine in patients with cognitive disorders and their caregivers.MethodsTwo surveys in Chongqing, China were conducted via telephonic interview with 531 patients and their caregivers. The baseline survey was performed from February 11 to 23, 2020, and the follow-up was from October 24 to November 9, 2020. The data of neuropsychiatric symptoms (NPSs), sleep, nutrition, and chronic diseases of patients, as well as the burden of care, anxiety, and depression of caregivers were evaluated.ResultsSignificant alleviation of NPSs after the lifting of COVID-19 quarantine was observed in patients with mild cognitive impairment (MCI) and dementia (both P < 0.05). Compared with baseline, the prevalence for NPSs of all participants dropped from 57.94 to 38.82%. Among NPS subdomains, apathy displayed the biggest decline at follow-up by 10.72%, followed by nighttime behavior by 8.65%. Mixed effect generalized estimation equation analysis showed significant amelioration in hallucination, depression, apathy, irritability, aberrant motor behavior, and nighttime behavior (all P < 0.05), with the most prominent changes in nighttime behavior and apathy. Among the patients with unsatisfactory control of chronic disease, the medication adherence rate dropped by approximately 30% after the lifting of quarantine. More importantly, around 13% increase of care burden was observed among the caregivers at follow-up, with both depression and anxiety rising by nearly 4%.ConclusionThe prolonged quarantine may exacerbate NPS in patients with memory disorders, while the care burden and mental stability of the caregivers after the pandemic should also be concerned.

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“…The costs, consequences, and realities of providing unpaid care for PLWD in LMIC contexts like Jamaica is under-researched (Ferri & Jacob, 2017; Prince et al, 2009; Wimo et al, 2017), and there is a further paucity of evidence about the potentially complex realities of caregivers in LMIC contexts during a crisis (Rajagopalan et al, 2021). Such evidence is crucially important for developing appropriate responses and management strategies that are sensitive to the needs of both PLWD and their caregivers.…”

Section: Introductionmentioning

confidence: 99%

The Experiences of Caregivers of Persons Living with Dementia in Jamaica during COVID-19

Stubbs

Govia

Robinson

et al. 2021

Gerontology and Geriatric Medicine

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This article provides descriptive insights of the experiences of family caregivers of persons living with dementia during the COVID-19 pandemic. Data were generated as part of a qualitative cross-national project to explore the costs and consequences of providing unpaid dementia care. Participants in Jamaica, who were recruited using community gatekeepers, information booths at health fairs, conferences, and other outreach events, were contacted by telephone to discuss their experiences of the pandemic. When face-to-face in-depth interview data collection was suspended due to the pandemic, ethical approval was received to contact all research participants who were informal unpaid family caregivers, both those whose care recipients had died and those who were active caregivers ( N = 19). Participants in this study were the 10 active family caregivers ( n F = 8; aged 45+; 60% from high socio-economic status). Their updates and reflections during these calls were documented in fieldnotes and analyzed for key themes. Data showed that the pandemic has illustrated the direct costs, both financial and otherwise, that informal dementia carers bear in Jamaica. It also intensified pre-existing challenges faced by family carers. We provide recommendations for sustainable support for family carers.

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

Cited by 23 publications

References 31 publications

Impact of COVID-19 on carers of people with dementia in the community: Findings from the IDEAL cohort

Impact of COVID-19 on carers of people with dementia in the community: Findings from the IDEAL cohort

The Neuropsychiatric Changes After COVID-19 Quarantine in Patients With Cognitive Impairment and Their Caregivers in Chongqing, China: A Cohort Study

The Experiences of Caregivers of Persons Living with Dementia in Jamaica during COVID-19

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