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Unusual behaviour

People with dementia sometimes behave in ways that other people find puzzling or difficult to handle.  This advice sheet looks at a number of different behaviours and suggests ways of coping.

Each person with dementia is an individual with individual needs.  Much of their behaviour is an attempt to communicate their needs or how they are feeling.  Once we understand the reasons why someone is behaving in a particular way, it is easier to find ways of coping.

If the person is unable to tell you how they are feeling, try a number of approaches.  Ask for advice from professionals or other carers before you become too stressed.

Doctors may sometimes prescribe medication for these behaviours, but these treatments will need very careful monitoring by the doctor and should be reviewed regularly.  Ask about any side-effects the medication may have so that if they appear you do not automatically assume that the dementia has become worse.

Always remember that the person you are caring for is not deliberately being difficult.  Ask yourself too whether the behaviour is really a problem.  Make sure that you have support for yourself and breaks when you need them.  Carer stress is one of the risk factors for elder abuse.

Unusual behaviour may be related to:

  • Physical illness or discomfort
  • Side effects of medication
  • Overstimulation; sensory overload
  • Unfamiliar surroundings
  • Complicated tasks
  • Frustration; communication challenges.

Repetitive questioning

A 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 a person’s repetitive questioning.  Always try to put yourself in their situation and try to imagine how they might be feeling and what they might be trying to express.

  • Be tactful when answering.  Don’t say: ‘I’ve already told you that’ as this will increase feelings of anxiety.  Try to get the person to find the answer for themselves if possible.  For example:

Q  - ‘Is it lunch time?’

A   - ‘Have a look at the clock.’

Q  - ‘Do we need more milk?’

A   - ‘Why don’t you look in the   fridge?’

  • Try to distract the person with an activity if appropriate.
  • If you cannot contain your irritation, make an excuse to leave the room for a while.

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

Repetitive phrases or movements

Sometimes people with dementia repeat the same phrase or movement many times.  You may hear this referred to by medical professionals as ‘perseveration’

  • This may be due to some kind of discomfort.  Check that the person is not too hot or too cold, hungry, thirsty or constipated.  Contact the GP if there is any possibility that they are ill, in pain or if you suspect that their medication is affecting them.
  • The surroundings might be too noisy or stressful.
  • Encourage an activity as the person might be bored.  Some people find stroking a pet, going for a walk or listening to favourite music, for example, calming and very enjoyable.
  • It may be the person’s way of soothing themselves.  We all have different ways of comforting ourselves.
  • It may be due to damage to 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 a room.

  • Look for a reason behind the repetition.
  • Focus on the emotion not the behaviour.
  • Turn the action into a similar activity e.g. dust the table.
  • Accept their behaviour and learn to live and work with it.

The behaviour may relate to a former activity or occupation such as traveling, organizing an office or entertaining friends.  You may be able to work out what this activity might be, which will help to understand what the person is feeling and trying to do. It may also serve as a basis for conversation.

The person may be bored and need more stimulating activities or more contact with other people.

Trailing and checking

We know that for many people, the experience of living with dementia makes them feel extremely insecure and anxious.  A person with dementia may therefore constantly follow you or call out to check where you are.  Memory loss and confusion about time means that a few moments may seem like hours to a person with dementia and they may only feel safe if you are nearby.  This behaviour can be very difficult to cope with

  • Try not to speak sharply.  If you do it will only increase the person’s anxiety.
  • Provide something absorbing for the person to do if you are busy with something else – perhaps a pet or a familiar cuddly toy or doll.
  • It may be reassuring for the person to hear you hum or sing.  If you are in another room, putting the radio on may be calming.

Shouting and screaming

The person may continually call out for someone, shout the same word or scream or wail over and over again.  There are several possible reasons for this behaviour.

  • They may be ill or in pain, they may be experiencing hallucinations. 

If any of these possibilities seem likely, consult the GP.

  • They may be lonely or distressed. At night, a night light in the bedroom may be reassuring
  • They may be anxious about their failing memory.  Try to reassure or distract them.  If they are calling out for someone from their past, then talking to them about the past may be helpful.
  • They may be bored.  Everyone needs to be occupied, including people with dementia.  Listening to music together or giving the person a gentle hand massage are just some of the things that people have found helpful.
  • There may be too much noise and bustle.  They may need a quieter environment.
  • It may be the result of brain damage due to dementia.  Ask your GP to refer the person to a specialist if you think that this is the case.

Laughing and crying

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

  • This may be associated with hallucinations or delusions (seeing or hearing people or things that are not there, or believing things that are not true).  If you think that this may be the case consult the GP.
  • This may be due to the effects of brain damage.  It 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.  On the other hand they may respond to reassurance.

