A narrative review of facilitating and inhibiting factors in advance care planning initiation in people with dementia

PURPOSE OF THE REVIEW: To identify and assess factors that affect the decisions to initiate advance care planning (ACP) amongst people living with dementia (PwD). METHODS: A narrative review was conducted. A keyword search of Medline, CINAHL PsycINFO, and Web of Sciences databases produced 22,234 articles. Four reviewers independently applying inclusion/exclusion criteria resulted in 39 articles. Discrepancies were settled in discussion. RESULTS: Twenty-eight primary studies and eleven review articles remained. Narrative analysis generated five categories of facilitating and inhibitory factors: people with dementia, family orientation, healthcare professionals (HCP), systemic and contextual factors, and time factors. Key facilitators of ACP initiation were (i) healthcare settings with supportive policies and guidelines, (ii) family members and HCPs who have a supportive relationship with PwD, and (iii) HCPs who received ACP education. Key inhibitors were: (i) lack of knowledge about the dementia trajectory in stakeholders, (ii) lack of ACP knowledge, and (iii) unclear timing to initiate an ACP. CONCLUSION: This review highlighted the main challenges associated with optimal ACP initiation with PwD. To encourage effective ACP initiation with PwD, succinct policies and guidelines for clinical commissioners are needed. ACP also needs to be discussed with family members in an informal, iterative manner. More research is required on initiation timing given the disease trajectory and changing family dynamics. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s41999-020-00314-1) contains supplementary material, which is available to authorized users.