Navigating in a changing world : experiences of everyday life from the perspective of persons with cognitive impairment or dementia

Abstract

The overall aim of this thesis was to enhance the knowledge of how people with cognitive impairment or dementia experience, approach, and manage the consequences of illness in the context of everyday occupations. Listening to the subjective experiences of people with cognitive impairment or dementia, who live in their own homes, can generate a deepened knowledge of their living conditions. This knowledge might support occupation-based interventions contributing to the well-being of people with dementia.

The thesis includes four studies. The participants were persons with cognitive impairment or dementia. Study I focused on nine persons work situations and the attitudes of seven workplace respondents. In Study II, the motives and meaning of everyday occupations of six persons with Alzheimer s disease were explored. In Studies III and IV, awareness of dementia in the context of occupations was investigated from two perspectives. These were the use of a phenomenological approach to the lived experiences of six persons with AD, and measurement of the relationship between occupational performance and awareness of disability in 35 older adults with cognitive impairment, AD, and other dementias. Studies I-III used qualitative interviews and observations that were analyzed with a constant comparative method (Studies I-II), and a phenomenological method (Study III). In Study IV, data were collected with the AMPS and the AAD and analyzed with descriptive, nonparametric statistics.

The findings in Study I showed that the possibility of remaining at work seemed to depend on multiple factors, including the individuals apprehended ability to work and the length of the sick leave. A great variety of personal motives and meanings of everyday occupations were found in Study II. Identifying and supporting these occupations might contribute to the well-being of persons with AD living at home. A structure of awareness of disability was described in Study III with two main characteristics. These were discovering and managing changes in occupational and social interactions, and reflecting on a changing life situation. The results of Study IV showed a positive relationship between occupational performance and awareness of disability, where participants with AD were less able and less aware than participants with MCI. However, there was a large variation in awareness of disability within the diagnostic groups.

In conclusion, the findings of these studies showed that everyday occupations held a variation of individual meaning for the participants, and provided them with an important arena for experiencing and expressing changes. Supporting persons to continue with occupations of individual meaning for as long as this is experienced as beneficial by the person with dementia was highlighted as an important task in care. Their perceptions of changes in everyday occupations were intertwined with their experiences of being ill, but their understanding of the illness was difficult to integrate with the changes they experienced. Furthermore, the findings showed that people with dementia may be sensitive to other peoples perceptions of them. This might be of importance in their own views of their situation, and hence significant for how to approach persons with dementia in clinical practice. Finally, a multidimensional approach using both interviews and measures is suggested to capture awareness in people with cognitive impairment or dementia.