Living with dementia in New Zealand: an action research study
The aim of this study was to undertake a systematic inquiry into the question of how people who live with dementia in the community can be supported to engage in daily activities. It is well known that dementia affects functional abilities yet little research has been done to produce an in-depth description, from people who have dementia and their family/whānau, of the inherent difficulties encountered with functioning on a day to day basis in the community, when living with dementia. In a quest for greater understanding, action research, underpinned by critical hermeneutics, brought together action and reflection, theory and practice to generate knowledge that can be used to further inform action. Described as informed committed action, the aim of action research is to act in the world, to practice and to do rather than simply engage in discourse.
International trends call for inclusion, and research indicates that people with dementia have an important role to play in identifying their own support needs. Consequently, eleven people with mild to moderate dementia and eleven family/whānau members were recruited to engage in dialogue with the researcher, to enter into discourse with each other in focus groups, and to engage in action on their own behalf. Data were gathered by interviews and observations in participants’ homes and community settings over four years. Data collection and analysis were reciprocally integrated, and the participants engaged in the production of knowledge.
The process of critical hermeneutic data analysis had three stages, each of which was informed sequentially by Lewin’s (1948) cyclic process of action i.e. observe, reflect, act, evaluate, and modify. In this way actions were grounded in and evaluated throughout the research process. Coded data generated categories. The adequacy of the categories was evaluated to clarify emerging understandings. Further actions were then modified to enhance understandings.
Three interacting themes emerged from the process of analysis: The nature of being in the world with dementia, Difference, and Prejudice and power. People with dementia and their family/whānau are keen to challenge the disease process, they can and do problem solve and use their initiative. However, the findings reveal a constant tension between ways of living with dementia, political strategies, the social environment, and opportunities for occupational engagement.
The central argument arising from the findings is the significance of attitudes, in particular the personal attitudes of people with dementia. Implications for primary health care providers and policy makers highlight the need to change the ways in which dementia is perceived as the pursuit of positive attitudes may help to change histories and enable people with dementia to live well.