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Keeping safe when you care for someone with dementia

Dementia can affect a person’s ability to manage their emotions and actions. At times of intense distress, they may become verbally or physically aggressive, putting them and those around them at risk of harm.

Factors that may lead to aggressive behaviour include:

  • feeling unwell or in pain
  • difficulty communicating
  • unmet needs, eg hunger, thirst, needing the toilet
  • changes in routine, eg holidays, family gatherings, new processes at work
  • difficulty empathising with other people and understanding their emotions
  • changes in or side effects of medication
  • environmental factors like loud noises, busy places
  • changes in perception, false beliefs and hallucinations, eg believing that someone is stealing from them
  • sundowning – a state of intense anxiety that typically occurs in the evening and often makes people believe they are in the wrong place and that they need to ‘go home’, even if they are already at home
  • other mental health issues or learning disabilities that cause difficulty regulating emotions
  • hormonal or mood changes associated with menopause
  • their own life experiences, eg if they have been a victim of violence themselves in the past
  • effects of alcohol

Learning to assess factors that may put you or the person with dementia at risk is an important skill. It is helpful to follow these steps:

1. Try to identify what causes the person distress. For example, are they prone to sundowning?

2. Consider who this might put at risk. This could be the person with dementia themselves, you, or other people around them.

3. Make a plan to reduce the risk. For example, to help prevent sundowning, you could close the curtains before dusk to ease the transition from day to night.

4. Put these changes in place. If necessary, seek help from others, such as other family members or the person’s GP or social worker.

5. Keep reassessing the risk. Reflect on any changes – for example, a new carer or a change in the person’s dementia symptoms.

  • Be aware of any physical health issues that may cause distress, such as pain, constipation or an infection
  • Consider whether the person is hungry or thirsty; tired; too hot or cold; bored; needs the toilet; is in discomfort from tight or irritating clothing; needs physical contact or intimacy
  • Check whether the person is taking any medication as prescribed, and consider booking a review with their GP
  • If they have difficulty communicating, look for ways to work around this, eg using pictures to show what you are talking about
  • If the person is in employment, encourage them to tell their employer about their diagnosis so support can be put in place to help prevent situations that might cause frustration
  • Be aware of possible triggers of distress, eg sensitive topics of conversation; anniversaries of difficult life events; seeing family members that they do not get on with
  • Where possible, remove things from the home that might trigger aggressive behaviour, such as mirrors – the person may see their own reflection and believe it is an intruder
  • Remove objects that might be used aggressively in the heat of the moment – for example, put knives and scissors away in a drawer rather than leaving them on the kitchen worktop
  • Try to maintain a calming, low stimulus atmosphere, especially if the person with dementia is feeling anxious
  • It is useful to complete a Herbert Protocol form – a record of important information about the person to help police locate them if they are missing
  • Aim to remain calm. Try not to mirror the person’s emotions or behaviour: for example, if they are shouting, speak in a low and steady tone
  • Put yourself on the person’s level – for example, if they sit down, you can sit down too. Avoid standing over them
  • Repeating a phrase like, “I’m sorry if I’ve upset you, but I am here to help” may help to calm them
  • Avoid confronting, correcting or arguing with the person
  • If you are standing, move an arm’s length away and turn slightly sideways to seem less threatening to the person. This will also minimise how much of your body they can reach and protect vulnerable areas
  • Keep your body language calm and non-confrontational, eg keep hand gestures to a minimum, and arms loose and ‘open’
  • Create a natural barrier between you, eg standing behind a table or on the opposite side of a bed – but try to keep a clear path between you and any exits
  • If you feel unsafe, go into another room, such as the bathroom, where you can lock the door and phone a friend/family member or the emergency services
  • If it is safe, give the person some space to calm down for 10 to 15 minutes
  • If the person’s distress is triggered by not recognising someone, it may help if the ‘stranger’ leaves the room
  • If the environment is causing distress, eg a noisy supermarket, move to a calmer place if possible
  • Avoid travelling in the car with the person until they are calm
  • If the person wants to leave the house, it is often best not to stop them in case you or they are hurt in the process. You can follow them at a safe distance or call for help from a neighbour, relative or friend or the emergency services

It is a good idea to put together a personal safety plan to use in situations where you feel at risk from the person with dementia.

  • Make sure you know where the exits from the building are; keep the pathway to the doors clear; and stand so you are closest to the door
  • Agree on a code word to use with family and friends if you’re in danger, such as ‘pineapple’, to save time explaining that you need help in a crisis
  • Keep a ‘go bag’ of useful items in case you need to leave in a hurry. Include a spare house key, phone charger, change of clothes, snacks and a drink, important contact numbers and medications
  • If you or anyone else feel at risk, call 999
  • Ensure that if anyone has been injured, they receive medical attention as required
  • Keep the environment calm and quiet
  • Give the person time and space to stabilise – this may take over 20 to 30 minutes
  • Keep your voice low and soothing, and your body language relaxed
  • Be aware that the person’s emotions may still be heightened, and that even minor triggers in the next few hours may inflame the situation again
  • Be reassuring – there is no benefit in reminding the person what happened or criticising their behaviour
  • Talk to your GP or other professional involved in the person’s care for advice. You can also speak to your local authority Safeguarding Team, who can help put plans in place to support the person with dementia and those around them
  • Consider whether the person’s caring abilities might put the child at risk – are they safe to be alone with them at home; drive them to school; go to the park; cook them a meal? Is there a risk of physical discipline or using inappropriate language?
  • Support the child to be open with you about what is happening
  • Speak to the child’s school – they can look for signs that they are struggling and put support in place
  • Ensure the child knows some basic, age-appropriate safety tips, like moving away from the person with dementia if they are frightened and going into a safe room
  • Be alert to signs of abuse or harm – these may be physical (eg bruises, grazes) or behavioural (eg tearfulness, anger, bedwetting). Speak to your GP or social worker for advice and support

Occasionally, the reactions of a person with dementia can tip over into domestic abuse or violence. This can be very difficult to talk about, but it is essential to get help, for example from the Admiral Nurse Dementia Helpline, your GP or domestic violence charities. Your local authority Adult Social Services Safeguarding Team can also offer support.

If you or anyone else feel at immediate risk, please call 999.

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