Sometimes the person with dementia may become very violent for a short time. They may become verbally abusive, cause damage to property or become physically violent. (Physical violence almost always occurs when someone else initiates physical contact.) Try to stay calm and not show fear or alarm. Try to understand that even if the aggression is directed at you, it is not a personal attack.

Violence could be caused by:

• defensive behavior - people with dementia may feel humiliated and frustrated when they are placed in a situation where they have to accept assistance, especially with intimate tasks such as bathing and toileting: when their independence and privacy are disrupted, they may react angrily; failure of competence - the person is not able to cope with certain tasks and may feel a failure;

• misunderstanding and bewilderment about what is going on - as the illness progresses, the person may be bewildered by events, for example, accusations of stealing may be an attempt to make sense of their inability to locate something and an unwillingness to accept that they have forgotten where they put it;

• fear - if the person is unable to recognize people or places, this may be very frightening. The person may be convinced they should be somewhere else (e.g. childhood home) or may believe the person with them is a stranger. Sudden noise or people approaching from behind may cause a hostile reaction;

• changes in routine such as the presence of a lot of people, a special event, distracting noise or activity may cause the person to feel unable to cope;

• attention-seeking;

• boredom, distress, restlessness, illness or pain may be expressed in terms of anger, aggression or agitation, especially if the person is unable to communicate such difficulties verbally;

• attempts to control other behaviors such as wandering.

Difficult Behaviors in Dementia

If you are caring for someone with dementia, you may find that they sometimes over-react to a trivial setback or a minor criticism. They might scream, shout, make unreasonable accusations, become very agitated or stubborn, or cry or laugh uncontrollably and inappropriately. This tendency to over-react is part of the disease and is called a “catastrophic reaction”. Sometimes a catastrophic reaction is the first indication to make relatives aware of the dementia. It may be a passing phase, disappearing as the disease progresses, or it may go on for some time.

Coping with such behavior can be very difficult and is often a matter of trial and error. Remember that the behavior is not deliberate: it is out of the person’s control and they are probably quite frightened by it. They need your reassurance, even though it may often not appear that way. Trying to make sense of the environment becomes a difficult task confronting the person with dementia. Simple tasks such as bathing, dressing and eating are all major hurdles to overcome. People with dementia are frequently confronted by failure, so maintaining their dignity is most important.

THREE COMMON WORRIES:

• Is the person for whom I am caring brooding about past tensions and misunderstandings which have occurred between us?

• Does he hate me now?

• Have I done something unintentionally to upset him?

These are all normal reactions - it is important to realize that most of the anger and aggression is directed against the provider because you are the closest person, however, it is not a calculated personal attack.

CAUSES OF CATASTROPHIC BEHAVIOR

• stress caused by the excessive demands of a situation;

• frustration caused by misinterpreted messages;

• another underlying illness.

Aggressive behavior may come on without warning and make you feel very apprehensive. However, if you can figure out what situations trigger catastrophic behavior (perhaps by keeping a diary), you may be able to work out ways of avoiding them. If not, you may still be able to find methods of dealing with the behavior quickly and effectively when it occurs. Remember, each person with dementia is an individual and will react to circumstances in their own particular manner.

DISTRACTION

• if there are a few moments before an outburst when the person becomes increasingly agitated, you may be able to prevent the over-reaction by calming the person down early;

• first try to respond to the feelings of anger by soothing, comforting and reassuring the person gently. Then try to defuse the situation by distracting them and, finally, praise success;

• alternatively, you could try calmly ignoring the outburst and busying yourself with something else;

• try to distract a person who is sobbing excessively or laughing uncontrollably because this is not a sign of true emotion and may be very exhausting.
  
   

THINGS TO AVOID

• try not to argue with the person when they become upset because they no longer have the ability to be rational or logical and there is no point in trying to reason: save your energy and concentrate on trying to remain calm.

• try not to get upset or excited as well or the situation will simply escalate further;

• try not to order the person around;

• never reprimand or punish, even if the behavior appears like an unreasonable tantrum: they are not responsible for it, cannot learn from it, and may forget the whole incident quite quickly;

• try not to focus on what the person cannot do: focus on the positive;

• try not to be condescending or sarcastic;

• try not to ask questions which rely on memory;

• try not to talk about the person in their presence;

• try not to take things personally;

• try not to hurry the person;

• never try to restrain a person because this just increases their anxiety and distress;

• never put your own safety at risk: if the behavior escalates out of control, remove yourself from the situation, call your doctor or the police and contact your social worker to discuss future plans.

