Understanding the impact of the COVID-19 pandemic on well-being and virtual care for people living with dementia and care partners living in the community

Roach, Pamela; Zwiers, Angela; Cox, Emily; Fischer, Karyn; Charlton, Anna; Josephson, Colin B.; Patten, Scott B.; Seitz, Dallas; Ismail, Zahinoor; Smith, Eric E.

doi:10.1177/1471301220977639

Cited by 65 publications

(98 citation statements)

References 32 publications

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“…The pandemic produced psychological disorders, including depression, anxiety, and loneliness in elderly people with cognitive impairment living at home, suffering from a decrease in social activities [32]. Isolation and health needs have emerged as crucial issues for family experiences [33]. The disruption in routine activities has produced a significant overall decline and a reduced autonomy in daily living activities in care recipients, as reported by their caregivers [34,35].…”

Section: Discussionmentioning

confidence: 99%

The Impact of the COVID-19 Pandemic on the Cognition of People with Dementia

Tondo

Sarasso

Serra

et al. 2021

IJERPH

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(1) Background: To limit the COVID-19 outbreak, the Italian government implemented social restrictions that may have had psychological and cognitive repercussions on people with dementia. We aimed to analyze cognitive decline during the pandemic year in people evaluated in a memory clinic in northern Italy, the epicenter of COVID-19 spread. (2) Methods: A single-center retrospective study was carried out, including individuals with annual follow-up evaluated in three different years (2020-GROUP, 2019-GROUP, 2018-GROUP). We performed an intergroup comparison of cognitive decline over a one-year follow-up, and an intragroup comparison in the 2020-GROUP to analyze the five-year cognitive decline trajectory, as measured by the MMSE. (3) Results: The 2020-GROUP showed a significant loss of MMSE points per year in the considered follow-up period compared with the 2019-GROUP and 2018-GROUP (p = 0.021). Demographics, clinical features, and the other analyzed variables, including rate of diagnosis, therapy, and comorbidities, did not significantly differ between groups. The five-year cognitive decline trajectory confirmed a significant worsening of cognitive decline between 2019 and 2020 (p < 0.001), while the decrease in MMSE scores was not statistically significant between previous time points. (4) Conclusions: COVID-19 pandemic measures have induced a significant worsening of cognitive decline in people with dementia, needing more careful assistance to minimize the adverse effects of social isolation in case of future lockdowns.

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Section: Discussionmentioning

confidence: 99%

The Impact of the COVID-19 Pandemic on the Cognition of People with Dementia

Tondo

Sarasso

Serra

et al. 2021

IJERPH

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“…Carers of people with dementia faced particularly complex situations as studies report that many people with dementia find it difficult to follow public health restrictions. Carers also explained that reduced availability of support structures had an effect on behaviour that carers find challenging to respond to as well as on the cognition of people living with dementia (Carers UK 2020b;Eggert et al, 2020;Roach et al 2020;Vaitheswaran et al 2020).…”

Section: Availability Of Formal and Informal Supportmentioning

confidence: 99%

The Impacts of COVID-19 on Unpaid Carers of Adults with Long-Term Care Needs and Measures to Address these Impacts: A Rapid Review of Evidence up to November 2020

Lorenz-Dant¹,

Comas-Herrera

2021

Journal of Long Term Care

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Context: Unpaid carers are the backbone of long-term care (LTC) systems around the world. The COVID-19 pandemic has further increased the pressure many unpaid carers experience; however, their experience has been largely absent from public reporting. Objective: We aim to map the available evidence of the impacts of COVID-19 on unpaid carers of adults (>18 years) with LTC needs as well as of measures implemented to mitigate these effects and how well they have worked. Method: We conducted a rapid review of the academic and grey literature on unpaid carers of adults with LTC needs during the COVID-19 pandemic, covering the period until November 2020. Findings: We identified six key themes that highlight the impacts of COVID-19 on unpaid carers of people living in the community. These are: care commitment, concerns related to COVID-19, availability of formal and informal support, financial implications, carer health and well-being, and carers' adaptability. In addition, we captured aspects identified by unpaid carers supporting people in residential care settings under the theme 'carers of people in residential settings'. Finally, we reported evidence of measures implemented to mitigate the impacts on carers. This included the use of technology and the receipt of financial assistance and support for working carers. Limitations: The evidence reported in this review is based largely on cross-sectional data and some of the data reported relies on convenience samples. Implications: We highlight the financial and health impacts that many unpaid carers experience. Given the vital support carers provide to adults with LTC needs, policy makers should consider supporting unpaid carers to mitigate the negative impacts on their lives.

