Ethical issues in dementia care research
Helen Bartlett and Wendy Martin
Research into the health and social aspects of dementia is increasing as the number of people with dementia in the UK continues to rise. As the predominant medical discourses that previously surrounded a person with dementia have been challenged (Bond and Corner 2001), the focus of research now increasingly aims to promote an understanding of how people with dementia construct their social worlds, and participants are viewed as active participants in the research process (Clarke 1999; Crossan and McColgan 1999). Goldsmith (1996) argues about the importance of hearing the 'voice' of the person with dementia and research now increasingly aims to understand their subjective experiences. Whilst this important change is welcomed it has, at the same time, raised new ethical and methodological dilemmas for researchers in dementia care. These issues have been addressed in relation to clinical research (see Agarwal et al. 1996; Baskin et al. 1998; Berghmans 1998; Berghmans and Ter Meulen 1995; High 1993;) and researchers are now starting to explore the ethical dilemmas associated with social research (Adams and Clarke 1999; Clarke and Keady 1996; Crossan and McColgan 1999; Downs 1997; Kayser-Jones and Koenig 1994; Stalker, Duckett and Downs 1999; Stalker, Gilliard and Downs 1999).
This chapter sets out to explore the key ethical issues in dementia research, drawing on lessons from a study about empowering older people with dementia.1 It will set out the approaches adopted in relation to these