Managing distress in a person living with dementia

It is quite common for people with dementia to become distressed at times, which can also be upsetting for family members and friends to witness. However, there are ways to reassure them and help them feel calmer. On this page, our dementia specialist Admiral Nurses explore the signs of distress, as well as calming techniques and the that may be support available.

What is distress?

Distress occurs when a person is suffering emotionally or physically, leading to them having difficulty coping and often reacting in a way that is not typical of their behaviour.

Signs of distress

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• become withdrawn or uncommunicative

Common causes of distress

Environmental causes of distress

If the person with dementia is in a place they are unfamiliar with, for example, if they have to stay in hospital, the change in environment may cause distress. They may also become distressed in familiar environments. For example, they may not recognise their own home; may be recalling a different house, such as one from their childhood, and believe they should be there; or may not recognise their belongings as their own.

Emotional causes of distress

It is often believed that people with dementia cannot experience anxiety or depression, but this is not the case. However, in the later stages, they may be unable to communicate these feelings, leading to greater distress.

Pain and discomfort

When someone with dementia is experiencing pain or discomfort, difficulties with communication may mean that they can’t express specifically what is wrong. This may mean other people don’t know how to help them, increasing their distress.

People with dementia often have difficulties problem-solving, which means they are less able to manage their own pain. For example, the person may have previously recognised the need to take a painkiller but now no longer be able to identify this need or take one independently.

The person may have been managing chronic pain for years in their own ways, such as by resting or using a heat pad, but now be unable to do these things themselves.

In addition, people with dementia may feel pain differently, perhaps in heightened ways, or not be able to identify that they are in pain, leading to increased distress.

Sensory overstimulation

Sensory overstimulation, such as loud noise, strong smells, or particular sensations against their skin, can cause the person with dementia to become distressed.

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.

Sundowning

Sundowning is when a person with dementia feels more anxious, confused and distressed, often happening in the evening. They may believe they need to get home at a specific time to look after children who are now adults, or they need to go to work, even if they are retired.

Memories

People who have experienced traumatic events like war, terrorism or a serious accident might relive these situations as their dementia progresses. This could cause significant distress, especially if they can’t explain how they are feeling to other people.

Calming techniques for someone with dementia who is distressed

While it can be hard to know what to do when a person with dementia is distressed, there are ways to help them feel calmer and reassured that they are safe and well.

Identify the cause of distress

Understanding what has upset the person with dementia can help you identify ways to soothe their distress and anxiety. If possible, ask what is upsetting them. If they answer, listen attentively, even if they are confused.

You can also look for clues in their behaviour. For example, if they are covering their face they may be feeling overwhelmed by sensory stimulation in their environment, or if they are holding a particular part of their body, they may have pain in that area.

How to communicate with someone living with dementia who is distressed

Use a soft, steady tone of voice and try to maintain gentle eye contact to encourage the person to communicate what is causing their distress, verbally or non-verbally. Keep your voice calm and reassuring, and put yourself on their level if you can (for example, if they are sitting, sit with them rather than standing over them).

Acknowledging and validating the person’s emotions can be very powerful and show them you empathise with how they are feeling. If they are upset about something they think you have done, apologising can be helpful, even if they have misinterpreted your words or actions.

Try not to challenge the person’s reality, as disagreeing or arguing could increase their distress. Instead, use calming phrases (for example, “I can see you’re upset because you want to go home”) and try redirecting the conversation or using distraction, such as playing music that they like or going for a walk.

Read our tips for communicating with a person with dementia.

Physical comforting

For some people with dementia, physical touch can be comforting and calming. That could be holding their hand or rubbing their back, or simply sitting with them and being a reassuring physical presence.

Calming breathing techniques

Encourage the person to take deep breaths. Talk them through each step, and breathe together until they are calmer. The NHS suggests a breathing technique for stress that the person may be able to follow with support.

Calming music

Playing music that the person enjoys, or has enjoyed in the past, may help to calm them, as well as providing a distraction, and a way to communicate if they choose to sing along or move to the music. If you’re unclear what music they like, try starting with some soft classical music, or music from their era.

Engaging activities

Supporting the person with dementia to engage in activities to distract them from their distress can be helpful, such as watching a film that they enjoy, taking part in arts and crafts such as painting or drawing, singing or doing a jigsaw.

Activities do not need to be formal or organised; even things like helping with household tasks may be within the person’s capabilities and provide a distraction. The aim is not to have the task completed perfectly, but to engage the person and give them a sense of purpose.

Encouraging the person to participate in these activities can also help to prevent distress, as well as relieving it when it occurs, by giving them a sense of purpose and inclusion.

