Q: Good Afternoon Mrs.Posvar, I read that there is no cure for Alzheimer’s but do people really die from it? Mummy had Alzheimer’s but the doctor says she died from pneumonia. I never heard of anyone dying from Alzheimer’s or dementia. I don’t understand.
A: Great question! Your mom died from Alzheimer’s and secondary to pneumonia. It is often put on death certificate the opposite and no mention of dementia or Alzheimer’s at all on cause of death which gives a poor calculation of the millions of people who die from it daily.
Lack of knowledge of Alzheimer’s and related dementias will cause low death rates related to dementia because they do not recognize dementia as a diagnosis in the first place and most doctors look at the present illness as cause of death.
It doesn’t matter if a doctor labels dementia as primary or secondary, it should be on the death certificate as dementia usually plays a role in the death of that person.
One must also understand the dying process. It is natural and the body shuts down and no longer needs food or fluids during this stage. In fact most people who do still eat in these stages only take in small amounts and therefore I encourage giving them something they enjoy at this time. It is not about nutrition at this point. A typical person with dementia will experience complete dependency in all aspects of life with complications of brain failure. Typically in the last year or so you can see episodes of aspirations, urinary tract infections, bed sores, and a lot of weight loss. This may seem unnatural to caregivers and some health professionals but this is what happens and we should be sensitive to these last stages of dementia as they are hard to detect compared to someone dying of cancer.
Our tendency is to aggressively feed and push fluids. We should just allow the person to take what they want and understand they just don’t need a lot at this point. Surprisingly at times the coin will turn over as many times I have witnessed a person with dementia appearing to be only hours away from death and then, suddenly bright and awake ready to face the world as if he/she never were ill. And for this reason I encourage palliative care through the last stages of dementia. At this time the body is shutting down and many things can happen to appear as pushing death closer like a fall or pneumonia which is the most common. These things are secondary because if the brain was healthy enough to send the correct signals of balance, vision to see properly, and trigger immune system to do its job, the person either would not have fallen in the first place or recovery would have been easier with the person’s own immune system.
On the other hand it could be primary and dementia didn’t allow for recovery. We must understand that doctors and nursing care can do everything possible to sustain life but the ultimate fate is that person’s ability to respond to treatment. nine times out of 10 we as family and caregivers will rush for aggressive treatments putting the person with dementia in a lot of pain and discomfort to make them better and there was no change in the outcome. Therefore the treatment should be focussed on comfort. Palliative care is focused on comfort and this will at times include not sending to hospital and shift treatment to the home. There are occasions of sending to hospital and that is based on comfort for the dementia patient not on the notion of fixing or healing.
It is a difficult decision for families to make to agree or disagree to allow things like surgery or not. There are no promises on either side of the coin of how the person will respond. Comfort is the one thing you can humanely offer.
Keep your mind active and alert. Be the change you want to see and support an Alzheimer’s Awareness project to help a person with dementia or a family caring for someone with dementia.
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