The Brain Health Toolkit: A Public-Facing Tool to Improve Brain Health and Early Recognition of Alzheimer's Disease and Related Disorders
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Most people with mild cognitive impairment (MCI) or Alzheimer’s disease and related dementias (ADRD) are not diagnosed until relatively late in the disease process, which limits their ability to access newer treatments or receive appropriate care management. Lack of communication about brain health and early symptoms of cognitive decline is a key roadblock in the pathway to diagnosis: patients and family members rarely raise concerns until symptoms are moderate to severe, and symptoms of early cognitive decline are often not obvious to primary care physicians/clinicians (PCP), resulting in delayed detection. To address this communication gap, we applied human-centered design principles to create the Brain Health Toolkit, a novel patient activation tool designed to help older adults accurately identify concerning cognitive symptoms, empower them with tools to raise concerns with their PCPs, and adopt healthy brain habits in their everyday lives. The “Check-In” tool provides clear information about typical brain changes with age vs. changes that could be warning signs. The “Share Notes” tool provides guidance and resources for raising questions and concerns with PCPs. The “Start Small” tool includes weekly tips for maintaining brain health. All materials were developed with extensive input from experts, PCPs, and older adults and are grounded in established principles of behavior change. They are written at a 5th grade or lower reading level, include engaging illustrations, and have been translated into Spanish. In fall 2024, we distributed more than 2,000 Toolkits at public events and clinical settings throughout California (CA) and learned that the Toolkit addresses an important unmet need by providing older adults with information about brain health that is clear, actionable, and non-threatening. This project will assess the impact of the Brain Health Toolkit on patients and their healthcare journeys by performing an NIH Stage Model II cluster-randomized, controlled trial in 10 primary care clinics in the San Francisco Bay Area supplemented with quantitative and qualitative data from patients and PCPs. The Specific Aims are to: 1) determine whether the Brain Health Toolkit increases brain health-related clinical actions (discussion, assessment, diagnosis, treatment) for older primary care patients compared to a Brain Health Handout control (n=2,500); 2) determine whether the Brain Health Toolkit improves patient knowledge, attitudes, and activation to seek brain health-related care by administering validated surveys before and one week after receipt of a Toolkit or Handout (n=350); and 3) explore the impact of the Brain Health Toolkit and gather data to support implementation by performing longitudinal qualitative patient interviews (n=30) and PCP interviews (n=15). If this project demonstrates that the Brain Health Toolkit helps patients identify important symptoms and raise them with their PCPs, it could be distributed immediately by public health agencies, primary care practices, and healthcare organizations to enable earlier detection and increase optimal management and treatment of MCI and ADRD.
