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Unusual behaviour

Alzheimer's disease can cause a person to exhibit unusual and unpredictable behaviour that challenges caregivers, such as severe mood swings, verbal or physical aggression, combativeness, repetition of words, and wandering. These behavioural changes can lead to frustration and tension, for people with Alzheimer's and for their caregivers. It is important to remember that the person is not acting this way on purpose, and to analyse probable causes and develop care adjustments.

Getting support

Getting support

There are no magic solutions, but support and affection from friends and family may help you to cope with the situation.

  • You may find that discussing problems in a support group with others who have had similar experiences helps you feel less unusual or alone. Having a good laugh or cry in the company of others who understand, can also help.
  • You may prefer to talk about your feelings on a one-to-one basis with your doctor, a community mental health nurse or a good friend who can give you the time and understanding you need.
  • If you find it difficult to talk to someone you already know, talking to a trained counsellor may help. Counselling won't change the situation but it may help you accept it and make some choices for yourself.

If you do seek help from a counsellor, make sure it is someone who is properly trained and experienced in this field, because anyone can set up as a counsellor. Ask for a recommendation from someone you trust. Check the fees before making an appointment.

Ways of coping

Ways of coping

  • Some carers continue to sleep in the same bed while others can’t, and move to single beds or separate rooms.
  • A private relationship with someone else can be of help for some carers. Others may find this impossible while the person remains at home, though they may consider it if the person goes into frail care.
  • Masturbation may bring relief and enjoyment for some carers.
  • Everyone is different and chooses different coping mechanisms.

Diminished interest in sex

Diminished interest in sex

Many people with dementia do seem to lose interest in a sexual relationship and may become quite withdrawn at an early stage.

Being touched or cuddled may give them reassurance but they may not be able to show any affection themselves.

Sometimes people with dementia may not openly respond to sexual advances but at the same time will accept them. For some partners this is better than nothing as it helps the relationship to feel more normal. Others may be left feeling guilty because the person does not seem to be making a choice.

Only the partner can decide what seems right in the circumstances, but it may help to talk to someone who understands.

Before the diagnosis

Before the diagnosis

You may become aware of changes before dementia is diagnosed. Perhaps your partner has become less interested in sex and you feel hurt or rejected, or perhaps he or she has become more sexually active but less loving and considerate.

With a diagnosis of dementia, you can at least feel assured that it’s not personal and perhaps make allowances for changed behaviour. It may help to talk to the doctor or other professionals about why the dementia affects your partner's sexual behaviour in a particular way.

Increased sexual demands

Increased sexual demands

You may find that your partner's sexual needs have increased and can sometimes be tiring and embarrassing, as these demands can happen at odd times or in unsuitable places. This may make it difficult for you to show normal affection in case your partner mistakes it for a sexual advance. If embarrassing behaviour takes place in front of others, do not embarrass the person. Talk quietly and try to distract him or her, or lead the person to a more suitable place.

Increased sexual demands can be particularly upsetting if your partner seems cold and detached. You may feel as though you are being treated like an object. Such feelings will be even stronger if your partner forgets that you have had sex, immediately after it occurs, or no longer recognises who you are. Again, do find someone to whom you feel you can talk.

If the person seems very frustrated, encourage masturbation in private.

Some people with dementia may become aggressive if their demands are not met. If this happens, it is a good idea to keep safely out of the way till the mood has passed. Ask the doctor for advice if this happens often or if you are frightened. Medication may be considered as a last resort. The person may become calmer as the dementia progresses.

Partner's reactions

Partner's reactions

Carers describe many different feelings about continuing a sexual relationship with their partners. Some may feel pleasure in that this is something that they can still share. Others may actually feel disgust as someone who seems like a stranger is touching them. As the illness progresses the situation often changes and so do their feelings.

  • Some carers find it impossible to even think of sex because they are caring for their husband or wife as a parent cares for a child. They find that the very private tasks they have to do for the person put them off the idea of sex.
  • Many carers find it hard to enjoy a sexual relationship when the relationship has changed so much and very little is shared. They feel they are living with a different person.
  • Some carers find that their partners are clumsy and inconsiderate because of the dementia but they don't want to hurt their feelings or destroy their confidence. Sex then becomes something to be put up with rather than enjoyed.
  • Carers often feel guilty about their reactions and feel the need to talk to someone who understands the situation.

