Systematic review of interventions to support well-informed person-centered decision making for dementia care

Abstract

Introduction: Creating dementia care plans can reduce caregiver burden and prolong aging in place. However, family caregivers state that surrogate decision making is a primary source of burden and a barrier to creating care plans. Decision support interventions (e.g. patients’ decision aids, decision coaching, etc.) have been shown to improve information comprehension, communication, decisional conflict, and engagement in decision making. However, the quantity, quality, and effects of decision support interventions for dementia families remain unclear. Therefore, this systematic review critically assessed the scientific literature regarding the following research question: Compared with usual care, do individuals with dementia and/or their family caregivers who receive a decision support intervention have improved information comprehension, decisional conflict, or engagement in decision making? Methods: Two research librarians searched the MEDLINE, CINAHL, EMBASE, Cochrane, Web of Knowledge, Google Scholar, PsychInfo, and related dissertation libraries for “dementia”,”decision support”, and related sub-terms. Three researchers hand-searched abstracts from relevant academic society meetings, and spoke with identified experts in the field. Eligibility criteria included papers about individuals with dementia or their family caregivers using any form of intervention designed to support health care decision making. Primary outcomes included information comprehension, decisional conflict, and engagement in decision making. Critical appraisal followed the Cochrane and GRADE guidelines. Results: Two blinded reviewers reviewed 5,922 abstracts and 131 full text manuscripts to yield 14 included papers reporting on 9 decision aids designed specifically for dementia care. These papers were published in 2001-2012 and describe studies in the United States, United Kingdom, Canada, France, Germany, The Netherlands, and Australia. Nine decision aids were identified covering topics such as advanced care plan options, respite care, antibiotics, feeding tubes, goals of care, long term care, and memory medications. These decision aids exist in paper workbook and video/DVD media. Three decision aids are reported available on the Internet, but studies evaluating Internet-delivery were limited. The majority of studies (66%) focused on caregivers’ decision making. Critical analyses suggest moderate effects on information comprehension and decisional conflict; however, insufficient information was provided to critically assess the effect on engagement in decision making. Risk of bias varied, as many studies reported on early development stages. Conclusions: Since 2001, nine patients’ decision aids have been developed internationally for decisions related to dementia care. Early evidence suggests dementia care decision aids can improve information comprehension and decisional conflict similar to other decision aids; however, gaps remain in the evidence regarding their effect on engagement in creating care plans.