Activity engagement with people with dementia at home: family carers' perspectives

Abstract

Government policies currently emphasise the need to support those with dementia at home, and family carers are increasingly advised to engage their relative in daily activities. Knowledge about family carers involvement in the activity needs of individuals living with dementia is fragmented. This study explored carers' decision making related to their engagement with their relative in everyday activities at home.

Following research governance and ethical approval, 30 in-depth interviews (initial and follow-up) were carried out with 15 resident-carers who were recruited via local community mental health teams. Then five focus groups were conducted through carer support groups. The majority of carers were spouses, three were daughters and one a female friend. Both the interviews and focus groups explored the experiences of involving relatives in daily activities and highlighted the carers' strategies, feelings and reflections. Themes were identified which formed a temporal model consisting of five activity patterns. These were the usual, recognisable, illogical, irresponsible and dispossessed patterns. The model illustrated the complexity and long-term nature of family carers activity-related decisions. Over the passage of time carers attempted to recapture the past self of their relative through engaging them in beneficial activity. The findings provided deeper insight in the understanding of the processes by which carers negotiated strategies; and how such processes challenged the carers' own sense of self.

The model offers a new approach for occupational therapists and other healthcare professionals to guide home-based activity programmes in which carers' perspectives are taken into account. Practitioners could gain a more complete understanding of the caregiving situation, so that they can, more effectively, support the family member and hence the person with dementia more effectively. Further research will focus on developing a toolkit to enable practitioners to recognise the complexities, uncertainties and conflicting values which confront carers in their decision-making and so enhance partnership working.

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