Other ways to help

Other ways to help

If you are trying but cannot always keep the person clean and dry, there are things that you can do to help both of you:

  • Special pads or pants may be worn, either just at night or night and day. These will help keep the person’s skin dry but you must still take him or her to the toilet as you usually would.
  • Make sure that he or she is changed as often as necessary and the skin is kept clean and dry. The problem with pads or pants is that the person with dementia might think that they can be used instead of going to the toilet.
  • You can also cover the mattress with a rubber sheet but must make sure that the person does not lie on the rubber. There must be a sheet or blanket to lie on. Disposable draw sheets are also very useful.

See Independent Living Centre (Cape Town and Johannesburg) details on this site (http://www.alzheimers.org.za/AboutAlz/Early/tilc ) for medical equipment and aids, or talk to your pharmacist.

Tips for dealing with wandering

Tips for dealing with wandering

Tips for dealing with wandering

The first thing to do is to try and find out as much as you can about the person and the family. This might give you a clue as to where s/he might go. If the person seems to become restless and tries to leave the house at a certain time every day, maybe this was the time that s/he went to work or went to milk the cows, feed the chickens or fetch the children from school. Maybe the person is going to visit one of her/his children, a friend or relative. Maybe it’s just to enjoy the space and freedom of being outside and not kept in the house. Some people walk just for the pleasure of walking, or used to have a job in which they walked.

  • If the person is leaving or has already left the premises, do not try to force him back as he might become very upset and even aggressive. Walk a short way with him and try and talk him into going back, or distract his attention and gently lead him back. Respect the fact that he also needs space.
  • If it is not possible for him to walk around outside, try to have a room in the house with as little furniture and as few objects in it as possible and so give the person space to move, and let him turn the chairs over or move them around.
  • Giving him medicine to prevent wandering is not a good idea, as it will make the person sleepy and more difficult to care for.
  • It might be necessary for some people to lock the house during the day or night to stop the person from wandering. If the person is locked in during the day as the other people living in the house are at work and there is no-one to look after the person with dementia, make sure that there are no fire hazards. Turn off the stove and hide away gas bottles or anything else that might be dangerous. The person must have water or other liquids and food left out for him to eat during the day. Ask someone in the area to check up on him. If the person with dementia is in a dangerous situation, he must be able to call for help and others must be able to get into the house to help him. It is useful to tell the neighbours or a local shopkeeper about the situation so that they will understand and might offer to watch the house or check on the person for you.
  • If the person does get lost, do not panic. Rather, walk about the neighbourhood and ask people if they have seen him. If you don't find him in your area, report it to the police.
  • When you do find a person who has wandered away, do not get cross with him, shout or punish him. He will already feel very frightened and need to be reassured that everything will be alright because he is now with you. Take him home to familiar surroundings, people and a familiar routine.
  • Try to provide a safe place for the person to wander in, like an enclosed yard or garden with a chair for him to sit on in the shade. Make sure that there are no poisonous plants in the garden that he might touch and may even eat.
  • Tie a bell or a couple of pieces of metal to the doors leading to the outside so that you can be alerted if the person walks out.
  • Try to encourage family and friends to visit the person with dementia so that he doesn't feel the need to go and visit them.
  • It is useful to give the person a piece of paper with your name, address and telephone number on it so that, if he gets lost, he can ask the way to the house or ask someone to phone you. This can also be pinned onto the front of his clothing.
  • A silicone bracelet is available from, a local company, ICE-AID. The name is derived from In Case of Emergency and Assistance in Distress. The bracelet bears a unique member code and the number for the company, which keeps a record of your contact info as well as the wearer's medical details. The service relies on advanced technology and operates 24 hours a day, 365 days a year. The cost of subscription is R95 per year. This includes your bracelet, but not delivery. If you buy a bracelet (black, pink or blue) by clicking on this link, Alzheimer's SA will receive a donation of R20 from ICE-AID: www.ice-aid.com.

