with dementia in research
Methods and motivations
As probably one of the most excluded groups in society, people with dementia experience the double jeopardy (Rodeheaver and Datan 1988) of being older people with a cognitive impairment. For women this experience can be even more isolating and exclusionary (Proctor 2001) in a society where ageism and stigma against people with mental health issues reflect deep power inequalities in the relationships between individuals and wider society. Recent work with older people in general has attempted to address such imbalances, especially between service users and health care professionals (Beresford and Harding 1993). Despite this increased recognition of the need for older people to retain and maintain choice and control in their lives (Nusberg 1995), people with dementia remain a silent and excluded voice. With recent moves in policy and practice emphasising social inclusion and justice (Adults with Incapacity (Scotland) Act 2000; Scottish Executive 1999), perhaps it is timely to examine the position of people with dementia in social research. To what extent have we developed effective motivations and methods through which the experiences and views of people with dementia can be included in and inform research, policy and practice contexts?