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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.

Carers of people with dementia can experience reduced health and wellbeing, but little is known about how best to support them. There is some evidence to suggest that case management may improve outcomes for carers but less evidence about the features of case management services that can effectively support carers of people with dementia. Admiral Nursing operates a case management approach staffed by specialist nurses and is the only service of its kind in the UK dedicated to helping people with dementia and their carers. This paper reports qualitative findings from a mixed methods study of Admiral Nursing. For the qualitative strand of the project, data were collected in focus groups and in-depth interviews with carers of people with dementia (n= 35) and analysed thematically using the Framework approach. The aim of this analysis was to understand differences between the experiences of the carers in our sample with and without Admiral Nursing, applying Freeman’s model of continuity of care (Freeman et al., 2000). Participants who had received Admiral Nursing were recruited from two geographical locations and carers without experience of this service were recruited from two different areas. We found that carers in our sample felt ‘supported’ in circumstances where they received an ongoing service from an Admiral Nurse or other professional with expertise in dementia who was able to develop a meaningful relationship with them over time. We conclude that ongoing support, expertise in dementia and a meaningful relationship are key features of relationship continuity common in carers’ reports of feeling supported. Specialist nurses are well placed to provide this continuity.

Introduction: Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods: This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants), three with family carers (21 participants), and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion: We produced nine key features of good practice which could be used to guide the life story work process. Key elements include: the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

Supplemental material, HSR897091 Supplemental Material for Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: a worked example using life story work for people with dementia by Gillian Parker, Kate Gridley, Yvonne Birks and Julie Glanville in Journal of Health Services Research & Policy

The UK Prime Minister's Challenge on Dementia 2020 includes a target for more research to be conducted in care homes, yet research in care homes can be complex, as they are both homes and workplaces.\ud We reflect on our experiences as researchers on a mixed methods study in six care homes over a year. We include the experiences of care home residents, their family and friends, and members of staff.\ud Care home staff turnover was high, funding was constrained and priorities often differed from those of the researchers. Negotiating ongoing access and data collection was therefore challenging at times. Most residents did not mind taking part, but those who preferred not to felt able to decline. Private space was limited. \ud Research in care homes needs to be adequately planned and resourced, including funding for staff time, if staff, residents and visitors are to participate in a meaningful way.

Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co-ordinated way. The cost-effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross-sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing. The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care-related quality of life, self-efficacy and subjective wellbeing), use of health and social care services, out-of-pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without Admiral Nursing services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that Admiral Nursing services might have a positive effect on carers’ care-related quality of life, self-efficacy and subjective wellbeing. Further, we found little difference in costs between carers using Admiral Nursing and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross-sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without Admiral Nursing services over time.

Background Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources Dementia UK’s AN administrative data set. Results Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding The National Institute for Health Research Health Services and Delivery Research programme.

Unpaid carers are arguably the most valuable resource we have in dementia care, yet caring can have a detrimental impact on the wellbeing of the caregiver and not enough is known about how best to support carers of people with dementia . We report here the qualitative findings of a study of support for carers of people with dementia which took Admiral Nursing (the only specialist nursing dementia service in the UK with a specific focus on carers) as an exemplar. The choice of outcome measures in previous research on interventions for carers has sometimes been poorly aligned to the priorities of carers or the aims of the services evaluated. We therefore interviewed and conducted focus groups with 35 carers of people with dementia to ascertain from their perspectives which outcomes might be influenced by services like Admiral Nursing. Three key outcome areas were identified by carers that appear to be influenced by Admiral Nursing: confidence in caring; carer quality of life; and carer physical and mental health. We selected and tested measurement tools aligned to these outcomes in a national survey of carers.

Unpaid carers are the mainstay of the UK care system for people with dementia. Yet caring can have an impact on the well-being and health of the carer. Admiral Nursing is the only specialist nursing service in the UK that specifically focuses on supporting carers of people with dementia, but evidence of its effectiveness, costs, and relationships to other services is limited. This project aimed to address this gap and explore the feasibility of full-scale formal evaluation.

People with dementia are often described as 'hard to reach' by service providers and practitioners, as well as people in the research community, who do not know how to go about engaging them. Recently, people with dementia themselves have started speaking up through groups like DEEP (the Dementia Engagement and Empowerment Project) and demonstrating that, far from being hard to reach, many people with dementia want to be heard. This is an important issue for adult social care practitioners. As people with dementia are occupying an increasing proportion of the social care caseload - how can social workers overcome communication barriers (perceived and experienced) and support people with dementia to play an active role in their own care planning, as well as wider service development and improvement? At this event you will hear from: Nada Savitch, a specialist in involving people with dementia and supporting professionals to develop more inclusive approaches to their practice. Nada helped start Alzheimer's Talking Point and Innovations in Dementia, and continues to fight to ensure that the voices of people with dementia are heard. Kate Gridley, a researcher who has successfully involved people with dementia in research and has published on this topic http://the-sra.org.uk/wp-content/uploads/social-research-practice-journal-issue-03-winter-2017.pdf We will explore the challenges that involving people with dementia can present, and hear about the things that can help. There will also be plenty of opportunity to ask questions and discuss scenarios relevant to your own practice.

People with dementia are often excluded from taking part in research because of perceived difficulties in consent, capacity and communication. We argue that involving people with dementia in research is important, and describe how we involved people with dementia as both advisers and participants in research about the use of life story work. \ud \ud Researchers worked in partnership with Innovations in Dementia, who supported a network of advisers with dementia. Focus groups were arranged to ensure meaningful contributions by people with dementia. It was difficult to use standardised quality-of-life measures, and we describe the challenges faced with capacity and consent, recruitment and selection, and data collection.\ud \ud We suggest there is a need for (a) new tools for measuring quality of life of people with dementia which do not require participants to respond in prescribed ways, and (b) ethics and consent processes which are appropriate for non-medical research and which facilitate the involvement of people with dementia.