Ways to prevent incontinence

Ways to prevent incontinence

  • The first step is to find out when the person normally went to the toilet and take the person then, or take him/her to the toilet every two hours. The person may get into the habit of going at those times. Another way is to write down when the person is incontinent and see if there is a pattern. For example: does it happen every three hours or a certain length of time after he or she has had something to drink? If so, take the person to the toilet just before the next time you expect the incontinence.
  • Be aware of signs that the person might want to go to the toilet. Examples are restlessness, pulling at clothes, holding him/herself or moaning.
  • Make sure that the toilet is easy to reach and easy to use. If a toilet seat is used, if possible have it in a different colour to the toilet bowl and the floor so that the person can see it easily. To help the person get off the toilet, it is useful to have a handrail on the wall.
  • Take away or cover pieces of furniture that the person might mistake for a toilet.
  • Make sure that the person can reach the toilet easily, with no furniture in the way, and can open the door/s.
  • A sign on the door of the toilet may also help him or her remember where the toilet is.
  • Should the person have difficulty reaching the toilet as it is far from the living area, it may be useful to leave a commode in a room that is private.
  • Making sure that the person has clothes that can quickly be removed or unfastened will also help. Velcro fastenings may be easier to manage than zips or buttons.
  • Do not rush the person when he or she is using the toilet.
  • Try to give her/him as much privacy as you can.
  • If the person is incontinent during the night, do not give anything to drink for three hours before bedtime and take her/him to the toilet before bed. It is very important, however, to make sure that plenty of liquids are drunk during the day to avoid dehydration (drying out) and bladder infection.

How to prevent aggression arising

How to prevent aggression arising

Steps to take to prevent agressive behaviour re-occurring:

  • If you can find out what the triggers are, you may be able to work out how to prevent the behaviour
  • Try to keep a calm environment by cutting down the stimulation, which could be in the environment, or in the activity that the person is doing. ‘Environment’ could mean the TV, radio, other noisy residents or an unfamiliar place
  • Look out for a warning sign before the outburst. This warning sign depends on the person but may be increased agitation or restlessness. If this happens, try to distract or reassure by gently touching the person or putting your arm around his or her shoulders. Do not, however, let the person feel that you are trying to hold him or her down, for the person will fight you.
  • Do not change familiar routines. Try to keep to routine and to familiar surroundings, as much as possible.
  • Perhaps the person has become frustrated at a task he cannot do or does not want to do. Remember that people with dementia often have severe reactions to feelings of failure. When you show or tell the person what to do, explain what to do step by step, with plenty of time in-between for the person to carry it out. Do not give too many choices, as this will be confusing.
  • Do not criticise mistakes or inadequacies. Instead, give praise for efforts and achievements.
  • Encourage independence by letting him do as much as he can for himself.
  • Explain to visitors that the person might not recognise them and they must not put pressure on the person to try to remember them.
  • You also have your needs and there will be times when you feel that you cannot face the day with the person or you feel that you might shout or even hit out. If this happens, try to avoid letting the person see how you feel, as people with dementia can be very sensitive to moods and will pick up yours quickly and react in the way that you feel. Take a walk on your own or sit in a quiet corner and try to relax.
  • Attend an Alzheimer’s support group if there is one in your area, as the people who attend will understand your problems and will be able to give you support and advice.

Should the aggression just get worse no matter what you try, do discuss the problem with the doctor or clinic as the person might need a full assessment performed and other forms of intervention might need to be considered, such as medication.

What to do?

What to do?

What to do when a person with dementia becomes aggressive

  • Stay calm and try not to show fear. Never lose your temper; rather, turn around and walk away as losing your temper or arguing will make things worse. Go and do something to take your mind off what happened. Making something for both of you to drink could also help things return to normal. Should you ever feel that you might lose control of your temper, do not feel guilty. Look for help from people who understand your situation, such as the doctor or support group.
  • Give the person space (stand about two metres away). If he or she feels that you are getting too close, the person might hit out.
  • If the person becomes violent, get out of the way as quickly as possible, leaving the room if necessary, only returning once that person has calmed down.
  • Arguing with the person who has dementia will only frustrate both of you as she or he is not able to reason or understand why you are upset.
  • Do not try to reason with someone in this state. Concentrate on speaking in a calm, reassuring voice and try to distract the person or give reassurance. If necessary, take the person away from the trigger.
  • Do not laugh or tease as it will make things worse.
  • Do not punish the person.

