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

Liu, Kathy; Howard, Robert; Banerjee, Sube; Comas-Herrera, Adelina; Goddard, Joanne; Knapp, Martín; Livingston, Gill; manthorpe, jill; O’Brien, John T.; Paterson, Ross W.; Robinson, Louise; Rossor, Martin N.; Rowe, James B.; Sharp, David H.; Sommerlad, Andrew; Suárez‐González, Aida; Burns, Alistair

doi:10.31219/osf.io/2bq4u

Cited by 21 publications

(31 citation statements)

References 59 publications

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“…Staff perceived that a lack of access to their usual support networks and loneliness would be a significant challenge for older adults with mental illnesses or dementia. Indeed, a consensus group 16 identified the mental and physical impact of isolation as an important challenge for delivering the Preventing Well theme of the COVID‐19 Dementia Wellbeing Pathway 17 . Support provided by voluntary service organisations and well‐being packs produced for patients were seen as helpful innovations.…”

Section: Discussionmentioning

confidence: 99%

Impact of the COVID‐19 pandemic on older adults mental health services: A mixed methods study

Bhome

Huntley

Dalton-Locke

et al. 2021

Int J Geriat Psychiatry

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Objectives The COVID‐19 pandemic has had a significant impact on older adults mental health care. Our study aimed to explore staff perspectives on key challenges and innovations in order to help inform the delivery of older adults mental health care in subsequent waves of the pandemic. Methods A mixed methods online questionnaire developed by National Institute for Health Research Mental Health Policy Research Unit was used to gather staff perspectives on their challenges at work, problems faced by service users and their carers, and sources of help and support. Descriptive statistics were used for quantitative analysis and descriptive content analysis for qualitative analysis. Results 158 participants, working in either community or inpatient settings, and from a range of professional disciplines, were included. For inpatient staff, a significant challenge was infection control. In the community, staff identified a lack of access to physical and social care as well as reduced contact with friends and families as being challenges for patients. Remote working was seen as a positive innovation along with COVID‐19 related guidance from various sources and peer support. Conclusion Our study, with a focus on staff and patient well‐being, helps to inform service development for future waves of the pandemic. We discuss measures to improve infection control in inpatient settings, the role of voluntary organisations in supporting socially isolated community patients, the need for better integration of physical and mental health services at an organisational level, and the importance of training staff to support patients and their families with end of life planning.

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Section: Discussionmentioning

confidence: 99%

Impact of the COVID‐19 pandemic on older adults mental health services: A mixed methods study

Bhome

Huntley

Dalton-Locke

et al. 2021

Int J Geriat Psychiatry

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“…These residents may find it difficult to understand, remember, and follow restrictions imposed on their movements in the context of isolation [3]. Further, the resulting disruption to their care routines and social interactions while in isolation negatively impacts their mental and physical health and quality of life [4][5][6][7].…”

Section: Introductionmentioning

confidence: 99%

Barriers and facilitators to person-centred infection prevention and control: results of a survey about the Dementia Isolation Toolkit

et al. 2022

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Background People working in long-term care homes (LTCH) face difficult decisions balancing the risk of infection spread with the hardship imposed on residents by infection control and prevention (ICP) measures. The Dementia Isolation Toolkit (DIT) was developed to address the gap in ethical guidance on how to safely and effectively isolate people living with dementia while supporting their personhood. In this observational study, we report the results of a survey of LTCH staff on barriers and facilitators regarding isolating residents, and the impact of the DIT on staff moral distress. Methods We completed an online cross-sectional survey. Participants (n = 207) were staff working on-site in LTCH in Ontario, Canada since March 1, 2020, with direct or indirect experience with the isolation of residents. LTCH staff were recruited through provincial LTCH organizations, social media, and the DIT website. Survey results were summarized, and three groups compared, those: (1) unfamiliar with, (2) familiar with, and (3) users of the DIT. Results 61% of respondents identified distress of LTCH staff about the harmful effects of isolation on residents as a major barrier to effective isolation. Facilitators for isolation included delivery of 1:1 activity in the resident’s room (81%) and designating essential caregivers to provide support (67%). Almost all respondents (84%) reported an increase in moral distress. DIT users were less likely to report an impact of moral distress on job satisfaction (odds ratio (OR) 0.41, 95% CI 0.19-0.87) with 48% of users reporting the DIT was helpful in reducing their level of moral distress. Conclusions Isolation as an ICP measure in LTCH environments creates moral distress among staff which is a barrier to its effectiveness. ICP guidance to LTCH would be strengthened by the inclusion of a dementia-specific ethical framework that addresses how to minimize the harms of isolation on both residents and staff.

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“…However, existing evidence based on carer reports and self-reports from PwD provided mixed results (Brown et al, 2020;Liu et al, 2021). On the one hand some studies (Boutoleau-Bretonniere et al, 2020;Canevelli et al, 2020;Lara et al, 2020;Rainero et al, 2020;Borelli et al, 2021) found that the pandemic accelerated decline in the cognitive, physical, functional, and mental health of PwD, as well as increased neuropsychiatric symptoms, behavioural problems, and loneliness among PwD (Barguilla et al, 2020;Boutoleau-Bretonniere et al, 2020;Canevelli et al, 2020;Cohen et al, 2020;Lara et al, 2020;Rainero et al, 2020;Vaitheswaran et al, 2020;Altieri and Santangelo, 2021;Azevedo et al, 2021;Borelli et al, 2021;Carlos et al, 2021;Liu et al, 2021;Tam et al, 2021;Tsapanou et al, 2021). On the other hand, some studies found that the pandemic had minimal negative impact or no impact on these outcomes (Canevelli et al, 2020;Cohen et al, 2020;Lara et al, 2020;Thyrian et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

Minimal impact of COVID-19 on the mental health and well-being of people living with dementia: analysis on matched longitudinal data from the IDEAL study

Sabatini¹

2022

Preprint

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Objective: Research suggests a decline in the mental health and well-being of people with dementia (PwD) during the COVID-19 pandemic; however few studies have compared data collected pre-pandemic and during the pandemic. Moreover, none have compared this change with what would be expected due to dementia progression. We explored whether PwD experienced changes in mental health and well-being by comparing pre-pandemic and pandemic data, and drew comparisons with another group of PwD questioned on two occasions prior to the pandemic.Methods: Community-dwelling PwD enrolled in the IDEAL programme were split into two groups matched for age group, sex, dementia diagnosis, and time since diagnosis. Although each group was assessed twice, one was assessed prior to and during the pandemic (pandemic group; n=115) whereas the other was assessed prior to the pandemic (pre-pandemic group; n=230). PwD completed measures of mood, sense of self, well-being, optimism, quality of life, and life satisfaction.Results: Compared to the pre-pandemic group, the pandemic group were less likely to report mood problems, or be pessimistic, but more likely to became dissatisfied with their lives. There were no changes in continuity in sense of self, well-being, and quality of life.Discussion: Results suggest the pandemic had little effect on the mental health and well-being of PwD, with any changes observed likely to be consistent with expected rates of decline due to dementia. Although personal accounts attest to the challenges experienced, PwD appear to have been resilient to the impact of lockdown and social restrictions during the pandemic.

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

Cited by 21 publications

References 59 publications

Impact of the COVID‐19 pandemic on older adults mental health services: A mixed methods study

Impact of the COVID‐19 pandemic on older adults mental health services: A mixed methods study

Barriers and facilitators to person-centred infection prevention and control: results of a survey about the Dementia Isolation Toolkit

Minimal impact of COVID-19 on the mental health and well-being of people living with dementia: analysis on matched longitudinal data from the IDEAL study

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