LOOKING AFTER YOURSELF

Sudden over-reactions may leave you upset and a little shaky. It is essential that you seek support for yourself from a supportive family member, a friend, an understanding professional or a support group, and that you get a break from the constancy of the task. Identify the areas of support that you need and learn about the services in your area ( respite care, in-home care, day care etc.) which are available to help you.

Allow yourself to get help with other tasks such as cleaning so that you can conserve your energy.

Remember that your own feeling of distress, frustration, guilt, exhaustion and exasperation are quire normal: However, if you feel you are losing control, it may help to discuss your feelings with your social worker or a person trained in helping caregivers.

Losing the ability to communicate can be one of the most frustrating and difficult problems for people with Alzheimer’s disease or other dementias which affect language. As the disease progresses, the person experiences a gradual lessening of their ability to communicate. They find it more and more difficult to express themselves clearly and take in what is being said, and providers find it an increasing struggle to understand what the person with dementia is feeling or trying to say.

SOME CHANGES YOU MAY NOTICE IN THE PERSON WITH DEMENTIA:

• they may have difficulty finding a word and say a related word instead of the one that is lost;

• they may not be able to understand what you are saying or only be able to grasp part of it;

• they make talk fluently but not make sense;

• writing and understanding the written word will also deteriorate;

• they may be able to talk of the distant past but not of recent events;

• they may lose the normal social conventions of conversation and interrupt, ignore another speaker, not respond when spoken to or become very self-centered;

• they may have difficulty expressing emotions appropriately.

HERE ARE SOME SUGGESTIONS TO HELP WITH COMMUNICATION PROBLEMS:

Be Flexible

• remember that each person is unique and each relationship is different so it is a question of trying things out to discover what works best for you;

• talk to other providers and health care professionals and see what works for them;

• don’t expect too much: keep modifying your expectations at each stage so that they remain realistic;

• remember that words are not the only form of communication: you will need to rely more heavily on non-verbal cues such as the tone of voice, touch, and the way you move to convey how you feel when the person you are caring for begins to have difficulty understanding conversation;

• listen for and learn to recognize the feelings and emotions rather than the words.

Preserve Self Esteem

• try not to talk down to the person or to treat them as a child: conversation should be simple, but remain on an adult level;

• continue sharing activities and pastimes with the person and show them you value them;

• people still retain their feelings and emotions even though they may not understand what is being said, so do everything you can to preserve their dignity and self-esteem;

• never discuss the person in front of others as if they were not present, even if you think they do not understand.

Ways of Talking

• remain calm and talk in a gentle, matter-of-fact way; keep sentences short and simple, focusing on one idea at a time, talk about specific events that may be remembered or everyday things like weather;

• allow plenty of time for what you have said to be interpreted;

• speak slowly and clearly without raising your voice;

• repeating a point using different words can be helpful;

• incorporating information in your conversation which tells the person where they are, what is happening around them and who they are with, can make them feel more secure and less confused;

• use orienting names whenever you can such as “your son, Jack”;

• try to tune into the feelings rather than the content of the conversation; don’t attempt complex discussions: keep information simple.

The Right Environment

• avoid competing noises or activities such as TV or radio;

• make sure glasses, hearing aids and dentures are all correctly prescribed and well-fitting;

• if you are able to remain still and with the person while you are talking to them, it will be easier for them to follow you and will show you are prepared to work at trying to understand them;

• always try to move slowly and quietly;

• maintaining regular routines helps minimize confusion and this can assist communication;

• sit or squat beside a seated person - never stand above; make eye contact;

• when talking in a group make sure the person is not on the end of the row. It is better to place the person so that the conversation is around them and they will not feel “left out”.

Simplifying Activities

• break down an instruction into simple activities: for example, name the next item to be put on as they get dressed rather than suggest they put on their clothes;

• as the condition worsens, break tasks into even smaller steps;

• explain what you are doing at each step along the way; focus on familiar tasks: introducing new tasks can be confusing;

• make it easy for the person to join in a conversation by asking questions that need only a “yes” or “no” answer, e.g. “It’s very cold for this time of the year isn’t it?”

