Caring for a person with dementia during the COVID-19 pandemic: a qualitative study with family care-givers

Cipolletta, Sabrina; Morandini, Benedetta; Tomaino, Silvia Caterina Maria

doi:10.1017/s0144686x21000696

Cited by 17 publications

(37 citation statements)

References 51 publications

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“…Caregivers in our study reported the increased restrictions put a strain on the unmet needs of the existing care model in Taiwan and created challenges to the reorganization of daily routines and care relationships for family caregivers. These findings have also been reported for FCGs of PLWDs in Italy [16] and Norway [17], who reported COVID-19 restrictions increased caregiver burden due to difficulties in maintaining daily activities, increased emotional stress, and difficulty in reaching for help [16,17].…”

Section: Discussionsupporting

confidence: 74%

Experiences of family caregivers of persons living with dementia with and without a smart- clothes assisted home nursing program during the heightened COVID-19 alert

et al. 2022

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Background The COVID-19 pandemic has required restrictions of daily activities, which has been found to impact the lives of persons living with dementia (PLWDs) and their family caregivers, who have multiple care demands. The lack of relevant studies in Taiwan emphasized the need to explore the experiences of family caregivers of older PLWDs faced with the intensified restrictions to control the spread of COVID-19, and the impact of the availability of a smart-clothes home nursing program. Methods This qualitative study used semi-structured interviews with family caregivers of older PLWDs. Participants were recruited from dementia clinics of a medical center in northern Taiwan from a subset of a sample from a larger study on smart-clothes assisted home nursing care. A total of 12 family caregivers who participated in the original study were interviewed during the follow-up period; seven family caregivers of a PLWD wearing a smart-vest, which transmitted information to a home care nurse; five caregivers of a PLWD not wearing a smart-vest. Interviews were conducted by telephone because the conditions of the pandemic prevented face-to-face interviews. Recorded interviews were transcribed and analyzed using content analysis. Results Interview data showed family caregivers’ felt the care recipient’s health was compromised and functional conditions intensified as Covid-19-related pandemic restrictions increased. Specific concerns included a lack social interactions, decreased daily activity levels, loss of interest and lack of motivation for activities, increased mood and behavioral problems, a decline in physical function and an increase in health problems. Family caregivers were also impacted by these restrictions, with significant increases in severity of caregiver role strain, including feeling trapped, a lack of in-home support, profound powerlessness, and worries about the PLWD contracting the coronavirus. The smart-clothes assisted home nursing care program offered supplementary support to family caregivers by providing on-time interactions, helping them manage health problems, enhancing predictability of the care recipient’s behaviors, and providing caregivers with emotional support. Conclusions The findings of this study support alternative care such as implementation of technology-assisted home health services to meet caregiver needs to facilitate family caregiving of PLWDs during the necessary restrictions in activities implemented during the COVID-19 pandemic. Trial registration ClinicalTrials.gov Protocol Record NCT05063045.

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Section: Discussionsupporting

confidence: 74%

Experiences of family caregivers of persons living with dementia with and without a smart- clothes assisted home nursing program during the heightened COVID-19 alert

et al. 2022

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“…The result of social isolation and anxiety along with the possibility of behavioral changes and confusion place persons with dementia at risk of being hospitalized and further exposed to COVID-19 ( Barclay & Rees, 2020 ; Livingston, et al, 2020 ). In addition, families caring for a person with dementia may feel cut off, overwhelmed and anxious, particularly if loved ones are living with complex health conditions and are at greater risk especially if they are aging at home and not in a long-term care facility ( Cipolleetta, et al, 2021 ; Cruz, et al, 2018 ; Hwang, et al, 2021 ; Lombo, et al, 2021 ; Ramos, et al, 2020 ; Tulloch, et al, 2021 ; Werner, et al, 2021 ; Zucca, et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Psychodrama with persons with dementia on zoom: Proof of concept

2022

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COVID-19 pandemic and subsequent lockdowns created a global public health crisis generating mental health problems including social isolation, stress, and anxiety especially for persons with dementia and their carers. This article reports on the use of digital technology to maintain social connectivity via a virtual group session that focused on the topic of “what is home.” Participants in this session included 16 day-care center clients representing an immigrant community identified with mild to moderate cognitive impairment. A trained psychodrama therapist conducted the virtual group meeting based on five key techniques: spectrogram, role reversal, doubling, mirroring, and soliloquy. The NVivo software was used for the qualitative analysis of the transcribed video recording to identify key themes based on grounded theory methodology. Zooming from home, clients engaged in significant social interaction. Findings of the NVivo analysis identified the following themes of “what is home”: Emotions and home, Home is family, Home is community, and Reminiscence (with objects and traditions). Findings suggest that digital interactive technologies, like Zoom, enhance social connectivity thus mitigating the negative impact of social isolation for persons with dementia especially during pandemic lockdowns. Our pilot findings based on virtual group meetings from home demonstrate that participants can express significant emotive capacity and enhanced connectivity with one another despite a diagnosis of mild to moderate dementia. While larger studies are needed to confirm these findings, we suggest that this methodology may be used to support persons with dementia not only in times of pandemics but also as an addition to other community and home care services. Changes in reimbursement policies to include these innovative home services may be helpful in building more resilient communities for the more highly vulnerable populations.

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“…Recent studies [18] have pointed out that loneliness increases the emergence of post-traumatic symptomatology and, more importantly, that both 2 of 16 received and perceived social support could be protective factors against psychological distress [19]. Based on these results, many authors [20][21][22][23][24] have proposed strategies to support older people by maintaining social support and reducing loneliness.…”

Section: Introductionmentioning

confidence: 99%

Older People’s Lived Perspectives of Social Isolation during the First Wave of the COVID-19 Pandemic in Italy

Cipolletta

Gris

2021

IJERPH

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The aim of the present study is to understand the experiences of isolation and strategies used to cope with it among older people living at home during the first wave of the COVID-19 pandemic. More specifically, the roles of media and online technologies were also explored. Semistructured interviews were conducted via telephone between March and April 2020 with 30 people aged 72–94 years old living in Northern Italy. The thematic analysis identified six thematic areas: changes in daily life, emotions, social networks, exploited resources and strategies, use of media, and view of the future. Older people faced the emergency in heterogeneous ways; some were able to take advantage of their own residual resources and of social support, whereas in other cases, isolation exacerbated existing weaknesses. Technology and media were useful for reducing loneliness and fostering social contacts, but people with age-related impairments or low digital literacy presented many difficulties in approaching new technologies. Moreover, the overabundance of information could also increase anxiety and feelings of threat. Given the impact of social isolation on older people’s well-being, it is critical to identify and strengthen personal resources and social support strategies that may help older people cope with the restrictions imposed by the COVID-19 pandemic.

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Caring for a person with dementia during the COVID-19 pandemic: a qualitative study with family care-givers

Cited by 17 publications

References 51 publications

Experiences of family caregivers of persons living with dementia with and without a smart- clothes assisted home nursing program during the heightened COVID-19 alert

Experiences of family caregivers of persons living with dementia with and without a smart- clothes assisted home nursing program during the heightened COVID-19 alert

Psychodrama with persons with dementia on zoom: Proof of concept

Older People’s Lived Perspectives of Social Isolation during the First Wave of the COVID-19 Pandemic in Italy

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