← ESA 2015 homepage

Care and Caregiving


Wed 26. 8.  14:00 - 15:30
room FA 204

'Sod tomorrow': the perspectives of dementia carers on making plans for the future


Tolhurst, Edward
Staffordshire University, United Kingdom

Current dementia policy in England stresses the need to increase the rate of early diagnosis to enable people to make plans for professional support and care. This aim however is not predicated on a credible notion of the challenges faced by people with dementia and their carers. Findings from a qualitative study, which included 16 spousal carers, indicate that this policy principle is yet to be translated into practice: carers highlighted that they were not making plans for the future and preferred to live from 'day-to-day'. Alongside this temporal orientation, carers demonstrated a reticence to seek external support or contemplate the future requirement for residential care. Such perspectives are contextualised by cultural discourses on caring and gender, which position carers as committed and selfless 'heroes' who must place their own needs behind those of the person for whom they care. It can thus be discerned that planning for the future actually contravenes cultural standards of caring. Preparing for the time when responsibilities will be 'relinquished' to an external agency, such as a residential facility, is incompatible with the moral principle that spouses should provide care for as long as possible themselves. Accordingly, seeking support cannot be a proactive process, and must be seen to occur only as a reaction to unmanageable circumstances. Policy and practice-based endeavours to assist people with dementia and their carers must therefore recognise the intense moral challenges that planning for the future presents.