Perspectives on the Challenges of Planning for and Accessing Long-Term Dementia Care Services Through Medicaid and Medicaid Waivers

Formal long-term services and supports (LTSS) are essential to support older Americans with chronic conditions, such as Alzheimer’s disease and related dementias (ADRD). However, few older adults have saved enough to pay for LTSS, and navigating Medicaid eligibility criteria presents significant challenges. We conducted semi-structured, in-depth interviews with aging services professionals and caregivers of older adults with ADRD to assess challenges to planning for and accessing LTSS coverage through Medicaid and Medicaid waivers. Using concept mapping, three main themes were identified: (1) Proactive planning, (2) decision points, and (3) the application process. Participants described misconceptions about LTSS coverage, challenges with enrollment, and lack of information about eligibility affecting the LTSS planning trajectory. Results demonstrate a critical need for resources that help caregivers estimate costs and guide them through the eligibility determination, application, and spend down processes for Medicaid programs.