074Demonstrating the Potential Benefit of Palliative Care Input for People with Dementia, Using Case Studies

Abstract

Background: People with advanced dementia, and their carers, have been shown to have palliative care needs equal to those of cancer patients. Although palliative care is recognised as quality, holistic and proactive care, palliative care for people with dementia is still evolving. The aim of this study was to demonstrate the benefit of a palliative care approach for people with dementia, through case studies. Method(s): We conducted 12 case studies with people with dementia (late and young onset dementia) and their families. We used quantitative (questionnaires) and qualitative (interviews) data to explore their palliative care needs, and potential benefit of palliative care input. Result(s): Caring for a loved one with dementia is very difficult; carers experienced high levels of anxiety, depression, and caregiving-burden. Many experienced anticipatory grief. There was little stigma about the term "palliative care". Carers wanted more emotional support, and acknowledgement of their needs, and felt that sometimes they were not included in the unit of care. Carers found it difficult coping with transitions of care, especially the move into long term care. One child contrasted the experience of a parent dying of cancer, directing their own care to the end, compared to the other parent dying from dementia where the children felt a large burden of decision making, and felt conflicted about "forcing the person to eat" when they no longer recognised food. In cases of young onset dementia (<65 years), the carers experienced more existential issues and were sometimes caring across three levels (parents, spouse and children). Conclusion(s): People with dementia and their families could be greatly supported through a palliative care approach. Carers value formal psychological and emotional support, and assistance with decision making about their loved one's care needs. Carers of people with Young Onset Dementia are particularly vulnerable and may need individualised support.