Emily Tomlinson1, Aimee Spector2, Shirley Nurock3, Joshua Stott4. 1. Enfield Integrated Learning Disabilities Service, Barnet, Enfield and Haringey NHS, London, UK. 2. Research Department of Clinical, Educational and Health Psychology, University College London, London, UK. 3. Alzheimer's Society Research Network and family carer, London, UK. 4. Research Department of Clinical, Educational and Health Psychology, University College London, London, UK j.stott@ucl.ac.uk.
Abstract
BACKGROUND: Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. AIM: This study explored the views of former carers on assisted dying in dementia. DESIGN: This was a qualitative study using thematic analysis. SETTING/PARTICIPANTS: A total of 16 former carers of people with dementia were recruited through national dementia charities and participated in semi-structured interviews. RESULTS: While many supported the individual's right to die, the complexity of assisted dying in dementia was emphasized. Existential, physical, psychological and psychosocial aspects of suffering were identified as potential reasons to desire an assisted death. Most believed it would help to talk with a trained health professional if contemplating an assisted death. CONCLUSION: Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required.
BACKGROUND: Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. AIM: This study explored the views of former carers on assisted dying in dementia. DESIGN: This was a qualitative study using thematic analysis. SETTING/PARTICIPANTS: A total of 16 former carers of people with dementia were recruited through national dementia charities and participated in semi-structured interviews. RESULTS: While many supported the individual's right to die, the complexity of assisted dying in dementia was emphasized. Existential, physical, psychological and psychosocial aspects of suffering were identified as potential reasons to desire an assisted death. Most believed it would help to talk with a trained health professional if contemplating an assisted death. CONCLUSION: Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required.
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