Development of a Long-Term Care Planning and Education Tool for Older Adults and Their Caregivers

Background and Purpose: An estimated 52% of older Americans will need high levels of long-term care late in life (Favreault & Dey, 2016), but most have not planned for their long-term care needs nor saved enough to cover the high cost of skilled nursing care (AP-NORC Center for Public Affairs Research, 2014). Friends and family caregivers of adults with dementia often navigate care decisions without sufficient information on cost and available options. Medicaid provides a critical safety net for those who have exhausted their savings and require skilled care, but the complexity of Medicaid eligibility rules and covered care options create barriers to enrollment. To help older adults and their caregivers plan for how they will pay for long-term care services, we developed “Care Assistant”, an interactive website that provides personalized information on when and how to enroll in Medicaid.

Method: Development and user-interface (UI)/user experience (UX) testing occurred in iterative design-build-test phases. To understand information needs, common application mistakes, and gaps in long-term care knowledge, we first conducted 15 in-depth interviews with spousal and adult child caregivers, elder law attorneys, Medicaid planners, geriatric care managers, and financial workers who process Medicaid applications. Based on this gap analysis we developed a prototype of the “Care Assistant”. Individuals who participated in UI/UX interviews included 15 English-speaking dementia caregivers (Phase 1); 15 Latino/a Spanish-speaking dementia caregivers (Phase 2), and 15 adults age 60+ (Phase 3). Participants were balanced with respect to gender, socioeconomic status, and relationship to the potential applicant e.g., (spousal versus adult child caregiver). Participant feedback was integrated into the website design between UI/UX interview phases.

Results: Interview participants were unanimous in sharing that many people do not understand that Medicare does not cover long durations of skilled nursing or personal care assistance at home. Caregiver participants expressed being intimidated by Medicaid and in need of a big picture view of the eligibility and enrollment process. Informed by these interviews, we designed the interactive website to collect relevant information on income sources, assets, and expenses in order to calculate when an older adult in need of care may be eligible for Medicaid. The website provides personalized guidance on Medicaid asset “spend down,” informs the user on what assets they can keep, and educates them on mistakes that could delay eligibility. The website also provides region-specific information on the cost of different care options (home care, assisted living, nursing home). Short educational videos on Medicaid programs and eligibility rules are embedded throughout the user experience. Mean satisfaction with the prototype was 3.6 (out of 4). Participants reported feeling more informed about Medicaid eligibility (mean = 4.6/5), and agreed that the website gave them personalized advice (mean = 4.7/5).

Implications: Care Assistant is the first website to provide state-specific and personalized enrollment timelines on Medicaid eligibility for older adults and their caregivers. Designed to reduce information overload and simplify an incredibly complex issue, the website will reduce caregiver burden and help ensure that older adults receive appropriate care.