“This is how I want it”: Exploring the use of a workbook with persons with dementia to support advance care planning engagement

Abstract

This mixed method sequential study reports focus group and pilot intervention findings that (1) explore the views of persons with dementia and their caregivers on using a self-directed advance care planning engagement workbook ( Your Conversation Starter Kit) and (2) uncover the conditions that encouraged and hindered workbook use. In Phase 1, we conducted five focus groups consisting of 10 persons with dementia and eight family members/caregivers from two urban Canadian cities to explore overall impressions of the workbook and factors that might affect its use. In Phase 2, we empirically explored the factors identified in Phase 1 by distributing the workbook to 24 persons with dementia. The combined findings suggest that the workbook offers promise in supporting advance care planning engagement for persons with dementia in the early stages of their condition. Involving family/caregivers and clarifying some of the ranked questions might improve the workbook’s use. Persons with dementia without familial support or those who have never contemplated advance care planning may require additional guidance prior to workbook distribution.