Incomplete and inadequate: Information lacking for seniors looking for assisted living
As of today, the youngest of the nearly 70 million baby boomers is 55; the oldest is 74. Within the next decade, millions of them will need long-term care. Many will remain in their homes, with family or "drop-in" caregiver services lending a hand. Some will move in with relatives. Those who are most dependent on care might choose nursing homes. A diverse and expanding older population is looking for help.
For more than a decade, "assisted living" residences grew faster than any other segment of the long-term care industry. Typically more home-like than a full-care nursing facility, assisted living is often favored by people who are generally independent, but still need support with daily activities. In general, providers offer fewer medical services, though many provide health and memory care for residents with Alzheimer's disease and other types of dementia.
We and our colleagues track the ever-changing circumstances of long-term care in the U.S. As we study policies and practices, we have observed that the expansion of assisted living is clearly a game-changer, creating new challenges in the industry. Many states have increased assisted living regulation in recent years. Some consumer advocates have called for nursing-home style federal rules, though others oppose this, saying assisted living should remain flexible enough to serve residents with a range of needs, from personal care only to end-of-life comfort.
To better understand how consumers make choices when shopping for an assisted living residence, we conducted an examination of health service websites in every state.
Our goal: to find out how much information the states provide to the public about assisted living.
What we found
Unlike nursing homes, which are regulated by the federal government, the states oversee assisted living; they define what constitutes an assisted living residence, establish licensing requirements, and set quality standards.
Data from the states on assisted living is provided free to the public. All licensed residences are listed. While private search services might help consumers sort through options, it's not clear how complete—or objective—they are. Some services exist primarily for marketing purposes; they collect fees from the residences they list.
Using criteria formulated from prior research, along with information provided by some states, we examined 39 key elements of each website. Those elements included the size of the facility, cost, license status, the insurance it accepts, and any special services offered, such as memory care. We also looked at each website's usability—the ease in finding critical information.
Another group of researchers conducted a similar study in 2005. In some areas, our findings showed notable improvement. In the earlier study, only about 15% of the websites provided reports of state-required quality inspections. We found 70% now post them.
Substantial gaps remain, however. Only about one-fourth of states divulged the type of payment accepted by their residences. Although assisted living costs vary considerably from place to place, only two states disclosed what a customer would be charged. Knowing the accessibility of care personnel is critical, but again, just two states had any data about the availability of staff.
More than two-thirds of states didn't say whether their residences offered memory care. That's difficult to understand; many people with Alzheimer's or dementia prefer assisted living over nursing homes. In those states where details were given, the facts were disconcerting: More than 20% of older Floridians live in rural counties with no access to memory care.
State websites difficult to navigate
Overall, the websites were not user-friendly. Although most of the basics were relatively easy to find, extensive searching was required for details about individual residences. Sometimes, it wasn't even clear which state agency was responsible for assisted living oversight.
Still, there were bright spots, mostly in states with significant elderly populations: California listed inspection updates. Florida itemized activities offered in each residence. Arizona posted plain-language summaries of inspection results, even cataloging the fines levied on the facilities for regulatory breaches. But commendable practices were exceptions. At a minimum, more specifics are needed on quality, costs and essential services like memory care. And all state websites should provide inspection results, including details about fines or penalties.
Granted, improving the information on the websites might require new or revised state regulations. Some states, for instance, conduct inspections only once every two years; this limits the availability of new inspection reports. A minority of states impose specific staffing regulations, which explains the lack of staffing data available.
But more and more people are choosing assisted living. The government is now funding many residences to provide care for low-income disabled citizens. Their needs—and vulnerability – are significant, enough for states to reassess their roles in protecting assisted living residents. Adding accurate and detailed content to their websites would be a great first step.
True, the state websites are better than they were 15 years ago. But they are less than what they should be. Many of the elderly, the disabled, and the families who love them require more to make appropriate choices. When navigating the internet, the principle of "buyer beware" should not be the driver.