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Introduction Societal discourses of dementia are medicalised and dehumanising. This leads to a social problem: the loss of personhood in dementia care. The communication technique Intensive Interaction, however, honours personhood. The current study aimed to explore how paid caregivers of people with dementia enact societal discourses of dementia, with and without the context of Intensive Interaction. This was to explore ways to address the loss of personhood in dementia care. Method Paid caregivers from two residential care homes attended an Intensive Interaction training day. Caregivers participated in focus groups before and after training. Transcripts of the focus groups were analysed with Critical Discourse Analysis, an approach which relates discourse to social power. Results Before Intensive Interaction training, carers accessed medical discourses of loss, non-communication and lack of personhood. ‘Being with’ people with dementia was framed as separate to paid work. After training, caregivers accessed discourses of communication and personhood. Intensive Interaction reframed ‘being with’ people with dementia as part of ‘doing work’. Family caregivers were largely absent from discourses. Care home hierarchies and the industrialisation of care were barriers towards honouring personhood. Conclusions Medical discourses of dementia reinforce a status quo whereby interpersonal interactions are devalued in dementia care, and professional ‘knowledge’ (thereby professional power) is privileged over relationships. Intensive Interaction may enable paid caregivers to access person-centred discourses and related practices. However, this requires support from management, organisational structures, and wider society. More research is needed to identify ways to involve families in residential care and to explore the effects of using Intensive Interaction in practice.
Introduction Societal discourses of dementia are medicalised and dehumanising. This leads to a social problem: the loss of personhood in dementia care. The communication technique Intensive Interaction, however, honours personhood. The current study aimed to explore how paid caregivers of people with dementia enact societal discourses of dementia, with and without the context of Intensive Interaction. This was to explore ways to address the loss of personhood in dementia care. Method Paid caregivers from two residential care homes attended an Intensive Interaction training day. Caregivers participated in focus groups before and after training. Transcripts of the focus groups were analysed with Critical Discourse Analysis, an approach which relates discourse to social power. Results Before Intensive Interaction training, carers accessed medical discourses of loss, non-communication and lack of personhood. ‘Being with’ people with dementia was framed as separate to paid work. After training, caregivers accessed discourses of communication and personhood. Intensive Interaction reframed ‘being with’ people with dementia as part of ‘doing work’. Family caregivers were largely absent from discourses. Care home hierarchies and the industrialisation of care were barriers towards honouring personhood. Conclusions Medical discourses of dementia reinforce a status quo whereby interpersonal interactions are devalued in dementia care, and professional ‘knowledge’ (thereby professional power) is privileged over relationships. Intensive Interaction may enable paid caregivers to access person-centred discourses and related practices. However, this requires support from management, organisational structures, and wider society. More research is needed to identify ways to involve families in residential care and to explore the effects of using Intensive Interaction in practice.
Dominant discourses surrounding dementia tend to focus on narratives of loss and decline. Simultaneously, individuals living with dementia are vulnerable to being dispossessed of personal narratives supportive of identity and well-being. How older people with dementia story their experiences of resilience in this context has not previously been investigated. In response, this qualitative study utilised a narrative approach to understand lived experiences of resilience shared by eight older people living with dementia. Structural analyses indicated that participants’ personal narratives regarding resilience in living with dementia contained distinct and common phases (The Diagnosis, Initial Tasks, 'The High Point', Reflecting on Limitations and Focusing on Today) as well as a variety of dynamic characters. Overarching themes within participants’ narratives included sense of self/identity, being connected to others, sense of agency and having positive attitudes. Participants narrated richer, more active personal stories than those typically represented in dominant social discourses surrounding dementia. As such, their narratives depict lived experiences of resilience that unfolded over time in response to adversity and uncertainty and involved a dialectical process in relation to adjustment and well-being. The findings have important implications for the way resilience in living with dementia is framed and supported.
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