What does dying from dementia look like?
Dying from dementia usually looks like a long, gradual loss of abilities, followed by a clearer final decline.
General information: This page gives general information for people in Australia. It cannot tell you exactly what is happening in one person's situation. If you have concerns about a symptom, medicine, treatment decision or change in someone's condition, contact their doctor, palliative care team, nurse or other treating health professional.
Dying from dementia usually looks like a long, gradual loss of abilities, followed by a clearer final decline. The person may become very frail, sleep more, speak less, eat and drink less, have trouble swallowing, get infections more often and need help with all personal care. In the last days, they may be mostly asleep or unconscious, with changed breathing and cooler hands or feet.
Dementia is a terminal illness. This can be hard to hear, because many people live with dementia for years. In advanced dementia, the brain damage affects memory and thinking, but it also affects movement, swallowing, alertness and the body's ability to keep going.
Changes families often notice
In the later stages, a person with dementia may no longer recognise people reliably or may communicate through facial expression, touch or sound rather than words. They may be unable to walk, sit safely, eat without help or tell others what they need.
Swallowing often becomes harder. This can mean coughing with food or drink, holding food in the mouth, taking a long time to eat, losing interest in meals, or getting chest infections after food or fluid goes down the wrong way. The person may lose weight even when carers are offering food with care.
Bladder and bowel control often changes. The person may need pads, help with washing, and careful skin care. They may also become more prone to pressure injuries if they spend most of the day in bed or a chair.
Agitation, calling out, sleep changes or distress can happen. These changes do not always mean pain, but pain, infection, constipation, fear, delirium, medicine effects or an uncomfortable position can all be part of the picture. The care team can check for causes that can be treated.
The final days
When death is getting close, the person may sleep most of the time and stop taking more than small sips or mouth care. They may not be able to swallow tablets. Breathing may become noisy or uneven. There may be long pauses between breaths.
Hands, feet or knees may feel cool or look blotchy. Urine usually becomes much less. The person may seem unaware of what is happening, but hearing may still be present, so it is reasonable to speak gently and normally.
These changes can be confronting. They do not always mean the person is suffering. Ask the nurse, doctor or palliative care team what signs would suggest pain, breathlessness or distress in this person, especially if the person can no longer speak.
What care can help
Care usually focuses on comfort, dignity and avoiding treatments that add burden without real benefit. This may include careful mouth care, turning and positioning, skin care, continence care, pain relief, treating distress, and deciding whether antibiotics, hospital transfer, tube feeding or drips are likely to help.
These decisions should be guided by the person's own wishes where they are known. If the person has an advance care directive, advance care plan or appointed substitute decision-maker, tell the treating team. If family members disagree, it may help to read What happens if the family disagrees about treatment at the end of life?.
When to get help now
Contact the person's GP, nurse, aged care staff or palliative care team if there is new pain, distress, fever, repeated choking, breathing that looks frightening, a fall, a pressure injury, or a sudden change you do not understand.
If the person is expected to die at home, follow the written plan for who to call after hours. If there is no plan, ask for one before a crisis. Call 000 if there is a life-threatening emergency and you have not been told that this is an expected part of the person's end-of-life plan.
You may also want to read
- What does dying from frailty look like?
- Should children visit someone who is dying?
- Who decides when family members disagree about end-of-life care?