 

Lack of inhibition

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

  • Undressing or appearing naked in public may simply indicate that the person has forgotten when and where it is appropriate to remove their clothes.  Take them somewhere private and check whether they are too hot, uncomfortable or whether they want to use the toilet.
  • Lifting a skirt or fiddling with flies may be a sign that the person wants to use the toilet.
  • If a person starts to stroke their genitals in public, discourage them tactfully and try to distract their attention.  If such behaviour is frequent or persistent, consult the GP.
  • If the person behaves rudely – for example, by insulting people or swearing or spitting – do not attempt to argue or correct them.  Try to distract them.  You can explain to other people later that their behaviour is due to the dementia and is not directed at them personally.

Pacing

There are a number of reasons why a person with dementia may pace up and down a room.

 

  • They may be hungry or thirsty or constipated, in pain, or may simply want to use the toilet and be unable to tell you.  Check on these possibilities.
  • They may feel ill or be suffering the side effects of certain medicines.  If you suspect that this may be the case, contact the GP.
  • They may be bored, or they may not be using up all their energy.  Try to find appropriate activities or enjoyable forms of exercise.
  • They may be upset by noisy or busy surroundings and may stop walking up and down if they can find a quiet place to sit.
  • They may be angry, distressed or anxious.  Try to find out how they are feeling and show that you understand.

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

  • Try to find somewhere they can walk in safety without disturbing anyone else.
  • Encourage them to choose comfortable clothes and supportive shoes.
  • Check their feet regularly for any redness, swellings or blisters, which may need attention.  Contact the GP or (community nurse) if you are concerned.
  • Try to persuade them to rest from time to time and offer drinks and snacks.

Fidgeting

A person with dementia may fidget constantly. They may be uncomfortable, upset, bored or need more exercise.  The fidgeting may be associated with the damage in the person’s brain.

  • Check whether the person is too hot, too cold, hungry, thirsty or whether they want to use the toilet.
  • If they seem upset, try to find the reason and reassure them.
  • Try to distract their attention with an interesting activity or involve them in some form of exercise.
  • Give them something to occupy their hands such as a soft toy or worry beads, or provide a ‘rummage’ box containing interesting objects.  Make sure there are no small items that may be confused with food/sweets and eaten.

Hiding and losing

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

 

  • The wish to hide articles may be partly due to feelings of insecurity and a desire to hold on to the little that they still have.   Try to reassure the person, however impatient you may feel.
  • Do not leave important documents lying around and make sure you have a spare set of keys if they are likely to lock things away.
  • Try to find the person’s 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.

General Rule for problem behaviours:

Ident fy and examine the behaviour:

  • Is it harmful to the patient or others?
  • What was person doing just before incident?
  • How did you react?
  • What happened after behaviour occurred?

 

Explore potential solutions:

  • Are needs being met?
  • Can the environment be adapted?
  • Can you change your approach or reaction?
  • Are you responding calmly and supportively?

Did your new response help?

  • Do you need to try another approach?
    • What can you do differently?

Suspicion

People with dementia sometimes become very suspicious.  They may worry that other people are taking advantage of them or intend to harm them in some way.  For example, when they mislay an object, they may accuse someone of stealing from them, or they may imagine that a friendly neighbour is plotting against them. 

Such ideas may be partly due to failing memory or an inability to recognize people they know. We all have a need to make sense of what is happening around us.

  • Although such attitudes can be very difficult to live with, try to avoid arguing.  State calmly what you

know to be true, if appropriate, and then reassure or distract.

  • You should not automatically dismiss the person’s suspicions if there is any possibility that they may be true. 
  • Explain to others who are in contact with the person that any unfounded accusations are caused by the dementia and that they should not be taken seriously.

The Alzheimer’s Society UK would like to thank Janet Keane of the Department of Psychiatry at Oxford University for helping with the preparation of this advice sheet.

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By admin – September 10, 2009

Communiation

People with dementia should be encouraged to communicate in whatever way they are most comfortable with.  This will help them to preserve their own sense of identity and improve their quality of life.

Communication consists of much more than verbal language.  Non-verbal communication is particularly significant for people with dementia and it is very important to be aware of it.  We are all familiar with the saying “actions speak louder than words”.  This is particularly true of people who are losing their language skills.

Much of the behaviour, which causes problems for carers, is actually an attempt by the person with dementia to communicate.

Language skills

An early sign of language being affected by dementia is that the person becomes unable to find the right words – particularly the names of objects.  They may substitute another incorrect word or they may be unable to find a word at all.

As the dementia progresses, they will be less able to start a conversation and the carer may have to become accustomed to taking the initiative.

