Abstract
Tales + Dementia + Study: Research with people suffering from dementia
The Tales+Dementia+Study is a scientific support for the project “Once upona time… FAIRY TALES AND DEMENTIA”, which offers fairy tale narratives forpeople suffering from moderate to severe dementia. The project takes place in five nursing homes in Berlin, Frankfurt/Main and Stade (near Hamburg). The study is looking into the impact of the narratives on the participants’ well-being to identify positive and supportive interactions for the day-to-day interaction between people suffering from dementia and theirhealth care professionals. At the same time, the study wants to define quality characteristics for narrator, to enhance further training programmes for narrators.
Our study must face the fact that all of our participants have appointed legal guardians, who signed the written consents for participation. Indeed, the participants of the project all suffer from cognitive and emotional impairments as well as from health problems and diseases associated with aging, like diabetes, cardiovascular problems, hearing loss. How can peoplesuffering from dementia co-operate in the process of our study?
We use qualitative research methods. In the run-up for the intervention we studied the care documentation, participated in regular situations in the nursing homes and tried out different ways of bonding. With the help of this kind of ethnographic fieldwork we want to take part in our participants’ life in nursing homes, understand their expressions and ways to talk and interact with peers and health care professionals. During the intervention we use videography. With two cameras we record the interaction between the auditors and the narrators and vice versa. To understand the emotional and bodily expressions in addition to verbal expressions we analyze the data (videos) from multiple perspectives. Our question with regard ro our methodology is: How and how far can we further adapt participatory approaches to research with people suffering from dementia?
Estimated 90 participants (enrolment still ongoing) suffering from moderate to severe dementia who display challenging behaviors and four professional narrators are taking part in the project, which is funded by the German Federal Ministry of Family Affairs, Senior Citizens, Women and Youth, Senate Department for Social Affairs and Health. Project duration February 2014 to August 2015.
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