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This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person’s well-being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another?

To investigate this issue we use the theoretical perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care.

The results of this study show how the identity of a family-member is put under pressure and changes during her loved one’s illness that leads to difficulties and misunderstandings concerning the issue of responsibility. These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they, at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are.
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Keywords: dementia; family caregivers; identity; normative expectations; responsibilities

Document Type: Research Article

Publication date: January 1, 2007

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