Dealing with incontinence

Dealing with incontinence

Tips

  • It is most important that you try as much as possible to encourage the person to use the toilet as it will be less embarrassing and upsetting for that person and less work for you. There are various preventative strategies you can try.
  • Remember that it is not the person’s fault so always try to be patient and understanding.
  • It is not nice to clean up after an adult who has been incontinent but try to get over it. Imagine how embarrassed the person must feel to be incontinent and then have someone clean him or her. Try to plan ahead.

Related strange behaviour:

  • Sometimes the person with dementia may do strange things like hiding dirty clothes, or peeing in a basin or dustbin.
  • Some may even wrap their stools in paper and hide them away.
  • This could be because the person is embarrassed or ashamed of what has happened, or is just very confused.
  • Do not get angry, but tell the person that it is alright to tell you if there's been an accident and you will help to clean up.

Cleanliness

  • When someone has been incontinent it is important that the person is washed with soap and warm water and dried well before putting on clean clothes, or he or she will get a rash or even sores.
  • If not properly cleaned, the person will start to smell and then no-one will want to get close.
  • Any dirty linen and clothing must be washed straight away or soaked in water with some washing powder in a bucket with a lid, until it can be washed.

Uninhibited behaviour

Uninhibited behaviour

The person you are caring for may sometimes behave in a way that you or other people find embarrassing. It may be that the person’s forgotten the ‘rules’ our society has created about what is and what isn’t ‘acceptable’ behaviour.

Bear in mind that embarrassment is a response to behaviour. Different, 'odd' and 'strange' behaviour gives us an opportunity to rethink our ideas about what we think is tolerable.

There are often simple reasons behind what might seem to be inappropriate behaviour. Undressing in public may indicate that the person is hot or uncomfortable. Lifting a skirt or fiddling with trouser fastenings may be a sign that the person needs to use the toilet.

There may be times when the behaviour is more overtly sexual. The person may stroke his or her genitals or make advances to other people who are around, be they relations, care workers or waitresses. In this case, try to distract the person.

Reasons for wandering

Reasons for wandering

Feeling lost
People with dementia do not like to be moved around. They get used to the house and area in which they live and feel safe.

When they are moved, they may become anxious and frightened. It is therefore better not to move them unless absolutely necessary. If you do need to, tell them about the move just before you are leaving or whilst you are packing but always reassure them that they will be safe.

Should someone agree to look after the person for you, it is better for the helper to come to the house than to move the person.

Loss of memory
People may suddenly forget what they were doing or where they were going. An example is that they might have gone to visit a friend and then forgotten where they were going and might also not know where they are.

It does sometimes happen that they forget their way home. When they forget they then wander around, lost, and become very anxious.

It is useful to give the person a piece of paper with your name, address and telephone number on it so that if he gets lost, he can ask the way or ask someone to phone you.

Boredom
Sometimes people wander because they are bored. Try giving him things to do that he might enjoy.

Feeling lonely
May be looking for the companionship of a friend or someone that s/he was close to.

Unfamiliar environment
Perhaps the place is unfamiliar and the person is leaving to find more familiar surroundings.

Pain
Check the person’s skin - sometimes when people are sick or in pain, the skin might be pale and sweaty. See if they hold themselves or moan.

Side effect of medication
Some medication may cause people to feel restless or agitated. You will need to discuss this possibility with the doctor or clinic.

Anxious or upset
Something might have happened in the house that has caused the person to become anxious or upset, and he or she wants to get away from it.
Family arguments, shouting or too much noise (like teenagers playing loud music) can be causes.
Try to understand what the problem might be. Ask what is wrong and listen to what the person says.
Talk quietly, reassuring him or her that everything is and will be all right.

Living in the past
This frequently happens with people with dementia as they tend to forget the things that happened recently, and remember things that happened long ago.
Talk about where he is going, and what he is going for.
Do not argue with him. An example would be someone saying he's going to see his mother. Don't say he can't because she's dead. Talk about the mother and hold the person's hand as he might just feel the need for the comfort that he would get from his mother.

