Search results

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.

This chapter will begin by exploring the importance for people living with dementia of maintaining a sense of self or ‘personhood’, and how this is linked directly to wellbeing. It will chart how the initial pilot projects were developed to embrace older people living with a dementia diagnosis, and how we teamed up with different partners in Brazil and on Merseyside, showing how the methodology outlined in the toolkit can be used to foster this sense of self or ‘personhood’. In both geographical locations it proved vital to establish contacts with enthusiastic partners and to work closely with occupational therapists and/or nursing home staff. On Merseyside we also benefitted from the expertise of a local community cinema which had extensive experience of running dementia-friendly film screenings. Finally, drawing on concrete results from the use of the toolkit's methodology in a recent project that Lisa conducted in Brazil, this chapter will present some conclusions about how music and film can help carers connect with the person living with dementia, and be used as a powerful tool for restoring a sense of personhood, thus increasing a sense of wellbeing and improving the quality of care.

An overview of the impact of dementia that focuses on underdeveloped countries across the globe, and migrant and minority ethnic communities within the developed world. Increased longevity increases the risk of dementia and brings new challenges in terms of cultural perspectives and cultural obligations in the care of elders. The chapter examines these challenges in detail and their consequences in planning for support and care.

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.