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Advanced Dementia and Deterioration

• Advanced dementia usually brings greater dependence, frailty, reduced communication, and higher risk of complications.
• Decline can be unpredictable. A person may deteriorate, stabilise, or improve temporarily.
• Signs of deterioration may include progressive weight loss, reduced intake, more fatigue, less mobility, more infections, and social withdrawal.
• Hospital admission decisions should balance possible benefit against harms such as delirium, disorientation, and loss of familiar surroundings.

Planning Ahead

• Advance care planning should be offered before crisis where possible and reviewed over time.
• Plans may include wishes, values, who should be involved, preferred place of care, and broader treatment preferences.
• DNACPR is about CPR only. It does not mean that other appropriate care, treatment, comfort measures, or escalation should stop.
• Capacity and incapacity law differs across the UK. In England and Wales, the Mental Capacity Act 2005 applies; Scotland and Northern Ireland use different legal frameworks.
• Family do not automatically make decisions just because they are relatives; lawful representatives and local legal processes must be respected.

Comfort Care

• Comfort care is active care. Pain, distress, dry mouth, poor positioning, pressure risk, and continence care all matter.
• Use observation as well as speech to notice pain or discomfort in people with limited communication.
• NICE recommends frequent mouth and lip care in the last days of life and supporting drinking if the person wishes and can manage safely.
• Escalate persistent symptoms or changes that may need clinical review.

Eating and Drinking

• Advanced dementia commonly affects appetite, energy, swallowing, and mealtime tolerance.
• Food and fluids should not be forced. Support should be safe, calm, dignified, and responsive to distress or swallowing difficulty.
• Escalate coughing, choking, recurrent chest infections, food pocketing, or other swallowing concerns.
• NICE advises considering speech and language therapy if there are safety concerns with eating and drinking.
• Enteral feeding should not be used routinely in severe dementia unless there is a potentially reversible comorbidity.

Last Days of Life and Family Support

• Possible signs of the last days of life include more sleeping, reduced intake, changes in breathing, mottled skin, fatigue, and less communication.
• Care should be individualised, regularly reviewed, and clearly communicated.
• Families often need repeated explanation, reassurance, and respect for cultural or spiritual needs.
• After death, staff should follow local policy for notification, documentation, personal care after death, belongings, and family communication.
• Support after death matters for both families and staff.