Spirituality is a fundamental feature of being a person. Spirituality is also a concept we tend to define cognitively. But how can spirituality be recognized and understood in the case of a person with dementia?
This qualitative patient oriented project has two aims:
- To reveal a deeper understanding of how spirituality appears in persons with dementia.
- Further it will together with relatives and caregivers explore possible clinical implications of the findings.
The data for the first aim were collected by participant observation in a hospital bed unit over a period of four months. Ten patients with severe dementia were included. The researcher participated in daily activities like meals, walks outside, sing-alongs, exercise, or just spending time with the patients, either individually or in groups. The observations were noted and written down in fieldnotes, and analysed using systematic text condensation. The research question for the observation was: How and in which situations does faith and spirituality appear among people with severe dementia? Conversation on a cognitive level with a person with dementia about abstract topics such as spirituality, is understandably not always possible. However, by spending time with a person with dementia, we can experience that everyday life consists of events that carry with them existential themes. It can be the body’s actions, reactions or emotions that communicate something which is not necessarily expressed verbally. In this study when events can be interpreted as narratives with existential themes, we label them as existential dramas. Direct manifestations of spirituality are not easily recognised in the material. However, looking closer we observe various examples of existential dramas, each containing underlying dynamics that represents traces of spirituality. Caregivers working with PWD in hospital will also be interviewed in focus group interviews to explore their experiences on how spirituality appears among their patients with dementia.
For the second aim, findings from the observation of patients and interviews of caregivers will be presented in a seminar for health personnel. In the seminar the findings will also be discussed in focus interview groups to explore the possible clinical implications. With the same purpose findings will also be presented and explored in a separate focus group interview for relatives of PWD.
The overall purpose of the project is to provide a better and more personalized health service and to protect patients’ rights when it comes to practising faith and spirituality for persons with severe dementia.
Tor-Arne Isene, PHD-student
Hans Stifoss-Hanssen, professor, Centre of Diaconia and Professional Practice, VID Specialized University Oslo
Hilde Thygesen, associate professor, Faculty of Health Studies, VID Specialized University Oslo
Lars J. Danbolt, professor, Norwegian School of Theology Oslo