The political presence of persons living with dementia in parliament. A qualitative study into the dementia representation work of German parliamentarians

Abstract

Parliamentary representation of persons living with dementia is important because it has the potential to enhance the lives of affected individuals. However, studies that take a closer look at the parliamentarization of dementia are few and far between. Drawing on recent advances in political science representation theory, this paper shows how parliamentary attention to persons living with dementia takes the form of representative claims. An interpretive analysis of 56 parliamentary documents revealed that German parliamentarians voiced what they considered to be the political wants and needs of persons living with dementia in different debates on a broad range of topics. They also created a political presence for persons living with dementia in representative claims about other groups – such as professional carers. Both types of claims were one-dimensional in nature: parliamentarians reduced persons living with dementia to their impairments, rendering them politically visible as vulnerable persons who need to be protected by the same society that their existence is putting a “burden” on. A more multi-dimensional political presence for persons living with dementia is required. In order to improve their dementia representation work, it is important that parliamentarians engage with persons living with dementia and understand how they wish to be engagedin parliament or otherwise.