Pathways to Care: Experiences with Long-Term Care in Illinois

More than half of Americans will need long-term services and supports (LTSS) by age 65 as they face disability or chronic conditions, but few feel prepared. Nearly 70 percent report doing little or no planning for their future care needs, according to the 2021 AP-NORC Long-Term Care in America survey.

To examine this issue, AARP embarked on a plan to understand the first-hand experiences of older adults and their family caregivers seeking LTSS by conducting in-depth interviews across a diverse set of counties in Illinois. The results are largely generalizable to the rest of the United States.

This qualitative report summarizes the issues Illinois caregivers and older adults faced finding local LTSS resources and their assessments of the quality of care accessed, supplemented by the first-person comments and observations of the interviewees. These key themes, outlined below, can be used to identify areas of improvement across the care journey.

Onset of Illness & Recognition of Need for Care

One thing that remains consistent across experiences is that it is extremely difficult to find information on resources and ultimately find quality care. In addition, paying for services is the top challenge.

Search for Help

Finding services and supports is difficult. Interviewees say there is not a one-stop shop or trusted source for information on navigating the process of finding long-term services or finding financial assistance.

Receipt of Care

Experiences using LTSS services including at-home care, community services, or nursing home facilities ranged from very positive to extremely negative. Interviewees also pointed to disparities in access to quality care. Low-income caregivers and older adults felt they had fewer nursing homes to choose from and that the nursing homes they could afford offered poorer quality of care. They also cited a high burden of disease. Research supports many of  these perceptions.

Promising Policies and Practices for Improving the LTSS Experience

The report highlights promising policies and practices to support older adults needing LTSS and their caregivers throughout the care journey. While some of these promising policies and practices are targeted to the care pathway in Illinois, most of the recommendations apply or are adaptable to any state seeking to improve how caregivers and older adults experience LTSS.

Specific solutions discussed in the report are:

• Centralize Resources on LTSS
•  Easing the Cost of Care
• Addressing Disparities in Care Quality

Conclusion

Access to greater and more streamlined resources for LTSS is one part of the solution to the challenges caregivers and consumers identified in this research. But if high-quality care options are not equally available across urban, suburban, and rural parts of a state, and if care options are not available across a mix of settings, older adults and their caregivers will still be limited to care arrangements that may not best suit their needs nor reflect how they want to age. Progress has been made to balance the mix of facility-based and home and community-based LTSS options available in the US, but the challenge moving forward is to make sure those options are equitably distributed, and that high-quality, affordable options are available to all older adults.