Unusual behaviour

People with dementia sometimes behave in ways that others find puzzling or difficult to handle. This advice sheet looks at a number of different behaviours and suggests ways of coping. Not everyone with dementia will be affected.

Each person with dementia is an individual with different needs so there is no best way of dealing with a particular behaviour. It may help to try out a number of approaches if the person is unable to tell you how they are feeling. Ask for advice from professionals or other carers before you become too stressed.

Try to remember that the person you are caring for is not being deliberately difficult and make sure you have support for yourself and breaks whenever you can.

Repetition

Repetitive questioning

The person with dementia may ask the same question over and over again. They probably do not remember asking the question or the answer you gave because of their short-term memory loss. Feelings of insecurity or anxiety about their ability to cope may also play a part in repetitive questioning.

• Try to be tactful when answering. Don't say "I have just told you that", as this will increase feelings of anxiety.
• Try to get them to find the answer for themselves if possible. For example: Is it lunch time? Have a look at the clock ; Do we need more milk? Why don't you look in the fridge?
• Try to distract them with an activity.
• Make an excuse to leave the room for a while if you cannot contain your irritation.

People with dementia often become anxious about future events and this can lead to repetitive questioning. If this seems to be the case tell them that someone is coming to visit, or that you are going shopping, for example, just before it happens. This means that they will have less time to worry.

Repetitive phrases and movements

Sometimes people with dementia repeat the same phrase or movement many times. You may hear this referred to as preservation .

• It may be due to some kind of discomfort. Check that they are not too hot or cold, thirsty or constipated. Contact the GP if there is any possibility they are ill, in pain or adversely affected by any medication.
• They may be finding their surroundings too noisy or stressful.
• They may be bored and trying to stimulate themselves. Try to encourage an activity such as stroking a pet or going for a gentle walk.
• It may be their way of soothing themselves or due to the damage that has occurred in the brain. Simply offer as much reassurance as you can.

Repetitive behaviour

You may find that the person seems to be constantly doing the same thing such as packing and unpacking a bag or rearranging the chairs in the room.

• The behaviour may relate to a former activity such as travelling, organising an office or entertaining. If you can work out what this activity might be it may help you to feel more understanding and may also serve as the basis for conversation.
• The person may be bored and may need more stimulating activities or more contact with people.

Trailing and checking

The person may constantly follow you or call to check where you are. Loss of a sense of time may mean that a few moments may seem like hours and they feel insecure.

• Try not to speak sharply. This will only increase anxiety. Try to make sure you have some time to yourself.
• Provide the person with an activity while you are busy with something else. Sometimes a pet or even a familiar stuffed animal or doll can be reassuring.
• It may be reassuring if the person can hear you sing or hear your radio if you are in another room.

Shouting and screaming

The person may call out for someone continuously or shout the same word or scream or wail. There may be a number of different reasons for this behaviour.

• They may be in pain or ill or they may be experiencing hallucinations. If any of these possibilities seem likely consult the GP.
• They may be lonely or distressed. If they shout out at night, a night light may be reassuring.
• They may be anxious because of their failing memory. Try to reassure or distract. If they are calling for someone from their past, then talking to them about the past may be helpful.
• They may be bored. Listening to music or a gentle hand massage may help.
• There may be too much noise and bustle for them to cope and they may need a quieter environment.
• It may be the result of brain damage due to dementia. Ask your GP to refer you to a specialist if you think this may be the case.

Laughing and crying

The person with dementia may laugh or cry uncontrollably for no apparent reason.

• Inappropriate laughing or crying may be associated with hallucinations or delusions. If you think this may be the case consult the GP.
• This may be due to the effects of brain damage and is more common among people who have vascular dementia. It does not necessarily mean that the person is very sad or very happy. They may prefer you to ignore these episodes or they may respond to reassurance.

Lack of inhibition

The person may behave in a way that others find embarrassing due to their failing memory and general confusion. In a few cases it may be because of specific damage to the brain. Try to react calmly.

• Undressing or appearing naked in public may simply indicate that they have forgotten when it is appropriate to remove their clothes. Take them some where private and check whether they are too hot or uncomfortable or whether they want to use the toilet or sleep, for example.
• Lifting a skirt or fiddling with flies may be a sign that they want to use the toilet.
• If the person does start to stroke their genitals in public gently discourage them or take them to their own room.
• If they make inappropriate sexual advances, gently discourage them and try to distract their attention. If such advances are frequent and persistent seek advice from the GP.
• If the person behaves rudely for example, by insulting people or by swearing or spitting do not attempt to argue or correct them. Try to distract their attention. You can explain later that their behaviour is due to dementia and not intended personally.

Pacing

People with dementia may pace up and down within a room for a number of reasons:

• They may be hungry or thirsty or constipated or simply want to use the toilet and be unable to tell you. Check on these kinds of possibilities.
• They may feel ill or they may be suffering the side-effects of certain medicines. If you suspect that it may be due to any of these causes contact the GP.
• They may be bored or not using up all their energy. Try to find appropriate activities or enjoyable exercise.
• They may be upset by noisy or busy surroundings. Pacing may cease if they can find a quiet room.
• They may be angry, distressed or anxious. Try to find out how they are feeling and show you understand.

However, in some cases pacing may be due to changes that have taken place in the brain. Try to distract the person but if you are unable to prevent them from pacing:

• Try to find somewhere they can pace in safety without disturbing everyone.
• Make sure they have supporting shoes and comfortable clothes.
• Check feet and legs regularly for any redness, swellings or blisters which may need attention. Ask the GP or community nurse if you are concerned.
• Try to persuade the person to rest from time to time and offer drinks and snacks.

Fidgeting

People with dementia may fidget constantly. They may be uncomfortable, bored, upset, need more exercise or it may be due to brain damage.

• Check whether they are too hot, too cold, hungry or thirsty or whether they want to use the toilet, for example.
• If they seem upset try and find the reason and reassure.
• Try and distract their attention with an interesting activity or involve them in some form of exercise.
• Give them something to occupy their hands such as worry beads, a soft toy, or a rummage box with interesting objects, for example.

Hiding and losing

The person with dementia may deliberately hide objects to keep them safe and then forget where they are or that they have indeed hidden them.

• The wish to hide articles may be partly due to feelings of insecurity and a desire to hold on to the little they still have. Try to reassure, however impatient you feel.
• Make sure that you do not leave important documents or valuables lying around and that you have spare sets of keys if they are likely to lock things away.
• Make sure that you know their hiding places so that you can tactfully help them to find missing articles.

Some people may also hide food, perhaps intending to eat it later. If this is the case you may need to check hiding places regularly, and discreetly dispose of any perishable items.

Suspicion

People with dementia may become suspicious and worry that other people are taking advantage of them or out to harm them in some way. For example, they may accuse someone of stealing from them when they mislay an object or imagine that a friendly neighbour is plotting against them. Such ideas may be partly due to failing memory or an inability to recognise people they know, and partly due to a need to make sense of what is happening around them.

• Although such attitudes can be very trying, avoid arguing with the person. State calmly what you know to be true, if appropriate, and then reassure or distract.
• Explain to others in contact with the person that any unfounded accusations are a result of the dementia and that they should not take them personally.
• Do not automatically dismiss the persons suspicions if there is any possibility that they may be based on truth.

The Society would like to thank Janet Keane of Oxford University's Department of Psychiatry for help in preparing this advice sheet.

November 1997

Page Text supplied by The Alzheimer's Disease Society of Great Britain