Coverage lightens financial load, yet navigating care remains overwhelming
Certification for Long-Term Care (CLTC) today unveiled findings from its “Creating a Path Forward” study at an annual Leadership Summit highlighting differences in the caregiving journey for families depending on whether their loved ones have long-term care insurance (LTCi).
The study, conducted by researchers at the LeadingAge LTSS Center at UMass Boston, and supported by sponsors Amada Senior Care and Mutual of Omaha, convened four focus groups of family caregivers whose loved ones are currently receiving long term care services.
Two groups represented caregivers whose loved ones had LTCi; two represented those without.
Key Findings
— Financial Strain: Families without LTCi reported greater financial consequences. Many retired early, reduced work hours, or depleted retirement accounts to cover expenses. Families with LTCi expressed immense gratitude for the coverage, with several calling it “lifesaving.” One noted insurance saved them from paying out-of-pocket for 24-hour care that cost more than $100,000 in a single year. Still, both groups faced out-of-pocket expenses for medications, supplies and other living expenses.
— Caregiver Challenges: Finding and keeping paid caregivers was difficult across the board. Families with LTCi often had to work within agency networks, leading to frustrations with rotating staff and lack of continuity. Families without LTCi had more freedom to hire independently through word-of-mouth or community connections, sometimes leading to more satisfying matches. Regardless of coverage, both groups cited cost, quality, and reliability as constant concerns.
— Limited Awareness of Support: Caregivers with LTCi were often unaware of additional policy features that could support them, such as respite benefits, care coordination, or family caregiver training programs. Some suspected insurers intentionally downplayed these benefits to limit usage. Caregivers without LTCi expressed frustration at the lack of a clear roadmap for finding public programs or benefits, noting that any support they discovered was usually by chance.
— Attitudes Toward LTCi: Having seen the value first-hand, some of the family caregivers whose loved ones had LTCi had also bought coverage for themselves. Those with coverage valued its role in reducing financial stress but worried about whether it would be enough as needs escalated. Many found policies confusing and customer service limited to claims processing. Those without coverage said the concept was appealing but voiced concerns about high premiums, eligibility restrictions, and lack of trusted guidance when evaluating policies. Several caregivers expressed regret that they had not been educated about LTCi earlier.
— Future Planning Gaps: Both groups acknowledged anxiety about planning for their own long-term care. Caregivers without LTCi leaned on wills, savings, or “hoping for the best,” while those whose loved ones had LTCi worried that they might not be able to qualify for or afford coverage in today's market. Barriers such as affordability, insurability, and skepticism about the industry's stability loomed large in both discussions.
“Caregiving is emotionally demanding no matter the circumstances,” said Eileen J. Tell, lead researcher on the study. “But having long-term care insurance can be the difference between financial devastation and stability. Still, many of these families didn't know how to take advantage of all the benefits available to them.”
A Call to Action:
For insurers: Improve transparency and outreach so families understand caregiver benefits in LTCi policies.
For policymakers:Expand education campaigns and consider incentives to make coverage affordable and accessible to middle-income families.
For employers: Provide workplace flexibility, resources, and planning tools to help employees balance caregiving with career responsibilities.
For families: Begin conversations about long-term care planning earlier, including exploring LTCi options, directives, and disciplined savings strategies.
Caregivers face crushing emotional and financial strain. Coordinated industry, government, and family efforts can nurture supportive, sustainable systems.
Media Contact:Mike Petchenik404-345-1358400762@email4pr.com
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SOURCE Certification For Long-Term Care (CLTC)
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