Urgent warning for all caregivers of dementia patients

Dirty little secret

It’s a dirty little secret (actually a very BIG secret that’s completely despicable) that puts the most delicate and vulnerable patients at risk — for the worst possible reason.

Finally, Brown University researchers and the National Institute on Aging have put the word out, front and center in the medical mainstream spotlight of the New England Journal of Medicine.

But how many people do you know who subscribe to NEJM? And when the study was published last month, it registered little more than a blip in the evening news.

So I wanted to make sure that you knew about this shameful practice so you can protect your family and loved ones.

Specifically, this is an urgent warning for anyone who has a loved one or a friend with dementia who’s being cared for in an assisted living facility.

As low as you can go

Let me walk you through it: Medicaid pays a little less than $200 per day, on average, for long-term, assisted-living care of elderly patients with Alzheimer’s or other types of dementia.

These patients sometimes develop medical needs that require hospitalization. When the patients return from a hospital stay of more than three days, Medicaid payments increase substantially to cover specialized care.

For some assisted living managers, this benefit is necessary to continue proper care. But for others it’s something else. As one researcher told the Associated Press, the sharply increased payments provide “a tremendous incentive” to hospitalize these patients.

When a completely helpless patient represents an “incentive,” to be moved around like a piece on a board game, I’d say that’s just about as low as you can go in the field of “care-giving.”

Now you might think — assisted living, hospital — as long as they’re getting good care, what’s the difference?

For patients with advanced dementia, it’s a HUGE difference.

The move alone can be very upsetting for a dementia patient. And the Brown team found that patients who experienced a burdensome transfer were more likely to experience traumas ranging from severe bedsores to insertion of feeding tubes. They were also more likely to require intensive care in the last month of life.

For this study, researchers examined Medicare records for almost 475,000 patients with advanced cognitive and functional impairments who lived in nursing homes for at least the last 120 days before death.

Results showed that nearly 20 percent had at least one burdensome transfer during the last 90 days of life. (“Burdensome” is a polite, research-speak way of saying “suspicious.”)

Keep in mind that patients with advanced dementia are considered terminal, so moving them for relatively minor medical problems is just outlandish.

Giving the directive in advance

This study didn’t come to any specific conclusions about patients being deliberately moved so that Medicaid payments might increase. But other study results hint at that.

You just have to read between the lines. Like when we learn that burdensome transfers were not uniform between institutions. In one Texas city, more than 25 percent of patients in the study had multiple hospitalizations for conditions such as dehydration and pneumonia that can be treated in nursing homes. Meanwhile, only one percent of study patients in one Colorado city experienced burdensome transfers.

There was also a wide disparity between some states. Only two percent of patients in Alaska were given questionable transfers, but in Louisiana that number jumped to nearly 40 percent.

One other result stood out because it provides a clue for caregivers about how they can avoid burdensome transfers.

Patients who didn’t have an advance directive were more likely to be unnecessarily moved to a hospital compared to patients whose family and/or caregivers had provided written instructions detailing when and under what conditions a move could be made.

In an interview with the AP, an Alzheimer’s Association official elaborated on this strategy, adding that caregivers should develop good relationships with nursing home administrators, doctors, and other staff members to make sure the goals of care are understood.

As I mentioned above, the sad fact is that most of these patients are terminal, so “do not hospitalize” and “do not resuscitate” directives are often appropriate. These are difficult issues for loved ones to come to terms with, but it really is the kindest care that many advanced dementia patients can be given as they approach the end of their lives.

“End-of-Life Transitions among Nursing Home Residents with Cognitive Issues” New England Journal of Medicine, Vol. 365, No. 13, 9/29/11, nejm.org

“Dementia patients suffer dubious hospitalizations” Marilynn Marchione, Associated Press, 9/28/11, ap.org

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