Falling into the depths of his mind: Action research as a way of maintaining a relationship with a loved one with dementia

Abstract

Maintaining a meaningful relationship with a loved one who is diagnosed with dementia and hospitalized is significant, both for the person with dementia and for his/her relatives and friends. Nevertheless, the process of dementia poses great challenges and obstacles for communication. This article’s aim is to discuss the potential contributions of action research (AR) as an effective way for managing these challenges. Based on the researcher’s personal experience of using AR cycles of action–reflection–action in interactions with a loved one with dementia, the study identifies and discusses four such cycles: 1) negotiating the diagnosis; 2) sliding between reality and delusion; 3) reflecting on the mental experiences of dementia; 4) positioning myself in relation to the loved one and the institutional setting. The article contributes to the development of AR theory in two major ways: first, it explores the possibility and challenges of conducting AR when the participants’ ability to conduct a dialogue cannot be taken-for-granted and is itself the topic of inquiry. Second, it explores the potential contributions of AR for coping with situations that are usually described and approached in medical terms.