Confused about night or day
The person may wake up during the night and think that it is daytime and so start to prepare for the day and wander about the house.
Maybe he or she has wet the bed.
The person might do things that are dangerous, while the rest of the people in the house are sleeping. The best way to solve this is to keep the person as active as possible during the day so that s/he will be tired enough at night.
Try to ensure that normal sleep habits are followed: If he normally went to bed at eleven o’clock, had seven hours’ sleep and then woke up at six o’clock, it is no use making him go to bed at seven o’clock, because he will then sleep from seven o’clock until two o’clock and wake up thinking it is time to get up.

Too dark in the room
It may be too dark for the person to see, so he leaves to look for a lighter area. Do not, however, leave a bright light on in the room. Rather, have a dim night-light.

Depression

Depression

The person you are caring for may feel sad and low at times. Feeling sad is a normal human emotion. The person may be anxious about what is happening to him or her.

Offer as much reassurance as you can. Try involving the person in activities he or she enjoys. This may be enough to lift the person’s mood.

If you notice that the person you are caring for has prolonged periods of unhappiness and listlessness, is slowing down and becoming withdrawn, then you should seek medical advice. He or she may be experiencing depression.

The relationship between depression and dementia is complex. People with severe depression are occasionally misdiagnosed as having dementia and people with dementia are sometimes, especially in the early stages, labelled as being depressed. An added complication is the fact that a diagnosis of dementia can sometimes lead to depression.

Depression is an illness in its own right and can be caused by physical changes in the brain's chemistry. It is also treatable and can be alleviated by drugs and/or counselling.

Problem behaviour, overreaction and cathartic attacks

Problem behaviour, overreaction and cathartic attacks

“Problem behaviour” is any behaviour that is socially unacceptable. People with dementia usually use their behaviour to communicate the way they are feeling or to express themselves. In time, you, as the carer, will be able to identify what the person is trying to tell you, and then learn how to deal with the behaviour.

When people with dementia show problem behaviour, we must always remember that they are still the same people that they were before the dementia. Their world has changed so much. They now live in an environment that they do not know and with people they do not recognise. They have no control over what happens and are trying to make some sense of it. What a frightening experience! To make matters worse, they try to tell people how they feel and what they want, but they’re not understood.

Unlike you, people with dementia are not in control of their behaviour, thoughts or actions as it is part of the illness, and confusion or a misunderstanding may cause their behaviour. Therefore, you may need to change the way you do things. You will need to control your anger, responses and expectations of the person. It is up to you to turn around and walk away when being verbally abused or attacked. The person is not trying to annoy or irritate you, but communicating a need or feeling.

Different types of “problem behaviour”:

  • Behaviour may be caused by people’s personality and history or by their present environment or people that they are with. There is no hard and fast rule to solving behaviour problems as what works for one may not work for another.
  • Be aware that some people may behave in a way that actually gives them comfort and keeps them busy. Sometimes we should allow people with dementia to carry out their “different” behaviours that will not affect anyone else but are important to them, and they might find comfort in them. Examples would be continually packing a suitcase, tidying a cupboard or hiding a handbag in the bed.
  • It is important to ask yourself, “Is the behaviour a problem and if so, to whom is it a problem?” You might find that it’s not really such a problem that it needs to be stopped. The behaviour may be more of a problem for you or others, than it is for the person with dementia.
  • All types of behaviour occur for a reason. They may be the result of feeling discomfort, confusion, fear, or loneliness. It is important to try to find out what the problem is. Maybe the person has an infection or pain, but cannot tell you. It is therefore better to let the doctor know.
  • It may sometimes happen that for no reason you can think of, the person you are caring for suddenly shouts, screams, hits out, swears, cries or laughs. Often, it looks like “having a tantrum”. This is known as “over-reaction” or a “catastrophic reaction” and happens when the person reacts to a remark or something that happens. Whatever caused the person to react this way is called the "trigger". Again, s/he is trying to tell you that something is wrong.


What to do if this behaviour occurs:

  • Never lose your temper. Turn around and walk away, as losing your temper will make things worse. Arguing will also make matters worse. Rather, go and do something to keep your mind off what happened. The person will probably forget about the incident quite quickly. Making something for both of you to drink could also help things return to normal. Should you ever feel that you might lose control of your temper, look for help from people who understand your situation, such as the doctor or support group.
  • Should the person become violent, get out of the way as quickly as possible, leaving the room if necessary, and return only once s/he has calmed down.
  • Arguing with the person who has dementia will only frustrate both of you as that person is not able to reason or understand why you are upset.
  • Do not try to reason with someone in this state. Concentrate on remaining calm and try to distract or reassure the person. If necessary, take the person away from the trigger.
  • Do not use punishment – s/he is not a child.
  • If the person laughs or cries, overreacting to a trigger, try to distract her/him, as the laughing and crying is not a show of emotion but hysteria, and can exhaust the person.


