Lord, Ailsa and Smith, Ian (2015) The experiences of staff supporting people with intellectual disabilities with dementia, death, and bereavement. PhD thesis, Lancaster University.
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Abstract
This thesis is divided into three sections. The first section comprises a literature review, which aimed to understand the experiences of staff in supporting clients with intellectual disabilities with issues of death, dying, and bereavement. A metasynthesis was conducted to review 13 papers meeting the inclusion criteria. Three themes were developed: (1) Talking about death is hard: Negotiating the uncertainty in death, dying, and bereavement; (2) The commitment to promoting a “good death”; and (3) The grief behind the professional mask. An overarching theme, “A cautious silence: The taboo of death,” was also developed. The taboo culture surrounding death in intellectual disability services is discussed in relation to relevant literature, and clinical recommendations are offered. The second section, a research paper, explores the experiences of ten paid staff who have supported a person with an intellectual disability and dementia within a supported living setting. An interpretative phenomenological analysis was used. Four themes were developed: (1) The value of the pre-existing relationship to paid staff as dementia progresses; (2) Finding ways to connect when reciprocity has gone; (3) Resisting dementia “creeping in” and taking control; and (4) The stronger the pre-existing relationship, the greater the emotional cost of dementia. The findings support previous research, suggesting that intellectual disability services are well-placed to support people with intellectual disabilities with dementia, due to staff’s in-depth knowledge and well-established relationships. However, the findings also highlighted the emotional cost of this role to staff. Recommendations for clinical practice and ideas for further research have been offered. In the final section, the critical appraisal, I offer my reflections on the process of conducting the aforementioned research with paid staff supporting people with intellectual disabilities and dementia. I explore the process of developing the research idea, and reflect on the emotional nature of the topic.