Expert: Mary Gordon - 1/11/2012

Question
Ms. Gordon: First, I must report that my wife died last month, about 30 months after she was diagnosed with Alzheimers. She had stopped eating and could barely walk. In the course of her illness I submitted several questions to you and I want to say again how much I appreciated your careful and sensitive answers.

I have one further question. On my wife's death certificate, under item Cause of death, her physician wrote "dementia." Is that really a cause of death, or was the cause something more specific, like the failure of an organ, perhaps? I'd appreciate your thoughts here.

Answer
I am very, very sorry for your loss. I hope you are taking care of yourself and have lots of family and friends around you to support you through this.

Here is the way I look at it. My mother in law was robustly healthy compared to many of her peers - she had no diabetes or cancer or heart disease. She had no chronic lung problems. Her kidneys were fine. Her digestive tract and liver were in perfect working order. The only thing really the matter with her, other than the annoyance of arthritis, was the dementia that surfaced in her early 70's. If she had not been so healthy physically  I doubt she would have lived seven years into the black tunnel of Alzheimer's. She even survived two full years after she lost the ability to walk and talk.  

At the end, she was so thin and frail and weak, it was hard to believe her heart beat on. It was the dementia that caused her to lose her coordination, stop walking and waste away. The dementia was why she stopped eating and drinking enough to sustain life. Everything that  led directly to her final spiral was due to her dementia.  

I guess you could say the immediate cause of her death was dehydration or starvation or perhaps kidney failure, but what caused her to be in that state was her neurological deterioration. As you know, many people with end stage Alzheimer's often die of pneumonia - so that may be tagged as the immediate cause of death. However, they get pneumonia when a healthy person would not because they are immobile, their lungs don't get cleared properly, and they often aspirate food, drink and saliva into their lungs due to swallowing problems. Their frailty due to immobility and wasting means they can't fight it off. So, pneumonia might be the immediate cause, but without dementia, they never would have gotten sick in the first place.

There have been several studies that suggest that dementia as the real cause of death is very much underreported. For example, one  prospective study of nursing home residents with end-stage dementia found that dementia was not recorded on their death certificates in almost 40% of cases. This makes it very hard for a health care system to get a good handle on what the real contributing factors causing  death are. It is important to know for long term planning and allocation of resources. In 2004, the National Center for Health Statistics ranked Alzheimer's disease (AD) as the fifth leading cause of death among US residents over 65 years of age - and they get those numbers from death certificates. Sounds like the truth is probably more like 1 in 3 - which is what Australian authorities now estimate the toll to be.

I  know it is puzzling because people don't think of dementia as a terminal illness - but it is no different than if a person has a cancer and becomes very weak and wasted and their immune system is impaired. They catch some minor infection that would not harm a healthy person, and pass away. On their death certificate, do you list the infection as the cause of death, or their cancer?

I think it is a positive that your wife's doctor has been as honest as possible about what took her life.

I'm thinking of you. I hope you are at peace now that she is released from all her suffering, and that her passing was gentle and loving. You sound like a lovely man and a good husband.