The early impacts of COVID-19 on unpaid carers of people living with dementia: part II of a mixed-methods systematic review.

OBJECTIVES: With a lack of existing comprehensive reviews, the aim of this mixed-method systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. METHODS: This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. RESULTS: Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of social isolation, and reduced wellbeing. Specifically, reductions in access to care and support increased carer's unpaid caring tasks, removing any opportunities for temporary respite, and thus further increasing carer burden and reducing mental well-being in many. CONCLUSIONS: The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

The early impacts of COVID-19 on people living with dementia: part I of a mixed-methods systematic review.

Objectives: The aim of this Part I systematic review was to understand the impact of the COVID-19 pandemic on the lives of people with dementia living in the community or in residential care. Part II focused on unpaid carers.Methods: This review was registered on PROSPERO [CRD42021248050]. Five data bases (PubMed, CINAHL, Embase, Scopus, Web of Science) were searched in July 2021. Studies were included if they reported on the impacts of the pandemic on people living with dementia, either in the community or residential settings, and published in English, German, Polish, or Spanish. Risk of bias was assessed using the Standard Quality Assessment QualSyst.Results: Forty papers from 33 studies reported on the effects of COVID-19 on people with dementia. Included studies were conducted across 15 countries, focusing on single-country evaluations except in one study. Three studies focused on care homes, whilst the remainder reported on the community. Studies were categorised into five impacts: Cognition; Independence and physical functioning; Behavioural symptoms; Well-being; and Access to care. All studies evidenced the negative pandemic impacts, including faster cognitive, physical, and behavioural deterioration, limited access to care, and poorer mental and social health.Conclusions: Future restrictions need to consider the need for people with dementia to stay cognitively, physically, and socially stimulated to live well, and this review provides a call for a future pandemic strategy for dementia. Longitudinal research is required on the long-term impacts of the pandemic on the lives of people with dementia, including time to care home entry.

End of life care in UK care homes during the COVID-19 pandemic: a qualitative study.

PURPOSE: To report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic. METHODS: UK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis. RESULTS: Forty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time. CONCLUSION: It is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing.

COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey.

BACKGROUND: The COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well-being. AIMS: To explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak. METHODS: Unpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being. RESULTS: 377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3. CONCLUSIONS: Access to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic.

Guilt, tears and burnout-Impact of UK care home restrictions on the mental well-being of staff, families and residents.

AIMS: The aim of this study was to explore the impact of the pandemic on the emotional and mental well-being of family carers, care home staff and residents, in light of changing restrictions, increased testing and vaccination rollout in the UK. DESIGN: Longitudinal, qualitative semi-structured interview study. METHODS: Remote semi-structured interviews were conducted with family carers of care home residents with dementia and care home staff from different care homes across the UK. Baseline and follow-up interviews were conducted in October/November 2020 and March 2021, respectively. Data were analysed using inductive thematic analysis involving members of the public with caring experiences. RESULTS: In all, 42 family carers and care home staff participated at baseline, with 20 family carers and staff followed up. We identified four themes: (1) Developing anger and frustration; (2) Impact on relationships; (3) Stress and burnout; and (4) Behavioural changes, and perceived impact on residents. The mental health of everyone involved, including family carers, care home staff and residents, has been negatively affected, and relationships between family carers and staff have been severely strained. There was a general lack of adequate mental health support, with little relief. CONCLUSIONS: The pandemic has had a detrimental impact on the lives of those surrounding care homes-from residents and staff to family carers. Consideration should be given on how to best support the mental health needs of all three groups, by providing adequate easily accessible mental health care for all. This should also focus on rebuilding the relationships between family carers and care home staff. IMPACT: This is the first paper to highlight the effects of the long-lasting and miscommunicated restrictions on residents, carers and care home staff, and highlight the urgent need for continued mental health support.

Working in a care home during the COVID-19 pandemic: How has the pandemic changed working practices? A qualitative study.

