Development and pilot testing of a decision aid for the initiation of antipsychotic medications in persons with dementia in long-term care using a systematic approach: a study protocol

INTRODUCTION: Antipsychotic medications are commonly used in long-term care to treat neuropsychiatric symptoms of dementia despite concerns that their risks (eg, infection, falls, death) may outweigh their benefits. This study protocol outlines the development and pilot testing of a decision aid for antipsychotic medications that is tailored to the information needs of residents with dementia in long-term care and family caregivers (or decision makers). The goals of the decision aid are to help residents and caregivers (1) better understand the risks and benefits of antipsychotic medications in long-term care, and (2) make informed decisions about their use (or non-use). METHODS AND ANALYSIS: This multiphased study is being conducted between October 2016 and September 2018. In phase I, the decision aid will be developed after consultation with a steering group, review of scientific evidence on outcomes associated with pharmacological treatments for neuropsychiatric symptoms of dementia in long-term care, review of guidelines for the use of antipsychotic medications in long-term care, and review of guidelines for writing health information for patients and families. The decision aid will also be alpha-tested and redrafted, as necessary, in phase I. In phase II, implementation and reporting guidelines for the decision aid will be developed in collaboration with Directors of Care in long-term care. In phase III, the decision aid will be (1) beta-tested with residents with dementia in long-term care and caregivers not involved in the design phase, and (2) assessed by an external panel of experts. ETHICS AND DISSEMINATION: Ethical approval for this study has been granted by the Research Ethics Board at the University of Saskatchewan, approval number Beh 16-465. Findings from this study will be disseminated via conference presentations, publications, presentations to policy makers and plain language summaries to residents with dementia in long-term care and their caregivers.