‘Still there’: mediating personhood, temporality, and care in London Alzheimer’s Society support groups
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Date
25/11/2019Author
Kennedy, Lilian Elisabeth
Metadata
Abstract
This thesis is an investigation of the lives of people living with dementia and their
families to explore how and why the ‘social death’ of the disease is mitigated
through everyday practices of care. Findings are based on informal interviews and
research done within London Alzheimer's Society services, in particular support
groups for familial carers and support groups for people with dementia. One of
the primary concerns of my interlocutors was keeping a person with dementia in
temporal and spatial synchronicity with the rhythms and routines of family life.
This was a challenge in the face of progressive dementia symptoms that disrupted
people’s ability to make sense of time and to navigate space. I show that staying
‘in synchrony’ is directly linked to constructions of relational embeddedness and
independence, and is at the heart of familial care practices aimed at keeping a
person with dementia ‘still there.’ My interlocutors’ construction of personhood relies on a delicate balance of interdependence in which connection to kin is
encouraged, but also carefully negotiated so that autonomy is protected, and
people do not lapse into explicit dependence. In the contexts of dementia,
independence is a relationally constructed project, and relationality requires
distinction and separation between people. I argue further that my interlocutors
sought to maintain a person with dementia’s personhood by finding ways for
them to recognize and to reciprocate the care that they are given. In line with this,
embodied forms of communication and behaviour previously considered ‘odd’
because they were inappropriate to the time and place came to be seen as
meaningful. In my interlocutors’ practices, we can see that care can be both
constitutive of kinship and individuality, as well as a threat to it. Thus, my research
is situated within anthropological studies that show the importance of both
kinship and autonomy for Western personhood.