Restlessness and agitation in dementia

What is restlessness in dementia?

Restlessness – including fidgeting, pacing and trying to leave the house – is common in people with dementia.  It can be upsetting for the person, especially if they are prevented from moving around, and for those who care for the person, who worry about the person’s safety.

Pacing in people with dementia

Sometimes, the person with dementia may get up and start pacing if they are restless, which can be frustrating and upsetting for the person and their carer.

There are things that can be done to support someone with dementia who is pacing, this includes:

• allowing them to walk about, if it’s safe to do so
• safety-proofing their home to reduce the risk of falls and accidents
• trying to establish whether there is an unmet need that you could help with – for instance, they may have stood up to go to the toilet but have forgotten what they were doing
• if the person is in hospital or a care home, telling staff that they like to move around so they can be supported to do so safely

Someone with dementia wanting to leave the house

A particular worry can be when the person with dementia wants to leave their home. This may happen if:

• they are unaware of the risks of going out alone
• they are potentially feeling very anxious and are seeking comfort and a sense of safety
• they are confused about where they are in time – for example if they are retired but still think they need to go to work
• they are thinking about somewhere they used to live
• they experience ‘sundowning’ – a strong sense of being in the wrong place or needing to go home, even if they are at home, that typically becomes worse at dusk

What is agitation in someone with dementia?

In the context of dementia, agitation describes significant and often distressing behaviours that indicate restlessness, emotional upset, or a heightened arousal. It’s a common symptom in dementia and can show in various ways, depending on the person.

Verbal agitation in someone with dementia

Shouting, screaming, or using aggressive language are all signs of agitation. In the later stages of dementia, people may sometimes vocalise discomfort, frustration, or an inability to communicate needs through moaning and groaning.

Repetitive actions as a sign of agitation

Someone experiencing restlessness or agitation may find themselves repeating actions such as hand-wringing, tapping, rocking, or rubbing surfaces. These actions can be soothing to the person but may seem distressing to those around them.

Aggression in someone with dementia

Aggression refers to hostile behaviour directed either inward at oneself or outward at others or objects. Hitting, kicking, scratching, or biting the people around them is one example of aggressive behaviour in a person with dementia, and is often a response to feeling threatened, confused, or overwhelmed.

Some people who have dementia experience a growing sense of restlessness, agitation or anxiety in the evening, around dusk and the term sundowning is used to describe these changes in behaviour.

Sundowning often makes the person with dementia feel very strongly that they are in the wrong place. They might say they need to go home, even if they are at home, or that they need to pick the children up from school, even if they’re now adults. Other symptoms might include shouting or arguing, pacing, or becoming confused about who people are or what’s going on around them.

Agitation and restlessness at night

Some people who have dementia experience a growing sense of restlessness, agitation or anxiety in the evening, around dusk and the term sundowning is used to describe these changes in behaviour.

Sundowning often makes the person with dementia feel very strongly that they are in the wrong place. They might say they need to go home, even if they are at home, or that they need to pick the children up from school, even if they’re now adults. Other symptoms might include shouting or arguing, pacing, or becoming confused about who people are or what’s going on around them.

Why does restlessness and agitation occur for those living with dementia?

Several things may contribute to restlessness and agitation in people living with dementia. Changes in the brain can affect mood, behaviour, and cognitive function, which in turn leads to difficulties in:

• processing information, controlling emotions, and expressing needs
• environmental factors such as changes in lighting, volume, and social interactions in the evening
• psychological factors, including anxiety, fear, or loneliness
• underlying medical conditions which are causing pain, discomfort, or other medical issues
• difficulty communicating their needs; this can lead to frustration and restlessness

At what stage of dementia can restlessness and agitation occur?

Restlessness and agitation can occur at any stage, but they tend to become more pronounced as dementia progresses. The prevalence of these symptoms can vary depending on factors such as the type of dementia and the stage that the person is at.

Restless leg syndrome and dementia

Restless legs syndrome (RLS) is a condition that causes an irresistible urge to move the legs, often accompanied by uncomfortable sensations. It typically worsens in the evening or at night, and can disrupt sleep.

Some studies suggest a potential link between the condition and an increased risk of developing dementia but this may be because both conditions share risk factors, such as sleep deprivation. Another theory is that RLS may be a sign of underlying vascular disease, which can also increase the risk of dementia.

Agitation and restlessness in different types of dementia

Agitation and restlessness can manifest differently in different types of dementia.

In Alzheimer’s disease, people may show repetitive behaviours like pacing or fidgeting. They might also experience sundowning, where agitation worsens in the late afternoon or evening.

In vascular dementia, restlessness can stem from frustration because of struggles with cognitive abilities or physical limitations caused by the disease. Agitation may arise from sudden changes in the environment or routine.

People with Lewy body dementia are more likely to experience hallucinations, where they experience something that isn’t really happening, like hearing voices (auditory hallucinations) or seeing things that aren’t there (visual hallucinations).

Common triggers of restlessness and agitation in people with dementia

As cognitive abilities become more affected, people with dementia often struggle to process emotions, communicate their needs, or understand their surroundings. This can lead to feelings of fear, frustration, or confusion, which can manifest as restlessness or agitation.

