In this blog we are going to discuss what can be a sensitive topic for some, and that's how dementia kills and the typical causes of death with dementia. It is a bit of morbid topic, but, it's an important topic to cover. To get started, I'm going to just give a you a brief outline of what dementia is so that we can be sure we are all on the same page. If you want a more detailed explanation, you can definitely check out our What is Dementia? blog post.
Now, as just a brief overview, dementia itself is not actually a disease. It's a syndrome, meaning that it is a collection of symptoms that are caused by various diseases and conditions. So, dementia is the symptom that's being caused by something else — something else being other diseases, other conditions. With dementia, you are going to see a loss of thinking, remembering, reasoning and behavioral abilities to the extent that it interferes with daily functioning. Different things that can cause these symptoms are Alzheimer's disease, lewy bodies, brain disorders that impact the frontal and temporal lobes, changes in the blood flow to the brain, alcohol abuse, B vitamin deficiencies, infections, etc. There are actually over 100 different conditions and diseases that can result in the symptoms of dementia. However, as many of you may have gathered by this point along your journey, Alzheimer's disease is the most common type and cause of dementia and that's why it gets so much attention.
So with dementia, what is being impacted is the brain and with true dementia, it's going to be progressive and worsen over time. This is because what essentially is being triggered is brain cell death. So, to put it quite plainly, the brain is dying. What's important to realize is the brain controls all of our functions. Therefore, as the brain dies, so will our functioning. Unfortunately, this extends to the functioning of the lungs, the heart, our breathing, circulation, sleep cycles, swallowing, digestion — everything.
In the US, Alzheimer's disease is the 5th leading cause of death for adults 65 years and older and the 6th leading cause of death for all adults. Now, unfortunately when they do these types of statistics they are not talking about all dementias... just Alzheimer's disease, okay? So, that's important to keep in mind. But, what's even more important to keep in mind is that according to the CDC, “Dementia, including Alzheimer’s disease, has been shown to be underreported in death certificates and therefore the proportion of older people who die from Alzheimer’s may be considerably higher.” And, back in 2014, based off a study done by the NIA, Alzheimer's disease alone may actually be the third leading cause of death.
So, the next big question, is well...if they aren't reporting dementia on death certificates, then what are they putting? On death certificates what you tend to see, which may be correct in most cases, is the immediate causes of death and not so much the underlying cause of death.
Now, let's talk about the most common causes of death for people living with dementia. Broadly speaking, the most common causes are infections, accidents, blood clots, co-existing illnesses, and dehydration. But, let's break this down.
One of the most common causes of death, if not the most common cause, is pneumonia. Pneumonia is when the air sacs of the lungs become inflamed and may fill up with fluid or pus. A person with pneumonia may develop a cough with phlegm or pus, have fever with or without chills, and experience difficulty breathing. So, what makes a person living with dementia susceptible to catching pneumonia? One of the big reasons is that as dementia progresses, people will start experiencing difficulty with oral motor control and coordination as well as swallowing. When a person has difficulty swallowing we call this dysphagia. If someone isn't managing food or drink in their mouth well, it can end up going down the windpipe versus the esophagus, which can lead to an infection in the lungs...this type of pneumonia is specifically called aspiration pneumonia.
Things to look for:
• Coughing or chocking during or after meals
• Running nose while eating
• Watering eyes
• Change of color while eating
• Spitting out food
• Effortful chewing
• Food/drink spilling from mouth
• Wet gurging voice after eating
• Food/drink residue in mouth
If your loved one is experiencing any of these aforementioned things, definitely let the doctor know, so they can get them a referral for a speech therapy evaluation. If your loved one has previously been evaluated, but you are noticing the things I've listed again...they may need a new evaluation with new recommendations. At some point, honestly, there might not be much that can be done, but what we can always do, is try.
Many of you may have noticed just how common UTIs can be in those living with dementia. A big issue is that as dementia progresses, managing personal hygiene can become more and more difficult. And, it may become more and more difficult to get your loved one to cooperate when it comes to personal hygiene as well. Bladder and bowel control also becomes more difficult and incontinence becomes a big thing. Another issue that can develop is urinary retention, which is when a person has a difficult time emptying their bladder fully which can also lead to a UTI. So, for these reasons and some others, UTIs are very common and women are typically at higher risk of a UTI because of how our wonderful anatomy and urinary systems are setup.
Signs of a UTI:
• Changes in behaviors (maybe there are more aggressive or aggitated easily)
• Changes in appetite
• Changes in sleep in patterns
• Increased confusion or disorientation
• Unexpainable decline in function
Now, the issue with a UTI is that it can lead to sepsis (or urosepsis more specifically) if left untreated, which means that it has spread to other organs such as the kidney and can cause issues like kidney failure, organ damage, septic shock, and other things we don't want.
Skin or pressure ulcers are a big issue especially in the late stages of dementia once a person becomes chair or bed bound. I cannot stress enough how important it is to adjust the position of your loved one every 2-4 hours. Ideally 2 hours, but at least every 4 hours. You also want to make sure that you position them properly with pillows or cushions. The areas most prone to pressure ulcers is really any bony part of the body that comes in contact with a surface for too long. This could be areas such as the back of the head, the shoulder or shoulder blade, the elbow, buttocks, hips, around the knee, the heel of the foot, etc. Pressure ulcers can literally be a pain in the butt and a booger to heal, especially if the person also has diabetes. And, of course, an even bigger issue is if the wound becomes infected.
Other infections could be related to an injury or surgery or something like that and many times your partner may not really be able to communicate their symptoms to you for you to know in a timely manner or you as the caregiver may have a difficult time keeping the wound site clean and dry. So as we can see, infections can be a pretty big deal and issue.
Another big cause of death in persons living with dementia is accidents and incidents, especially falls. Falls are a big issue in the dementia population. The risk for death could be directly associated with the fall itself if a person sustains a life threatening injury such as a blow to the head, or if they develop something like a blood clot or infection after a surgery that was required after some fall related injury like a fracture.
Blood clots are also an issue in general for persons living with dementia, especially if they aren't very mobile. And really, any form of inactivity can increase your risk of developing a blood clot. Sitting or laying too long, whatever the reason may be, is just no good. When we are in a static position too long it decreases the blood flow in the veins, which can result in a blood clot. A big issue with blood clots is that they can break loose and end up dangerous places like the lungs, brain, or heart, which are all medical emergencies and can be fatal.
Another cause of death can be complications due to coexisting illnesses which, of course, come with their own set of issues. It is not uncommon for a person with dementia to also have conditions such as heart disease, high blood pressure, diabetes, kidney disease, chronic respiratory disease, etc. We won't dive deep into these for this blog, but these illnesses paired with a dying brain just don't typically fair well. As the brain is dying and impacting different body functions it can exacerbate coexisting illnesses/conditions.
According to the International Journal of Geriatric Psychiatry dehydration and general deterioration is the most common cause of death for dementia patients who live to the final stage. As dementia progresses people do not perceive hunger and thirst the same way anymore. This function is controlled by the brain, which is starting to shut down even more. Therefore, there can be a general disinterest in food and water. Towards the end of life, there will be an overall decrease in the amount of food and fluid your partner is willing to intake. In general, most people can only survive about 3 to 5 days without any water. Of course, there are always exceptions, but definitely something important to know.
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