Alzheimer's Society

Many people with dementia feel compelled to walk about or leave their homes. This can be worrying for those around them, and can at times put the person in danger. But it is important to find a solution that preserves the person's independence and dignity.

It can be very troubling when a person with dementia starts to walk about in what may appear to be an aimless way. They might get up and leave the house in the middle of the night, or they might knock on the neighbours' doors at inconvenient times of the day. People with dementia can often experience problems with orientation, which may cause difficulties in finding their way home. This can make their loved ones feel very anxious and concerned for the person's safety.

It can be reassuring to know that this type of behaviour does not last - it seems to be a phase of the condition that some people go through. In addition, most people with dementia retain their road sense and are rarely involved in traffic accidents.

Why might people walk about?

The first thing to consider is why the person might be doing this. Once you identify what the person is trying to achieve, you can start to find ways to meet their needs, thus reducing frustration and helping to retain independence. There could be a number of reasons for their walking:

• continuing a habit
• relieving boredom
• using up energy
• relieving pain and discomfort
• responding to anxiety
• feeling lost
• memory loss
• searching for the past
• seeking fulfilment
• getting confused about time.

Continuing a habit

If the person has enjoyed walking in the past, they will naturally want to continue doing this. Try to make this possible for as long as you can. If you are unable to accompany the person yourself, you may be able to enlist the help of relatives or friends. Local volunteer centres can be very helpful.

Relieving boredom

People often walk about if they are bored. Many people with dementia simply do not have enough to do. Being occupied brings with it a sense of purpose and self-worth for everyone - and people with dementia are no exception. Try to find ways to keep the person mentally engaged and physically active, whether through playing games or involving them in your daily chores and tasks or hobbies.

Using up energy

Constant walking may also indicate that the person with dementia has energy to spare and feels the need for more regular exercise. There are many simple ways to incorporate more exercise into your normal life without making big lifestyle changes - for example, walking to the shops rather than driving, walking up steps rather than using the escalator, or even doing some gardening or vigorous housework. Try to enable the person to leave the house to get some fresh air at least once a day if you can.

Relieving pain and discomfort

People often walk when they are in pain, in an attempt to ease their discomfort. In the case of arthritic or rheumatic pain, walking can actually help. Alternatively, people may be trying to 'escape' from the pain. If you think this might be the case, ask the person's GP to examine them. The need to walk can also be a side-effect of certain medication. Again, ask their GP to check their prescription to see if this could be causing the person to feel restless.

Responding to anxiety

Some people walk about if they are very agitated or anxious. They may also be responding to hallucinations or issues with visual perception, which are a common symptom of some types of dementia. Try to encourage the person to tell you about their anxieties, and reassure them in whatever way you can.

Feeling lost

If the person has recently moved home, or if they are going to a new day centre or having residential respite care, they may feel uncertain about their new environment. They may need extra help in finding their way about. They may also be more confused about the geography of their own home when they return.

This disorientation might disappear once they become familiar with their new surroundings. However, as the dementia progresses, the person may fail to recognise familiar surroundings, and they may even feel that their own home is a strange place.

Memory loss

Short-term memory loss can lead a person with dementia to go walking and become confused. They might embark on a journey for a specific purpose, with a particular goal in mind, and then forget where they were going and find themselves lost. This can be particularly distressing.

Alternatively, they may forget that their carer has told them that they are going out, and will set out to look for them. This may lead to extreme anxiety, and they will need plenty of reassurance. In the earlier stages, it can help if the carer writes notes reminding the person where they have gone and when they will be back. These should be fastened securely in a place where the person will see them, such as near the kettle or on the inside of the front door.

Searching for the past

As the person's dementia progresses, they may set out to search for someone or something related to their past. Encourage them to talk about this, and show them that you take their feelings seriously. Try to avoid 'correcting' things that the person may say. It is important to focus on what the person is feeling rather than the factual accuracy of what they say.

