Due to the gaps in coverage of LTSS in the health care system, family out of-pocket spending pays for as much as 40 percent of all paid care. But for both older and younger people with LTSS needs, costs are unpredictable and varied. About one in six seniors and their families will spend over $100,000 out-of- pocket for long-term care before they die. For over 15 percent of seniors above the age of 65, their (is that right?) total cost of long-term services and supports across all payers will exceed $250,000; for 9 percent, out-of-pocket costs alone will exceed that amount.
In order to fill in the gaps of what is covered by public insurance programs, many individuals and families may turn to private long-term care insurance; however, the private long-term care insurance market has declined over the past decade. There have been substantial declines in sales of policies and number of insurance carriers, and these policies often have premiums that are unaffordable for most, while the coverage offered under the available plans is not sufficient enough to cover the catastrophic LTSS need. As a result, consumers tend to forgo insurance and pay for costs out of their own pocket.
The reality of LTSS costs to families extends beyond direct out-of-pocket spending on health services. Massive emotional and psychological burdens fall on the helpers who provide the care, whether they are spouses, other family members, or friends and neighbors who take time from work and other responsibilities. Estimating the number of caregivers is a challenging undertaking, but research suggests that at least 17.7 million Americans are providing care to an aging loved one coping with functional limitations.