Alzheimer disease is a progressive disease of the brain. It’s characterized by loss of memory, judgment and reasoning, changes in mood and behaviour, and eventually a reduced ability to perform the activities of daily living, such as eating, dressing, bathing and toileting.
In end-stage Alzheimer disease, the brain is no longer able to tell the body what to do. It can be very difficult to predict the length of Alzheimer disease, and each person’s experience of the illness is unique. However, the disease does follow a general pattern as it progresses.
Alzheimer disease slowly depletes a person’s ability to function. While it generally starts with lapses in memory or judgment, it progresses until the person is unable to communicate, make decisions, remember, or perform complex activities. Eventually, a person with Alzheimer disease has trouble with bodily functions, such as swallowing, bowel and bladder control, and coughing.
When swallowing is hard, food may get into a lung, which can result in pneumonia. Difficulty swallowing can limit a person’s intake of food and fluids. But people with advanced illness have decreased appetites and probably won’t feel hungry even when they eat and drink less. Although feeding tubes help supply nutrition to people when they can’t swallow properly, they are not usually helpful to people with Alzheimer disease.
See: The feeding, intravenous fluids and nutrition section in Lack of Appetite and Loss of Weight.
When a person is no longer able to swallow food, fluids and medications, the focus shifts to ensuring the person’s comfort, such as providing regular mouth care. In the final days of life, fluids and medication are not usually given unless they are required for symptom management.
See: End of life care on the Alzheimer Society of Canada website.
As Alzheimer disease advances, a person’s mobility becomes very limited, and he or she may stay in bed most or all of the time. The person may not be able to move in bed, so regular assistance with repositioning and skin care is important. Decreased mobility and movement may lead to body stiffness, which may make the person uncomfortable. People with Alzheimer disease require ongoing pain assessment and care strategies to ensure their comfort.
Sometimes pain medication is required to relieve general body aches or because of other medical problems such as arthritis. Because people with end-stage Alzheimer disease lose their ability to communicate, non-verbal signs, body language, and changes in behaviour (such as increased agitation, anxiety, or sleep disturbances) become important signs of pain or discomfort.
Like other progressive illnesses that deplete energy reserves and strength, people with advancing Alzheimer disease eventually become bedridden. Without the strength to cough and clear their lungs of mucous and secretions, they are more likely to develop pneumonia.
See: When Death is Near to learn more about the changes that commonly occur in the final days and weeks of advanced illness.
If a person has no advance care plan, family members will have to decide on end-of-life care. Around-the-clock supervision of a person with end-stage Alzheimer disease is very difficult for family members to do on their own. Most people at this stage of the disease are cared for in a long-term care facility. However, if family members decide to have their loved one die at home, home care services can provide them with extra support. Whether a person is at home or in long-term care, the family will be faced with many decisions, such as will a transfer to acute hospital care take place to give intravenous antibiotics for an infection?
You may find helpful guidance from Romayne Gallagher, MD, in this video: Crucial conversations: Providing a roadmap for decision-making.