Seeking fulfilment

The person with dementia may walk because they feel they need to carry out a certain activity. It may be a task that they have carried out in the past - for example, they may think they have to collect their children from school, or that they have to go to work. This may be a sign that they are feeling unfulfilled. Try to help them find an activity that gives them a sense of purpose, such as helping out around the home.

Getting confused about time

People with dementia often become confused about the time. They may wake in the middle of the night and get dressed, ready for the next day. This confusion is easy to understand, especially in the winter when we often go to bed in the dark and get up in the dark.

Retaining independence

It is very important that people with dementia are encouraged to remain independent for as long as possible. Some degree of risk is inevitable whatever choices are made. Those caring for the person need to decide what level of risk is acceptable in order to maintain their quality of life and protect their independence and dignity.

What steps you take to safeguard the person will depend on how well they are able to cope, and the possible reasons for their behaviour. You will also need to take the safety of the person's environment into account. There is no such thing as a risk-free environment, but some places are safer than others. Does the person live on a busy main road or in an urban area where people don't know their neighbours? Does the person live in a peaceful rural area where they are well known within the local community?

Try to provide more daytime activities that help the person use up their energy, or perhaps persuade the person to go to bed earlier. It can help to buy a clock that shows am and pm, and keep it by their bedside. Some clocks also show the day of the week and the date. (See also Factsheet 437, Assistive technology) However, if the person's body clock is seriously out of step, you may need to seek professional help.

What can I do?

Tips: should I stop the person from leaving the house?

• Some family carers decide to lock or bolt doors to prevent the person with dementia from leaving the house. If you decide that you have to do this, try to do it as little as possible. Be aware of the risk of fire and make sure any locks or bolts are easy for you to operate.
• Avoid medicating the person to prevent them from walking away. Doses that are sufficiently powerful to stop someone from walking about can cause drowsiness, increase confusion and possibly cause incontinence.
• Some carers have found that placing a mirror in the hall, or fixing a bead curtain across the front door, can deter the person from leaving. However, this approach may be confusing or distressing for the person with dementia. Do contact your local branch for advice on this subject.

Tips: limiting the risks

• If the person is determined to leave, try not to confront them, as this could be upsetting. Try to accompany them a little way and then divert their attention so that you both return.
• Make sure the person carries some form of identification or the name and phone number of someone who can be contacted if they get lost. You could sew this into a jacket or a handbag so that it is not easily removed. Consider identification bracelets like those provided by medic alert (see Useful organisations.)
• Tell local shopkeepers and neighbours about the person's dementia - they may offer to keep a look out.
• If the person is in day care, respite residential care or long-term care, tell the staff about their walking habits and ask about the policy of the home.

Tips: if the person disappears

• Try not to panic.
• If you are unable to find the person, tell the local police. Keep a recent photograph, to help the police identify them.
• When the person returns, try not to scold them or show them that you are worried. If they have got lost, they may be feeling anxious themselves. Reassure them, and quickly get them back into a familiar routine.
• Once the situation is resolved, try to relax. Phone a family member or friend and talk about your feelings.
• Remember that this type of behaviour may be a phase, and that if you can take the time to understand what the person's needs are, this can often resolve the problem.

Your local Alzheimer's Society branch will always be willing to talk to you and offer advice and information to support your needs.

For more information, Dementia Catalogue, our specialist dementia information resources is available on the website at alzheimers.org.uk/factsheets

Useful organisations

Alzheimer's Society

Devon House
58 St Katharine's Way
London
E1W 1JX

T 020 7423 3500
E info@alzheimers.org.uk
W alzheimers.org.uk

MedicAlert

1 Bridge Wharf
156 Caledonian Road
London
N1 9UU

Freephone 0800 581420
T 020 7833 3034
F 020 7278 0647
E info@medicalert.org.uk
W http://www.medicalert.org.uk/

Factsheet 501

Last updated: April 2008
Last reviewed: April 2008
Reviewed by: Cathy Baldwin, Dementia Learning and Development Adviser, Alzheimer's Society.