Wanted: info on family caregivers’ experience

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Participants receive $100 gift card

Family caregivers often serve as financial advocates for older adults with Alzheimer’s disease (AD) and AD-related dementias, helping to plan ways to cover the cost of long-term care services. 

Given the high cost and duration of long-term care, many older adults will eventually need Medicaid to help cover expenses. Medicaid planning is extremely complex, and most caregivers don’t have prior knowledge of the application process or the general eligibility criteria. 

This can result in delays in accessing necessary care, financial losses for professional care providers, and the caregiver tapping into their own savings to pay for services. 

Family caregivers need comprehensive education around financial caregiving and personalized resources that help them plan for eligibility for public benefits. A team of local tech professionals and researchers at the University of Minnesota, funded by the National Institute on Aging, are developing a website that aims to guide caregivers of individuals with dementia through the process of financing long-term care. 

It is our goal to ensure that this website is culturally sensitive and responds to the unique needs of caregivers who identify as Black/African American, Latino/Hispanic, American Indian, and Asian/Asian Pacific Islander. 

We believe this website will:

  • Help family members learn what assistance their family member is eligible to receive 
  • Decrease stress and the feeling of information overload
  • Improve knowledge of long-term care costs and public payment options
  • Decrease the Medicaid application processing time 
  • Increase the likelihood of Medicaid applications being approved
  • Reduce strain on county workers 
  • Help prepare caregivers for the journey ahead

This virtual resource will be free for all users once it is completed. It will complement in-person and telephone-based caregiver services provided by senior services organizations in Minnesota. 

Researchers at the University of Minnesota can offer live or virtual demos on the website to organization staff and/or clients. We will welcome feedback to ensure that the website offers personalized and meaningful advice to help guide long-term care choices.

What we are looking for:

We’re currently looking to interview diverse family caregivers to understand the challenges they face when planning for the costs of long-term care and ways we can help them prepare and enroll in public programs their family member is eligible for. 

When the website prototype is ready in early spring 2022, we will be looking for caregivers to participate in user testing where they will be guided through the website and will answer questions about their experience. Participants will receive a $100 gift card for participating in a 90-min interview or user experience testing session over Zoom or in person. 

We will ask caregivers questions about their experiences:

  • Searching for long-term care
  • Learning about what their family member is eligible to receive
  • Applying for Medical Assistance or Elderly Waiver (if applicable) 

      To be eligible for the study, participants must: 

  • Provide care for an adult with dementia
  • Identify as Black/African American, American Indian, Hispanic/Latino, and/or Asian/Asian Pacific Islander
  • Be fluent in English
  • Be able to use websites and have access to Zoom on a computer 

Caregivers who are interested in participating should fill out this brief survey to be contacted by a member of the research team: https://bit.ly/UMcaregiverstudy

Or they can contact Dr. DeLiema directly: mdeliema@umn.edu or 612-625-8798.

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