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Abstract
Background Despite recognition of its importance for people with dementia, literature has identified that Advance Care Planning (ACP) happens infrequently. In collaboration with community partners and people with lived experience, BC Centre for Palliative Care co-developed two programs to support community organizations to facilitate ACP events for people with early stages of dementia and their family/friend caregivers. The two programs support community organizations to facilitate:
Guided group conversation events to help participants reflect on their values, beliefs and wishes for care, and
Information sessions to help participants get started with their ACP.
Each program comprises a training curriculum for the event facilitators and a toolkit of resources for organizers, facilitators, and participants.
Methods The programs were adapted from an existing successful, sustainable program that supports community-led ACP sessions for the public. The adapted programs aim to promote the engagement of people with dementia and their family/friend caregivers in ACP to help them get care consistent with their wishes.
Results The dementia-tailored programs were piloted in 4 communities, refined, and then evaluated in 10 communities across BC using a mixed-methods approach. Data was collected from facilitators and participants through surveys and interviews. Pilot results found that 95% of respondents agreed that the conversation event helped them think and talk about their healthcare wishes and 91% agreed that the information sessions helped them understand the steps of ACP. Preliminary evaluation results indicate the program’s success in urban, rural, and remote communities including a First Nations community with 25 elders.
Conclusion Engagement of people with lived experience was integral to program development. Stigma associated with dementia and end-of-life required special attention to curriculum content, language, and promotional materials. Facilitators to engagement include emphasizing conversations rather than forms, focusing on living well rather than dying, integrating storytelling, and using a step-by-step approach.