Try to avoid asking direct questions – a person with dementia may become frustrated if they cannot find the answer.  In the earlier stages of dementia they will be able to express these feelings, but later on they may respond with general irritation or even aggression.  Most of our ordinary social conversation is based on asking questions, so this is a difficult skill for carers to learn.

There may come a time when the person can hardly communicate in language at all.  Not only will they be unable to find the words of objects, they may even forget your name. People quite often confuse the generations, mistaking their wife for their mother, or their son for their husband.  This can be very distressing for family members and carers. 

However, the reason lies in the memory loss, which is one of the most striking symptoms of dementia. 

People with dementia may be trying to interpret a world which no longer makes sense to them because their brain is feeding them incorrect information.  Many difficulties which arise are the result of misinterpretations both by the person with dementia and by the carer of what the other person is trying to communicate.

If you, as a carer, become caught up in such misinterpretations you are likely to feel very distressed and will need support and guidance on handling the situation.

Tips to help with communication

 

Listening

  • Always try to listen carefully to what the person is saying and encourage them to talk.  At all costs, do not patronize them.  Most of us react badly to being treated as if we were small children – and people with dementia are no different in this respect.
  • Look for the emotions/feelings, not the facts.
  • If the person has difficulty in finding the right word, or in finishing a sentence, ask them to explain in a different way.  Listen for clues.
  • Offer a guess such as “is this the scarf you want?”
  • If speech has become hard to understand, use the knowledge that you both have about each other to interpret what you think they may be trying to say.  Always check back with them to see if you are right.  It can be infuriating to have your sentence finished incorrectly by someone else! Do not rush the person by finishing a sentence for them.

Gaining attention

  • Approach from front and identify yourself.
  • Try to catch and hold the attention of the person before you start to communicate.
  • Address him/her by name.
  • Try to position yourself so that they can see you clearly.
  • It may be useful to introduce yourself if the person with dementia is looking confused.
  • Make eye contact. This will help them to focus on you.
  • Try to minimize competing noises, such as the radio, TV or the conversation of other people.
  • Limit distractions

Body language

  • Try to remain calm and still while you are speaking.  This will convey the message that you are giving the person your full attention and that you have time for them.
  • A person with dementia will read your body language.  Agitated movements or a tense expression on your face may upset them and make communication more difficult.
  • Try to find ways to relax so that your body language communicates calmness and confidence.
  • You can pick up cues about the way the other person is feeling from their body language, even if words fail

them.  Facial expressions, the way they hold themselves and move about can give clear signals about how they are feeling.

Speaking

  • Speak clearly and calmly.  Try not to speak sharply or raise your voice.  This will distress the other person, even if they are unable to follow the sense of the words.
  • Avoid vague words eg. “Here it is” rather “Here is your purse”.
  • Use simple, short sentences.
  • Avoid confusing expressions eg. “hop into the shower”.
  • The person will need longer than they used to in order to process information – so allow enough time.  Try not to hurry them.  If you do they will feel that you are putting them under pressure, even if that is not your intention.
  • Give visual clues and cues.
  • Try to avoid asking direct questions,  but if you have to, ask the questions one at a time and phrase them in a way that allows for a ‘yes’ or ‘no’ answer.
  • People with dementia find it hard to make choices and are likely to become confused and frustrated if they are asked to do so.
  • Emphasize key words e.g. Here is your hat!
  • If the person does not understand what you are saying, don’t keep on repeating
  • Use positive rather than negative statements e.g. “Come with me” rather than “Don’t go there”.

 

Encourage spontaneity

  • Humour can help to bring you closer together and is a good safety valve.  Laughing together about misunderstandings and mistakes can help.
  • If the other person is feeling sad they have a right to express these feelings.  All you can do is show them that you care.

Showing respect

  • Never speak down to the other person or treat them as if they were a child, even if they appear to understand very little of what you say.  Do not allow other people to do this either.
  • Try to include the person with dementia in conversations with others.  You may find that you can slightly alter the form of words other people are using to help the conversations along.
  • Including people with dementia in social groups helps to preserve their fragile sense of their own identity.  It also helps to protect them from the feelings of exclusion and isolation, which can be overwhelming.  Remind yourself again that everyone reacts badly to being patronized.
  • It is also important not to converse across the person with dementia as if they were not present.  People with a variety of disabilities complain of being treated in this way, but it is a particular hazard for people with dementia.  If you are getting little response from the person it can be very tempting to do this.  But it can cause great irritation, frustration and sadness.
  • Always talk as if the person with dementia can understand every word you are saying even if they are unable to respond.

Whose reality?

Avoid criticizing and correcting.

Fact and fantasy can become confused as dementia progresses.  Try not to respond with a flat contradiction to a statement that you know to be untrue.  It is better to change the form of the words you use when you respond.  Thus, if the person says, ‘We must leave now – mother is waiting for me’, you might reply, ‘Your mother used to wait for you, didn’t she?’  At all costs avoid making the person with dementia feel foolish in front of others.