Finding Words

• if the person has difficulty finding a word, ask them to explain in a different way or guess at their meaning and ask if you are correct;

• if they can’t think of the right word, try giving clues instead of immediately supplying it, e.g. “cup of ....”. You can also try giving a description, e.g., “You clean your teeth with it”. You can ask them to show you what they are referring to. Pointing to something will often help the person get the message across.

Verbal Abuse

• avoid upsetting arguments or allowing your own stress and exasperation to show;

• use distraction when possible to help overcome upsets and frustration;

• arguments over mistaken ideas should be avoided. If the person insists they have seen a TV program a million times before, even after you have pointed out that it is a first run, say something such as “Oh, well, I don’t think I have seen it before. It’s interesting, isn’t it?” Your arguments will only end up frustrating you and probably upsetting the person.

Encourage Laughter

• use laughter: humor is a great safety valve to overcome a mistake or misunderstanding;

Body Language

• pointing or demonstrating can help a person to understand what you are saying; touching and holding their hand may help keep their attention and show them you care;

• try to maintain eye contact when speaking and listening.

Asking Questions

• avoid too many choices: present only one option at a time;

• ask questions which require only yes/no responses and give them plenty of time to respond;

• try to be tactful when the person asks the same questions over and over again.

Aids to Communicating

• showing and touching physical objects and pictures may help with memory and assist conversation;

• music can be an excellent way of communicating;

• it can help a person recall words and express feelings;

• old photos can be used to stimulate memories and recall events.

If you are caring for a person with dementia, you may be faced at some time with the problem of what to do if they begin to wander. Wandering is quite common amongst people with dementia and can be very worrying for Foster Care Providers who are concerned for the person's safety and well-being. You may feel guilty that they have managed to slip away without your noticing, but no one can keep a 24-hour watch on another person and you should certainly not blame yourself or anyone else who has been left in charge. Failing memory and declining ability to communicate may make it impossible for the person with dementia to explain the reason they wandered off or even to remember themselves. The following suggestions may help you understand the reasons for wandering and how to cope with it. 

Reasons

• Changed environment: A person may feel uncertain and disoriented in a new environment such as a new house or day care centre. Wandering may cease once the person becomes used to the change. The person may also want to escape from a noisy or busy environment.

• Loss of memory: Wandering may be due to a loss of short-term memory. A person may set off to go to the shop or a friend's house, and then forget where they were going and why. Or they may forget that you have told them that you are going out and try to find you.

• Excess energy: Wandering can be a way of using up excess energy, indicating that the person may need more regular exercise.

• Continuing a habit: People who have been used to walking long distances may simply wish to continue doing so and may not really be wanderers.

• Expressing boredom: As dementia progresses, people find it harder and harder to concentrate for any length of time - wandering may be their way of keeping occupied.

• Agitation: Physical changes which have occurred in the brain may cause a feeling of restlessness and anxiety: agitation can cause some people to pace up and down or to wander off with no apparent purpose. They may fail to recognize their own home and insist on leaving.

• Discomfort or pain: Walking may ease discomfort, so it is important to find out if there is any physical problem or medical condition and try to alleviate it: tight clothing, excessive heat or needing to find a toilet could all cause problems.

• Searching for the past: As people become more confused they may wander off in search of someone or something related to their past such as a partner who has died, a lost friend or a house they lived in as a child.

• A task to perform: Sometimes people leave the house because they believe they have a task to do or are confused about the time of day or the season. This may be related to a former role such as going to work in the morning or being home for the children in the afternoon.

• Confusing night with day: People with dementia may suffer from insomnia or wake in the early hours and become disoriented. They may think it is daytime and decide to go out for a walk. Reduced sensory functioning may mean shadows or night sounds become confusing and distressing.

• Dreams: An inability to differentiate dreams from reality may cause the person to respond to something that they dreamed.

What can you do?

The precautions you take will depend on the person's personality, how well they are able to cope, their reasons for wandering and whether you live in a potentially dangerous or safe and secure environment.

Try to Stay Calm

• Always remember to comfort and reassure - try not to get cross or show your anxiety because the person is already likely to be confused and frightened.

• Get them back into a regular, familiar routine as soon as possible.

• Try not to panic if the person does disappear.

• If you are unable to find them in the immediate neighborhood, notify the local police.

• Make sure you get a break from caring: use local services such as day care, respite care.