Emotional triggers of restlessness and agitation

Some of the most common emotional triggers for restlessness and agitation are:

• feeling anxious, stressed or depressed
• separation from loved ones or being left alone
• boredom

Environmental triggers of restlessness and agitation

Causes of restlessness in a person with dementia linked to their environment may include:

• Needing to stretch their legs because they are spending a lot of time inside, sitting down which can cause frustration, especially if the person is younger and used to being active
• Being too hot or too cold
• Unfamiliar surroundings and time confusion from changes in environment, such as moving to a new care facility or even rearranging furniture, can cause fear and disorientation. Not knowing what time it is, or who the people around them are, can also cause significant distress
• Smells and sounds can cause distress, eg noise from roadworks or a strong cooking smell

Treatment for restlessness and agitation in people with dementia

Changes in environment

Simple changes to the environment around a person with dementia can be effective, such as removing any hazards to reduce anxiety, and encouraging free movement to help manage restlessness.

Reducing clutter and noise, which can be overwhelming, and making sure the area around the person is well lit but not overly bright can contribute to a calmer space. Playing soothing music or using aromatherapy with scents that aren’t overwhelming, such as lavender, can help, too.

Music

Research suggests that listening to music or singing songs can provide emotional and behavioural benefits for people living with dementia, and music therapy may be recommended. Musical memories are often preserved in dementia, when other types of memories are lost, because of the areas in the brain that are affected. In people living with dementia it can also have the effect of reducing agitation.

Art

Art can be a powerful way for people with dementia to not only express themselves but also stimulate their mind which can improve thinking ability.

Creative activities like painting can stimulate the brain and be particularly valuable in helping people living with dementia communicate in a non-verbal way when verbal communication is more difficult or lost. Similarly, painting and drawing can allow us to use our power of imagination, which can make people living with dementia feel more connected to the world and people around them.

Exercise

Exercise helps our brains not only by keeping the blood flowing but also by increasing certain chemicals that protect the brain. It tends to counter some of the natural reduction in brain connections that occurs with ageing. It also reduces the risk of heart disease and diabetes, strengthens bones and muscles, and reduces stress. While exercise for someone with dementia may need to be tailored to their needs and abilities, it’s important to keep them moving where possible.

Medication

Medication can be used to treat restlessness and agitation in dementia, but this approach is only typically considered only after non-pharmacological strategies have been tried first.

Antidepressants such as sertraline, citalopram, mirtazapine and trazodone are often prescribed to help combat changes in mood and behaviour, while anti-psychotics can be used in extreme cases to help with severe agitation, aggression, or psychosis.

Managing restlessness and agitation as a carer

As a carer, managing restlessness and agitation for someone with dementia can be challenging, but there are many techniques and strategies you can use to help improve the person’s comfort and well-being.

Techniques for calming someone who is restless or agitated

• Offer a drink and something to eat
• Ask if they need the toilet – or look for non-verbal signs like holding their stomach or crotch – and offer support if they need it
• Ensure they take any medication they are prescribed
• If they appear to be in pain, anxious or depressed, make an appointment with their GP
• Try to engage them in activities that provide enjoyment and a sense of purpose, like walking, gardening, crafts or puzzles
• Help them have a change of scene, even if you just go into another room or the garden
• If you are in unfamiliar surroundings, try to return to a place where they feel comfortable. If this isn’t possible, see if they can move to a calm, quiet space – eg a spare room in a house you are visiting
• Sitting close, holding their hand or stroking their arm can provide reassurance. A gentle hand massage can also be soothing
• Play music, read aloud, watch a film together or look at photos
• Give them something comforting to hold, like a cuddly toy or soft blanket

If someone with dementia leaves the house

It’s important to make a plan in case the person with dementia succeeds in leaving their home alone. For example:

• Talk to your neighbours about the situation, and exchange contact details
• Make sure the person always has their name and your contact details on them – you could sew an identity card into their coat or bag, or buy them an identity bracelet or necklace
• Complete a Herbert Protocol form – you can list information such as the person’s name and address, a physical description, health issues, communication difficulties, and significant places that they may try to visit. You should fill in the form in advance and, if the person goes missing, hand it to the police to assist in their search

Hunger and thirst

People with dementia may forget to eat or drink, or not recognise the signs of hunger or thirst. These tips might help:

• Offer smaller portions or snacks like ‘finger food’ if the person does not want to eat full meals or sit at the table
• Eat a snack or meal together as encouragement
• Make sure there is always a drink close at hand, and encourage them to take sips
• If the person does not like drinking water, provide squash or juice instead
• Keep caffeinated drinks to a minimum as these may increase restlessness
• In the later stages of dementia, when chewing and swallowing may be affected, use ice chips or artificial saliva to stop the person’s mouth becoming dry and uncomfortable

Sources of support

To speak to a dementia specialist Admiral Nurse about restlessness or any other 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), email helpline@dementiauk.org or you can also pre-book a phone or video appointment with an Admiral Nurse at a time to suit you.