People with young-onset dementia and their families experience distinctive impacts of the COVID-19 pandemic and associated restrictions

Cations, Monica; Day, Sally; Laver, Kate; Withall, Adrienne; Draper, Brian

doi:10.1017/s1041610221000879

Cited by 10 publications

(9 citation statements)

References 15 publications

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“…The pandemic-related changes have also affected people living with dementia, restricting them from social and physical activities that are vital for maintaining their health and well-being. This was also confirmed by researchers investigating changes affecting people with young onset dementia living in Australia (Cations et al, 2021) and in other studies around the globe (Giebel, Cannon, et al, 2021; Hanna et al, 2022; Suárez-González et al, 2021). Moreover, people living with dementia across different care settings faced challenges in understanding and respecting the restrictions, including the need for mask wearing and social distancing.…”

Section: Discussionsupporting

confidence: 80%

“…Third, we did not specifically investigate people living with young onset dementia, who can access some form of social care services through the National Disability Insurance Scheme (available for people with disabilities under 65 years old, not just the aged care system packages in Australia). These people experience distinctive impacts in everyday life; therefore, they faced different challenges during the pandemic restrictions, as presented elsewhere (Cations et al, 2021). Finally, although the interviews were conducted between July and November 2020, this period was dynamic and restrictions and measures were changing variously, both within and between states and territories.…”

Section: Limitationsmentioning

confidence: 97%

“…In Australia, there is limited knowledge describing the impact of the pandemic on people living with dementia, with published studies focusing on either people living with young onset dementia or the positive aspects of providing informal care to people living with dementia (Cations et al, 2021; Tulloch et al, 2021). Therefore, our study aimed to explore how the implemented changes in formal social support, due to the COVID-19 public health measures, affected people living with dementia and their informal carers in Australia.…”

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confidence: 99%

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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: Discussionsupporting

confidence: 80%

Section: Limitationsmentioning

confidence: 97%

mentioning

confidence: 99%

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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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“…Considering the emotional turmoil experienced by lack of contact between residents and family members, and the restricted nature of contact. Findings indicate the significance of social contact and their impact on mental well-being, as evidenced outside the care home sector during the pandemic and in pre-pandemic times (Domenech-Abella et al, 2019;Cations et al, 2021;Cohen et al, 2020). This is also captured in a recent international report on the care home visiting, which provides five major recommendations which are corroborated by our findings: avoiding blanket visitor bans; safe alternative face-to-face visits; essential partner status for family carers; government support for implementing safe visiting; and ensuring the human rights of residents are met, not depriving them of their basic rights of seeing friends and family .…”

Section: Discussionmentioning

confidence: 99%

“Because if I don’t hold his hand then I might as well not be there”: Experiences of Dutch and UK care home visiting during the COVID-19 pandemic

Giebel

Boer

Gabbay

et al. 2022

Int. Psychogeriatr.

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Objectives: To explore and compare the experiences of care home visits during the pandemic in the UK and the Netherlands. Design: Qualitative semi-structured interview studies Setting and Participants: Family carers of relatives residing in care homes in the UK and the Netherlands were interviewed remotely. Methods: Family carers were asked about their experiences of care home visits during the pandemic, and specifically in the Netherlands after care homes had reopened. Transcripts were analyzed in each country separately in the native language using thematic analysis, before discussing findings at multiple analysis meetings. Results: Across 125 interviews, we developed four themes: (1) different types of contact during lockdown; (2) deterioration of resident health and well-being; (3) emotional distress of both visitors and residents; and (4) compliance to guidelines and regulations. Visiting in both the UK and the Netherlands was beneficial, if possible in the UK, yet was characterized by alternative forms of face-to-face visits which was emotionally distressing for many family carers and residents. In the Netherlands, government guidance did enable early care home visitation, while the UK was lacking any guidance leading to care homes implementing restrictions differently. Conclusions and Implications: Early and clear guidance, as well as communication, is required in future pandemics, and in this ongoing pandemic, to enable care home visits between residents and loved ones. It is important to take learnings from this global pandemic to reimagine long-term care, highlighting the value of socializing for care home residents.

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“…Research has shown that people suffering from dementia have a relatively high risk of contracting severe COVID-19. They are also at risk of additional neuropsychiatric disturbances as a result of quarantine/lockdown measures and stringent social isolation (Cations et al, 2021;Giebel et al, 2021;Numbers & Brodaty, 2021;Ryoo et al, 2020). Lack of social engagements with families and friends, cancelled day care centre programmes may worsen the cognitive, physical and neuropsychological condition of the patients with dementia.…”

Section: Stress From Isolation and The Vulnerablementioning

confidence: 99%

Long COVID, neuropsychiatric disorders, psychotropics, present and future

Tang

Leonard

Helmeste

2022

Acta Neuropsychiatr.

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Long-COVID refers to the lingering or protracted illness long after the acute illness. Depression, anxiety, fatigue, concentration and cognitive impairment appeared to be reported often in long COVID, psychosis seemed uncommon. Neuropsychiatric disorders in long COVID could be a consequence of direct viral insult on the central nervous system (CNS), continuous neuroinflammation, or neurodegeneration and metabolic impairment following the cerebral vascular accidents, or hypoxia from pulmonary damages and fibrotic changes. It is important to know how patients with various disorders, not only neuropsychiatric disorders, thrive under long COVID. How much the neuropsychiatric disorders reported in long COVID are stress related in nature, due to prolonged quarantine and social isolation, would also be important to study. Patients with diabetes are already known to have a higher risk of mortality and morbidity in COVID-19. How brain glucose metabolism may contribute to the neuropsychiatric symptoms in long COVID is an important area for COVID-19 research. Patients on psychotropics often asked their clinicians about potential conflicts of their medications with anti-COVID 19 vaccinations, or whether it would increase their vulnerability to COVID-19 viral infection. Thus, early reports of protective effects of psychotropics against COVID-19 need to be validated. Some antidepressant and antipsychotic agents indeed possess significant affinities for the sigma-1 and histamine receptors. This, with the earlier reports of reduced number of sigma-1 receptors in post- mortem schizophrenic brains and the reported roles of sigma and histamine receptors in neuroinflammation and viral infections, may point to an important and novel direction for drug discovery against COVID-19. Literature and data in all these areas are accumulating at a fast rate. We reviewed and discussed the relevant and important literature.

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People with young-onset dementia and their families experience distinctive impacts of the COVID-19 pandemic and associated restrictions

Cited by 10 publications

References 15 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

“Because if I don’t hold his hand then I might as well not be there”: Experiences of Dutch and UK care home visiting during the COVID-19 pandemic

Long COVID, neuropsychiatric disorders, psychotropics, present and future

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