Avoid arguing.

Other difficulties

Pain, discomfort, illness or the side effects of medication can also make communication more difficult.  Check with the GP at once if you suspect that this might be happening.

Problems with sight, hearing or ill-fitting dentures can also hinder communication.

 Make sure that prescription glasses are correct, that hearing aids are working properly and that dentures fit well and are comfortable.

Keeping close

Affection can help to keep you close even when conversation becomes more difficult.  You can communicate your care and affection by the tone of your voice and the touch of your hand.  The reassurance you can give by holding the person’s hand, or putting your arm around them (if that is appropriate) should never be underestimated.  Here again we can see that actions can speak louder than words.

  • Ask the person to point or gesture if the words will not come.
  • Write things down – mark items and rooms.

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By admin – September 10, 2009

The Experiences of a Care Giver

I’ll describe experiences of family members who are either primary caregivers or primarily responsible for the well-being of a spouse or parent affected by Alzheimer’s disease. These experiences have been shared with me by husbands and wives, as well as by adult sons and daughters in support groups and in private conversations.

In sharing these experiences, with you, I hope you’ll better understand your own care giving situation and recognise the normality of your own emotional reactions.  I also hope you’ll feel less alone in your struggle to come to terms with what is probably the most difficult family situation you’ve had to endure.

Some of you have a spouse or parent who is only suspected of having Alzheimer’s disease, or who has recently been diagnosed and is only moderately affected.  If this is the case, you may find it upsetting to read about care-giving experiences at more advanced stages of the illness.

Though upsetting, the benefits of emotional readiness for future developments may outweigh the emotional distress evoked.  For some, however, such readiness may not be worth the anguish and fear aroused.  You may be better served by learning to cope with developments as they arise rather than reading about what may or may not occur in your case.

In this article, I’ll focus on the material partner’s experience of loneliness. I’ll limit my focus further to experiences of loneliness during the caregiving period, in which the ill partner requires considerable supervision and care, but prior to the employment of extensive home care or nursing home placement.

Going out Together

Prior to Alzheimer’s disease, you took for granted that your husband or wife would accompany you for entertainment and at social events. Now you give considerable thought before going anywhere with him. ***

He may no longer be interested in or able to appreciate the entertainment, which you both previously enjoyed.  When watching television at home together, you feel you’re watching alone, because you know he’s not experiencing what you’re experiencing.  What brings tears to your eyes leaves him unmoved; what makes you laugh leaves him unaffected. He may even shout at those on the screen, as if they were personally present. But whether your experience together is inside or outside your home, there is nothing to talk about afterwards, since he doesn’t remember what took place in any case.

Going out with your husband, however, poses problems other than his inability to share your experience.  Since he may no longer be aware of socially appropriate manners and behaviour, you always risk embarrassment. When dining out, he may eat with his hands or grab food from another’s plate.  He may emit strange noises or repeat bizarre movements.  The attention this attracts makes you feel conspicuous and self-conscious.

Should he accidentally wet himself, you’re not only embarrassed but feel awful for him as well. What can you do in public situations if he requires help going to the toilet?  After all, he’s not a child to take into ladies rooms. If he wears a diaper for incontinence, changing him is impossible.  As a consequence, he’s no longer a companion to go out with for entertainment.

Feeling Alone in a Crowd

Attending social gathering with your husband highlights the aloneness of you situation.  Friends come up to say “hello” but after a brief interchange, leave and ignore you for the rest of the evening. They stay to avoid the discomfort of conversation with your husband. Even understanding this, you resent their unwillingness to spend more than a few minutes in a situation you live with all the time. You feel rejected and hurt, and more isolated and alone than if you had stayed at home.

The Dilemma of Family Events

When you’re invited to family celebrations, such as weddings, graduations, or holiday festivities, you’re conflicted about attending. If you take your husband along, you’re afraid he’ll disrupt the gathering by inappropriate behaviour.  Besides, given your concern and responsibility for him, you wouldn’t feel free to enjoy yourself anyway. And at any time he may become restless and demand to be taken home.

If you decide to go alone, you feel guilty for depriving him of the stimulating experience of a family reunion. You’re uncomfortable going alone anyway since you’re so used to going together. If you resolve your conflict of going with him or going alone, or by not going at all, you resent him for depriving you of an enjoyable family occasion, even though you know it’s not his fault.

Trapped by Dependancy

If you’re the only one at home taking care of him, going out alone is difficult for still other reasons. He needs you for everything. He calls constantly and follows you from room to room, even to the bathroom.  If you tell him you’re going out, he wants to know when you’ll be back; but you know, if you say, “I’ll be back in two hours,” he’ll expect you in ten minutes.

