“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.

Tools for tomorrow: a scoping review of patient-facing tools for advance care planning

“… 39 – 43 , 96 , 106 , 119 , 117 , 120 , 142 Six tools utilized print materials. 111 , 136 , 146 , 160 , 163 , 164 Other interventions were more interactive: three tools involved various sorts of games of sorts, most prominently card games such as the Go Wish, a play on the Go Fish card game. 34 – 38 , 64 – 67 , 110 …”

Co‐designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care

“…Conversation starter card and workbook approaches to planning have been received positively in other contexts, such as for advance care planning. [23][24][25] Visual approaches to starting conversations and decision-making with people with intellectual disabilities, such as Talking Mats, have also been shown to be effective. 26,27 Feedback suggests that people with intellectual disabilities and their families found the Planning Ahead Cards helpful and that they have the potential to impact future planning.…”

“…This resulted in the development of a set of ‘Planning Ahead Cards’ designed to help families talk about their wants and needs for the future. Conversation starter card and workbook approaches to planning have been received positively in other contexts, such as for advance care planning 23–25 . Visual approaches to starting conversations and decision‐making with people with intellectual disabilities, such as Talking Mats, have also been shown to be effective 26,27 …”

“…Conversation starter card and workbook approaches to planning have been received positively in other contexts, such as for advance care planning. 23 , 24 , 25 Visual approaches to starting conversations and decision‐making with people with intellectual disabilities, such as Talking Mats, have also been shown to be effective. 26 , 27 …”