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Background: Too often, dementia research is conducted in research silos without thorough integration and the involvement of people with lived experiences, care professionals and the Third Sector. Research can also get lost in academic publications, without reaching those benefiting most from the evidence. The aim of this methods and evaluation paper was to outline the aims, components and evaluation of the public‐facing and ‐engaging Liverpool Dementia & Ageing Research Forum, to provide a blueprint for setting up similar communities of practice. Methods: The Forum was set up in 2019 with the aim to (a) connect different stakeholders in dementia and ageing and co‐produce research and to (b) inform and educate. This paper provides an account of the Forum model and evaluates the following key elements: (1) engagement; (2) experiences of the Forum and its impact (via an online evaluation survey and three reflections). All Forum members and attendees were asked to complete a brief evaluation survey about their experiences from October to November 2022. Three regular Forum attendees provided a case study about their involvement and its impact. Findings: The Forum has reached out to diverse stakeholders and the general public, generating growing interest and engagement since its initiation. Forty‐four members and attendees completed the survey. Most attendees completing the evaluation survey have so far engaged in between 5 and 20 activities (47.8%), and 91% felt the aims of the Forum have been met. Engaging in the Forum has produced various benefits for attendees, including increased research capacity and knowledge, as well as improved connectivity with other stakeholders. Eleven percent of respondents, 39% of lived experts, stated they experienced improved access to postdiagnostic care. Conclusions: This is the first reported multistakeholder Community of Practice (CoP) on dementia and ageing. We make key recommendations for setting up and running similar dementia CoP, as they provide a noninterventional format for raising awareness, capacity and access to dementia care. Patient and Public Involvement: This paper reports on the involvement and engagement of people with dementia, unpaid carers, health and social care providers and Third Sector organisations in a CoP. [ABSTRACT FROM AUTHOR]

Background: Receiving and accessing care after a diagnosis of dementia, both for the person and their carer, are fraught with inequalities. The aim of this public engagement activity was to co‐produce a board game about dementia inequalities to facilitate learning, dialogue and educate about different barriers, and facilitators, to diagnosis and care and to test the game's impact on dementia knowledge with the general public. Methods: Two virtual and two face‐to‐face workshops with people with dementia, unpaid carers, health and social care professionals and Third Sector representatives were held between October 2022 and June 2023. Virtual workshops involved discussions of inequalities and how a board game may feature inequalities. The first face‐to‐face workshop was split into the same activities, aided by outcomes from workshops 1 and 2. Workshop 4 attendees tested the prototype. The impact of the game on knowledge about dementia and inequalities was tested at a game play workshop in October 2023. Results: Forty stakeholders attended four workshops. Workshops provided step‐by‐step thoughts on how the game could be designed or modified. The final game, prototype tested in workshop 4, consists of a one‐sided, two‐half board depicting the prediagnosis process (left half) and postdiagnosis process (right half). Fifty‐two members of the general public participated in the game play workshop, which led to significant improvements in knowledge about dementia (p <.001) and inequalities (p <.001). Discussion: The game can be used to improve knowledge about dementia inequalities for health and social care professionals, carers, people living with dementia, decision makers and the general public. Patient or Public Contribution: This engagement activity fully involved people with dementia, unpaid carers, health and social care professionals and Third Sector representatives throughout, with two unpaid carers as public advisers on the team. [ABSTRACT FROM AUTHOR]

This systematic review examined how information communication technologies (ICT) has been used to access remote post-diagnostic support that address the needs people with dementia, or those of dyad, and explored care recipients' views on accessing support remotely. Concepts relating to dementia and ICT were searched across six databases (PsychInfo, PubMed, Cochrane Library, CINAHL, Social Care Online, and Web of Science) in March 2021 and updated in March 2022. Studies published from 1990 and written in English, German or French were considered for inclusion. Methodological quality was appraised using the Hawker quality assessment tool and reporting structured according to PRISMA guidelines. The search yielded 8,485 citations. Following the removal of duplicates and screening processes, 18 papers reporting on 17 studies were included. Studies described a range of post-diagnostic support, including medical follow-ups and therapeutic sessions, and were often delivered on a one-to-one basis via videoconferencing software. Whilst often relying on assistance from unpaid carers, people with dementia directly engaged with ICT to access post-diagnostic support in 13 studies. Accessing post-diagnostic support remotely appears feasible, nevertheless, care recipients' views were mixed. Access was frequently facilitated by supplying devices and providing ongoing technological support. Accessing post-diagnostic support remotely is likely to benefit some care recipients, however, to prevent widening inequalities in access, services within the current hybrid landscape need to accommodate to people who are digitally excluded. Future research should capture the support provided by unpaid carers to facilitate the engagement of people with dementia to remote post-diagnostic support. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Dementia Care Navigators (DCNs) are professionals without clinical training, who provide individualised emotional and practical support to people living with dementia, working alongside clinical services. Navigator services have been implemented but the service offered vary without a consistent overview provided. The aim of this narrative systematic review was to describe and compare existing service formats, and to synthesise evidence regarding their implementation and impacts. Methods: The review was registered on PROSPERO [CRD42021292518]. Three electronic databases were searched and included studies reported on a DCN service, defined as a service in which non‐clinically trained workers provide personalised advice and support to people with dementia and/or carers in the community. Two independent reviewers screened abstracts and titles and read through full papers for inclusion. Risk of bias was assessed using the Standard Quality Assessment QualSyst. Results: We included 14 papers reporting on six studies. All services were US‐based and only varied by integration and training provided. Studies reported different degrees of impact on service utilisation and on symptoms and mental well‐being of people with dementia and their carers, with too little evidence to draw substantial/meaningful conclusions and studies employing different outcome measures. One study evidenced greater impacts on people with more advanced dementia compared to earlier stages. Conclusions: DCN services have the potential to effectively provide non‐clinical support to people with dementia and carers from the point of diagnosis. Further research from countries other than the USA, focusing on the impact on social care and social support service access and utilisation, and utilising similar established outcome measures are required. Key points: Evidence on the impact of Dementia Care Navigators (DCNs) is limited but shows promising benefits for people living with dementia and their carers.More research needs to be conducted in countries other than the US, where all evidence was reported, and with similar outcome measures to allow comparison.DCNs are a highly useful professional group without medical training, who can navigate people living with dementia and their carers to support and provide support themselves. [ABSTRACT FROM AUTHOR]

