Planning for the future following receipt of Alzheimer's disease risk estimate among Latinos in New York City

BackgroundAlzheimer's disease (AD), a debilitating incurable neurodegenerative disorder, causes progressive deterioration in memory, language, and problem solving. Thus, the prospect of a possible future with AD can raise significant concerns.ObjectiveTo investigate Latinos' concerns and actions or planning they undertook to address those concerns after receiving an estimate of their risk of developing late-onset AD by age 85.MethodsFollowing receipt of their AD risk information, we conducted semi-structured qualitative interviews with 191 Latinos aged 40-64 who participated in the Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study. Interviews were conducted in Spanish or English at 6 weeks, 9- and 15-months following risk disclosure.ResultsFifty-nine participants (30%) had begun planning for a possible future with AD. Some spoke to family members about not wanting to become a burden to them and requested to be placed in a nursing home if they developed AD. Some contemplated making changes to their retirement plans to ensure access to their informal support networks for future care needs. Others with future financial concerns started to save more money and investigate their social security/employee benefits. Several started to get their financial/legal affairs in order, discussed future care wishes with family, educated family about AD, and changed their life plans to ensure they did certain things while still cognitively intact.ConclusionsAD risk information may motivate Latinos to engage in planning for a possible future with AD, enabling them to retain a sense of personal control and prepare to deal with its consequences.<b>Clinical trial statement</b>ClinicalTrials.gov ID: NCT04471779 Date Registered: July 15, 2020Registry Name: The IDEAL Study: Information About Alzheimer's Disease for Latinos in New York City.