Even though you realize he’s frightened when you’re away, you nevertheless resent being trapped by his dependency.

During the time you are out of the house, you imagine him impatiently waiting your return, and you’re also worried about what he is doing.  So while you’re relieved to be out, he’s still on your mind.  How can you enjoy yourself feeling worried and guilty?

Of course, you could have more freedom if you hired an aide or companion to stay with him.  But he objects. He doesn’t understand why you need anyone and wants only you to take care of him.  Besides, even you may feel taking care of him is your responsibility, not someone else’s.

If you do have hired aides, and are free to go and come as you like, how do you fill your time? How many movies, museums and galleries can you attend? What’s more, you usually have to go places alone since friends with husbands or jobs do not have the free time you do.  Then when couples your age pass by, arm-in-arm, engaged in conversation, you’re painfully aware of what you’re missing and envy those who still have someone.

Feeling Abandoned

Couples usually relate and socialize as couples. If your husband is no longer able to relate or socialize, getting together with other couples becomes a problem. Also, Alzheimer’s disease limits a person’s ability to engage in the joint activities upon which friendships are frequently based.

Consequently, friends drop away just when you’re most in need of companionship and if your partner is in a nursing home, few people think it appropriate to invite you alone.

More hurtful, however, is the distancing of family members. Your brothers and sisters as well as those of your husband may take no interest in your plight.  Most hurtful, is if your own children show little concern with what you’re going through. You then feel you have no one. Although you recognize your children have lives and problems of their own, you also know what you would do for them if they were in need.

What you may be unaware of, however, is how painful their father’s deterioration may be for them, and that they protect themselves by keeping a distance from both of you.  Even knowing this, you’re hurt and resentful.

No one Understands

When friends or relatives drop in for a brief visit, your husband may remember conventional forms of address and appear relatively normal. What he says may seem to make sense to someone who doesn’t know his reality. Then, if your visitor comments on how well he’s doing, you feel no one really understands your loneliness in living with him.

Although friends and relatives may continue to ask “how is your husband doing?” They seldom, if ever ask, “how are you doing?” It is as if the only one to be concerned about is the person with the illness – the caregiver is assumed to be all right. But there are times you need to talk to someone to unburden yourself, but you find few who are interested in listening for long.  When a friend does listen, her life circumstances are so different than yours; she has little understanding or appreciation of what you’re going through. Do not chase remaining friends away by boring them with your plight, you keep your feelings to yourself.  You’re then left feeling isolated in your aloneness.

The Loss of a Relationship

When alone with you husband you have no one to talk to, since he cannot carry on a conversation. You live in your own head, or say things to someone who is unresponsive. You also get no conversational stimulation from him since he says little or makes no sense. What’s more, since he is unable to understand your thoughts and experiences, you have no one at home with whom to share your feelings. When you’re upset or feeling blue, he is unable to comfort you, and when you’re pleased or feeling good, he is unable to share your pleasure.

Most hurtful of all, is his lack of interest or awareness of you as a person. While you give so much of yourself taking care of him, he has little or no concern for you. If you’re sick, he hardly notices, and if you tell him you’re not feeling well, he soon forgets. What affects your life has little, if any, affect on him.

But your awareness of him as a person has also diminished. In the past, you knew what he thought and felt about himself and his life. Now you no longer know what goes on inside him. What he says makes little sense, even when his words are intelligible. Or he may speak only gibberish, if he speaks at all. In anguish you wonder, what is he aware of, what troubles him, is he upset by what has happened to him? You wish he were not aware at all then, at least he wouldn’t suffer the humiliation and indignity of his affliction and you wouldn’t suffer so much for him.

Although you both live in the same house, each of you lives in a different world, a world neither of you can share with the other. You feel more alone than if you lived alone. If he does not quite know who you are, or thinks you’re someone else, you know you are really alone.  You feel abandoned even though he is still there. You grief the loss of a relationship, but your grief has no end.

How can you stop grieving for someone who is still present and alive? In sadness and sorrow, you long for a relationship that was, but can never be again.

Opposite Sex Companionship

In losing your husband as a person, you’re not only deprived of companionship, but may be deprived of physical and sexual gratification. While you ma or may not fantasize about another relationship in which to satisfy these needs, the unavailability of appropriate persons of the opposite sex makes establishing such a relationship unlikely. But should the possibility of another relationship present itself, you may be tormented with soul searching questions. Can you continue to be a responsible caregiver while enjoying companionship and physical intimacy with someone else? Can you carry on a “double life?” if you can, do standards of fidelity make sense when your partner no longer recognizes you as his or her spouse? If you do become involved in another relationship, whom are you being unfaithful to, your partner of years gone by, or the person who thinks you’re a stranger? What will your children, relatives and friends think? Will they disapprove and accuse you of “abandoning” your ill spouse? Will you feel so ashamed that you go into hiding? Will you be plagued by guilt if no one knows?

