Journey from dementia diagnosis to final bereavement: an exploration of the fluctuating perceptions of self experienced by family caregivers of people with dementia
Alexjuk, Eva Joanna
Few research studies have examined the panoramic landscape of family caregivers from dementia diagnosis to the final bereavement of the person with dementia for whom they are caring. The route and pathways of care undertaken during a caregiver's journey will be individual to each person, yet invariably there will be some similarities as to how they anticipate, approach and mange this journey. From the caregiver's perspective, caring for someone with dementia is related to more than the cognitive loss experienced by their family member, there are many losses involved, This research study aims to explore the complex emotional experiences of thirty caregivers in relation to sense of self. change, grief, loss and bereavement, to elucidate a deeper understanding of the lived experience, the perceived and understood reality of the experiential journey of caregivers. To explore the experiences of caregiving, this research study uses a hermeneutic phenomenological approach and draws on an adaptation of the theoretical framework of anticipatory grief and loss by Fulton and Fulton (1971) and Fulton and Gottesman (1980). The study uses a convenience sample and semi structured interview format and involves two non-comparative participant groups of family caregivers living in urban and rural communities within the North East of England. Group one comprises of twenty bereaved participants, nineteen of whom are spousal caregivers and one adult-caregiving daughter, who were interviewed once to explicated a retrospective perspective of the caring experience. Group two comprises of ten participants, nine spousal caregivers and one adult-caregiving daughter, who are currently caring for a family member living with an advanced stage experience of dementia. Group two participants were interviewed on three occasions across an eighteen-month time period to explore the retrospective and prospective experience of their caregiving role. The analysis of data reveals expressions of change, grief and loss within a complex and tri-dimensional landscape. Within this landscape, participants highlight defined periods of their journey, particularly with regard to their experience of a protracted middle period, which they referred to as being "the long road". However, intersecting with this layered landscape, the analysis of data also reveals a key aspect of caregiving - the emergence of a conceptual framework involving three interconnected yet fluctuating schemas of self experienced by participants. the first scheme, the individual 'me-self'. related to the participant's perception of their core self and envisaged sense of self. the second schema, the 'relationship-self', illustrates participant's physical and psychological experiences and bonded connection between themselves and the cared-for spousal partner or parent, as well as other family members and care workers. The third schema, the 'caregiving-self', is associated with the acquisition and undertaking of their role of familial caregiver. The findings of this study highlight the 'lived-world' experience of family caregivers as being a journey which subjects them to a cyclical maelstrom of emotion and fluctuating perception of their schemas of self.