Protocol for the Next Generation brain health survey: an international survey of attitudes, understanding and exposure to brain health risk factors in young adults

Abstract

Abstract Background: Evidence suggests that risk factors for Alzheimer’s disease and related dementias (ADRD) are at least partially modifiable, and that lifestyle risk accumulates as we age. However, the prevalence and impact of lifestyle-related risk factors in young adulthood (i.e., 18-39 years) remain poorly understood, with some risk factors that are developed in early adulthood being difficult to remove and reverse at midlife. The Next Generation (NextGen) brain health survey is the first of its kind to be designed specifically for young adults, with the aim of exploring attitudes, understanding and exposure to ADRD risk and protective factors in this life stage. Methods: The NextGen survey is an international, cross-sectional survey of young adults aged 18-39 years. The survey was developed in three phases with ongoing input from public advisors (i.e., young adults from Europe, North America, and Africa). First, we adapted items from existing literature for the target population. Second, we conducted focus groups with young adults to review the items and explore new themes. Third, we piloted the survey in an international network, including brain health researchers, clinicians, and advocacy groups. Feedback was integrated to create the finalized survey. Discussion: The NextGen survey will be conducted online and made available to individuals aged 18-39 years internationally. Results will contribute new knowledge about young adults and ADRD risk exposure before mid-life, including much-needed evidence in populations that are traditionally under-represented in research. Findings will also help to identify mediators and modifiers of associations between knowledge, attitudes, and risk exposure, and provide the basis for comparison with middle-aged and older populations.