The Experiences of People with Dementia and Informal Carers Related to the Closure of Social and Medical Services in Poland during the COVID-19 Pandemic—A Qualitative Study

Maćkowiak, Maria; Senczyszyn, Adrianna; Lion, Katarzyna; Trypka, Elżbieta; Małecka, Monika; Ciułkowicz, Marta; Mazurek, Justyna; Świderska, Roksana; Giebel, Clarissa; Gabbay, Mark; Rymaszewska, Joanna; Szczęśniak, Dorota

doi:10.3390/healthcare9121677

Cited by 10 publications

(40 citation statements)

References 72 publications

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“…Such findings were also reported in many other countries worldwide (Suárez-González et al, 2021) and partially relate to reported higher levels of anxiety and depression among older Australians compared with pre-COVID-19 (Strutt et al, 2022). Our findings did not highlight positive aspects of providing informal care for people living with dementia, such as spending more time together, which were reported by carers in other countries and in an Australian study focusing on positive experiences and coping strategies (Maćkowiak et al, 2021; Tulloch et al, 2021). This aspect should be explored in further studies.…”

Section: Discussioncontrasting

confidence: 98%

“…The increased burden of care was quite often caused by additional changes related to the pandemic, such as home-learning and working from home. This increased burden of care was observed internationally in countries like the United Kingdom, Canada, and Poland Losada et al, 2022;Maćkowiak et al, 2021), and especially among women (Eurocarers/IRCCS-INRCA, 2021;Power, 2020).…”

Section: Discussionmentioning

confidence: 98%

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How Did the COVID-19 Restrictions Impact People Living With Dementia and Their Informal Carers Within Community and Residential Aged Care Settings in Australia? A Qualitative Study

et al. 2022

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The aim of this study was to explore how formal social support changed after implementation of the COVID-19 public health measures and how these restrictions affected people living with dementia and their informal carers in Australia. Sixteen informal carers and two people living with dementia were interviewed between August and November 2020. Participants were asked about their experiences of the pandemic and the impact that the restrictions had on their lives and care. Thematic analysis identified four overarching themes describing (a) prepandemic limitations of the aged care system, (b) the aged care system’s response to the COVID-19 restrictions, (c) changes affecting informal carers, and (d) the challenges faced by people living with dementia. The findings highlighted the challenges faced by the Australian aged care system before the pandemic and the additional burden placed on informal carers who supported people living with dementia across residential and home settings during the pandemic.

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Section: Discussioncontrasting

confidence: 98%

Section: Discussionmentioning

confidence: 98%

How Did the COVID-19 Restrictions Impact People Living With Dementia and Their Informal Carers Within Community and Residential Aged Care Settings in Australia? A Qualitative Study

et al. 2022

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“…38,39 Social distancing rules imposed by the pandemic interrupted access to routine healthcare for those vulnerable people at an increased risk of virus infection, morbidity and mortality. In such a context, evidence on the use of technology in healthcare emerged in Poland and in Australia 40,41 only. However, based on our findings, difficulties with remote healthcare arose, and teleconsultations, specifically, seem not to work for people with dementia who prefer physical contact and rely on non-verbal communication, especially when their cognition is seriously compromised.…”

Section: Discussionmentioning

confidence: 99%

Use of technology by people with dementia and informal carers during COVID‐19: A cross‐country comparison

Chirico

Giebel

Lion

et al. 2022

Int J Geriat Psychiatry

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Objectives: Considering the adverse outcomes of COVID-19, it is essential to provide adequate support and care for people with dementia and informal carers.Technology can reduce the distress associated with social distancing rules and the decreased access to in-person services. This study aimed to explore the use of technology and its perceived effects across different settings and countries. Methods:The sample was composed of 127 informal carers and 15 people with dementia from the UK, Italy, Australia and Poland. Semi-structured interviews explored participants' experiences of using technology and their perceived effects.Transcripts were analysed by researchers in each country using an inductive approach.Results: Three overarching themes were developed: (1) Technology kept us alive during COVID-19; (2) Remote care was anything but easy; (3) Perceived technology limitations. Many similarities emerged between countries supporting the role of technology for being socially engaged, having a routine, and staying active. However, the benefits of technology for health and psychosocial care were more limited.Across countries, barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments.Help and supervision from carers were also necessary and sometimes perceived as an additional burden. Conclusions:Technology can effectively reduce the shrinking world that may be amplified by the pandemic, thus preserving people with dementia's social skills and maintaining family connections. However, for more extensive and well-adapted use of technology in dementia care, actions should be taken to overcome the barriers to the access and use of technology by older and vulnerable people globally.

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“…Participants reported the lock-down restrictions from COVID-19 caused PLWDs to feel a lack of motivation and a reduction in cognitive abilities to maintain daily activities. The added requirements of maintaining social distancing and cessation of daily outdoor activities have caused a reduction in physical activity, social participation, and a lack of cognitive stimulation[ 13 – 15 ]. The COVID-19 pandemic has widened the differences between existing care methods and typical challenges and difficulties experienced by FCGs, which has led to increased caregiver burden related to practical difficulties, emotional stress, and difficulty asking for help [ 11 – 13 , 16 , 17 ].…”

Section: Introductionmentioning

confidence: 99%

“…COVID-19 restrictions have generated unprecedented challenges for FCGs and PLWDs, especially in the reorganization of their daily routine and care relationships [ 13 ]. These caregivers have multiple needs which are more difficult to address during restrictions of the COVID-19 pandemic, which may need what Rokstadt et al (2021) refer to as “radical changes” in services, such as a greater availability of telemedicine for consultations with dementia specialists and social support services either via video- or telephone-based services [ 17 ].…”

Section: Introductionmentioning

confidence: 99%

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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The Experiences of People with Dementia and Informal Carers Related to the Closure of Social and Medical Services in Poland during the COVID-19 Pandemic—A Qualitative Study

Cited by 10 publications

References 72 publications

How Did the COVID-19 Restrictions Impact People Living With Dementia and Their Informal Carers Within Community and Residential Aged Care Settings in Australia? A Qualitative Study

How Did the COVID-19 Restrictions Impact People Living With Dementia and Their Informal Carers Within Community and Residential Aged Care Settings in Australia? A Qualitative Study

Use of technology by people with dementia and informal carers during COVID‐19: A cross‐country comparison

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

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