BACKGROUND: The pandemic has significantly affected care homes' residents and families through the national visiting restrictions. However, less is known on the impact these changes have had on the care home workforce. 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. METHODS: Remote qualitative, semi-structured interviews were conducted with care home staff caring for people living with dementia (PLWD) in the UK. RESULTS: 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. CONCLUSIONS: 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.

Are we allowed to visit now? Concerns and issues surrounding vaccination and infection risks in UK care homes during COVID-19.

BACKGROUND: vaccination uptake in the UK and increased care home testing are likely affecting care home visitation. With scant scientific evidence to date, the aim of this longitudinal qualitative study was to explore the impact of both (vaccination and testing) on the conduct and experiences of care home visits. METHODS: family carers of care home residents with dementia and care home staff from across the UK took part in baseline (October/November 2020) and follow-up interviews (March 2021). Public advisers were involved in all elements of the research. Data were analysed using thematic analysis. RESULTS: across 62 baseline and follow-up interviews with family carers (n = 26; 11) and care home staff (n = 16; 9), five core themes were developed: delayed and inconsistent offers of face-to-face visits; procedures and facilitation of visits; variable uptake of the COVID-19 vaccine; misinformation, education and free choice; frustration and anger among family carers. The variable uptake in staff, compared to family carers, was a key factor seemingly influencing visitation, with a lack of clear guidance leading care homes to implement infection control measures and visitation rights differently. CONCLUSIONS: we make five recommendations in this paper to enable improved care home visitation in the ongoing, and in future, pandemics. Visits need to be enabled and any changes to visiting rights must be used as a last resort, reviewed regularly in consultation with residents and carers and restored as soon as possible as a top priority, whilst more education needs to be provided surrounding vaccination for care home staff.

Taking the 'care' out of care homes: The moral dilemma of institutional long-term care provision during COVID-19.

Little is known on how the pandemic has changed care home care delivery. The aim of this study was to explore the impact of COVID-19 on care provision and visits in care homes from staff and family members' perspectives. For this purpose, we conducted a telephone- and zoom-based qualitative semi-structured interview study. Care home staff and family carers of people living with dementia (PLWD) across the UK were recruited via convenience sampling and participated via telephone or online. Participants took part in a semi-structured remote interview. Data were collected between October and November 2020. Anonymised transcripts were analysed separately by two research team members using thematic analysis, with codes discussed and themes generated jointly, supported by research team input. 42 participants (26 family carers and 16 care home staff) took part. Five themes were generated: (a) Care home reputation and financial implications; (b) Lack of care; (c) Communication or lack thereof; (d) Visiting rights/changes based on residents' needs; (e) Deterioration of residents. With a lack of clear guidance throughout the pandemic, care homes delivered care differently with disparities in the levels and types of visiting allowed for family members. Lack of communication between care homes and family members, but also government and care homes, led to family carers feeling excluded and concerned about the well-being of their relative. Improved communication and clear guidance for care homes and the public are required to negate the potentially damaging effects of COVID-19 restrictions upon residents, their families and the carers who support them.

Resilience and supporting people living with dementia during the time of COVID-19; A qualitative study.

OBJECTIVES: To explore the different factors of resilience for people living with dementia and unpaid carers, in response to sudden changes in care and lifestyle during the COVID-19 pandemic. METHODS: Unpaid carers and people living with dementia were offered telephone interviews in April 2020 to discuss their experiences since the COVID-19 pandemic. Participants were asked about the benefits and challenges of accessing dementia support, as well as coping, symptoms, strategies and impacts. Each transcript was analysed using inductive and deductive thematic analysis by two researchers. FINDINGS: Semi-structured interviews from 50 participants (n = 42 unpaid carers and n = 8 people living with dementia) reported protective and risk factors of resilience concerning (1) communication, (2) adaptations, (3) support networks and (4) lifestyle factors and coping mechanisms. CONCLUSIONS: Resilience factors considered both organisational factors for external support, along with individual coping mechanisms. Organisations and social support services should consider resilience factors in future service planning, to better support people living with dementia, or caring someone living with dementia, during times of great stress. The ecological model of resilience established from this research refers to resilience during times of unexpected change in the COVID-19 pandemic; however, it could be considered relevant in other periods of high stress within this cohort.

