Author
- Penny Roe1
- Flinders University, Faculty of Health Sciences1
2011
Excerpt
In this thesis, I have sought to understand the forces that, for people with advanced dementia, constrain or enable their interactions with others in a social context. I am concerned, in particular, with their final journey. The study has revealed a gap between a reality in which people with dementia are required to accept residential care, and a rhetoric which advocates living at home for as long as possible. It has demonstrated how, for a person with advanced dementia, the capacity to act for oneself contributes to the opportunity or ability to remain and die at home.
A hermeneutic approach was used to investigate divergent views on living at home with advanced dementia. Fifty participants from three South Australian organisations providing community aged care were recruited. They included persons with dementia, carers of people with dementia (current and past), coordinators who manage packages for community care, care workers, and registered nurses engaged in community care. Interviews, quantitative data, and longitudinal case studies were thematically analysed in the context of Habermas 's theory of communicative action.
The study demonstrates that, for persons with early stage dementia, community care is negotiated effectively, but this is less apparent as dementia progresses to later stages. When people with dementia were excluded from the process of decision making about their health and well-being communication became 'distorted', whether concerned with care at that time or in the future.
For example, a coordinator of community care would be likely to be excluded from negotiations when an individual with dementia was in hospital. Medical discourse and medical opinion holds a dominant place in determining responses to incidents occurring in the course of care. A person with dementia is at risk of 'colonisation', that is, being subject to and overpowered by rules and regulations by which the health care system is maintained, to the neglect of individual wishes and values.
People with dementia frequently failed to recognise and confront the reality that they would lose competence with the further progress of time. It was often left to family members to make necessary decisions on their behalf, but commonly carers were reluctant to make decisions in advance. Occasionally, however, persons with dementia did demonstrate sufficient insight and determination to shape a future plan for care, articulating wishes sufficiently clearly to help guide carer decisions. When this happened, the risk of 'colonisation' was reduced, and consensus decision making involving most of the relevant parties proved more achievable.
From these findings, a potential dementia care pathway for dying at home was developed. It builds on existing clinical care pathways and draws on Habermas 's theory of communicative action. The aim of the pathway is an understanding of the values and experiences of living with dementia that is theoretically-based and not dominated by clinical concerns. The pathway is presented as ready to be tested for its value in the care of persons with advanced dementia living in community settings.
A hermeneutic approach was used to investigate divergent views on living at home with advanced dementia. Fifty participants from three South Australian organisations providing community aged care were recruited. They included persons with dementia, carers of people with dementia (current and past), coordinators who manage packages for community care, care workers, and registered nurses engaged in community care. Interviews, quantitative data, and longitudinal case studies were thematically analysed in the context of Habermas 's theory of communicative action.
The study demonstrates that, for persons with early stage dementia, community care is negotiated effectively, but this is less apparent as dementia progresses to later stages. When people with dementia were excluded from the process of decision making about their health and well-being communication became 'distorted', whether concerned with care at that time or in the future.
For example, a coordinator of community care would be likely to be excluded from negotiations when an individual with dementia was in hospital. Medical discourse and medical opinion holds a dominant place in determining responses to incidents occurring in the course of care. A person with dementia is at risk of 'colonisation', that is, being subject to and overpowered by rules and regulations by which the health care system is maintained, to the neglect of individual wishes and values.
People with dementia frequently failed to recognise and confront the reality that they would lose competence with the further progress of time. It was often left to family members to make necessary decisions on their behalf, but commonly carers were reluctant to make decisions in advance. Occasionally, however, persons with dementia did demonstrate sufficient insight and determination to shape a future plan for care, articulating wishes sufficiently clearly to help guide carer decisions. When this happened, the risk of 'colonisation' was reduced, and consensus decision making involving most of the relevant parties proved more achievable.
From these findings, a potential dementia care pathway for dying at home was developed. It builds on existing clinical care pathways and draws on Habermas 's theory of communicative action. The aim of the pathway is an understanding of the values and experiences of living with dementia that is theoretically-based and not dominated by clinical concerns. The pathway is presented as ready to be tested for its value in the care of persons with advanced dementia living in community settings.