Steps to take to prevent the behaviour re-occurring:

  • If you can find out what the triggers are, you may be able to work out how to prevent them.
  • Try to keep both the environment and the activity calm. The environment could include the TV, radio, other, noisy residents or an unfamiliar place.
  • There may be a warning sign before the outburst. This warning sign depends on the person but may be increased agitation or restlessness. If this happens, try to distract or reassure by gently touching the person or putting your arm around her or him. Do not make it seem that you are trying to hold the person down or s/he will fight you.
  • Do not change familiar routines. Try, as much as possible, to keep to a routine and to familiar surroundings.
  • Perhaps the person has become frustrated about a task s/he can’t do or doesn’t want to do. Remember that people with dementia often have severe reactions to feelings of failing at a task. When you show or tell them what to do, give the instructions one at a time, with plenty of time between tasks for the person to carry them out. Don’t give too many choices, as this will confuse them. Ask, “Do you want to wear this dress?” (showing her the dress) rather than, “Which dress do you want to wear?”
  • You also have your needs and there will be times when you feel that you cannot face the day with the person, or you feel that you might shout or even hit out. If this happens, try to avoid letting the person see how you feel as people with dementia can be very sensitive to moods and will pick up yours quickly and react in the way that you feel. Take a walk on your own or sit in a quiet corner and try to relax.
  • Attend an Alzheimer's SA support group if there is one in your area, as the people there will understand your problems and will be able to give you support and advice.

Of course, sometimes you might become so angry that you overreact and are unkind. On these occasions it might be helpful to distinguish between being angry because of the person’s behaviour, and being angry with the person.

Identifying reasons for aggression

Identifying reasons for aggression

You will only really be able to identify the possible causes for the outburst when the incident is over, but trying to find out the cause (called the trigger) may help you understand the problem and prevent further outbursts.

The areas that we look at for the possible causes are physical, emotional and environmental:

Physical factors:

  • It may be a side effect of the medication
  • May be sick or be in pain
  • Possibly cannot hear or see as well as she or he used to
  • The disease itself has caused the aggression
  • May be hungry or thirsty
  • May need to go to the toilet
  • May be having hallucinations (seeing or hearing things that are not there)
  • May feel tired
  • May have had enough of what is happening

Emotional factors:

  • May feel embarrassed about needing help with personal functions and at the same time angry about the loss of independence
  • Fear is often a cause of anxiety and anger for the person with dementia. These fears may seem unnecessary to us but are very real to that person
  • Too many demands are being placed on the person to perform tasks or to answer questions that he or she cannot cope with
  • Perhaps the person is responding to your mood
  • Could be being asked too many questions
  • Upset from change in routine
  • Frustrated as cannot communicate his or her needs
  • Loss of understanding
  • Cannot control her or his own behaviour
  • At times the person may realise that things he or she used to do are now not possible, and get angry about what is happening
  • Might have just misunderstood what was said or done
  • Feels he or she is being treated like a child
  • May be bored or lonely and looking for attention
  • The person may become aggressive because you are trying to stop her or him from doing something. This often happens when people with dementia wander and attempts are made to bring them back
  • Then again, the person might become aggressive when you want her or him to do something and that person doesn't want to do it, like bathing
  • Does not recognise the environment or the people and may even think the people are strangers who have broken into his or her home

Environmental factors:

  • Too much happening at the same time
  • Upsetting or unfamiliar environment
  • Sudden noises or movement
  • Too many people around
  • Temperature is too hot
  • Not enough stimulation
  • Something specific happened that set the person off

Repetitive behaviour

Repetitive behaviour

People with dementia sometimes ask the same question over and over again. They may not remember asking the question or the answer you gave, because of short-term memory loss. They may also be feeling insecure, and such repetitive behaviour may be comforting. Do your best to find out what the person is feeling.

