Do vulnerable adults’ understand LTC options?

With the number of Americans needing long-term care (LTC) slated to reach unprecedented levels over the next several decades, it is important to know how easily they will be able to secure the care they need. That will depend on their ability to navigate what has been described as the complex mosaic of services, providers, coverage types, and benefit and payment options that are today’s LTC system.

Recognizing these issues, the Robert Wood Johnson Foundation’s Community Partnerships for Older Adults Program is helping 13 communities develop strategies to improve awareness about LTC issues and to increase access to related services. To identify older adults at risk of needing LTC in the next few years and assess gaps in their knowledge about their options, Mathematica Policy Research Inc. conducted a telephone survey in mid-2002 of adults age 50 and older in the 13 communities and used the results to describe their demographic characteristics, education, and health status; knowledge of LTC coverage and service availability; and sources of information used to address their LTC questions.

Mathematica’s William Black and Randall Brown said the process of obtaining LTC, which is confusing, is further complicated by two overriding factors:

1. Most Americans do not begin to explore LTC choices until their need is urgent.
2. There is no single, authoritative source of information on the care.

"The situation is especially critical for vulnerable adults — those at significant risk of needed long-term care services in the near future," the two wrote in a Mathematica Issue Brief. "Absent an understanding of what services are available and how to access and finance them, these individuals might make less than optimal long-term care decisions, especially if they do so at a time of crisis, when there is little opportunity to investigate alternatives. Doing so could lead to reduced quality of life, unnecessary health problems, and greater caregiver burden."

The data compiled by the researchers defined "vulnerable adults" as all those older than 75, and those ages 60 to 74 who meet at least one of these criteria — say they are in fair or poor health or have one or more chronic illnesses such as congestive heart failure, coronary artery disease, diabetes, stroke, or lung disease.

On average across the 13 study communities, 40% of the target population met these criteria. More than half of the vulnerable adults were at least 75. And 40% described their health as fair or poor, compared to 24% of all older adults in the communities. Vulnerable adults in the sample also had lower education and income levels.

Some 28% of vulnerable adults in the sample either receive assistance or expect to need it within five years to continue living independently. About 13% have problems or need help with at least one personal care activity of daily living such as bathing or dressing; 26% reported having problems or needing help with at least one instrumental activity of daily living such as preparing meals or doing light housework. Generally, unpaid family members and friends provided the personal assistance received by those adults.

"In the 13 communities we studied, vulnerable adults typically do not know much about coverage for long-term care costs," Mr. Black and Mr. Brown wrote. "Only 8% have private long-term care insurance, and 71% of the remainder do not know how much coverage would cost for someone their age. In fact, 31% of vulnerable adults have never even heard of long-term care insurance. More than half do not know that Medicare does not cover personal assistance or that Medicaid does cover it."

The report indicated that financial constraints put LTC beyond the reach of many people. Nearly 60% of vulnerable adults said they would be unable to afford $100 per week for help with personal care, and many probably could not afford any assistance as 30% have a yearly income under $20,000 and are not on Medicaid. Also, 25% reported being unable to afford some basic need such as food or prescription drugs at some time during the previous 12 months.

In addition to their financial problems, a sizeable minority of vulnerable adults lack information about LTC services available in their communities. Between 15% and 25% of vulnerable adults reported not knowing that nursing homes, visiting nurse services, home-delivered meals, and senior centers are available to them, despite the fact that these are well-established programs that generally are quite visible in communities.

About one-third reported they did not know that personal assistance services and door-to-door transportation — two key factors that could help them remain in the community — were available. Likewise, nearly 40% are unaware that adult day-care programs are available, and 30% don’t know of assisted-living facilities in their area.

"It is noteworthy that, despite their greater need for information about long-term care, vulnerable adults who either receive personal assistance or expect to need it within five years are no more likely to be aware of the availability of long-term care services than are vulnerable adults generally," the researchers said.

The study showed that many adults who are likely to need LTC information in the next few years have substantial gaps in their knowledge. There is a wide range of knowledge levels among communities and a wide range of sources people said they would turn to for information.

Mr. Black and Mr. Brown reported that communities seeking to bridge people’s information gaps are likely to face challenges in improving vulnerable adults’ awareness of LTC issues, particularly since that population uses a wide range of sources for information. Some strategies that individual partnerships are implementing include:

  • developing and promoting use of a telephone helpline seniors can use to access information about LTC services;
  • conducting a media campaign to promote awareness of LTC issues;
  • conducting a door-to-door outreach campaign to reach isolated older adults;
  • improving communication and collaboration among LTC service providers and senior services organizations to promote a "no wrong door" approach that facilitates access to LTC services and information by allowing seniors to enter the LTC system through multiple community channels.

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