What Is It Like to Die of Dementia?

What to Expect When You Have Dementia at the End of Life

Puzzle woman with missing piece
Can you die from Alzheimer's disease or dementia?. Photo © Andrew Bret Wallis/Stone/Getty Images

What can you expect at the end of life if you or a loved one has dementia? Alzheimer's disease and other forms of dementia are cruel diseases that progress over time and eventually lead to death. Alzheimer's disease is the sixth leading cause of death in the United States. Can you die from dementia?

Dementia is a progressive disease that affects the brain. Early stages of dementia might show up as memory problems, confusion, and sundowning (confusion starting late in the day, lasting into the night).

As dementia progresses, changes are seen in the basic ways in which the brain functions. A patient's personality changes, basic motor functions are impaired, and their ability to communicate decreases. Learn more about the various types and causes of dementia

Late-Stage Dementia Symptoms

A person with dementia might follow a fairly predictable pattern of decline through the seven stages of dementia. Once dementia has progressed to late-stage, however, death can generally be expected in 6 to 12 months. Symptoms of late-stage dementia include:

  • Increased incidence of infections, such as urinary tract infections or pneumonia
  • Impaired motor functions, including difficulty walking and moving, which causes the individual to be bed- or chair-bound
  • Incontinence of bowel and bladder, leading to full dependence on others for toileting and hygiene.
  • Loss of the ability to communicate through words
  • Difficulty swallowing and eating, leading to weight loss and aspiration pneumonia
  • Loss of facial expression, including the ability to smile.
  • Eventual inability to sit up or hold up their head without assistance.

Death from Late-Stage Dementia

Many individuals with late-stage dementia die of a medical complication, such as pneumonia or another infection. Pneumonia is listed as the cause of death in up to two-thirds of people who die with dementia.The loss of the ability to communicate in late stages can mean they don't report health issues to others, so they are not treated in earlier stages.

Urinary tract infection risk is heightened by incontinence and dehydration. Swallowing difficulties can lead to aspiration pneumonia.

However, dementia itself can be fatal. General wasting, malnutrition, and dehydration are genuine risks when an individual with dementia can no longer eat safely or move independently. These can lead to blood clots in the lung, a heart attack, or stroke. The debilitation can result in not being able to fight off a urinary tract infection, respiratory infection, or blood infection.

Palliative Care for Late-Stage Dementia

Palliative care is available and highly encouraged for individuals with late-stage dementia. Hospice care, in particular, can provide assistance to an individual in their own home environment and manage all of the distressing symptoms without prolonging his or her inevitable death. Read more about palliative care for dementia.

Advance Directives

Making decisions at the end of life is often not possible for the dementia patient. It is all the more reason that advance directives and medical power of attorney should be set up before the later stages of dementia.

Knowing what the person's wishes are for resuscitation and treatment can reassure loved ones that they are doing as the patient would choose for himself.

Sources:

 Alzheimer's Association."2015 Alzheimer’s Disease Facts and Figures." https://www.alz.org/facts/downloads/facts_figures_2015.pdf

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

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