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. See Sources of support for more information.
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. See Sources of support for our information on creating a Life Story
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.
To speak to a dementia specialist Admiral Nurse for support with any aspect of dementia, please call our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email firstname.lastname@example.org.
If you would prefer a pre-booked phone or video appointment, please visit the Closer to home page.