A key to caring for someone with dementia is understanding that many or all of their problems arise from the illness from which they are suffering. Their loss of memory and skills and the behavioural problems they may experience are as a direct result of damage to their brain caused by the dementia. There is no control over the illness and therefore carers should be advised not to take difficult behaviour personally or apportion blame on the person with dementia because they feel they are 'not trying hard enough'.
The following practical guidelines may be of some value in helping carers better understand and cope with day-to-day problems in care-giving and in regaining some control over their situation.
1. Keep Things Normal
A diagnosis of dementia does not mean that you must suddenly start treating your relative like an invalid. In fact, you should try and make a point of keeping things as normal as possible for as long as possible. Carry on any pursuits which you have both found enjoyable, such as going to the pub, theatre or cinema, listening to music and singing or dancing, unless or until it stops being a pleasure. Introduce new activities if they seem appropriate - people with dementia often enjoy simple arts and crafts activities and derive great pleasure from the company of small children or animals.
2. Retain The Person's Independence
There are two major reasons for doing all you can to maintain the persons independence and self-care skills for as long as possible. Firstly, it helps them to retain some sense of dignity and self-respect, and may avoid frustration being brought on by feeling helpless. Secondly, it makes less work for you -the more they can do for themselves, the less you have to do for them.
Encourage the person to carry on with things they can manage. When something becomes too difficult, don't give up on it completely -perhaps it could be achieved if it were broken down into smaller steps. But be sure to recognise when something is really beyond the capability of the person you care for. Try not to highlight their loss of competence and independence and avoid placing them in a situation where they will fail. Instead give them simpler tasks which you know they can complete successfully. Praise them (but not in a way that could be perceived as being patronising) when they complete a task successfully or for any help they can give you. In this way they will have a sense of achievement and their self-esteem will be maintained.
Cut down on what the person does independently slowly and reluctantly, because once self-care skills are not practised they are quickly lost. Brace yourself and start to gently take over when you see that their ability to achieve tasks has been lost and the loss of competence is distressing them.
3. Avoid Confrontation
There will be many occasions when you and the person you care for will have disagreements. You might think it's time he/she changed his/her dirty clothes, and he/she doesn't. He/she believes someone's stolen their money from their wallet/purse, you know they haven't. He/she insists it's perfectly all right to go out shopping dressed in their pyjamas, you'd rather not be with them when they did!
In fact, arguments won't usually get you very far. They generally lead only to frustration and upset for both of you. It's better to avoid confrontation whenever you can. Try not to contradict the person with dementia if they say strange or silly things. Instead, try to divert them from their confused behaviour onto something more interesting or constructive, like a favourite song or photograph. Talking about the past at times of upset can be reassuring when the present makes little sense to you. If this fails, go along with the person's behaviour until diversion is possible. For example, go out for a walk with them when they insist on wandering outside and while walking with them talk about happier times or how nice a cup of tea would be after such a long walk! If all else fails and the person's behaviour is upsetting both of you then walk out of the room, having first ensured the person's safety, and have a break, a cup of tea, or even count to ten. This could help diffuse the situation and after a short time the person may well have forgotten what all the fuss was about.
4. Avoid Crises
There will be occasions when the person you care for seems suddenly to get more confused, to behave particularly badly or to cry for no reason and they may be unable to explain why. This may be caused by what they perceive as a crisis in their life -an event or sudden change that seems normal enough to those unaffected by their illness, but alarming to someone who is confused.
A crisis for the person with dementia might be having to hurry to get somewhere on time; meeting too many people at once, even if they are people familiar to them; or going into new and unfamiliar surroundings.
Some of these crises may be avoidable. Try always to leave plenty of time to prepare for an outing, or to get a task done. Make sure that only one or two friends or relatives visit at once. Accompany the person to new places. If you take them away on holiday, try to go somewhere where both your problems and those of the person you care for will be understood. Above all else, try to stay calm yourself.
There will be times, though, when crises cannot be avoided, for example, when you are to have a break for the first time and an unknown sitter comes into the house, or when the person is to go to a new day-centre. On these occasions simply try to reduce the disorientation the person is likely to feel by introducing a new person in slow stages and with you present, or by using a family friend or neighbour as a sitter. The introduction to a day-centre or hospital should also be made gradually.
Don't avoid making any changes at all or stop your social life just to avoid crises for the person you care for. Sometimes they are inevitable and may have a positive outcome for him/her - or you - in the long run.
5. Establish Routines
Routines are vital in caring for someone with dementia. Doing the same thing at the same time every day helps the person to remember and to feel safe and secure. If life is predictable and familiar, there is less chance of increasing their confusion. Maintaining a routine therefore helps you in the task of care giving.
6. Make Things Simpler
A person who is already confused will find taking straightforward decisions, or carrying out relatively simple tasks, over-complicated and difficult. Taking a bath, for example, involves many separate actions, from putting in the plug to turning on the taps and obtaining the right temperature, getting undressed, and so on.
Try to simplify things: don't offer too many choices (two is probably enough); break tasks down into short, simple sections; if a task becomes too difficult ask them to do only part of it, doing the more difficult bits yourself; and try to consult the person and offer them choices, even if they don't fully understand. All these techniques can help preserve the person's self-esteem and feelings of self-worth which may be adversely affected if they feel they are losing control over their life.
Make things simple for yourself too. Don't fight lots of battles at once, but try and solve problems one at a time. That way you stand a better chance of success.
