Navigating a Medical Emergency with Dementia

I’ve been thinking about our medical care system lately and how difficult it is to navigate when your loved one carries a diagnosis of dementia of some sort.

Early on in the COVID-19 pandemic, to protect staff and other patients, a person coming into the hospital, through the emergency department or as an admission, was not allowed to be accompanied by anyone. Those rules have relaxed a bit in some facilities.

My heart went out to family caregivers and their loved ones. As caregivers, one of our most important roles is to be an advocate for our loved one with dementia. They cannot make decisions for themselves. They cannot give a complete and accurate description of their medical history or medications. They may not be able to comprehend instructions given to them. They totally rely on us!

About five years into his diagnosis, Harvey developed appendicitis. I realize that I had a huge advantage because of my medical training. I was able to diagnosis him pretty easily with an examination, then got a CT scan and a consultation with a general surgeon in fast order. After surgery, he needed to spend the night, and I didn’t have the confidence that the floor would know how to manage him, so I stayed with him. Our youngest daughter came in at 6:00 the next morning to relieve me, so that I could work.

Two days later, he developed excruciating pain in his chest and abdomen. He couldn’t tell me what was wrong; he would just intermittently clutch his chest and writhe in pain. This was a more difficult diagnosis for me to make on my own, so I took him to the emergency room. He needed another CT scan to rule out a blood clot in his lungs, and a CT of his abdomen to make sure the surgery hadn’t developed any complications. All straight-forward enough, but because of his pain and inability to understand the instructions, Harvey could not be still enough for the CT scans. They had to sedate him, and I was called into the CT suite to see if I could calm him.

The final diagnosis was pneumonia, probably brought on by not fully ventilating his lungs after surgery as he was supposed to do. He had been sent home with a breathing devise that prevents such a complication, but I remember giving up on him using it correctly.

Imagine how different that simple medical emergency would have been had he not had Alzheimer’s disease. He wouldn’t have required someone to stay with him at all times. He would have performed the respiratory exercises appropriately and not developed pneumonia. If he had developed a secondary pneumonia, it would have involved a simple visit to a primary care physician and a plain X-Ray.

I shudder to imagine how that episode would have played out had I not been allowed to accompany him!

I recently learned that research shows that it costs twice as much to care for a medical problem in a patient with Alzheimer’s disease than it does for someone without that diagnosis. That sounds about right!