  • Try to be patient and tactful
  • Help the person to find the answer herself. If she's asking the time, for instance, and she's able to read the time, ask her to look at the clock
  • Try to distract her with an activity

If you are feeling irritated, think about leaving the room for a while, giving the person with dementia something to do. By the time you come back, he or she may have forgotten the question altogether.

Hallucinations

Hallucinations

Some people with dementia have hallucinations: that is, they see or hear things that are not actually there. These can be very frightening and can cause great anxiety. People with dementia with Lewy bodies seem to be particularly susceptible to hallucinations.

If you are with someone with dementia when hallucinations occur and you feel the person is frightened or anxious:

  • Acknowledge the feelings the person is experiencing
  • Avoid arguing, or contradicting the person
  • Offer reassurance - respond in a calm and supportive manner
  • Try to distract the person, by talking or by turning his or her attention to another activity

Be aware that you may need to modify the surroundings of the person with dementia:

  • Check the area is well lit. Poor lighting can cast shadows or reflections that can be misinterpreted
  • Check for noises that might be mistaken for direct speech, such as air-conditioning or the TV
  • The person with dementia may see reflections in mirrors, or photographs, as real poeple. You may have to cover or remove mirrors.

Finally, make sure the person is hearing or seeing as well as possible. Check that hearing and/or sight tests have been done recently and that the person is wearing the prescribed hearing aid and/or glasses.

 

Inappropriate sexuality

Inappropriate sexuality

If you are caring for a partner with dementia, there will be a great many changes in your relationship and these may include changes in your sexual relationship. Every couple and each situation is different but sexual problems, when they occur, can often be a cause of great distress.

You are likely to experience a sense of loss if a good sexual relationship ends or is no longer enjoyable. It may help if you talk to an understanding professional or a good friend. It is important to remember that any strange or unexpected sexual behaviour is likely to be part of the dementia and not directed at you in any personal way.

Of course, this may not be an area of concern for you. You may be able to continue with a satisfying sexual relationship for quite a few years, or you may feel happy that you can remain affectionate and close in other ways. Sexuality includes love, warmth, caring and sharing and building a relationship, not just the act of intercourse.

Accusing, suspicion and paranoia

Accusing, suspicion and paranoia

The person you are caring for may sometimes become suspicious, believing that other people are taking advantage or intending to harm him/her in some way.

You may be accused of stealing possessions or of being unfaithful, for example.

Such ideas may be partly due to failing memory or an inability to recognise people the person knows. People with dementia sometimes misinterpret the world around them, which may be why they make such accusations. Probably, what they want is to make sense of what's happening.

If s/he accuses you of stealing, it can be frustrating for you. The person may be hiding things because s/he feels insecure and wants to keep possessions safe, but forgets where they're hidden.

When something goes missing, try to find it. It's important not to take the accusations seriously and it's pointless contradicting him/her, as an argument will probably make things worse.

Tips:

  • Keep copies of important items such as keys, identity documents and specs.
  • Check the contents of waste-paper baskets before emptying them.
  • Try to discover his/her favourite hiding places.

 

Different types of behaviour

Different types of behaviour

The following links provide information on different types of behavioural changes and make useful suggestions as to how one might try to counter or deal with each of them.

Wandering, getting lost and pacing

Wandering, getting lost and pacing

One of the worries that families and carers have when looking after a person with dementia is the problem of wandering.

There are many reasons why people wander, especially as the disease gets worse. It is important to try and find out why people are wandering so that you can stop them, especially if it is dangerous for them to wander about in the area. Some families even lock them up to keep them safe. It can be very tiring looking after people who wander so do not feel guilty if you feel you have had enough! Rather look at ways of letting them walk around in a safe area.

People with Alzheimer’s who tend to wander should be given as much space to move in as possible. It is also good exercise for them and helps them to sleep better at night. Taking them for a walk or asking someone to take them, might help. Dancing, or any other exercises like playing ball games or with balloons, will also get rid of any excess energy. For other tips click here.

Sight and hearing changes

Sight and hearing changes

If you suspect that you are not being heard by the person you are caring for, make sure his or her hearing is not impaired. You may need to arrange for a hearing test. A hearing aid may help for a while. Equally, make sure the person has recently had a sight test. Try to ensure that the person’s prescription for glasses is up to date and that the glasses are worn.