7. Maintain a Sense of Humour
Dementia is a tragic illness. There may nevertheless be times when you can see the lighter side of things, and it is important for your own mental health that you maintain the ability to laugh. The person you care for may still be able to enjoy a good joke or a funny situation and it will do you both good to laugh together.
Of course, laughing with someone is quite different from laughing at them, which should be avoided at all costs.
8. Make Things Safer
The risk of an accident increases in the home of a person with dementia and you should take great care to make the home as safe as possible.
Loss of physical co-ordination increases the likelihood of falls, so you should check the home for danger zones like a loose banister rail, slippery floor mats, awkwardly placed furniture, or carpets which have not been securely nailed down. You may need to have an extra stair rail fitted, along with hand rails near the bath and toilet.
Loss of memory and thinking ability can give rise to risks from a number of everyday activities. The person may turn on the gas fire but forget to light it; they may drop lighted matches into a
wastepaper basket; they may scald themselves on a boiling kettle. Some of the solutions are obvious -switch off the gas at the mains when you go out, don't leave matches around, hide kettle flexes. The list is a long one, and largely a matter of common sense. You should review your home for all potential accidents and take action to avoid them.
9. Maintain General Fitness and Health
The general state of the person’s health will affect their overall condition. If good general health is maintained it will help to preserve existing physical and mental abilities for as long as possible as well as encouraging independence and sustaining morale. The person needs someone, like their GP, to regularly check on their condition, a balanced diet and appropriate physical exercise.
Keeping a check on the condition
As the main carer you are the best person to monitor any changes in the cared for persons condition. A person with dementia will still suffer from the common colds, coughs and minor complaints that make everyone uncomfortable. They are also more prone to certain ailments,
such as chest infections, and more likely to suffer falls. A person who is unable to move easily and spends much time in one position may develop pressure sores or hypothermia in cold weather (especially if they live alone and are not closely supervised). All these things
need to be carefully watched for as the person may not be able to explain to you what is wrong and may suffer pain or discomfort needlessly. Sometimes you may be able to give a remedy yourself, but do remember that even everyday medication such as aspirin may worsen their symptoms unless given in small doses. A check with your doctor is advisable if the symptoms are persistent, unusual, worsen suddenly, or if you are unsure what to do.
A district nurse, social worker, or community psychiatric nurse who makes regular home visits can also look out for any changes and reassess the person's needs. They can refer them to specialists or services for particular problems, such as falls. A doctor can prescribe medicines which may give relief from problems such as sleeplessness and wandering at night, or the sudden onset of incontinence which may result from a bladder infection.
As the illness progresses there may be problems with the practical side of eating and tastes for food may alter. But it is important to try and include all the ingredients of a balanced diet especially as the symptoms of dementia can be worsened by an inadequate diet. Try to provide something the person with dementia likes eating from each of these food groups every day:
meat, fish, eggs, pulses (lentils, beans, etc.);
fruit and vegetables;
cereals and bread;
dairy produce, milk, cheese, etc.
Make sure the person drinks enough liquid to prevent them becoming dehydrated or constipated. If constipation becomes a problem an increase in high fibre foods, such as wholemeal bread, cereals, fruit and vegetables, may help.
Physical activity can be pleasurable as well as helping to preserve existing abilities. The kind of exercise depends on the person's condition and what they like doing, such as walking, dancing, gardening, swimming or playing bowls -at least until these things become impractical. As the illness progresses a gentle stroll in a familiar street or the park may be more suitable and just as enjoyable.
10. Keep Channels of Communication Open
As the person's dementia progresses there will be increasing problems of communication between them and others. There will be difficulties for the person in expressing him/herself and for carers explaining things and making him/herself understood. This will affect daily activities and the expression of thoughts and feelings.
Talking often becomes difficult for a person with dementia. They may use the wrong words, forget words completely, endlessly repeat words or phrases and lose the thread of the conversation. This can be distressing for both the person and carer.
There are several things which can be done to help keep channels of communication open. At a practical level it is extremely important to check that the person’s senses are not additionally impaired by, for example, a hearing aid that does not work properly, dentures that are too loose, or glasses that are no longer of the correct prescription.
In conversation you should remember to speak clearly, simply and slowly, and to talk about only one topic at a time. Allow extra time for the person to reply. You may need to repeat things several times, find a simpler way of saying something, or guess the sense of what they are saying. If the person is confused, remind them of basic information gently, perhaps by using a picture or object. Try not to contradict or embarrass the person by correcting them bluntly.
And of course speech is not the only way of communicating. Body language -the way we look at a person, how close we move towards them, how we touch them -can be more important than words alone. In the later stages of dementia looking and touching may be the main way of expressing affection and care for the person, and the body language of the person with dementia gives you clues as to what they mean and how they are feeling as well.
11. Use of Memory Aids
In the early stages of dementia the person may be helped by using memory aids. These are things which may help to jog the memory, avoid confusion and disorientation, and keep things as normal as possible.
Here are some things that carers have found useful:
Regularly remind the person of the time, day and where they are
Keep a clock with a large clear dial on view
Keep a calendar that can be changed by the day, month and year
Label the doors of rooms, such as the bedroom and toilet, with words, pictures and colours
Keep photos of familiar people and the family on view
Leave their personal possessions where they can easily find them
Keep furniture in the same place
Keep checklists of things to do that day, or lists of expected visitors etc., which can be ticked off
Set things out in the order in which they have to be done
Leave out things required, for example, one day's medication supply
Leave a simple clear note with an address if you are going out
Make a life story book together with details and pictures of the person’s life to date, family etc. to use to help reminisce
Don't forget textures, tastes and smells can also evoke memories