People with dementia may not remember which clothes should be put on, in which order they should be put on, or how to actually put them on. They may end up wearing several skirts, and no underwear, or with things on back-to-front or done up incorrectly. They may also have difficulty doing up buckles, laces, bras and so on.
An additional problem is that the person you care for may not recognise the need to change their clothes, for example, when they are dirty or if they are going to bed. They may also choose to wear inappropriate clothing -going out in the daytime in their night-wear, for example.
Try laying out clothes in the order they have to be put on. Avoid clothes with complicated openings and fastenings. Replace buttons with zips and Velcro, buckles and belts with elastic, lace-up shoes with slip-ons and men's 'Y' front pants with boxer shorts. Choose women's bras with a front opening.
You may need more persuasive tactics to overcome the last two problems. The person you care for may resent interference. Don't argue, try to encourage instead. Set out the clean clothes saying "These are the clothes you chose to put on", or "That dress really suits you”. You may have to become tolerant of their preferences. One carer's father frequently wore four pairs of trousers at one time, another's mother liked to go to the day centre in her dressing gown. There was no harm done by either!
2. Washing and Bathing
People with dementia may forget to wash and no longer recognise the need. They may have forgotten what to do, or be unable to wash certain parts of their body because of physical impairment. Some will be unable to climb in or out of the bath safely or manipulate taps. They may be embarrassed by helpers seeing parts of their body usually kept private, and may refuse to wash at all. These problems are increased if they have continence problems and need to wash more frequently.
Try to establish and maintain a routine for washing. You will need a good deal of tact. If the person is reluctant to wash you can emphasise the more pleasant aspects, the comfort of warm water, perfumed soaps and so on. You may have to tell them step-by-step what to do, wash with them, or clean your own teeth to demonstrate. You may have to help or supervise them because of physical difficulty and risk of accident or injury. There will be difficulties for the carer too if the person is large or heavy and you need to lift them. You may be able to get practical help from a Home Care Worker and aids such as rails and a bath seat or hoist which may alleviate some of these problems. Incontinence can be very difficult to manage, especially if embarrassment leads to concealment. And of course it's a problem for the carer who may be just as uncomfortable. A matter-of-fact approach might alleviate distress or embarrassment: "Your trousers are wet, and you'll get sore if you don't wash, please let me help you". However, telling them off or showing that you are upset won't help.
3. Going to the Toilet
People with dementia may forget to go to the toilet leading to inappropriate voiding and constipation. They may forget where the toilet is, even in their own home. There may be problems undoing their clothing in time. At night they may lose their way in the dark or mistake some other object, such as a waste-bin, for the toilet.
At regular intervals, either remind the person you care for to go to the toilet or take them to it. Label the door, or paint it brightly. Make sure clothing can be easily removed. Take them before they go to bed. Leave on a lamp with a low wattage bulb or night light, or stick luminous tape on the wall as a guide.
A pot by the side of the bed may help - this used to be common practice for most people when lavatories were outdoors and many older people may be comfortable using such an aid.
The problems are most severe if the person with dementia lives alone. The ability to cook even simple meals may be lost. Just buying food and keeping it fresh may be beyond their capacity. They may eat food that has gone off and not recognise it tastes bad. The gas cooker may be switched on and left unlit, pots may be left to burn. Poor physical co-ordination can lead to burns and scalds or cuts from utensils. The combination of these problems may lead to malnourishment in many people with dementia who live alone.
For the person with dementia living with others, the problems are diminished if the carer cooks for them -the problem in this situation may be for the carer who is unused to buying or cooking food, for example a husband carer who has to learn how to take over these responsibilities from his increasingly confused wife.
There are safety devices which can be fitted to cookers to prevent some of these problems. Invest in an electric kettle that switches itself off. Remove sharp knives and other potentially dangerous utensils. Try to arrange for the meals-on-wheels service to call, but check to see that the person knows how to open the container. You may need to put the food out on a plate for them if they don't understand what the carton is for. Leave food that doesn’t need to be cooked e.g. sandwiches, cold meat, biscuits in a place that the person will easily see. You may need to visit daily to help or supervise.
People with dementia may forget whether or not they have eaten. Some don't want to eat and claim they have just done so, others want to start on the next meal as soon as they have finished the previous one. They may develop strong dislikes of certain foods and cravings for others. Some don't know how to eat. They may forget how to use cutlery and be generally very messy. They may play with their food, not realising it is to go in their mouth. They may be confused by different foods on one plate. Others have physical problems, they can't chew properly and have difficulty swallowing, which could lead to choking. Some forget to drink and may become dehydrated.
Have regular times for eating, and eat with the person you care for. If the person often wants to start another meal soon after the last one, keep some washing up in the sink to show the remains of the last meal. If they will eat only certain foods, you may have to ask your doctor about diet and vitamin supplements.
Don't worry about table manners -spoons are easier than knives and forks, and fingers came first of all! Use plastic table cloths and place mats so any mess can be easily cleaned up.
