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Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This chapter will share insights from an ongoing research programme to reduce family conflict in the context of dementia care while discussing the accompanying ethical considerations. Research into dementia care has primarily focused on improving outcomes for the care dyad, leaving the influence and input of the wider family unit under investigated. Family conflict can detrimentally impact the quality of care provided and leave caregivers vulnerable to psychosocial difficulties. Family conflict occurs in the context of dementia care but there is little research on how to reduce, or prevent, such conflict occurring. In this research programme, a systematic review investigated the effectiveness of interventions that include the wider family unit to reduce family conflict; only one study was included which evidenced the lack of interventions in this area. A qualitative scoping review was then conducted to explore the lived experiences of caregiving families with experience of family conflict and reported solutions. It was found that conflict occurred due to factors including care decisions and role transitions which impacted relationships and affected care provision. Solutions to conflict were less often reported, indicating an important gap in the literature. Interviews with Alzheimer's Society staff and volunteers revealed that stigma and denial surrounding dementia were prevalent, and families were often reluctant to seek external help. This research programme is currently establishing public patient involvement (PPI) to develop the research methodology and interview questions for people with dementia (PWD) and their family caregivers to explore their lived experiences and potential solutions to family conflict. To conclude, this research programme will propose a family-focused intervention aimed at systemic family conflict for those caring for someone with dementia.

Exploring subjective experiences of people living with dementia through qualitative research has become increasingly common in recent decades. Nonetheless, researchers have shared a number of ethical challenges in involving people living with dementia in research. A concept that has been influential in discussions about ethics within the field of dementia care, in particular, is person-centredness. A person-centred approach reflects values of respect for personhood and the rights of a person and of building mutual trust and understanding. This chapter presents my experience of adopting person-centred ethical practices in a sensory ethnographic study involving older adults living with dementia. I highlight person-centred ethical considerations at the design stage of my study and occasions during the conduct of my research when research methods and processes were adapted to further meet the needs of the participants. A person-centred approach required that I continually assessed the need to make ethical decisions in every aspect of the research process throughout its duration. Building and drawing on positive researcher–participant relationships to inform those decisions and an adaptable research design allowing research practices to be adapted in situ were therefore essential.

The COVID-19 pandemic caused major disruption in community support for vulnerable older people and is thought to have exacerbated existing issues within UK adult social care. This study aims to examine the legacy of that disruption on how meeting centres for people affected by dementia have been impacted in continually evolving circumstances.

Semi-structured interviews and focus group discussions were conducted at three meeting centre case study sites. Ninety-eight participants, including people living with dementia, family carers, staff, volunteers, trustees and external partners, were asked about the impact and legacy of the pandemic upon meeting centres. A thematic analysis was carried out on the data.

Ten themes were identified: ability to re-open venues; increased health decline and loss of members due to isolation; closure or halting of linking services and dementia community support; disruption to diagnosis and referrals; increase in outreach, building communities and overall reach; digital access and use of technology (boom and decline); changes to carer involvement and engagement; continued uncertainty and changes to funding, resources and governance; staff and volunteer recruitment issues; and relief at/wish for return to pre-pandemic norms.

This paper offers new insight into a still-developing situation, namely, the legacy effects of the pandemic upon third-sector community support for people affected by dementia and the health and social care services that support it. The reduction in maintenance of pandemic-era technological innovations is a key finding.

The purpose of this paper is to share the learning concerning how services and the paid carers working in them can support people living with dementia (PLWD) and their unpaid carers to overcome social isolation. This learning comes from the key findings from a Social Return on Investment (SROI) evaluation of a Shared Lives (SL) Day support service, known as TRIO.

SROI is a form of cost-benefit analysis that captures and monetises stakeholder outcomes. The SROI evaluation included a rapid evidence review, an interview study and a questionnaire study. The learning shared is drawn from the interview and questionnaire data that explored the reported outcomes relating to social connection, which included data related to participating in meaningful activities, confidence and independence.

PLWD who accessed the SL Day support service experienced better social connection, a sense of control over their activities (including their social activities) and community presence. A key foundation of these outcomes was the meaningful relationship that developed between the PLWD, their unpaid carer and the paid carer.

This evaluation was a pilot study with a small, albeit representative sample size.

The learning suggests feasible and effective ways for paid carers to support the social connection of PLWD and their unpaid carers with their wider community.

There has been little exploration of how community-based short breaks (like SL Day support) can enhance social connection. The authors drew on a social relational model lens to illustrate how this service type had supported successful outcomes of community and social inclusion for PLWD.

The purpose of this paper is to determine the relationship between trait and situational empathy, and the effect of educational activities on empathy of nursing students towards people living with dementia.

This embedded mixed-methods study compared trait and situational empathy examined situational empathy pre/post didactic and experiential activities with nursing students and used qualitative data from focus group discussions to corroborate the quantitative data.

There was no significant difference between trait and situational empathy. Post intervention scores (situational) demonstrated improvements on empathic concern, shared affect, empathic imagination, helping motivation and cognitive empathy. Focus group discussions supported quantitative findings and also included distress.

Limitations include lack of generalizability, single group threats and exclusion of stakeholder input. Single group threats include absence of a control group, familiarity with the CSES from pre-test to post-test and reactive measurements, as the students were observed by faculty while completing the Dementia Live activity. The perspective of stakeholders would strengthen the impact of the results on implementation.

Information gleaned from this study can help inform administrators in education and in practice. CliftonStrengths assessment and Dementia Live simulation activities can be used for administrators, faculty and students in schools of nursing as well as administrators and health-care workers.

Information from this study can impact those living with dementia as well as their caregivers.

Most studies involving health-care students and empathy do not delineate between trait and situational empathy. This study is unique in that it measured both and sought a relationship between the two. Determining one's personal attributes such as trait empathy, can help students capitalize on their strengths and ultimately enhance patient care.

This paper aims to report the findings of a survey study exploring perceptions about cognitive impairment. These findings are relevant to public health campaigns and education programmes.

A survey exploring respondents’ views and knowledge about mild cognitive impairment (MCI) was circulated via UK networks. A total of 417 respondents completed the survey, including people living with cognitive impairment (n = 10), care partners (n = 23), older adults (n = 83), younger adults (n = 83), general health-care professionals (n = 96), dementia specialist health-care professionals (n = 48) and dementia specialists (n = 40).

Respondents were more confident in their knowledge about dementia than cognitive impairment but wanted more information about both conditions. Younger adults were uncertain about many aspects of MCI, and were the most likely to view MCI as a normal part of ageing. Diet (45.1%, n = 188) and personal behaviour (63.8%, n = 266) were the least endorsed possible causes of MCI, suggesting a lack of awareness of lifestyle choices as risk factors for MCI.

The results highlight the need to provide education and awareness raising about MCI to enable people to seek help in a timely manner and be able to make informed lifestyle choices that may reduce their risk of MCI and dementia. Implementing education about MCI and dementia in schools is a key target, as younger people were the most uncertain or misinformed about these topics. It is clear that further public health initiatives around MCI are both warranted and welcomed by the general public.