”A developmental process for us too”

The construction of experiential caring knowledge among informal dementia carers

Abstract

This paper provides an insight into the process of constructing the knowledge that family caregivers of people living with dementia use in processing and coping with their complex life situation and caring challenges.

When the research participants embarked on their caregiving journey, they typically had very little or no prior knowledge of dementia, which not only made it difficult for them to recognise the symptoms, but also made them feel helpless and powerless. According to their dominant experience, they did not receive the informational support they would have needed from the health care system – the primary contact point for the formal care services. Many of them only realised this later as dementia progressed and its symptoms and the care needs it created changed. Over the years, carers have experienced and learned more and more about the nature of dementia and the particularity of their own situation, experiential knowledge which became a key element in their coping and in enhancing their self-efficacy.

The study explores this journey, the pathways of experiential knowledge construction of caregivers, and the caregiver coping strategies built on this knowledge through an analysis of in-depth interviews with 22 caregivers using the methodology of constructivist grounded theory. In the discussion section, it draws policy relevant conclusions that can be used to address dementia as a public health priority.