Effectiveness of interventions to increase participation in advance care planning for people with a diagnosis of dementia: A systematic review

Background: Advance care planning involves considering, discussing and documenting future wishes in case a person is unable to make or communicate decisions. Given people with dementia are at high risk of future decisional incapacity, it is critical that advance care planning occurs early in the illness trajectory. Aim: To determine (1) the number of intervention studies published between 1997 and July 2017 that aimed to increase advance care planning for persons with dementia, (2) the methodological quality of studies and (3) the effectiveness of interventions in increasing advance care planning for persons with dementia. Design: Systematic review. Data sources: Medline, Cochrane, EMBASE, PsycINFO and CINAHL were searched for articles published from 1997 to July 2017. Studies were included if they utilised a methodologically robust study design and reported on an intervention designed to increase participation in advance care planning for persons with dementia that was targeted at the person with dementia and/or a carer/family member. Methodological quality was assessed independently by two authors. Results: Four studies met the criteria for inclusion. Methodological quality was variable. Two studies did not report analyses comparing advance care planning outcomes for intervention and control participants. A third study found no effect for a nurse-facilitator intervention. The fourth study found that a structured conversation about end-of-life care with a family member increased the likelihood of advance care orders being listed in residents’ records. Conclusion: There is little evidence about effective strategies to improve participation in advance care planning for persons with dementia. Methodologically rigorous intervention trials are needed to test interventions that encourage timely participation.