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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]

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]

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]