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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.

Science is too important to be left solely to scientists, and so the public need to be involved in the design, funding, delivery and implementation of health research, and in discussions about the ethics of research. Since the 1960s, the United Kingdom and many other countries have included scientists from outside health care in various roles in health care research, as well as nonscientists, ordinary citizens, patients and carers. In the last 20 years, these roles have increased in number and range, but significant challenges remain in ensuring that research is always conducted in an ethical fashion. Errors arise when it is assumed that research is ethical because it has passed a single test rather than being subject to constant vigilance; when academic training on its own is regarded as sufficient to guarantee ethical conduct; when pontification about sophisticated dilemmas ignores fundamental matters of equity and helpfulness and when there is an absence of curiosity about the value positions of others (Boaz et al., 2016). We argue in this chapter that in every setting, citizens have the potential to contribute to ethical debates, whether they assist in establishing priorities for research funding, serve as research funding co-applicants, take the lay member places on Research Ethics Committees and Steering Committees, collect and analyze data or co-author academic papers.

Both authors have been involved as lay members in research and other activities for a number of years, ensuring they represent the views of members of the public. This chapter identifies what is, and what is not, patient and public involvement as well as highlighting the importance of involving members of the public in all aspects of the research process. Best practice is explored as identified in the UK Standards for Public Involvement 2019 and the UK Policy Framework for Health and Social Care Research 2020. The implications of the Mental Capacity Act and its wording on research matters are also considered. Case studies have been incorporated to highlight the impact of involving patients and members of the public in all aspects of the research process. These include the lessons learnt by researchers and lay members of the team. The aspiration is to move towards more collaboration between members of the public and researchers; therefore, we discuss co-production of research or community-based participatory research (CBPR). We highlight the need for a better partnership between researchers and members of the public. The benefits of this are explored along with the consequences for all involved.

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.