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“…Evidence from several countries shows that large proportions of caregivers have experienced an increased burden and stress-related symptoms, like trouble sleeping, since the outbreak of the pandemic [e.g., (9,13,22,23)]. Furthermore, informal caregivers frequently reported worsened physical and mental health, such as being depressed or anxious as well as feeling more socially isolated and lonely [e.g., (9,24,25)]. Based on these considerations, we formulated the following hypotheses: H1: COVID-19 and its accompanying control measures lead to an increase in the frequency of providing informal family care to those who rely most strongly on personal care.…”

Section: Introductionmentioning

confidence: 99%

“…(28)], more and more studies have recently reported higher rates of depression and greater loneliness since the onset of the pandemic with respect to older adults (29)(30)(31), as well as higher levels of stress, anxiety, and depression among people with health problems or dementia (32)(33)(34). In this respect, other studies emphasized reduced opportunities for social interaction and made use of examples in which caregivers reported that their relatives with dementia were frustrated as it was difficult for them to understand why they should not go out or had to reduce contacts (25). This coincides with observations that caregivers in many countries reported a worsening of the care situation (9,32).…”

Section: Introductionmentioning

confidence: 99%

The Impact of COVID-19 on Informal Caregiving and Care Receiving Across Europe During the First Phase of the Pandemic

Bergmann

Wagner

2021

Front. Public Health

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Purpose: We analyzed the effects of COVID-19 as well as its accompanying epidemiological control measures on health-related outcomes (physical and mental health) and unmet care needs of both caregivers and care recipients across Europe and Israel by taking into account country differences.Methods: We applied comparisons of adjusted predictions, controlling for a large set of relevant respondent characteristics, to investigate changes in the physical and mental health of caregivers and care recipients due to COVID-19. Furthermore, multilevel regression models were used to analyze the effect of individual and contextual indicators on the probability of reporting difficulties in receiving care. For the analyses, we used data from 26 countries with 51,983 respondents over 50 years based on the eighth wave of the Survey of Health, Aging and Retirement in Europe (SHARE), which had to be suspended in March 2020, and the SHARE Corona Survey fielded from June to August 2020.Results: During the first phase of the pandemic in spring/summer 2020, the frequency of providing personal care to parents increased in almost all European countries, while care to children, in turn, decreased. Parental caregivers who increased the frequency of providing personal care reported significantly more mental health strains, that is, feeling sad/depressed and anxious/nervous more often since the outbreak of the pandemic. With respect to receiving care, about one out of five care recipients had difficulty in obtaining adequate care from outside the household during the pandemic. The perception of unmet care needs was significantly associated with country differences regarding the duration of the stay-at-home orders. In contrast, the number of confirmed deaths did not have a significant effect on perceiving difficulties related to receiving care.Conclusions: Our findings show the extent of the burden to which caregivers and care recipients were exposed with respect to the unintended consequences of COVID-19-related epidemiological control measures. There is a great need within this population for interventions, which effectively reduce the burden as well as the symptoms of anxiety or depression for caregivers as well as care recipients. This should be recognized by (health) policymakers and social organizations.

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Understanding the impact of the COVID-19 pandemic on well-being and virtual care for people living with dementia and care partners living in the community

Cited by 65 publications

References 32 publications

The Impact of the COVID-19 Pandemic on the Cognition of People with Dementia

The Impact of the COVID-19 Pandemic on the Cognition of People with Dementia

The Impacts of COVID-19 on Unpaid Carers of Adults with Long-Term Care Needs and Measures to Address these Impacts: A Rapid Review of Evidence up to November 2020

The Impact of COVID-19 on Informal Caregiving and Care Receiving Across Europe During the First Phase of the Pandemic

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