Sundowning and dementia behaviour changes in later stages

1. Treat a change as communication

The person might be in pain, frightened, tired, bored, too hot or cold, struggling to understand a request, or reacting to noise, unfamiliar surroundings or a rushed routine. Ask what happened just before and what they might be trying to do. Note the time, place, activity, people present and what seemed to calm or worsen things. Look for patterns without judging the person. Their history, preferences, language, culture and privacy should guide the response.

2. Check first for health problems and delirium

Pain, infection, constipation, dehydration, a full bladder, poor sleep or a medicine change can make someone more confused or distressed. The person may be unable to describe a symptom clearly, so notice changes in eating, movement, facial expression, continence, temperature or alertness and contact their GP or clinical team. Sudden confusion or a marked change over a short time may be delirium, which can be serious and needs urgent assessment. Read [[sudden-confusion-and-delirium|sudden confusion and delirium]] for what to look for and how to seek help. Do not assume that a new problem is simply the dementia progressing.

3. Respond gently to agitation, repeated questions and sundowning

A calm voice, familiar activity and fewer demands can help. Repeated questions may be an attempt to feel safe; answer simply, offer reassurance and consider the underlying worry or need. Avoid arguing about a belief or correcting the person in a way that increases distress. Some people become more unsettled later in the day, sometimes called sundowning. Check light, noise, fatigue, hunger, discomfort and routine. For broken sleep, note naps, pain and medicine timing; ask the GP about ongoing problems rather than trying a sedative. If agitation continues, ask the GP or dementia team to review.

4. Understand hallucinations and misperceptions

A person may see, hear or interpret something differently from those around them. The experience can feel real and frightening to them. Listen to what they say, acknowledge their feeling, check the surroundings and offer calm company or a change of focus. Avoid dismissing or reinforcing a frightening explanation. Shadows, reflections, patterned surfaces, hearing difficulty, eyesight changes and unfamiliar sounds can contribute to misperceptions, so check lighting, glasses and hearing support. New hallucinations or distressing episodes deserve a health review, especially if they begin suddenly or coincide with illness or a medicine change.

5. Plan for walking about and the possibility of getting lost

Walking can meet a need for movement, purpose, reassurance or a familiar place. Try to understand why and offer a safe route, accompanied walk, meaningful task or comfortable space. Agree who to contact if the person does not return, and keep a recent photograph and useful information ready. Where a local force uses the Herbert Protocol, complete its form with the person’s consent if possible; police can use the details if they go missing. Contact police promptly, and avoid restricting movement without a considered safety plan.

6. Ask about medicines carefully and plan for later-stage needs

NHS guidance says antipsychotic medicines may be considered for persistent aggression or extreme distress where there is risk of harm, after other approaches. Ask the prescriber what symptom is being treated, what side effects to watch for, the intended duration and review date. Later, a person may need help with mobility, washing, eating, drinking, swallowing and expressing needs through words or gestures. Ask the GP or dementia team about speech and language therapy, nutrition, pain, equipment and care support. Discuss future wishes while the person can take part, including who should help make decisions and what brings comfort.

7. Make support sustainable for the person and carer

Caring can become exhausting, especially when nights are broken or changes are hard to explain. Tell the GP, social-care team or dementia service what is happening and ask for a carer’s assessment or review of the person’s support. Agree who can step in, what information they need and what counts as an emergency. Dementia UK’s Admiral Nurse Dementia Helpline offers specialist, confidential advice on 0800 888 6678. [[communicating-with-dementia|Communication strategies]] and [[living-well-after-dementia-diagnosis|living well after diagnosis]] may help with daily choices while keeping the person’s identity central.

Common questions