Gillies, Brenda

The contribution made by informal carers to the provision of care in the community in the UK is formally acknowledged in the 1995 Carers (Recognition and Services) Act. This legislation has focussed attention, once again, on the relationship between formal services and those providing informal care. The Act has re-created a lack of clarity about the position carers hold in the carer dyad. Findings are presented here from an exploratory study about the experience of dementia.

This paper looks at the ambiguous journey travelled by family, mainly spouse, carers in Scotland is based on 37 interviews which formed part of a larger study exploring the subjective experience of 20 individuals with dementia. The majority of the interviews were conducted with the carer alone, others with the relative with dementia (RWD) present and some as joint interviews.