The potential dangers of not understanding COVID-19 public health restrictions in dementia: "It's a groundhog day - every single day she does not understand why she can't go out for a walk".

BACKGROUND: Sudden public health restrictions can be difficult to comprehend for people with cognitive deficits. However, these are even more important for them to adhere to due to their increased levels of vulnerability, particularly to COVID-19. With a lack of previous evidence, we explored the understanding and changes in adherence to COVID-19 public health restrictions over time in people living with dementia (PLWD). METHODS: Unpaid carers and PLWD were interviewed over the phone in April 2020, shortly after the nationwide UK lockdown, with a proportion followed up from 24th June to 10th July. Participants were recruited via social care and third sector organisations across the UK, and via social media. FINDINGS: A total of 70 interviews (50 baseline, 20 follow-up) were completed with unpaid carers and PLWD. Five themes emerged: Confusion and limited comprehension; Frustration and burden; Putting oneself in danger; Adherence to restrictions in wider society; (Un) changed perceptions. Most carers reported limited to no understanding of the public health measures in PLWD, causing distress and frustration for both the carer and the PLWD. Due to the lack of understanding, some PLWD put themselves in dangerous situations without adhering to the restrictions. PLWD with cognitive capacity who participated understood the measures and adhered to these. DISCUSSION: In light of the new second wave of the pandemic, public health measures need to be simpler for PLWD to avoid unwilful non-adherence. Society also needs to be more adaptive to the needs of people with cognitive disabilities more widely, as blanket rules cause distress to the lives of those affected by dementia.

"A piece of paper is not the same as having someone to talk to": accessing post-diagnostic dementia care before and since COVID-19 and associated inequalities.

BACKGROUND: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. METHODS: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. RESULTS: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. CONCLUSIONS: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.

Emotional and Mental Wellbeing Following COVID-19 Public Health Measures on People Living With Dementia and Carers.

BACKGROUND: To date, there appears to be no evidence on the longer-term impacts caused by COVID-19 and its related public health restrictions on some of the most vulnerable in our societies. The aim of this research was to explore the change in impact of COVID-19 public health measures on the mental wellbeing of people living with dementia (PLWD) and unpaid carers. METHOD: Semi-structured, follow-up telephone interviews were conducted with PLWD and unpaid carers between June and July 2020. Participants were asked about their experiences of accessing social support services during the pandemic, and the impact of restrictions on their daily lives. RESULTS: 20 interviews were conducted and thematically analyzed, which produced 3 primary themes concerning emotional responses and impact to mental health and wellbeing during the course of the pandemic: 1) Impact on mental health during lockdown, 2) Changes to mental health following easing of public health, and 3) The long-term effect of public health measures. CONCLUSIONS: The findings from this research shed light on the longer-term psychological impacts of the UK Government's public health measures on PLWD and their carers. The loss of social support services was key in impacting this cohort mentally and emotionally, displaying a need for better psychological support, for both carers and PLWD.

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

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.

A UK survey of COVID-19 related social support closures and their effects on older people, people with dementia, and carers.

OBJECTIVES: The aim of this national survey was to explore the impact of COVID-19 public health measures on access to social support services and the effects of closures of services on the mental well-being of older people and those affected by dementia. METHODS: A UK-wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020. The survey captured demographic and postcode data, social support service usage before and after COVID-19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well-being. RESULTS: Five hundred and sixty-nine participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults). Paired samples t-tests and X2 -tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID-19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well-being in unpaid carers and older adults. CONCLUSIONS: Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future.

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study.

BACKGROUND: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. METHODS: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. RESULTS: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. CONCLUSIONS: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.