  • If the person hears better with one ear, warn visitors to speak clearly to that one.
  • If sight is affected, you may have to explain to whom he or she is talking, possibly more than once.
  • When talking to someone with a sight or hearing impairment, make sure you stand or sit in front of that person, where your face can be seen, and speak slowly and clearly.
  • If appropriate, you might want to touch the person lightly to draw attention to your presence. Be aware that sudden movements may be frightening.

Communication is not just about speech. We communicate in many ways. We continually send messages unconsciously, by the tone of our voice and by the way we use our bodies and our faces. We do not usually need to be told when people are annoyed or irritated, for example: we can see it on their faces or hear it in their voices.

When the person you are caring for is unable to speak or understand speech, you may still be able to understand how that person feels, by interpreting the way he or she uses the body. The person may pace around when feeling agitated, for example.

You can also use your own body language to reassure the person you are caring for. A warm touch and confident manner will reassure the person that you are there to offer comfort.

 

Exploring causes and solutions

Exploring causes and solutions

It is important to identify the cause of the challenging behaviour and consider possible solutions.

  • Identify and examine the behaviour
  • What was the undesirable behaviour? Is it harmful to the individual or others?
  • What happened before the behaviour occurred?
  • Did something trigger the behaviour?
  • Explore potential solutions
  • Is there something the person needs or wants?
  • Can you change the surroundings? Is the area noisy or crowded? Is the room well lit?
  • Are you responding in a calm, supportive way?
  • Try different responses in the future
  • Did your response help?
  • Do you need to explore other potential causes and solutions? If so, what can you do differently?

 

Responding to challenging behaviour

Responding to challenging behaviour

  • Stay calm and be understanding
  • Be patient and flexible
  • Don't argue or try to convince the person that you're right
  • Acknowledge and respond to requests
  • Try not to take behaviour personally
  • Accept the behaviour as a reality of the disease and try to work through it

 

Aggression

Aggression

There are times when people with dementia may become aggressive. This aggression may be physical, when they hurt someone by hitting, kicking, scratching, pinching or biting, or they break things. The other aggression is verbal, when they might swear at you, make threats, call you names or accuse you of doing things that you haven't done.

Whatever the type of aggression, it's frightening and upsetting. The first time it happens, you may not know how to cope and will feel helpless and scared that it might happen again.

Here are some insights into the causes and some useful links to info that may help:

  • People with dementia may become aggressive if they feel frightened, embarrassed or frustrated because they cannot understand others, or make themselves understood, or cannot manage to do something. Sometimes it happens suddenly when you don't expect it. This is called an ‘over-reaction’ or a ‘catastrophic reaction’, when the person shouts or screams or becomes very agitated for no good reason. People with dementia usually use this behaviour to communicate how they are feeling or to express themselves. Aggression may be one of the ways in which they are trying to communicate. In time, you will know the signs when the person is going to become aggressive and, even better, how to prevent it. Another possible cause is the illness itself affecting self-control.
  • It is important to know that the person is not being aggressive on purpose. Unlike you, people with dementia are not in control of their behaviour, thoughts or actions. Therefore, it's up to you to control your anger, responses and expectations of the person. You may be required to change your routine or the way you do things. The person is not taking his or her anger or frustration out on you personally - it would have happened to anyone who chanced to be there at the time. The person will probably forget about the incident quite quickly.

Useful Links:

Incontinence

Incontinence

Incontinence is when a person does not go to the toilet but wets (urinary incontinence) or dirties (faecal) his or her pants.

If incontinence occurs, it is important to check first with the doctor or clinic to find out what the cause of the incontinence might be.

  • The person might have a bladder infection, or it could be caused by the medicine that the person is taking, or even by constipation.
  • In men, an enlarged prostate gland might also cause incontinence.

If it is for one of these reasons, the person can be treated and may get better.

If the person is incontinent because of Alzheimer’s, we will have to consider other ways of dealing with the incontinence.

Common causes of behavioural changes

Common causes of behavioural changes

  • Physical discomfort caused by an illness or medication
  • Over-stimulation because of a loud or busy environment
  • Inability to recognise familiar places, faces, or things
  • Difficulty completing simple tasks or activities
  • Inability to communicate effectively