The advanced stage of Alzheimer’s disease presents a challenging phase for both patients and their caregivers. As the condition progresses, a decline in the ability to eat and drink is a common, expected part of the natural process. This cessation of oral intake signals the body’s systems shutting down and often indicates the individual is nearing the end of life. Understanding this progression is important for families facing complex decisions about comfort and care.
Reasons for Loss of Appetite and Swallowing Ability
The inability to eat in advanced Alzheimer’s disease stems from neurological and physical deterioration. The disease pathology directly affects brain areas controlling complex functions like hunger, thirst, and swallowing mechanics. Patients may lose the cognitive ability to recognize food or remember the physical steps of chewing and swallowing.
A major physical factor is dysphagia, or difficulty swallowing, which is highly prevalent in moderate to severe Alzheimer’s patients (84% to 93%). Brain damage impairs the coordination of muscles involved in the swallowing sequence. This impairment significantly increases the risk of aspiration, where food or liquid enters the lungs instead of the stomach, potentially leading to aspiration pneumonia.
Furthermore, physical decline in advanced stages includes muscle weakness and apathy, reducing the patient’s total energy expenditure. Consequently, the body’s natural need for calories and fluids decreases substantially. The loss of hunger and thirst is a physiological change, not a refusal, marking a profound shift in metabolic demands as the body nears the end of life.
Physical Changes When Food and Drink Are Withdrawn
When a person with advanced Alzheimer’s stops consuming food and liquids, physiological changes begin as the body adapts to the lack of intake. The initial concern is the onset of dehydration, which occurs faster than starvation. This process often leads to a natural decrease in discomfort as the body’s systems slow down.
Reduced fluid intake leads to a lower volume of blood and bodily fluids, decreasing the production of urine and other secretions. This can reduce uncomfortable symptoms like congestion and pulmonary edema. The body’s shift to internal dehydration often leads to increased drowsiness and a reduced level of consciousness.
As the body runs out of available glucose, it breaks down fat reserves for energy, entering a metabolic state called ketosis. The breakdown of fats creates ketones, which can have an analgesic or pain-relieving effect, contributing to a sense of well-being. This process, coupled with energy conservation, results in significant weight loss and muscle wasting.
This progression toward increased sleepiness, decreased awareness of hunger or thirst, and metabolic changes means the patient is often not experiencing the intense suffering associated with starvation. The cessation of intake is part of the final, natural process, with dehydration and ketosis often acting as a form of natural anesthesia. This phase generally occurs within one to three weeks before death, though the timeline varies.
Navigating Decisions About Tube Feeding and Hydration
When oral intake ceases, families face the decision of whether to intervene with artificial nutrition and hydration (ANH), such as a PEG tube or IV fluids. The current consensus among major medical organizations advises against the routine use of feeding tubes in advanced dementia. Studies consistently show that tube feeding does not prevent aspiration pneumonia, a leading cause of death, because the patient can still aspirate saliva and stomach contents.
Furthermore, artificial feeding has not been shown to prolong survival or improve nutritional status and comfort compared to careful hand feeding. Instead, feeding tubes introduce substantial risks and burdens. These include agitation, the need for physical restraints to prevent tube removal, and complications such as local infections at the insertion site.
The decision to use ANH also risks increasing patient discomfort. IV fluids can lead to fluid overload, causing or worsening symptoms like shortness of breath and peripheral edema. Forgoing a feeding tube acknowledges that the body is shutting down and that medical intervention is unlikely to change the outcome and may increase suffering.
Prioritizing Comfort and End-of-Life Care
Once the decision is made to focus on palliative care, the goal shifts to ensuring the patient’s dignity and comfort during the final stages. A primary focus is meticulous oral hygiene, as a dry mouth is often the greatest source of discomfort. Caregivers should regularly moisten the patient’s mouth and lips using specialized oral swabs, small pieces of ice, or lip balm.
Pain management is another central component, involving close monitoring for non-verbal signs of distress, such as grimacing, moaning, or restlessness. Healthcare providers use pain medications to manage discomfort arising from immobility, pressure sores, or other underlying conditions. Proper positioning and gentle repositioning are also important to prevent skin breakdown and promote ease of breathing.
The involvement of hospice care is beneficial, as they specialize in end-of-life comfort and provide support and education to the family. Hospice teams focus on symptom control and a peaceful environment, assuring the family that stopping food and fluids is a natural part of the dying process. The overall approach moves the focus from sustaining life to ensuring the highest quality of comfort possible.