Short of an autopsy, we don’t yet have a foolproof diagnostic tool for Alzheimer’s disease. Our clues are usually the symptoms that residents reveal. But symptoms are just that, symptoms. And they can be easy to overlook, misinterpret or ignore.

But when we are willing and careful observers, we can gain insight and perspective from signals that might otherwise remain locked away. Two recent books set out to describe the nursing home experience from the perspectives of outsiders and insiders, respectively. That they do. But they also challenge us to confront the dregs of a long-term care system that’s still too rough around the edges.
The first was co-authored by Robert Kane and his sister Joan West. It shouldn’t be this way: The future of long-term care serves up a disturbing thesis: the system is not working. The authors tell the painful story of what happened to their mother after she suffered a debilitating stroke and spent her final years in rehabilitation, assisted living facilities, and finally a nursing home.
Along the way, the authors encountered some professionals who were kind and considerate, but they also dealt with many frustrations — inadequate care and the need to hire private duty aides, as well as poor communication and care that lacked coordination. Their experience was far more difficult than it needed to be.
Another frontline perspective appears in Nobody’s home: Candid reflections of a nursing home aide, by Thomas Edward Gass.
As the title suggests, Gass recounts his experience as an aide in a Midwest for-profit facility. His premise is that substandard conditions are inevitable in settings where controlling costs and maximizing profits take priority over the needs of residents and their caregivers. He explains that many of his home’s policies aim to maximize revenues, exploit Medicaid payments and preserve a good public image.
Time constraints are one of his biggest challenges. Gass and another aide must provide care for more than two dozen residents. Most are incontinent and cognitively-impaired. He estimates that he has about 17 minutes each day per resident. He routinely confronts the co-mingled smells of disinfectant, urine and feces. At one point, he compares the surreal experience to life inside a Federico Fellini film.
Still, the book is not a hatchet job. The reader is left with the impression that Gass, his colleagues and the residents they serve are simply trying to make the best of a bad situation.
This industry is rightfully proud of recent quality efforts. But as these books illustrate, it may be a bit early for any “Mission Accomplished” banners. Too many troubling symptoms still persist.
John O’Connor, Vice President, McKnight’s Long-Term Care News
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