I am doing a qualitative PhD study titled ‘The Lived Experience of Risk for People with Early Stage Dementia (Alzheimer’s type) : a longitudinal phenomenological study’.
Risk is viewed as subjective — people understand and manage risk based on their past experiences and knowledge about the world. Risk will be used as an exemplar here to view autonomy and the right to exercise choice and make one’s own decisions whenever possible. When a person has dementia however, they may be seen as vulnerable, and risk may be minimised, controlled or even denied, in the best interests of that person. Beauchamp and Childress (1989) see the recognition of the right to take a risk as inherent in the principle of respect for autonomy, and this may come to mean the autonomy to take, or not to take a risk. This is a key development in risk’s changing perception for a person with dementia – its relation between risk and rights.
Risk is the lens to find out how people managed change in their life, and embedded memories in how people coped in the past will be an indicator of how they’re coping now. Utilising a longitudinal approach with six monthly interviews over a period of two years; transitional preferences and forward planning will be explored amid change and often disruption related to a diagnosis of dementia. It is within this choice-making that the concept of risk coheres. A key question for my study is ‘Who owns the risk [for a person with dementia] and who is responsible for its management?’