How perceived societal understandings and expectations impact adult childrens’ risk narratives for their parents with dementia

Abstract

The UK government has prioritised maintaining people with dementia in the community setting to reduce costs to society (DH 2009) and there is an increasing societal pressure on family members (especially adult children) to take responsibility for dementia care (Pickard et al. 2007). Ineffective management of risk may be one reason people with dementia may require hospital or residential care. Another reason may be due to burdens associated with maintaining safety for a family member with dementia. Each group of dementia care stakeholders may be considered a culture with differing knowledge, values and responsibilities which in turn shape how they manage risk for the person with dementia. However, each of these cultures will also be impacted upon by societal norms and expectations. This project aimed to understand how adult children may be impacted by cultural norms and societal expectations when managing risks for their parents with dementia. Twelve adult children as case studies produced both written and interview narratives where they constructed and reconstructed risk accounts for their parents with dementia. These were analysed through narrative inquiry which focussed on how the adult children structured their narratives, utilised characterisation and rhetoric, positioned themselves and how they positioned their audience (society). The participants positioned themselves at differing levels of responsibility which impacted on how and why they constructed risks and justified management strategies. They also required less ‘narrative effort’ (use of more or less narrative elements in constructing their accounts) for health/safety risks when compared with non-safety risks. This implies that society, as the narrated to audience, may better understand, and perhaps assign more importance to, health/safety risks as opposed to non-safety risks. The thesis concludes that burden may not only be associated with (in)effective risk management for parents with dementia, but also from perceived societal expectations and pressures to ensure safety for a parent above all else. The findings have implications for greater societal education with respect to dementia care and better support for adult children as caregivers.

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Identifiers

ORCID for Amelia Charlotte Abbott: orcid.org/0000-0003-0078-5699

ORCID for Lucy Brindle: orcid.org/0000-0002-8933-3754

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