A stakeholder‐engaged process to design and implement a dementia diagnosis Toolkit in primary care settings

Abstract Background Dementia is frequently underdiagnosed or misdiagnosed in primary care, where most patients are initially seen. In 2018, in response to California State Bill 833, the ten California Alzheimer’s Disease Centers (CADCs) developed an instrument, the Assessment of Cognitive Complaints Toolkit for AD (ACCT‐AD), to guide primary care providers (PCPs) through the dementia diagnostic process. We examine how a stakeholder‐informed process shaped the development of the ACCT‐AD toolkit. Method Our implementation study involved a two‐phase process. In Phase 1, experts from the CADCs provided consensus input to design the toolkit. We then conducted three focus groups with primary care providers to get feedback on toolkit design and workflow. Changes were made based on feedback. In Phase Two, we conducted 10 feedback sessions with providers who used or reviewed the toolkit and 124 surveys about experiences using the toolkit. Result The toolkit: The toolkit offers step‐by‐step instruction on how to collect information for a dementia diagnosis, including a series of questions, identified by CADC committee consensus. Each question is followed by examples of typical concerns. The toolkit interprets answers commonly encountered, indicating which are indicative of normal aging, Alzheimer’s disease (AD), or a non‐AD dementia. Focus groups : PCPs reported lack of systematic approach to diagnosing dementia and time constraints. They found the toolkit valuable as an educational tool but were concerned about length. They suggested modifications: a self‐administered questionnaire, streamline answer tracking, and electronic health record (EHR) integration. A major concern was how to identify patients who have Mild Cognitive Impairment (MCI). The team addressed all PCP concerns. Surveys , 66 providers found the toolkit extremely useful in identifying a probable diagnosis, 55 found it somewhat useful, 3 did not find it to be useful. Conclusion Engagement of stakeholders in the design and improvement of a dementia diagnosis toolkit is critical for improving its feasibility and usability for clinical practice. The ACCT‐AD toolkit is part of a larger vision to create a network of dementia‐proficient community practices connected to the CADC system. As potential treatments for AD and options for diagnostic testing evolve, this network can serve as a resource for disseminating knowledge.