One caregiver, in justifying an opposite sex relationship, described his material situation as a “medical separation”. But only you can decide, based on answers to your own questions, what is “right” for you.

The Challenges of Loneliness

In highlighting the experiences of loneliness, I realize, you will not necessarily have all the experiences I’ve described. Some of you may have adult sons and daughters or other family members who are supportive and caring.

For others, old friends may continue to provide companionship. Those of you still employed may have meaningful relationships at work. Although your relationship with your spouse has changed, for some of you, the intimate physical care you provide may have engendered greater closeness than ever. Your devotion and care may have given your life new meaning and purpose, and enhance your sense of value as a person.

However, for many of you, getting the companionship and emotional support you need, is a major challenge.  You may have to put forth special effort to acquire new friends to replace those lost. You may need to become involved in common interest and activity groups or join organizations whose cause or purpose you share. You may have to lower your expectations of others, so more people are acceptable as friends and companions.

As you know, Dementia SA provides emotional support groups to help you feel less isolated and alone. Trained health professionals and caregivers who have experienced caring, lead these groups. Since participants in these groups experience situations similar to your own, they are uniquely able to understand your feelings. For many, the group becomes a supportive family and even engenders close and helping relationships outside the group.

It is important  keep in mind, that although you’re not responsible for the disease, which has so changed your life, you are responsible for what you do or not to diminish your isolation and loneliness. You do not have to do it all Dementia SA is available to help.

*** For simplification, I’ll henceforth effected to the spouse affected by Alzheimer’s disease as “husband” rather than as “husband and wife.”  

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By admin – September 10, 2009

Safety in the home

It is important to find the right balance between independence and the need for protection when you are caring for a person with dementia.  There is no such thing as completely risk-free environment for any of us.  You will probably have to accept that some minor accidents are inevitable, but there are some sensible precautions you can take.  Here are some suggestions.

Dementia leads to changes in a person’s capabilities and behaviour.  This is caused by the disease process.  You will need to be alert to these changes and adapt as necessary.

Of course, each person with dementia is different and every home situation varies.  However, the following are risk factors:

  • A person’s sense of balance and speed of reaction tend to decline, as one gets older.
  • Physical disabilities make it harder to carry out some activities.
  • Dementia affects memory and judgement.  It also affects insight, so a person with dementia will not be aware of the danger to themselves or other people.
  • Carers are often tired and under pressure.  Accidents tend to happen when people are stressed.
  • Assess the home : look at it through the eyes of someone with dementia

Avoiding accidents

It is inevitable that carers feel tired and irritable from time to time.  Unfortunately, the person with dementia will pick up your mood from your body language, even if you do not say anything.  If this is happening, breathe deeply and slow down.  Better still, take a few minutes ‘time out’.

An occupational therapist (OT) can advise you on ways to make your home safer and on aids to support the

person with dementia.  You can contact an OT through your GP, Clinic or Community Health Centre.

Lighting

  • Make sure that the lighting in your home is bright enough so that both of you can see clearly what you are doing.
  • If the person you are caring for is likely to get up at night, leave a light on in the hall when you go to bed and a night light in the bedroom.
  • Even distribution of light
  • Special light fittings
  • Make sure there is a light on in the bathroom or toilet so the person can find their way at night.

Aids and adaptations

Adapt the environment rather than try to teach safety to the person with dementia.

Handrails in the passages and on the stairs, grab rails in the bathroom and toilet will help if a person is unsteady on their feet.  Similarly, special adaptations can be fitted to make bathing safer.  An OT can advise.

Falls

Older people may be unsteady on their feet and are more likely to fall.  This can be dangerous.  Check your home for anything that might cause a fall such as rugs, loose carpets, especially on the stairs and slippery floors.  Remove trailing flexes, unsteady furniture and clutter or objects lying on the floor.  Make sure spilt water/liquid is cleaned up immediately to prevent slipping.

If the person has a fall that seems serious don’t try to move them or give them anything to drink.  If they have broken a bone they may

need an anesthetic later.  Keep them warm and call for an ambulance.

Dangerous substances

Always store medicines and secure household chemicals out of reach of the person with dementia.  If the person is unable to administer their own medication safely you will need to make arrangements for this to be done by someone competent.  Containers, which allow you to measure out medicines for the whole week, can be obtained from a pharmacist.  Ask your GP for advice if this is a problem.

