Once a man, twice a child: a phenomenological study of women of Jamaican heritage caring for a relative living with dementia

Abstract

Little research has been done into the lived experience of caregivers of Jamaican heritage providing care for family members with dementia. Socio-cultural traditions in Jamaican families assign nurturing and caring roles to women, so that when a family member develops dementia it is females who take up the role. The aim of the present study was to explore the lived experience of caregivers of Jamaican heritage living in both England and Jamaica. This study offers a unique and original contribution to our knowledge base as currently there is no published qualitative study that focuses on dementia caregiving in Jamaican families. Using a phenomenological methodology, data were collected in England and Jamaica over a period of twelve months by semi-structured interviews with ten women of Jamaican heritage caring for a family member living with dementia. Participants were interviewed in Birmingham, England and Kingston, Jamaica. Findings revealed six themes relating to how women of Jamaican heritage experience and understand dementia caregiving. (1) strength and resilience; (2) a labour of love; (3) picking sense out of nonsense; (4) I’m not a carer - I’m family; (5) the role of the Church and (6) Jamaicans don’t do that. The insight gained from these findings provided rich information about the participants’ experiences of caregiving. This study revealed that cultural values and upbringing within Jamaican families are important factors that support caregivers in dealing positively with the demands of caregiving. The main implications for practice from this study suggests is that the willingness and commitment of women of Jamaican heritage to provide long-term care within family units in order to maintain the dignity of their elders, as opposed to admitting them to care facilities, needs affirming and supporting. Also, there is a need for commissioners of services and support in England and Jamaica to recognise the importance of voluntary community groups and Black majority churches, when collating and disseminating information.