Seek Medical Advice

• A physical check-up will help to identify whether illness, pain or discomfort has triggered the wandering.

• Try to avoid high doses of medication which will often increase confusion and cause drowsiness and possibly incontinence - use only under medical supervision.

Keep a Diary

• Some Foster Care Providers find it helpful to keep a diary so that they can see if there is a pattern to the wandering behavior - it may occur at particular times of day or in response to particular situations and these variables can then be more carefully controlled.

• Examine the person's routine to see whether there are events or signals that may trigger wandering behavior such as a hat and coat hanging at the door, or a particularly busy time of the day.

Precautionary Measures

• External doors can be secured against wanderers by installing a deadlock which required a key on both sides; be sure to carry a key or hide it nearby in case of emergencies.

• Sometimes it is sufficient simply to relocate door locks where the person will not think to look for them.

• Consider bells and buzzer which sound when external doors are opened.

• Make part of the garden secure so that it becomes a "safe place" to walk around in.

• Provide a recent photograph of the person for your local police Neighborhood Watch program in case the need arises.

• Monitoring devices are available but are often expensive (details are available from from the Alzheimer's Association).

For Frequent Wanderers

• Alert neighbors and shopkeepers and let them know you appreciate their help in keeping track of the person.

• If the person wanders and you have been unable to find them in the immediate vicinity, notify the police and give full details including height, build, color of hair, whether they wear glasses, previous history of wandering, and the clothing they were wearing when they disappeared: a recent color photograph will be very helpful.

• If the missing person returns home, notify the police immediately.

• It may not be wise to confront the person: instead, try accompanying them a little way, then diverting their attention and reassuring them about how good it is to be going home.

• Try accompanying the person on their walk: often a short walk can help relieve anxiety and this may help you both.

• Look at photographs together: this may be reassuring and help to ease anxiety.

Night Wanderers

• Try to create a quiet and peaceful atmosphere which is conducive to sleep.

• Try to increase daytime activity to ensure drowsiness by bedtime.

• Consider going to bed later.

• Experiment with a glass of warm milk or soft music at bedtime.

• If the person wakes during the night, reassure them that they are safe and where they belong.

• Have familiar objects in the bedroom.

• Consider using a night light.

• A warm bath or shower may be helpful.

Remember, each person with dementia is an individual and will react to circumstances in their own particular manner.

TRY TO MINIMIZE STRESS

A calm, unstressed environment in which the person with dementia follows a familiar routine can help to avoid such reactions.

• Approach the person slowly and calmly: try to avoid conveying your own stress, fear or alarm.

• Be aware that the person may not recognize you: try to give some information which may help, such as your name and your relationship to them.

• Try to make eye contact and address them by name; touch may be helpful and reassuring, but be aware that some people may not like it.

• Speak clearly and use simple sentences, allowing time for response.

• Try to ask questions that require only a 'yes' or 'no' response;

• Try to talk in a place that is free from distractions.

• Try to focus on familiar skills which are within their capabilities.

• Give limited choices only, to avoid confusion.

• Break a task down into simple steps which are not overwhelming.

• Modify these steps as the person becomes less able.

• Demonstrate visually what you are trying to say.

• If it has become difficult to understand what the person is saying, try to focus on a word or phrase that makes sense, or respond to the feeling they are trying to express.

• It may be necessary to remove yourself from the situation until the person calms down.

MODIFYING THE ENVIRONMENT

People with dementia often become extremely upset if they find themselves in a strange situation or among a group of unfamiliar people where they feel confused and unable to cope. The situation may seem to be very simple, but the frustration caused by being unable to meet other people's expectations may be enough to trigger an outburst.

• Be aware of what situations lead to difficult behavior such as aggression and try to avoid them.

• Try to do difficult and frustrating tasks when the person is at their best and not tired.

• Use a diary to help you monitor when good and bad times are likely to occur.

• Pictures or labels on objects may help identify or locate them;

• Try to avoid frustration by adapting the environment to cope with the problem behavior: e.g. allow the person to go for a walk if they want to wander.

• Close off certain areas of the house where problems are occurring.

• Simplifying the environment: e.g. place only essential cutlery on the dining table.

• Try to use the person's other senses such as smell and touch.

• Try to remember that problem behavior may intensify when there is a major change in lifestyle such as moving house or moving into residential care.