What Is it Like to Die of Dementia?

End-stage dementia makes your loved one vulnerable to infection and malnutrition

Puzzle of elderly woman with missing piece
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What can you expect at the end of life if a loved one has dementia?

While the inevitable death of your loved one is a difficult concept to wrap your head around and accept, knowledge about the future and what to expect may help you prepare both logistically and emotionally.

Dementia Is a Progressive Brain Disease

A person with dementia will follow a fairly typical pattern of decline, although the pace at which this occurs will vary.

For example, a person with Alzheimer's disease may initially experience difficulties remembering new information like names, events, or recent conversations. He may also exhibit signs of depression and apathy, as well as problems planning or completing usual tasks.

As the disease progresses, a person often becomes confused and disoriented and has trouble communicating (both speaking and writing). Poor judgment and withdrawal from activities she once enjoyed are also common. 

It's important to note, though, that there are different types of dementia, and each type is linked to different patterns of symptoms based on the brain changes that occur, so symptoms may vary a bit early in the disease state.

For example, people with Lewy body dementia may have some early symptoms similar to a person with Alzheimer's disease, like memory impairment, but are more likely to also have visual hallucinations, sleep problems, and a slowed gait.

On the contrary, memory problems are often not a problem in the early stages of frontotemporal dementia; instead, pronounced changes in personality and behavior are noted.

Still, in the final stage of dementia, symptoms are quite similar across all types, as a person experiences a significant decline in everyday functioning.

What to Expect in Late-Stage Dementia

Eventually, your loved one will reach the late stage of dementia (also called end-stage dementia or advanced dementia) in which symptoms become severe.

Most notably, a person will have problems with normal everyday functions like bathing, dressing, eating, and going to the bathroom. At this point, your loved one will be unable to walk or even sit up without assistance, so he or she will become bedbound and require around-the-clock care.

He will also lose the ability to speak and experience a  loss of facial expression, including the ability to smile. This can be particularly challenging for a loved one to witness. 

How Dementia Causes Death

With the impaired ability to move, a person in the late-stage of dementia is at risk for a number of medical complications like infection of the urinary tract and pneumonia (an infection of the lung). Difficulty swallowing, eating, and drinking leads to weight loss, dehydration, and malnutrition which further increases their vulnerability to infection. 

In the end, most people with late-stage dementia die of a medical complication related to their underlying dementia. For instance, a person may die from an infection like aspiration pneumonia, which occurs as a result of swallowing difficulties, or a person may die from a blood clot in the lung as a result of being immobile and bedbound.

However, it's important to note that dementia itself is fatal.  At times this is appropriately listed as the cause of death on a death certificate, as late-stage dementia is a terminal illness. 

The big picture here is that while a person with end stage dementia may technically die from an infection or other medical complication, it is their severe dementia that predisposed them to that complication and made them too weak to fight it off.

A Word From Verywell

While advanced dementia is incurable and will ultimately result in death, it's important to note that you can still provide comfort to your loved ones and play an active role in their care.

Hospice care is available and highly encouraged for individuals with late-stage dementia and includes strategies like comfort feeding, assessing and easing pain, mouth care, engaging in pleasurable activities like music or soothing touch, and managing uncomfortable symptoms.

With this strategy, you are proactively providing love and support and nurturing your loved one without putting them through futile medical interventions.

Sources:

Alzheimer's Association.2015 Alzheimer’s Disease Facts and Figures.

Alzheimer's Society, "The later stages of dementia."

Arcand M. Part 1: goals of care, decision-making process, and family education. Can Fam Physician. 2015 Apr;61(4):330-34.

 

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