A Cleveland Clinic expert explains the signs that indicate a dementia patient is nearing the end of their life and offers advice on preventing caregiver burnout.
10 Signs Death Is Near for Dementia Patients
Published on Feb. 07, 2025
How dementia progresses
Dementia progresses in stages, with different grading systems used to assess its severity, shares Dr. Koncilja. One common method categorizes dementia into three levels: mild, moderate, and severe. Another widely used tool, the Functional Assessment Staging Test (FAST), specifically tracks the progression of Alzheimer’s disease, rating individuals on a scale from one to seven based on their functional abilities.
In the mild stage, individuals may struggle with managing medications, finances, or driving but can still handle most daily tasks independently. As dementia advances to the moderate stage, higher-level activities, such as cooking, shopping, and housekeeping, become difficult. However, individuals at this stage can usually feed themselves, maintain continence, and dress appropriately.
Severe dementia, also known as the advanced or late stage, affects even the most basic activities. Tasks like eating, moving from one position to another, and maintaining personal hygiene often require assistance.
10 signs death is near for dementia patients
For families and caregivers, recognizing the final stages of dementia can be difficult, but understanding the signs can help ensure comfort and dignity in a loved one’s last days. Dr. Koncilja highlights these key indicators that may suggest the end of life is near:
- A noticeable shift in behavior: A once restless or agitated person may become unexpectedly calm.
- Loss of appetite: A decreased desire to eat or drink can lead to significant weight loss and dehydration.
- Difficulty swallowing: The ability to chew or swallow may deteriorate, increasing the risk of choking.
- Reduced interest in food: Even once-favorite meals may no longer appeal, further contributing to nutritional decline.
- Profound fatigue: The patient may sleep much more than usual and appear increasingly detached from their surroundings.
- Muscle weakness: Everyday movements, such as holding a spoon or sitting upright, may become difficult or impossible.
- Communication struggles: Verbal abilities may diminish, leading to long pauses in speech or an inability to articulate thoughts.
- Increased confusion or disorientation: Familiar faces and places may become unrecognizable, heightening distress for both the patient and their loved ones.
- Changes in breathing: Breathing patterns may become irregular, shallow, or labored, indicating the body is slowing down.
- Loss of mobility: As strength wanes, the patient may become bedridden, relying entirely on caregivers for movement and support.
How long do people with dementia often live?
The life expectancy of someone with dementia can vary significantly, explains Dr. Koncilja. It’s important to understand that dementia is not a standalone diagnosis but rather a syndrome. “The underlying cause very much dictates life expectancy and prognosis,” he adds.
Some types of dementia progress rapidly. For instance, dementia associated with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, can lead to a significant decline within just a few years. On the other hand, conditions like late-onset Alzheimer’s in an otherwise healthy older adult tend to follow a much slower course. Someone diagnosed in their 80s could live another 10, 15, or even 20 years as the disease gradually progresses, says Dr. Koncilja. The rate of decline depends not only on the type of dementia, but also on an individual’s overall health and medical care.
Common causes of death for dementia patients
“It’s often that [patients pass away] from another disease that was made worse by dementia,” explains Dr. Koncilja. Here are some of the most common causes of death for dementia patients:
- Heart disease and strokes: Those with vascular dementia, caused by reduced blood flow to the brain, face a higher risk of heart attacks and strokes.
- Respiratory failure: Dementia can impair the brain’s ability to regulate essential functions, including breathing. In later stages, damage to the brainstem may contribute to respiratory failure.
- Pneumonia and infections: Alzheimer’s patients and others with advanced dementia are prone to aspiration pneumonia, a lung infection that occurs when food or liquid enters the airway instead of the stomach. Other infections, such as urinary tract infections that spread to the bloodstream, can also be fatal.
- Falls and injuries: Lewy body dementia, which shares similarities with Parkinson’s disease, can cause severe balance and movement issues, leading to dangerous falls and fatal injuries.
- Neurological decline: Frontotemporal dementia affects the brain’s ability to regulate essential functions, making patients more vulnerable to complications.
- Alcohol-related complications: In cases of alcohol-related dementia, organ damage from long-term alcohol use—such as liver failure or toxic buildup in the body—can be a primary cause of death.
When can dementia patients receive hospice care?
Hospice care is generally recommended for dementia patients when a physician determines their life expectancy to be six months or less. Dr. Koncilja notes that this stage often corresponds to a FAST score beyond 7C, indicating advanced cognitive and physical decline.
At this point, patients typically experience significant losses in mobility, communication, and self-care. “We look for key signs,” he explains. “A patient may no longer be able to walk, dress, or bathe independently. Their ability to communicate meaningfully is often reduced to fewer than six intelligible words per day. Incontinence—particularly fecal incontinence—also suggests a more serious prognosis than urinary incontinence.”
Another critical indicator is significant weight loss. “If a patient has lost more than 10% of their body weight in six months, it could be a sign of cachexia, a condition in which the body depletes muscle and fat reserves,” he says. Many dementia patients also have other serious health conditions, such as congestive heart failure, chronic obstructive pulmonary disease (COPD), or diabetes, which can further impact their prognosis.
How can hospice help?
Dr. Koncilja emphasizes the importance of discussing hospice care early. Families should have these conversations in advance to explore options for managing pain, easing anxiety, and improving quality of life for the patient. Hospice provides specialized support, ensuring that patients remain as comfortable as possible while offering caregivers much-needed guidance and relief during this difficult stage.
How to care for dementia patients showing signs that death is near
Providing care for a loved one with dementia as they near the end of life is both physically and emotionally demanding. While the patient’s well-being is paramount, caregivers must also prioritize their own health, says Dr. Koncilja.
“Caregiver burnout is, I think, the worst diagnosis for the patient,” he explains. A patient’s quality of life often depends not only on medical care but also on the caregiver’s ability to manage stress, access support, and maintain their own well-being. “I think it’s important that family members care for themselves in order to provide that care that their family member needs,” he adds. “And they shouldn’t feel guilty about this.”
To avoid burnout, Dr. Koncilja encourages caregivers to stay on top of their own medical needs, maintain social connections, and carve out time for rest and hobbies. Support can come from professional in-home care, community organizations, or informal networks of family and friends. Making sure your loved one receives hospice care is another critical part of providing comprehensive support.
Other helpful strategies after a dementia diagnosis
In addition to addressing caregiver burnout, Dr. Koncilja offers these recommendations for supporting loved ones after a dementia diagnosis:
- Establish a consistent routine: Keep daily activities in the same order at the same time each day. Incorporate exercise like walking, chair yoga, or breathing meditation. Physical activity is the most effective “medicine” for dementia, improving mood, alertness, and sleep.
- Engage in stimulating activities: Avoid excessive television; instead, encourage activities your loved one enjoys. Puzzles, card games, or simple board games can be beneficial.
- Simplify choices to reduce frustration: Instead of open-ended questions, provide two clear options (for example, “Would you like to eat chicken or turkey?”). Too many choices can overwhelm and lead to frustration.
- Use visual aids for orientation: Place large-print calendars and clocks in multiple rooms to help with time awareness. Ensure bright lighting during the day to support wakefulness.
- Maintain familiarity with caregivers and family visits: Minimize rotating strangers in the home, as this can cause confusion and suspicion. If multiple people visit, keep the schedule consistent to build trust.
- Adjust social and holiday gatherings: Plan family visits in the morning or early afternoon, as evenings often bring more confusion and agitation. For holidays, consider shifting celebrations from late-night dinners to brunch gatherings, which better align with your loved one’s routine and energy levels.
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