Harrison Dening, K; (2014) Advance care planning in dementia: understanding the preferences of people with dementia and their carers. Doctoral thesis , UCL (University College London).

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Abstract

The UK End of Life Care Strategy proposed that all people should identify preferences for end of life care. Aims To explore whether family carers of a person with dementia (PWD) can accurately predict their preferences for end of life care and what factors influence this. Methods: This mixed methods study began with nominal groups to explore if PWD and carers could generate and prioritise preferences for end of life care and how much carers influenced the PWD’s choices. The second phase involved 60 dyad interviews using a modified Life Support Preferences Questionnaire to assess whether carers of PWD could predict the PWD’s preferences for treatment in three health states. The influence of carer burden and distress, and relationship quality, on a carer’s ability to predict the PWD’s treatment preferences were measured. This was examined further by qualitative interviews to provide personal contexts to decision making. Results: In nominal groups, PWD found it difficult to conceive of their future selves and think about preferences for end of life care. Carers’ views were influenced by their experiences of caring and negative media coverage of dementia and, when together, carers tended to override the PWD’s views. In interviews, carers could predict the PWD’s preferences in the here-and-now but were less accurate in future hypothetical health states. PWD and carers showed marked uncertainty about end of life treatment choices. Relationship quality, carer distress and burden had no influence on accuracy of prediction. Qualitative interviews revealed that while dyads claimed to have a shared decision making approach, joint healthcare decision making had largely been untested. Conclusions: Families affected by dementia require practical and emotional support at the outset to enable them adapt to changes in usual patterns of decision making, prepare for changes ahead and ensure, where possible, that the PWD’s preferences are upheld.

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