Dementia, the neurodegenerative disease that progressively impairs cognitive functions, inevitably progresses towards a fatal outcome. But as death approaches, certain signs are telling. What are these harbingers of the end of life in people with dementia? Here are some elements of answer.
1. A rapid deterioration of the general condition
In the final stages, there is often an accelerated and significant decline in the patient’s overall health status. Their general condition visibly deteriorates, with weight loss, muscle wasting, pallor, and a waxy complexion. The skin becomes thinner and more fragile.
This physical deterioration is frequently accompanied by a weakening of the immune defenses, opening the door to repeated infections. The body seems to be at the end of its rope, unable to fight back. All these elements confirm that the end-of-life process is underway and that the vital prognosis is now engaged in the short term.
2. Swallowing disorders
Swallowing becomes increasingly difficult for the terminally ill dementia patient. Dysphagia is almost constant at this stage, making it laborious to eat and drink. Choking is frequent, with a significant risk of aspiration pneumonia.
Chewing and swallowing require considerable effort for these highly debilitated patients. Many end up refusing to eat, or find themselves unable to do so. This aphagia contributes to malnutrition and dehydration, precipitating the general decline. But it also testifies to the involvement of the brainstem, the final stage before death.
3. A loss of responsiveness
The end-stage dementia patient interacts less and less with their environment. They seem disconnected, absent, lost in their inner world. Eliciting a reaction, even a minimal one, becomes a real challenge for those around them. Visual, auditory and tactile stimuli hardly evoke any response anymore.
Eye contact is almost non-existent, the gaze vacant. The sick person can remain prostrate for hours on end, apathetic, indifferent to their surroundings. This loss of responsiveness reflects the gradual dissolution of consciousness, which precedes the terminal slumber.
4. Persistent drowsiness
Gradually, the end-stage dementia person sinks into an increasingly deep state of drowsiness. They sleep almost constantly, waking only briefly and with great difficulty. It becomes practically impossible to keep them awake for more than a few minutes.
This permanent torpor, interspersed with rare moments of fleeting and confused consciousness, is characteristic of the last days or hours of life. It’s as if the patient is gently preparing for the ultimate sleep, the one from which there is no awakening. Loved ones must then take advantage of the slightest glimmer of lucidity to exchange a look, a word, a gesture of tenderness.
5. Altered breathing patterns
Breathing undergoes noticeable changes in the terminal phase of dementia. It can become irregular, shallow, labored, or punctuated by long pauses. This phenomenon, known as Cheyne-Stokes respiration, is characterized by cycles of crescendo-decrescendo breathing interspersed with episodes of apnea. It signals a dysfunction of the respiratory centers in the brain, heralding imminent death.
The rattling sound of secretions in the throat, often referred to as a “death rattle,” further testifies to the shutting down of vital functions. These agonal breathing patterns can be distressing for families to witness, but usually cause no discomfort to the dying person.
6. Mottled and cold extremities
As the body begins to shut down, blood circulation becomes less effective. This leads to a characteristic discoloration and cooling of the extremities (hands, feet, fingers, toes). The skin takes on a mottled, purplish, or bluish appearance, especially in the nail beds, knees, and elbows.
This phenomenon, called peripheral cyanosis, indicates that blood is being shunted away from the limbs to preserve vital organs. The hands and feet may feel cold to the touch, signaling a drop in body temperature. These changes in skin color and temperature are among the most reliable indicators that death is near.
7. Unresponsiveness to verbal stimuli
In the hours or days immediately preceding death, the dementia patient becomes increasingly unresponsive, even to loud verbal stimuli. Calling their name, speaking to them, or trying to rouse them elicits little to no reaction.
They appear to be in a state of deep unconsciousness, from which they cannot be awakened. This unresponsiveness extends to physical stimuli as well. Even shaking, pinching, or applying pressure triggers no response, defensive or otherwise. This profound unresponsiveness signifies that the brain is shutting down and that the end of life is very near.
8. Urinary and fecal incontinence
As the body’s systems begin to fail, the dying person loses control over eliminative functions. Urinary and fecal incontinence are common in the last days and hours of life. The sphincter muscles that control these functions relax, leading to involuntary release of urine and stool. This can be distressing for families and challenging for caregivers to manage. However, it is a normal and expected part of the dying process, reflecting the shutting down of the autonomic nervous system. Gentle cleansing and protective measures can help maintain comfort and dignity in the face of these changes.
9. Unusual vocalizations or sounds
As the end of life approaches, dementia patients may make unusual vocalizations or sounds. These can include moaning, groaning, grunting, or even a soft, high-pitched cry known as the “death cry.” While distressing for loved ones to hear, these sounds do not necessarily indicate pain or suffering.
Rather, they likely reflect the brainstem’s response to the shutting down of vital functions. The vocalizations may be sporadic or continuous and can alternate with periods of silence. They are part of the normal progression towards death and do not usually require intervention beyond comfort measures.
10. A glassy, vacant stare
In the final hours or moments of life, the eyes of the dying person may remain half-open, with a glassy, vacant stare. This distant, unfocused gaze is often described as looking “beyond” the physical world. The pupils may be dilated and unresponsive to light.
Blinking slows and may stop altogether. This “thousand-yard stare” is a hallmark of impending death, signaling the imminent release of the soul from the body. For those keeping vigil, it can be a poignant and profound moment, inviting quiet presence and loving farewell. The vacancy in the eyes reflects the transition from this realm to the next.
