December 21, 2014

Assisted Living: Boon or Boondoggle?

Assisted Living burst onto the scene as the hottest new option for senior housing in the 1990s. It was supposed to help keep older people out of nursing homes by offering them the help they needed while allowing them to retain their dignity and their privacy. So between 1991 and 1999, the number of such facilities increased by 49%. Between 1998 and 2003, the number increased another 48%. Fortune Magazine reported that assisted living was one of three leading growth industries and that Wall Street investors were falling all over each other to get a piece of the action. Since then, the industry has been plagued by problems, with critics charging that what AL actually offers is fraud, false promises, and neglect. Proposed new regulations in Massachusetts are intended to protect older people living in Assisted Living. Will these new rules, which are likely to go into effect in January, 2015, improve the quality of care or will they spell the death knell of assisted living?

The best way to understand what’s happening with Assisted Living is to look at the evolution of nursing homes, and the best way to understand nursing homes is to start with the “rest home,” the common ancestor of both nursing homes and Assisted Living. Rest homes or old age homes began appearing in the late 19th century as a way to help care for the “deserving poor.” Until that time, long before the era of social security, older people who needed a little help to get by had to depend on their families. If they didn’t have a family, they ended up in the almshouse, large, unsanitary and unsavory institutions that warehoused society’s outcasts—those with alcoholism, syphilis, disabilities, or dementia. A number of  private sectarian groups decided in the 1890s and early 1900s to provide a residence for members of their community who were poor and alone through no fault of their own. In the Boston area, the Burnap Free Home for Aged Women was established in 1901 for elderly Protestant women; the German Ladies Aid Society was built in 1893 for indigent German women, and the Baptist Home started out in 1892 as a home for ailing Baptists. These institutions, like contemporary assisted living facilities, were not medically oriented. They demanded that residents be able to care for themselves and perform some basic housekeeping. Assuming they continued to be reasonably independent, they could stay on indefinitely and many did: the average length of stay at one facility was 13 years (for more background, see my book, The Denial of Aging.)

These early rest homes thrived for years, allowing a sliver of the elderly population to live in a homey environment with others of the same faith or ethnic background. But precisely because they were not medical institutions, and did not conform to the sanitary, dietary, or safety standards of hospitals, they began getting in trouble by the 1950s. State licensing requirements were developed that led to changes in sanitation, ventilation, and staffing—and that threatened to put the rest homes out of business as their costs soared. The next blow came with the Hill-Burton Act of 1954, which gave federal funds for building nursing homes, creating a new institution that competed for residents, the nursing home. The final blow came with the passage of Medicaid in 1965, which provided payment for care of poor people in licensed nursing facilities. A few rest homes survived (renamed “board and care facilities”), but not many.

For the next quarter of a century, nursing homes found themselves the target of more and more regulations. The new rules were intended to improve the quality of care in nursing homes, and they did. Squalor, abuse, and neglect gradually faded from nursing homes, thanks to the new rules. But the way they achieved their results was to remake the nursing home in the image of the hospital, as a medical facility, not a “home.” It was this reality that provided the impetus for Assisted Living. AL would focus on providing a “home,” not on nursing or medical care.

It was an attractive model. Live in your own apartment with a kitchenette and a front door that locked, have meals in a communal dining room, get some basic weekly housekeeping services, and have an aide to help with bathing and dressing for half an hour twice a day. More and more people moved into assisted living, although they were by and large upper middle class or affluent, as the rates were high and public support was rare. Over time, the proportion of people in AL with dementia rose to 40%. Many residents used walkers. Lots of them suffered from multiple chronic conditions. In fact, the people who live in AL today look a lot like the people who used to live in nursing homes—and those who live in nursing homes today are very, very sick or disabled. 

But AL was not set up to provide nursing care. Its staff did not administer medications (though facilities typically offered  “supervision” of resident "self-management" of medications). It did not monitor blood sugars in diabetics or weights in people with heart failure. It did not make sure that people with dementia remembered to go for their meals every day. The result was that some of the residents got into trouble. AL was blamed for insufficient monitoring and for accepting people who were too sick for what they offered. The solution? New regulations.

The proposed new Massachusetts rules are hardly the only regulations on the books. Most states have rules governing assisted living facilities. Massachusetts has plenty of rules affecting AL, rules that it last revised in 2006. Previous regulations were consistent with a pattern of increasing regulation, much as occurred in nursing homes and that made them the rigid, medicalized facilities they so often are. But these new rules take a different tack. Instead of medicalizing Assisted Living, they proclaim that AL must be an option only for those who are not sick. Like in the earliest AL facilities, and like in the 19th century rest homes that were their ancestors, the new rules say AL must exclude anyone who needs more than the facility itself can provide. The way they would achieve this end is to require that anyone who received 90 consecutive days of skilled nursing services (a Visiting Nurse, a physical therapist, or hospice) must move out. 

What this means is that older people will not be able to age in place. If they need more assistance than the facility offers, they cannot bring in outside help. It means they cannot die in Assisted Living with the support of a hospice program—or only if they do so within 3 months of enrolling in hospice. Is this a good idea? Is there a bright line between nursing homes and assisted living facilities? Should a nursing home be more like an assisted living facility? Should assisted living have some of the features of nursing home? Or is the concept of assisted living fatally flawed?

Part II of this article will be published next week.

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