Lock away any poisonous substances such as paint stripper, bleach or disinfectant.  A person with dementia may not recognize them for what they are and could drink them.  
If you think that the person may have swallowed something poisonous, phone for an ambulance or take them immediately to the nearest accident and emergency department.  Take the container and any remains of the substance with you so that the doctor will know what treatment to give.

  • Supervise smoking if needed
  • Beware of items mistaken for food
  • Simplify activities into understandable steps/sequences.
  • Support his/her needs – don’t’ try to make the home a “risk free” one.
  • Adapt, but keep the environment conducive to socializing, meaningful activities and independence/ simple choices.
  • Limit access to potentially hazardous areas or things in the house, eg. locks, taps.

The kitchen

If the person no longer seems to recognize danger make sure that potentially dangerous

Implements such as sharp knives, scissors are removed.  Items in everyday use should be placed within easy reach.

If necessary, fit an isolation valve to a gas cooker so that the cooker cannot be turned on and left on while you are out and provide an electric kettle that switches itself off automatically.

Accidents do happen.  If the person scalds or burns themselves, pour cold water over the affected area for at least ten minutes to reduce the heat and lessen the pain.  Burnt skin can swell so remove anything tight such as a watch or a ring.  Do not apply ointment.  Cover the area with a clean, non-fluffy cloth.  Contact the GP and describe the injury or take the person to the nearest accident and emergency department.  Do not forget to tell the doctor or hospital staff about the person’s dementia as discreetly as you can.

Heating

Fires or a heater can be a danger for someone whose memory and judgement of danger are impaired.

  • Always fit a fixed fire guard
  • Never dry clothes over a fire or a heater.
  • Never take a portable heater into a bathroom
  • Make sure that all gas and electric appliances are serviced regularly.
  • An isolation valve can be fitted to a gas fire in the same way as a gas cooker.
  • Some heaters can be regulated with a time or temperature switch.
  • Turn down the thermostat on the geyser, hot water cylinder.

Other precautions

Gas detectors and smoke alarms should be fitted.  Even if the person with dementia is living alone, and is unable to respond to the alarm, it is likely that others, such as the neighbours or those who pass the house on a regular basis will take appropriate action.  These alarms can also be set up to alert others to the situation, such as security companies or a neighbourhood watch organization.

If water from the taps is very hot, turn down the thermostat

Electric blankets can be very dangerous for people with impaired memory.

A person with dementia who smokes runs the risk of starting a fire because they may forget that they have lit a cigarette and leave it burning or fall asleep while smoking.  This is one of the difficult areas where the carer has to balance the risks against safety and quality of life.  If you live with a smoker who has dementia it may be safest for you both if you keep the cigarettes or at least the matches.  If possible install smoke detectors in the house.

Ask the neighbours

If the person lives on their own or you are out of the house for long periods a friendly neighbour may be prepared to keep an eye open for signs that something is wrong.  Leave a spare set of keys with them and a phone number where you can be contacted if needed.

Gaining admission

If the person lives alone it is important to ensure that you can gain entry to the house if necessary.  For this reason, bolts on the front door may not be a good idea.  Electronic alarm systems, which rely on the person calling for help are no use if the person has dementia because you cannot rely on them to use the system.

It is best to have thought through such a situation beforehand, so that if there is a crisis you can deal with it without the additional worry of wondering how you are going to get in.

Useful numbers

It is a good idea to keep a list of useful numbers in an easily accessible place.  For example:

  • Emergency numbers for gas, water and electricity
  • GP and hospital
  • Social worker and home care agency if involved.
  • Local police
  • Local electrician, plumber, builder or locksmith
  • Local taxi firm
  • Telephone numbers where you can be reached when you are out.
  • Dementia SA’s telephone number.

Include information such as:

  • Where to find the electricity meter
  • Where to find the stop-cock for the water
  • Where the mains electricity and water can be turned off.
  • Where the fuse box is located.

People who need to know this information should be told where to find the list.

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By admin – September 10, 2009

Activities

If you can help the person with dementia to find activities that they enjoy you will improve their and your quality of life.  You will need to be imaginative and flexible in adapting activities to the person’s changing capabilities and to their different moods.  Find a balance between activities with meaning, purpose and pleasure. Consider the time of day as people with dementia often have a ‘best time of the day’.

It is important to choose activities, which the person can manage.

All human beings, including people with dementia, have a fundamental psychological need to be occupied.  However, the nerve pathways in the brain, which carry motivation, may be damaged in a person with dementia.  You may therefore have to help them get started.

Many people with dementia also have problems concentrating.  They may be unable to concentrate on anything, such as a TV programme or reading the paper, for very long.  This means that activities have to be adapted to meet their very special needs. If one activity doesn’t work, try another.

