COVID-19 resources on Dementia

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The effect of COVID-19 isolation measures on the cognition and mental health of people living with dementia: a rapid systematic review of one year of quantitative evidence


Background: COVID-19 prevention and control policies have entailed lockdowns and confinement. This study aimed to summarize the global research evidence describing the effect of COVID-19 isolation measures on the health of people living with dementia. Methods: The researchers searched Pubmed, PsycINFO and CINAHL up to 27th of February 2021 for peer-reviewed quantitative studies about the effects of isolation during COVID-19 on the cognitive, psychological and functional symptoms of people with dementia or mild cognitive impairment. The Joanna Briggs Institute critical appraisal tool was used to conduct the quality assessment. PROSPERO registration:CRD42021229259. Findings: 15 eligible papers were identified, examining a total of 6442 people with dementia. 13/15 studies investigated people living in the community and 2 in care homes. Out of 15 studies, 9 (60%) reported changes in cognition and 14 (93%) worsening or new onset of behavioral and psychological symptoms. Six studies (46%) reported a functional decline in daily activities in a variable proportion of the population analyzed. Interpretation: COVID-19 isolation measures have damaged the cognitive and mental health of people with dementia across the world. It is urgent to issue guidance that balances infection control measures against the principles of non-maleficence to guarantee fair and appropriate care during pandemic times for this population.

Last updated on hub: 17 August 2021

Challenging behavior of nursing home residents during COVID-19 measures in the Netherlands

Aging and Mental Health

Objectives: From the perspective of the nursing home (NH) practitioners, to gain understanding of (1) whether challenging behavior in NH residents changed during the COVID-19 measures, (2) whether the practitioners’ involvement in the treatment of challenging behavior changed, (3) what can be learned from the experience of NH staff. Methods: A mixed methods study with a survey in 323 NH practitioners (psychologists, elderly care physicians, nurse practitioners) in the Netherlands, and in-depth interviews in 16 NH practitioners. Nonparametric analyses were used to compare estimated proportions of residents with increased and with decreased challenging behavior. Content analyses were conducted for open-ended questions and in-depth interviews. Results: Participants reported changes in challenging behavior with slightly higher proportions for increased (Q1/Mdn/Q3: 12.5%, 21.7%, 30.8%) than for decreased (8.7%, 14.8%, 27.8%, Z = –2.35, p = .019) challenging behavior. Half of the participants reported that their work load increased and work satisfaction worsened during the measures. Different strategies were described to respond to the effects of COVID-19 measures, such as video calls, providing special areas for residents to meet their loved ones, adjusting activities, and reducing the exposure to negative news. Conclusions: Because COVID-19 measures resulted in both increased and decreased challenging behavior in NH residents, it is important to monitor for their potential long lasting effects. Increased work load and worsened work satisfaction of the NH staff, together with the changes in type of challenging behavior, indicate that the harmful effects of the anti-pandemic measures should be taken seriously.

Last updated on hub: 07 July 2021

Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study

Aging and Mental Health

Objectives: Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. Method: PLWD and unpaid carers were interviewed via telephone in April 2020. Transcripts were analysed using thematic analysis. Demographic characteristics including household Index of Multiple Deprivation score and weekly hours of social support service usage before and since the COVID-19 outbreak were also collected. Paired samples t-tests was used to compare the mean of weekly hours of social support service usage before and since the outbreak. Results: 50 semi-structured interviews were conducted with unpaid carers (n = 42) and PLWD (n = 8). There was a significant reduction in social support service usage since the outbreak. Thematic analysis identified three overarching themes: (1) Loss of control; (2) Uncertainty; (3) Adapting and having to adapt to the new normal. Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open. Carers were worried about whether the person they cared for would still be able to re-join social support services. Conclusions: PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions.

Last updated on hub: 07 July 2021

A unique disaster response in aged residential dementia care: Can the experience inform future care models?

Journal of Clinical Nursing

Aims and Objectives: To understand how staff who chose to live-in with residents in a level 3 dementia care unit perceived the experience, in particular, their perceptions of how residing on site affected resident well-being. Background: COVID-19 has been especially devastating in aged residential care (ARC) facilities. In March 2020, when the threat became realised in New Zealand, one residential dementia care facility implemented a unique response to the imminent threat of COVID-19. Eight staff members made the decision to live on site during the lockdown, ensuring residents’ risk of contracting the virus was significantly reduced as carers would not go outside of the facility. Design: A qualitative descriptive inquiry. Methods: Seven staff who chose to live-in, and the facility manager, participated in semi-structured, face-to-face interviews at the ARC. Audio-recorded interviews were transcribed verbatim and analysed using a thematic analysis approach. COREQ guidelines were adhered to in the reporting of this study. Results: An overarching motif which emerged from the findings was the articulation of an ‘all in this together’ attitude which fostered feelings of camaraderie and collaboration which enhanced the experience for staff individually, and as a group. Themes identified were as follows: (a) A ‘safe’ but challenging choice, (b) Benefits for the staff and (c) Positive outcomes for the residents. Conclusion: This crisis inadvertently brought about an enhanced ‘dementia-friendly’, person-centred communal environment. Relevance to clinical practice: This study identified themes that deepen our understanding of caring for vulnerable populations during a pandemic and beyond. Given the success of this ‘live-in’ innovation, consideration must be given to applying these findings more generally when planning care models for best outcomes for residents receiving rest home level dementia care. How we care for people in disaster situations reflects the heart of the caring workforce, but such innovation may be extended to usual care where indicated.

