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Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using ‘positive’ styles and the protective use of ‘negative’ disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support.

Background: The COVID-19 pandemic triggered rapid and unprecedented changes in the use of digital technologies to support people's social inclusion. We examined whether and how co-resident and non-co-resident family carers of people with dementia engaged with digital technologies during this period. Methods: Throughout November 2020-February 2021, we interviewed 42 family carers of people with dementia from our DETERMIND-C19 cohort. Preliminary analysis was conducted through Framework analysis, followed by an inductive thematic analysis. Findings: Digital technologies served as a Facilitator for social inclusion by enabling carers to counter the effects of the differing restrictions imposed on them so they could remain socially connected and form a sense of solidarity, access resources and information, engage in social and cultural activities and provide support and independence in their caring role. However, these experiences were not universal as carers discussed some Challenges for tech inclusion, which included preferences for face-to-face contact, lack of technological literacy and issues associated with the accessibility of the technology. Conclusion: Many of the carers engaged with Information and Communication Technologies, and to a lesser extent Assistive Technologies, during the pandemic. Whilst carers experienced different challenges due to where they lived, broadly the use of these devices helped them realise important facets of social inclusion as well as facilitated the support they provided to the person with dementia. However, to reduce the ‘digital divide’ and support the social inclusion of all dementia carers, our findings suggest it is essential that services are attuned to their preferences, needs and technological abilities.

Supplemental Material for Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic by Carmen Colclough, Eleanor Miles, Rotem Perach, Ben Hicks, Josie Dixon, Jennifer Rusted, Kate Gridley, Yvonne Birks, Margaret Dangoor, Paul Donaghy, Riona Mcardle, Elen Moseley, Harsharon K. Sondh, Sube Banerjee in Dementia

Background and Objectives: Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as ‘active social agents’, we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges. Research Design and Methods: In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework. Findings: Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to ‘get out’ into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of ‘nodding acquaintances’; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to ‘get out’; and employing similar emotional coping strategies for the pandemic and dementia. Conclusions: Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, ‘safety-netting’ through the availability of a named professional, advocacy and support and use of ‘check-in calls’ and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.

Older people in England who pay for social care from their own funds (‘self-funders’) receive little help in seeking and arranging care compared to older people funded by their local council. This suggests an implicit assumption that people funded by local councils need help to manage their care whereas self-funders do not. This paper reports findings from a scoping review of published evidence from England, Scotland and Wales on the skills that older people need, and the help they get, to seek, arrange or manage use of social care, and how this help affects outcomes. Searches undertaken in October 2018 resulted in the inclusion of thirty-six empirical papers and seven reviews. Thematic analysis identified the importance of everyday life and specific business skills, and personal attributes including objectivity when evaluating options. The review identified two significant gaps in the evidence; first, how help in seeking and arranging care compensated for lack of, or complemented existing, skills; and second, how outcomes for people receiving help in arranging care compared with those not receiving help. The paper concludes that a tailored approach to supporting older people arrange and manage care, irrespective of funding, should be considered.

Disabled people are under-represented and can experience discrimination in the workplace in the UK and globally. The employment of a Workplace Personal Assistant (WPA) is an option for disabled people who require assistance to undertake their job role. The WPA role is designed to increase the accessibility of the workplace via personalised and self-directed assistance, yet is little known or understood. The dynamics of these assistance relationships are explored from analysis of interviews with disabled people, their WPAs and representatives of the organisations in which they work. Disabled people who use a WPA undertake two jobs in one day - their substantive role and the management of their WPA. Understanding these dual roles, and recognising the subtle skills required and additional labour undertaken, can help to challenge the ableist assumptions which shape the workplace and help open up the workplace for disabled people who require a WPA.

Context: Social care-related decisions can be complex but despite their widespread use in health care to help patients make similarly complex decisions, the use of decision aids in social care is not well examined. Objective: To review the international research evidence on decision aids in adult social care and investigate the availability of such aids for planning later life care on adult social care-related websites in England. Methods: Decision aid was defined broadly. Systematic searches for empirical research evidence published in English between 2000 and 2020. Searches were undertaken in January and February 2020. Websites of 11 UK social care-related voluntary and quasi-governmental organisations plus 53 English local councils searched for decision aids. Findings: Five papers published between 2001 and 2019 reported the development of five different decision aids. Two decision aids were web-based; three were paper-based or of unspecified formats. Two were assessed against international criteria for decision aids. Three further papers reported evaluations of the effectiveness of two of these aids. Most social care-related websites searched did not offer any relevant decision tools. Limitations: Some papers described tools that were primarily research instruments. Relevant papers may have been missed due to technical challenges. Not all council websites were searched. Implications: Future research to develop decision aids might benefit from drawing on earlier literature about people’s attitudes to and readiness to engage with care planning and how this translates into willingness to use decision aids. Combining decision aids with strengths- and asset-based approaches in adult social care practice could be fruitful.