How activities can help

  • Activities can reduce the need for pharmacological management of negative behaviour.
  • Activities can help a person maintain their skills and give them a sense of achievement.
  • Activities keep the person in the communication phase for as long as possible.
  • Activities can be interesting and fun.  They can help the person feel better about themselves and be more alert and interested in what is going on around them.
  • Activities may reduce stress in the sufferer
  • Activities can help a person with dementia express their feelings.  Talking about the past while looking at old photographs or listening to music may trigger strong emotions and you will need to be sensitive to these emotions.  It is the memory and the thinking and reasoning parts of the brain which are damaged in dementia, not the emotions.  We must always be aware of that.
  • Activities Help to validate and value their “world”

Gains for the carer

If a person is occupied in a pleasant way they will not get bored or frustrated.  Boredom and frustration can cause some of the strange behaviour which is such a worry to carers.  You may find that this behaviour lessens or even disappears as a result of an appropriate activity.

Sharing an activity which you both enjoy may help you find new ways to relate to the person and bring you closer together.

Exercise

  • Walking is good exercise.  It also uses up adrenaline which is produced by stress and frustration.  You will probably both benefit from a walk.
  • It is good for you both to get out and about and many carers find ingenious ways of arranging little trips even if it is only to the coffee shop at the local supermarket.

Reminders of the past

People with dementia usually find it easier to remember events which happened when they were much younger rather than those in the recent past. If you can find a way to trigger these far-off memories you may find that the person becomes more lively and interested in what is happening around them.

  • Look at and talk about old family photos or books with pictures from the past.
  • You may like to make up a memory box of old objects of interest to the person you are caring for.  Actually handling articles may trigger memories more effectively than looking at pictures of them.
  • Listen to music or watch videos from a time they would remember well.

Early stages

In the early stages of dementia the person will want to do the things they have always done. 

When planning activities ask:

  1. What does the person really enjoy?
  2. What skills/abilities are left?
  3. What physical limitations are present?
  • They will need encouragement from you and reminders.
  • Make the focus enjoyment rather than achievement
  • They will need you to put any equipment in a place where they can see it easily.
  • Use short sentences when advising the person what to to.

 

Here are some examples:

  • A person who has been a skilful knitter may still be able to knit squares for a blanket to give to a charity.
  • Someone who has enjoyed doing crossword puzzles may still be able to enjoy the puzzles in a puzzle book.
  • Include another friend or relative in some other activities – playing cards or Scrabble, gardening or baking, for example.
  • Men and women enjoy helping with domestic tasks such as washing and drying up, laying the table and making beds.  The end result may not be perfect but they can still enjoy the experience of achievement.
  • Peeling vegetables/making fruit salad and eating it!
  • The memory for some activities may be retained. 
  • Many people are still able to read even when other abilities have been affected.  It depends which part of the brain has been damaged by the dementia.  For example, the ability to type or play the piano may remain intact until the later stages of dementia because it is laid down in a particular part of the brain.
  • Music is a great resource for people with dementia and their carers.  People may still enjoy singing, dancing and listening to music when other abilities are seriously affected.  You might like to record a tape of favourite pieces of music or songs for the person to listen to.  A relative or friend may like to help you with this.
  • The person may enjoy listening to the radio – tuned to an appropriate station but television can be a problem.

Some people with dementia lose the ability to tell the difference between what is real and what is on screen an can become frightened and upset.  Too much noise is also confusing.  If you watch television together, select programmes with small sections of action or humour, rather a programme with an involved plot.  Even a favourite soap opera may become confusing.

  • Look for activities which provide stimulation but avoid too many challenges or choices.  People with dementia can find it difficult to process several options.
  • A sense of humour survives in many people with dementia.  A good laugh will do you both good.
  • Activities, which take a short time, are the most satisfactory because of the problem with concentration.

Later stages

As the dementia advances the person will still be able to carry out very familiar tasks.  They will probably be much more interested in the process of doing the activity than in the end result.

Directions for an activity need to be broken down into small, manageable chunks and should be very simple.

At this stage, the person will probably enjoy tasks with one step such as sweeping, dusting or winding wool.

Although the reasoning parts of the brain and language are breaking down in the later stages of dementia, the person’s sense of taste, touch and smell are still functioning.  Find ways of stimulating these senses.

Aromatherapy, hand and foot massages can all be very comforting.

Sensory stimulation/ Pet therapy

As dementia progresses people find comfort in touching or stroking pieces of fabric or a cuddly toy.  The person may find a hand massage, using a scented oil such as lavender, very soothing, while a fish tank, mobile or a pleasant view can have a calming effect and be satisfying to look at together.

 No one likes having nothing at all to do.  We are all happier being occupied.  The secret seems to be in realizing the different type of activities that people can do as dementia progresses and being flexible.  Keep activities on an adult level for as long as possible.

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By admin – September 10, 2009