What Is It to Be a Daughter? Identities Under Pressure in Dementia Care

Abstract

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.

Moral Learning in an Integrated Social and Healthcare Service Network

“…For example, people inform us about their perceived responsibilities when they excuse themselves or when they show regret. Practices of responsibility are complicated processes in which identities, relations and values are constructed and reconstructed [2,5,14,19]. Below we will demonstrate that this practice reflects a process of a moral order being constructed [32] or, more dynamically-a moral ecology [26].…”

Using meta‐ethnography to understand the emotional impact of caring for people with increasing cognitive impairment

“…Time also offered a sense of continuity as each step in deterioration was identified and adapted to. These changes, which began as a dual effort to adjust, increasingly became part of the carer role only (Chesla et al, 1994;Birgersson & Edberg, 2004;Cheung & Hocking, 2004;Courts et al, 2005;Gruffydd & Randle 2006;Persson & Zingmark, 2006;Goldsteen et al, 2007;Dunham & Cannon, 2008).…”

Dialogue for Air, Air for Dialogue: Towards Shared Responsibilities in COPD Practice

“…Besides reflection, eliciting, articulating and questioning values, it also contributes to the direct experience of symptoms and suffering [24]. The telling of the life or illness story helps the therapist and patient to determine what specific treatment is needed and most of all: who the person is [3,20]. A life story is a narrative of someone's life in order to give meaning to the things he experienced [31].…”

“…Healthcare professionals often lack the required communication skills to elicit patients' preferences and involve them in treatment decisions [15,33]. Patients may well expect more than just information from their doctor, such as an advice from an expert [20] or support and a listening ear to deliberate their situation with an empathic caregiver [29]. If mutual expectations are not discussed, this may lead to misunderstandings, which ultimately have a negative effect on the quality of care [4,9,26].…”