My relative has dementia, how can I help to find them if they go missing?

Many people with dementia feel compelled to walk about and may leave their homes. Walking is not a problem in itself – it can help to relieve stress and boredom and can provide exercise.

However, it can be worrying for those around the person and may at times put the person in danger. It is important to find a solution that preserves the person's independence and dignity. This fact-sheet explains some of the reasons why a person with dementia may walk about and looks at what you can do to help.

It can be very troubling when a person with dementia starts to walk about for what appears to be no reason. This type of behaviour is often referred to as 'wandering'. However, this term is unhelpful because it suggests aimlessness, whereas the walking about often does have a purpose. The person might walk repeatedly around the house, or get up and leave the house at any time of day or night.

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.

Why might people walk about?

There could be a number of reasons why a person with dementia walks around. Once you identify what the person is trying to achieve, you can start to find ways to meet their needs. This should reduce your frustration and help the person to retain their independence. It may help to keep a journal for a couple of weeks to help identify any triggers.

Possible reasons include:

  • 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 the time.

Continuing a habit

If the person has enjoyed walking in the past, they will naturally want to continue doing this. You may find that they want to walk more at particular times of day, for example at times when they might have gone to work or collected children from school. 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.

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. See the Alzheimer's Society fact-sheet Staying involved and active.

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, using a rocking chair or exercise bike, 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. See the Alzheimer's Society fact-sheet Exercise and physical activity for people with dementia for more information.

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.

There is also a medical condition called 'restless leg syndrome' which causes an overwhelming, irresistible urge to move the legs to prevent unpleasant sensations – mostly at night. This condition is fairly common and can lead to people getting up and walking about during the night. If restless leg syndrome is suspected, the person should visit their GP.

Other sources of possible discomfort include needing the toilet, and ill-fitting shoesclothing or dentures. The person may also be responding to an uncomfortable environment. For example, it may be too hot or too cold, or there may be unpleasant lighting, noises or smells. You may need to go through a process of trial and error in order to work out a cause of restlessness. For example, if helping the person to find the toilet does not help, try adjusting the heating or ventilation, and so on.

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 new surroundings. In this situation it may help to show the person familiar items, such as photographs or clothing, in order to indicate that they belong in a new place.

They may need extra help in finding their way about. They may also be more confused about the layout of their own home when they return. This disorientation might disappear once they become familiar with their new environment. 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. The person could also be searching for something that they have lost or think is lost. Keeping personal possessions on view may help prevent this.

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. For example, if the person is looking for their mother, ask them what they miss about her and maybe bring out some old photographs. This may help meet their emotional need.

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 the 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 it is common to go to bed in the dark and get up in the dark.

It can help to buy a large clock that shows am and pm, and keep it by the person's bedside. Some clocks also show the day of the week and the date. (See Alzheimer's Society fact-sheet Assistive technology – devices to help with everyday living.) However, if the person's body clock is seriously out of step, you may need to seek professional help.

If night time walking is a particular issue, the person may be having sleeping difficulties, which are common in older people and particularly common in people with dementia. Simple measures that may help include avoiding daytime napping and avoiding caffeinated drinks in the evening or late at night. Drinking alcohol, smoking or eating a large meal should also be avoided near bedtime. If nightmares or vivid dreams are a problem and the person takes their dementia medication at night, they could try taking it in the morning instead. Exercise and some complementary therapies may also be helpful (see the Alzheimer's Society fact-sheets Exercise and physical activity for people with dementia and Complementary and alternative therapies and dementia).

Responding to anxiety

Some people walk about if they are agitated, stressed or anxious. This may be a response to the issues noted above. Less commonly, the person may be responding to hallucinations or issues with visual perception, which are a more common symptom of some types of dementia (see the Alzheimer's Society fact-sheet Visuoperceptual difficulties and hallucinations in dementia). Try to encourage the person to tell you about their anxieties, and reassure them in whatever way you can.

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.

The steps that you need to take to keep the person safe 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, or do they live in a peaceful rural area where they are well known within the local community?

What can I do?

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

If a person with dementia wants to walk then you should try to find a solution that lets them do so safely. You may be able to get help with this through a community care assessment or through a local service that helps people with dementia to take part in leisure activities. Alzheimer's Society provides leisure and well-being services in some areas.

Some family carers decide to lock or bolt doors to prevent the person with dementia from leaving the house. It is important to remember that you should never lock a person with dementia in the home if they are alone.

If the person is not alone but you feel that they should be locked in to prevent them from leaving, this can only be done if you believe that the person is unable to make a decision for themselves about the dangers of leaving the house. The decision must also be in the best interests of the person (and that you are not doing it just to make things easier for someone else). It must also be the least restrictive option available for keeping the person safe. You should discuss this issue with any other people who are involved in their care, such as a community nurse or other family members. Whatever decision you make you must be sure you are not putting the person with dementia at any kind of risk. For more information on making decisions on behalf of someone else, see the Alzheimer's Society fact-sheet Mental Capacity Act 2005.

Less restrictive options than locking doors include distracting the person, or deterring them from leaving by fixing a bead curtain across the front door or painting the door the same colour as the surrounding walls. However, these approaches do not suit everyone and may be confusing or distressing for the person. If there are outside lights it may be helpful to switch them off at night.

Do not use medication, such as sleeping tablets, to prevent the person from getting up at night or walking away. Doses that are sufficiently powerful to stop someone from walking about can cause drowsiness, falls, increase confusion, worsen memory problems and possibly cause incontinence.

If you do decide that you have to lock the person in, make sure you have a plan to help them if they become upset and want to leave. Be aware of the risk of fire and make sure any locks or bolts are easy for you to operate.

Tips: limiting the risks

  • If there is a garden, consider making it secure so that the person can walk outside safely. Having a circular path with points of interest, such as bird feeders and garden ornaments, can make the experience more enjoyable for the person.
  • If the person is determined to leave, try not to confront them, as this could be upsetting. Try to get them to put on appropriate clothing (e.g. outdoor shoes and a coat) and accompany them a little way and then divert their attention so that you can 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 MedicAlert (see 'Useful organisations').
  • If the person uses a mobile phone, ensure that the phone number of the primary carer is stored in it and is easily accessible. If the mobile phone is switched on it may be possible to trace the person if they go missing. Specialist tracking devices are also available. (See the Alzheimer's Society fact-sheet Assistive technology – devices to help with everyday living.)
  • Tell local shopkeepers and neighbours about the person's dementia and give them your contact details – they may be able 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 if you need to talk about how you are feeling.
  • 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.

For details of Alzheimer's Society services in your area, visit The Alzheimer's Society website where there are a wide range of fact-sheets available to assist you.

(Source : The Alzheimer's Society)

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