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Coping with distress

It is quite common for people with dementia to become distressed at times, which can also be upsetting for family members and friends – but there are ways to comfort them and help them feel calmer. 

When a person with dementia becomes distressed, they might:

  • shout
  • cry
  • groan
  • use offensive language
  • call out for someone
  • ask to go home (sometimes even if they are already at home)
  • behave aggressively
  • appear agitated – eg pacing, fidgeting or trying to leave the house
  • become withdrawn or uncommunicative

If someone with dementia is distressed, it is often because they are trying to communicate something that they are unable to express. Possible causes include:

Feeling disorientated or frightened – for example, the person may not recognise the place that they are in as their home, or might believe someone is trying to harm them.

Feeling anxious or depressed – it is often believed that people with dementia cannot experience anxiety or depression, but this is not the case. However, they may be unable to express these feelings, leading to greater distress.

Unmet needs – the person might be hungry or thirsty, or too hot or cold. They might be in pain, need the toilet, want to stretch their legs, or be feeling bored.

Changes in routine such as a hospital appointment, a family gathering, or visitors to their home.

Sundowning – this is where a person with dementia feels more confused and distressed in the evening.

Past life events – people who have experienced traumatic events like war, terrorism or a serious accident might relive these situations as their dementia progresses.

  • Try to maintain a daily routine so things happen at predictable times
  • Explain the situation to the people around you, so they know not to drop in at unexpected times or take the person out unexpectedly
  • Give the person information in easy to digest nuggets, and in a timely manner. For example, if you are going out, some advance notice may help them feel prepared (although some people feel more anxious if they are told in advance of a change to their routine, so be guided by your knowledge of the person)
  • Allow plenty of time to leave the house and get to your destination
  • Try to pre-empt their needs, eg by offering a drink or asking if they need the toilet at set intervals
  • Find out about the person’s life history – if they have specific trauma triggers, you can try to avoid these, or offer extra support if they are unavoidable

As a family member or friend of the person with dementia, you are often the best person to offer reassurance. If they do become distressed:

  • Try to identify the cause of their distress
  • If possible, ask what is upsetting them. If they answer, listen attentively, even if they are confused
  • Try to remain calm. If the person with dementia says something upsetting, take five or 10 seconds to collect your thoughts before you reply
  • Use a calm, steady tone of voice
  • Try to maintain eye contact
  • Try to keep their environment calm to avoid overstimulation
  • Look for physical signs of distress – for example, holding their crotch may mean they need the toilet
  • Give the person a hug or sit with them and hold their hand
  • Play their favourite film or music
  • Offer them a cup of tea and something to eat
  • Go into a different room together or into the garden for a change of scene
  • If they are distressed by a change in routine, calmly explain what is happening

Sometimes, it might seem like the more you try to calm the person down, the more distressed they become. It can help to acknowledge that they are upset and then give them some space – perhaps go into a different room for five minutes if it is safe and appropriate to do so.

This breathing technique may help if you are feeling stressed. It is designed to give you a moment to distance yourself from the situation before helping you come back to the here and now.

The person with dementia might also find this calming. You could try talking them through it.

  • Take a deep breath in and tense your jaw, shoulders and arms
  • Hold the breath for two or three seconds
  • Let the breath go, relaxing your jaw, shoulders and arms
  • As you exhale, mentally say a soothing word to yourself, such as ‘relax’ or ‘calm’
  • Let your arms, shoulders and jaw go limp and loose

To speak to a dementia specialist Admiral Nurse for support with any aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org or you can pre-book phone or video appointment with an Admiral Nurse.

Call the Dementia UK Helpline

Our free, confidential Dementia Helpline is staffed by our dementia specialist Admiral Nurses who provide information, advice and support with any aspect of dementia.

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