What’s in a name?

The long-term care (LTC) industry’s understanding of dementia’s impact has recently taken a major league curve ball to the forehead.

A study by the journal Neurology finally examined what many LTC nurses have been silently (and vocally) wondering for years: How many resident deaths attributed to other causes were actually caused by dementia? Or at least were cases where dementia was a big factor?

This study suggests that our stats attributed to dementia could three to five times higher than we think, or somewhere around 500,000 per year, compared to the 83,500 cited by the Centers for Disease Control and Prevention. Here's why:

Case in point:  “Jeff” has been a resident of a skilled nursing facility for years. His declining cognitive functions gradually lead to his move to a dementia care unit where he could receive specialized care. Later on, his now-advanced dementia causes his brain to stop sending the proper messages to his body on the crucial difference between breathing and swallowing. Jeff starts breathing in some food particles while he eats. This leads to an onset of severe pneumonia, which leads to a deep-seated infection, and he unfortunately dies. [Notice that I didn’t assign a sterotypical age for my fictional “Jeff,” since it doesn’t really matter: This scenario can happen at any age.]

So: What should the coroner write on the death certificate as cause of death? Pneumonia or dementia?

The recent study suggests that deaths attributed to Alzheimer’s have been vastly underreported, noting that many deaths tagged to other illnesses often have dementia as an underlying clinical cause. To those in the long-term care industry, that means our ideas of the dementia stats could be way off the previous mark—perhaps five times as high.

Perhaps it’s our current culture: That dementia is something residents “live with” while fighting off other [real] illnesses.

In case anyone is wondering, this is not about finger-pointing or assigning blame for death. It’s about deciding what role dementia actually plays in the national statistics that we all live with.

Because if this study is even half right, our national dementia stats could be as much as three to five times higher than we thought. And that’s some very serious food for thought—both in how we care for those with dementia, and in how we design environments that welcome them and make them feel at ease.

How will your facility handle this new view? Will you change your protocols or care-plan processes to reduce business risk? How do your nurses and physicians feel about it?

Talk about it. Have good, team-based conversations right now. Involve your full nursing staff, if possible—because they’re the people “in the trenches” of quality care, and they have knowledge that is extremely valuable to the discussion.

FYI: Memory care is no longer merely a "unit/ward in a SNF" or marketed as a "service feature." It’s a viable business unit all its own now.

Related story:
Alzheimer's disease causes more deaths than previously thought

Pamela Tabar

Pamela Tabar was editor-in-chief of I Advance Senior Care from 2013-2018. She has worked as a writer and editor for healthcare business media since 1998, including as News Editor of Healthcare Informatics. She has a master’s degree in journalism from Kent State University and a master’s degree in English from the University of York, England.