Objectives: To understand how the delivery of dementia‐related social support services across the UK adapted during the pandemic. Methods: We devised a two‐part online and telephone longitudinal survey. Providers participated between March and June 2021, and again 3 months later. Information relating to services delivered and delivery methods employed was collected before and during the pandemic at two timepoints (T1 and T2). Results: A total of 75 participants completed the survey at T1, with 58 participants completing the survey at both timepoints. Thirty‐six participants had complete data at T1. Day care centres and support groups were the most delivered primary services. During the pandemic, services shifted from in‐person to remote or hybrid. While in‐person services started to resume at T2, most services remained hybrid. At T2, the frequency of service delivery increased, however, a decreasing trend in usage was observed across survey timepoints. The telephone was the most employed format to deliver remote and hybrid services, however, reliance on videoconferencing software significantly increased at T1. Videoconferencing software was often used alongside the telephone and emails to remotely deliver services. Conclusions: Services were able to adapt and provide support to some service recipients. Complementing novel approaches to service delivery with more traditional formats may facilitate access to service recipients with limited digital literacy. Following the easing of public health measures, many service recipients may be reluctant to engage with in‐person services. Thus, the provision of in‐person and remote services needs to be carefully balanced amidst the current hybrid landscape. Patient or Public Contribution: Two public advisors (a former unpaid carer and a person living with dementia) were involved in designing and piloting the tool, interpreting the results and disseminating the findings. Both public advisors have experience in delivering dementia‐related social support services before and or during the pandemic in the United Kingdom. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: Considering the adverse outcomes of COVID‐19, it is essential to provide adequate support and care for people with dementia and informal carers. Technology can reduce the distress associated with social distancing rules and the decreased access to in‐person services. This study aimed to explore the use of technology and its perceived effects across different settings and countries. Methods: The sample was composed of 127 informal carers and 15 people with dementia from the UK, Italy, Australia and Poland. Semi‐structured interviews explored participants' experiences of using technology and their perceived effects. Transcripts were analysed by researchers in each country using an inductive approach. Results: Three overarching themes were developed: (1) Technology kept us alive during COVID‐19; (2) Remote care was anything but easy; (3) Perceived technology limitations. Many similarities emerged between countries supporting the role of technology for being socially engaged, having a routine, and staying active. However, the benefits of technology for health and psychosocial care were more limited. Across countries, barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments. Help and supervision from carers were also necessary and sometimes perceived as an additional burden. Conclusions: Technology can effectively reduce the shrinking world that may be amplified by the pandemic, thus preserving people with dementia's social skills and maintaining family connections. However, for more extensive and well‐adapted use of technology in dementia care, actions should be taken to overcome the barriers to the access and use of technology by older and vulnerable people globally. Key points: During COVID‐19 technology allowed people with dementia and informal carers to be socially engaged, have a routine, and stay active.Benefits of technology in dementia health and psychosocial care were limited.Barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments.The pandemic should prompt actions towards a more extensive and well‐adapted use of technology in dementia care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: Little is known about how community services and institutional care settings have adapted to providing support since the COVID-19 pandemic. The aim was to explore how these care services have adapted during the pandemic in the UK and are providing care to people living with dementia (PLWD) and carers. Method: Semi-structured telephone interviews were conducted in June and July 2020 with 16 purposefully sampled unpaid dementia carers. Participants were asked about their experiences of accessing care services since the lockdown, and whether they were beneficial, if accessed at all. Results: Three themes were identified: (1) Impacts of no activities; (2) Difficulties accessing care during the pandemic; (3) Remote vs. face-to-face support. Loss of access to previously enjoyed activities and having had to shield for many PLWD is suggested to have led to severe physical and cognitive deteriorations, advancing the dementia. Where remote support was available, this was helpful to some, but did not replace the benefits of face-to-face support. Where PLWD were residing in a care home, carers had very limited remote access. Conclusions: This is the first study to explore the impact on carers both from a community and institutionalised care angle. Few care services have adapted to providing remote support. With the vaccine taking time to be accessible to everyone, it is vital for organisations to work closely with carers and PLWD to adapt services to provide much needed support. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]