Courage in care planning: Advanced care planning readiness in caregivers of individuals living with dementia

Family caregivers of individuals living with dementia due to Alzheimer's Disease, Frontotemporal Dementia and related diseases must make medical decisions and develop care plans for current and future needs of care recipients, often without a comprehensive understanding of those needs. Educational tools are available to help caregivers but little guidance is offered to healthcare providers about when and how to raise the topic of advanced care planning and present educational tools.As part of a larger study about the utility of video decision aids for advanced care planning in dementia, we conducted 16 focus groups, interviewing 28 caregivers of individuals living with dementia, separated into those with mild, moderate, or severe dementia. During each group, video decision aids about specific caregiving topics were shown. After each video, participants answered six questions about acceptability and then responded to open-ended questions to explain their ratings. We coded the focus group transcripts using a qualitative content analysis method; similar codes were grouped into themes.The qualitative data support the following major themes, which did not differ across dementia severity stages. Caregivers like learning through videos even when serious illness topics are presented, and would like this opportunity at early stages and in an ongoing way. Caregivers would like to engage in care planning with loved ones who have dementia early in the process so that they may have a voice in planning.The evidence from this qualitative study revealed that caregivers of individuals with dementia like learning about advanced care planning topics through videos-including serious illness topics-and that access to such information at an early stage and in an ongoing way is desirable. We plan to evaluate whether empowering caregivers with information about anticipated medical decisions at an earlier stage promotes earlier care planning. We also plan to evaluate whether earlier care planning allows some individuals living with dementia to engage with caregivers in the process, and whether that increases caregiver confidence in planning for healthcare decisions. We believe that early dyadic engagement in care planning promotes dignity and person-centered care planning for individuals living with dementia.