The term “dementia” refers to the gradual loss of several cognitive or thinking abilities. Over time, people with dementia lose the ability to remember, to communicate effectively, and to use reasoning skills to function in their daily lives.

Dementia symptoms such as memory loss may not directly cause death. But the disorders that cause dementia damage the brain and body and often do lead to death. In fact, the National Institute on Aging has said that the number of deaths linked to dementia may be up to three times higher than is reported on death certificates in the United States.

This article explains how progressive brain diseases such as Alzheimer’s and Parkinson’s cause death. It also discusses ways to care for people who may be in the later stages of a progressive brain disease.

Dementia isn’t a single disorder. It’s a blanket term that includes many progressive brain diseases such as:

These disorders damage cells that carry out important functions throughout the brain, nervous system, and body. As the disorder progresses, it becomes more likely that someone will develop one of these life-threatening conditions:

Pneumonia

The leading cause of death among people with Alzheimer’s disease is pneumonia.

One of the ways dementia disorders affect the body is that they destroy the ability to swallow safely. Food and liquids can slip down the windpipe rather than the esophagus. When that happens, an infection can develop in the lungs, leading to aspiration pneumonia.

Other infections

People with dementia may be more likely to have infections as their condition progresses.

, infections related to injury or surgery, and COVID-19 pose particular dangers for people with dementia because they may not be able to talk about their symptoms, follow through on their care plans, or maintain a safe distance from people who are helping them with their daily needs.

Falls

People with Parkinson’s are at a higher risk of falling because the disorder interferes with movement and balance. Falls can result in fractures that sometimes require surgery, and surgery can result in complications. After surgery, people can develop infections, blood clots, and heart problems that are sometimes fatal.

Stroke

A research review published in 2020 found that Parkinson’s disease is associated with a higher risk of stroke.

Researchers think the higher stroke risk might be because of oxidative stress on blood vessels in people with Parkinson’s. Oxidative stress is when oxygen-containing free radicals and antioxidants in your body are out of balance. That imbalance damages cells.

Cardiovascular disease

Some dementia disorders are associated with atherosclerosis, a build-up of plaque in the arteries. Atherosclerosis can lead to heart attacks, heart failure, and blood clots.

Malnutrition

Dementia can change people’s eating behaviors. When people with dementia don’t or can’t keep up healthy eating habits, poor nutrition can lead to weight loss, frailty, and the inability to move around. These conditions can raise the risk of an earlier death.

Dementia disorders are progressive, meaning they worsen with time. How fast each person changes has a lot to do with their individual health and the cause of their condition.

In the early stages of some progressive disorders, symptoms may vary. For example, people with Lewy body dementia may have more problems with movement and hallucinations than someone with Alzheimer’s, says the Alzheimer’s Association.

As the illnesses progress, they share more and more of the same kinds of symptoms. You can tell someone is in a later stage of a progressive brain disorder if they:

  • have lost the ability to walk, eat, swallow, sit up, or move around
  • need a wheelchair or stay in bed most of the time
  • have hallucinations or delusions
  • cannot control their bowel and bladder functions
  • have extreme personality, behavior, or emotional changes
  • need round-the-clock care and lots of help meeting their basic needs
  • cannot remember recent events or experiences
  • can no longer communicate clearly, even if they can still use some words
  • may not recognize their surroundings

The ideal time to plan for late stage care is when the person with dementia can still participate in the decision-making process. However, even if the person with dementia and caregivers communicated clearly while the disease was in early stages, things can change. Symptoms can progress more or less quickly and resources may dwindle.

Here are a few things to keep in mind if you are caring for someone in late stage dementia:

You’ll probably need to build a support network

Caring for someone in late stage dementia can be intense, demanding, and rewarding — all in a single day. You’ll be better equipped for the challenge if you can call on a varied group of support providers.

Nurses, doctors, home health aides, physical and occupational therapists, and hospice workers can help you take care of physical and medical needs. Mental health professionals, members of a faith community, and friends can help you meet emotional, social, and spiritual needs.

You’ll need support for yourself, too

The National Institute on Aging points out that caregivers can experience confusion, depression, anxiety, fatigue, and grief at times. It’s a good idea to plan regular times for others to take over caregiving responsibilities so you can take care of your own needs and experience some respite and relief.

Consider palliative care and hospice as part of the process

Palliative care addresses the overall well-being of people with chronic illnesses like progressive brain disorders and dementia. Palliative care and end-of-life hospice care are not the same thing.

  • Palliative care. Palliative care providers can help you work through important decisions about which treatments and procedures will bring the biggest benefits. They can also provide medications to relieve pain, anxiety, emotional distress, and other symptoms that arise in late stage dementia. They may be able to help you access the services of social workers, nutritionists, and therapists to meet a wide range of needs.
  • Hospice care. Hospice services can ease the transition to end-of-life care, supplying equipment and treatments that bring greater comfort and make it easier to care for a person in this stage.

Dementia is not a disease. It’s a decline in the ability to reason, communicate, remember, and function in life. While dementia itself may not cause death, the result of progressive brain disorders eventually cause death.

Alzheimer’s and Parkinson’s diseases, frontotemporal disorders, and Lewy body and vascular dementia all cause a gradual loss of thinking abilities. They damage brain and nerve cells and can lead to pneumonia, stroke, falls, infections, and malnutrition that are often fatal.

There’s no cure yet for the progressive brain disorders that cause dementia. Over time, symptoms will become more severe, and people will need more help caring for themselves. For that reason, it’s important to make plans and build a support network to meet their changing long-term needs.