Change of scene

Sometimes getting out and about and providing a change of scene can be helpful. This could include visiting family and friends, woodland walks or going to places that trigger happy memories.

Bear in mind, though, that a person who is in distress may feel the need to be in a familiar environment. If this is the case, just going into the garden or another room in their own home might be more helpful than going out.

What not to do

If the person with dementia is distressed, try not to raise your voice or get angry. If you need a break, take a minute for yourself. This might involve going into another room for a moment if it’s safe to leave the person.

Try not to correct the person if they have a mistaken belief; instead, validate their feelings, make them feel safe and comfort them, as they may not be able to see a situation rationally if they are in distress.

How to manage aggression and resistance as a carer

At times, a person with dementia may act aggressively, whether by swearing, shouting or lashing out. There are a number of ways that you can manage aggression and resistance, including:

• Remaining calm and trying not to mirror the person’s emotions or behaviour: for example, if they are shouting, speak in a low and steady tone
• Repeating a phrase like, “I’m sorry if I’ve upset you, but I am here to help”
• If the environment is causing distress, eg a noisy supermarket, moving to a calmer place if possible

If you feel unsafe, go into another room, such as the bathroom, where you can lock the door and phone a family member or friend for help, or the emergency services if you feel there is an immediate or severe threat to your safety. Read about keeping safe when you care for someone with dementia.

Can medication be used to calm someone with dementia?

In some cases, medication may be used to help a person with dementia who is in distress. These include a medication called memantine, which is prescribed for some people with Alzheimer’s disease, antidepressants or antipsychotics.

However, antipsychotic medication in particular should be used as a last resort to reduce distress in dementia. It should only be considered if all other strategies have been tried without success. Medications to minimise distress can cause side effects (drowsiness, increased risk of falls, increased risk of stroke) and may worsen the symptoms of some forms of dementia.

If you believe the person with dementia would benefit from medication to ease their distress, please speak to their specialist or GP.

How to minimise distress for people living with dementia

While distress is common in people who are living with dementia, steps can be taken to help reduce the risk.

Create consistent routines

Try to maintain a daily routine so things happen at predictable times. Explain to the person what will be happening throughout the day, and try to keep routines consistent, with as little disruption as possible.

Create a calm and supportive environment

Small touches such as using soft or natural lighting, reducing excessive noise and ensuring the person is surrounded by familiar and reassuring objects like family photos can create a peaceful environment.

Minimise potential triggers

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.

In day-to-day life, try to give the person information in small, easily digestible 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).

Use memory aids

Using memory aids can reduce frustration in a person with dementia; help them stay independent for longer as they are less reliant on others for daily tasks; and help fulfil their mental and physical needs (for example, by reminding them when they need to eat and drink).

Memory aids could include:

• a dementia clock that shows the date, time and time of day (morning, lunchtime, afternoon etc)
• a diary, calendar, planner or whiteboard to record appointments and events
• a medication reminder box
• smart devices such as Alexa, which can be programmed to remind the person to do things like take medication or have a drink
• signs placed around the home to show where items are located and what to do, eg signs on kitchen cupboards explaining what is inside, or a sign beside the front door, reminding the person to lock up when leaving

Supporting the person with dementia to remain independent and have some control over day-to-day life is a good way of preventing distress.

Communicate with loved ones

Explain the situation to the people around you, so they know not to drop in at unexpected times or take the person out unexpectedly. You can also ensure they understand any specific triggers and know what to do if the person becomes distressed.

The role of family and carers

Family and carers often know the person best. By working together, it may be possible to understand what may be a potential trigger for them, particularly memories of experiences from their past. It is also possible to learn what gives the person joy and happiness, which may help to prevent or overcome feelings of distress.

Do not underestimate the power of being a soothing presence for someone who is distressed. Just knowing that you or another close family member or friend is there could help the person feel less vulnerable and afraid.

Calming techniques for you

If the person with dementia is unable to be calmed, resisting help or says something upsetting, take five or 10 seconds to collect your thoughts. You can follow the steps below:

• Take a deep breath in and tense your jaw, shoulders and arms
• Hold your breath for two or three seconds
• Then 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

You may need to repeat this several times.

When to seek further support

When you’re concerned about someone living with dementia

If you are concerned about changes in the person’s behaviour or increasing distress, book an appointment with their GP to check if there are any underlying causes, like pain or an infection.

When you feel you can’t cope as a carer

If you are struggling and feeling that you can’t cope as a carer, it’s important to talk to someone, whether that is a family member or friend, your GP or a counsellor. View our resources on how to look after yourself as a carer.