Last updated on hub: 02 July 2021

Dementia wellbeing and COVID-19: review and expert consensus on current research and knowledge gaps

International Journal of Geriatric Psychiatry

Objectives: In response to a commissioned research update on dementia during the COVID-19 pandemic, a UK-based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research. Methods: This study supplemented a rapid literature search (including unpublished, non-peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID-19 with expert group members' consensus about future research needs. From this, the researchers generated potential research questions the group judged to be relevant that were not covered by the existing literature. Results: Themes emerged from 141 studies within the six domains of the NHS England COVID-19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. This paper describes current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population-representative longitudinal studies to monitor longer-term impacts, and the importance of reporting dementia-related findings within broader health and care studies. Conclusions: The COVID-19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding questions to develop evidence-based measures to improve the quality of life of people affected by dementia.

Last updated on hub: 02 July 2021

Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

BMJ Open

Introduction: Despite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored. Objective: The aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives. Design: 15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. This study used thematic analysis to analyse the data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values. Results: There were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. This study identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others. Discussion: This paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.

Last updated on hub: 30 June 2021

Maintaining resident social connections during COVID-19: considerations for long-term care

Gerontology and Geriatric Medicine

Worldwide, long-term care (LTC) homes have been heavily impacted by the coronavirus disease 2019 (COVID-19) pandemic. The significant risk of COVID-19 to LTC residents has resulted in major public health restrictions placed on LTC visitation. This article describes the important considerations for the facilitation of social connections between LTC residents and their loved ones during the COVID-19 pandemic, based on the experiences of 10 continuing care homes in Alberta, Canada. Important considerations include: technology, physical space, human resource requirements, scheduling and organization, and infection prevention and control. This paper describes some of the challenges encountered when implementing alternative visit approaches such as video and phone visits, window visits and outdoor in-person visits, and share several strategies and approaches to managing this new process within LTC.

Last updated on hub: 30 June 2021

Impact of COVID-19 on the health and well-being of informal caregivers of people with dementia: a rapid systematic review

Gerontology and Geriatric Medicine

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic.

Last updated on hub: 30 June 2021

Working in a care home during the COVID-19 pandemic: how has the pandemic changed working practices?


The aim of this research was to explore the impact of COVID-19 on the working practices of care home staff, caring for people living with dementia. Remote qualitative, semi-structured interviews were conducted with care home staff caring for people living with dementia (PLWD) in the UK. Participants were recruited to the larger programme of research via convenience sampling. Interviews were conducted via telephone or online platforms. This research employed inductive thematic analysis. Sixteen care home staff were included in this study. Three overarching themes were developed from the analysis that conveyed changes to the everyday working practices of the care home workforce and the impact such changes posed to staff wellbeing: (1) Practical implications of working in a care home during the COVID-19 pandemic; (2); Staff values and changes to the staff roles (3): Impact to the care home staff and concerns for the care sector. The COVID-19 pandemic has significantly disrupted the daily working practices of care home staff, with staff forced to adopt additional roles on top of increased workloads to compensate for the loss of external agencies and support. Support and guidance must be offered urgently to inform care home staff on how to best adapt to their new working practices, ensuring that they are adequately trained.

Last updated on hub: 21 June 2021

Social connectedness and dementia prevention: pilot of the APPLE-Tree video-call intervention during the Covid-19 pandemic

Dementia: the International Journal of Social Research and Practice

Background and Objectives: The Covid-19 pandemic reduced access to social activities and routine health care that are central to dementia prevention. The researchers study developed a group-based, video-call, cognitive well-being intervention; and investigated its acceptability and feasibility; exploring through participants’ accounts how the intervention was experienced and used in the pandemic context. Research Design and Method: This study recruited adults aged 60+ years with memory concerns (without dementia). Participants completed baseline assessments and qualitative interviews/focus groups before and after the 10-week intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. Results: 12/17 participants approached completed baseline assessments, attended 100/120 (83.3%) intervention sessions and met 140/170 (82.4%) of goals set. Most had not used video calling before. In the thematic analysis, our overarching theme was social connectedness. Three sub-themes were as follows: Retaining independence and social connectedness: social connectedness could not be at the expense of independence; Adapting social connectedness in the pandemic: participants strived to compensate for previous social connectedness as the pandemic reduced support networks; Managing social connections within and through the intervention: although there were tensions, for example, between sharing of achievements feeling supportive and competitive, participants engaged with various lifestyle changes; social connections supported group attendance and implementation of lifestyle changes. Discussion and Implications: This intervention was acceptable and feasible to deliver by group video-call. The researchers argue that dementia prevention is both an individual and societal concern. For more vulnerable populations, messages that lifestyle change can help memory should be communicated alongside supportive, relational approaches to enabling lifestyle changes.

Last updated on hub: 15 June 2021

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