You may have to remind them how to eat by talking them through each stage, or show them by eating something yourself. Sometimes spoon-feeding may be necessary. Try to keep food simple. Cut it up small or keep it to one texture -soft, thick foods are easier to swallow. A mixture of liquid and solid at the same time may lead them to swallow instead of chewing and could result in choking. If choking occurs fluid thickeners may be required; your GP should refer the person with dementia to a speech and language therapist for assessment. Check that dentures fit properly and are kept clean.
Make sure that the person has several drinks a day (about a litre and a half a day is about right) and that the drinks are not too hot -he/she may have lost his/her judgement and could scald him/herself. If the person forgets to drink they could easily become dehydrated, which could lead to constipation, a bladder infection or a sudden worsening of their confusion.
6. Going Out Alone and Shopping
The most worrying problem for many carers is the safety of the person they care for. Traffic presents a threat on even the quietest roads and crowded, busy streets or shopping centres can confuse and alarm. The person with dementia may not recognise even familiar places and become lost and frightened. Other people are not always helpful and may interpret confused behaviour as drunkenness.
If they are shopping there are the additional problems of remembering what they went out to buy and handling money.
Many carers are rightly reluctant to discourage the person with dementia from going out alone as it is often the last thing that they can do on their own. Encourage the person to walk in a park or other safe area away from traffic and crowds. If this is not possible you may have to accompany them -perhaps take them part of the way to a point where they cannot go wrong, or meet them on the return journey. One carer relied on a well-trained and trusted dog to help her husband cross the road and bring him home safely.
Persuade them to carry some form of identification -an identity bracelet or card explaining that they might become confused can be useful. Don't forget to put their name and a contact telephone number on it for additional reassurance. A more simple option might be to sew a name tape with this information on it into the pocket of their favourite coat.
If the person is shopping, give them a clear note and only the amount of money they will need. They will be able to buy only one or two straightforward items. If they need clothes you will have to go with them. Don’t be embarrassed to explain the problem to shop assistants who are usually most helpful once they understand.
It can be dangerous for people with dementia to drive, even in the early stages of the illness. They become a hazard on the roads because their judgement is impaired and their reactions are slowed. Many road traffic accidents are caused by drivers who have dementia and many members of the public as well as the actual drivers and passengers are seriously hurt each year as a result.
Once you feel that the person with dementia should stop driving, broach the subject with them gently. Some may be pleased to be rid of the responsibility driving brings. Others, who resent their loss of independence, may find giving up particularly hard. If gentle persuasion doesn't dissuade them from driving, you will have to take firmer action. In the first instance, offer to drive yourself (if you can), or suggest using a taxi or public transport. If needs be, hide the car keys or immobilise the car (go to a garage to discuss the easiest way to do this). In the longer term, it may be best to use an authority, such as your doctor, a solicitor, or police officer, to persuade the person you care for of the danger they put themselves and others in if they continue driving. Remember; many insurance companies require a medical certificate of fitness before insuring older drivers and a driver who has an accident who has not declared his/her illness will not be covered. Sometimes having their licence revoked by the DVLC is the only way that a person with dementia will be stopped from driving. Having a third party i.e. a professional make the decision to inform the DVLC takes the pressure off the carer and gives the dependant someone outside the care-giving situation to blame. An assessment of factors that affect a person’s driving ability can be undertaken by the clinical psychologist based with the Community Mental Health Team for Older People or by the Driving Assessment Centre based at Rookwood Hospital. It can be difficult for the carer to accept that the person can no longer drive and to have to give up the convenience of having a car. However, this needs to be balanced against the terrible consequences that an accident could bring.
8. Alcohol and Cigarettes
If the person with dementia is in the habit of drinking alcohol in moderation, there is no reason why this should be stopped. Having a drink may be one of their remaining pleasures, and something you can enjoy together. You should take care, however, that alcohol is not left out where the person can help themselves. One carer admitted to having to replace the sherry with ginger ale to limit her husband's alcohol intake. If they are on medication, remember to check with the doctor or pharmacist that the drugs mix safely with alcohol.
The use of cigarettes represents a greater danger. People with dementia are not safe with matches, and they may smoke in bed, leave lighted cigarettes on the edge of armchairs, or throw them away in wastepaper baskets.
If the person you care for really needs to smoke, it should only be under strict supervision. Far better is to dissuade them from smoking. If persuasion fails, choose a moment when they are otherwise occupied to remove their cigarettes. It may be reassuring to know that many people with dementia forget to smoke and so don't miss the habit once it is broken. Others do well with nicotine replacement therapy, which can be gradually reduced - talk to your GP if this seems like a good idea.
Wandering is a common and difficult problem to deal with. People with dementia may wander aimlessly or anxiously around the home, or wander around the neighbourhood having slipped secretly out of the house. They may wander long distances to old haunts and get lost. You will be worried about their safety and their own bewilderment or fear, especially if they cannot find their way home or cross the road safely.
If you can work out a reason for the wandering you may find a solution. Sometimes wandering results from general restlessness and boredom and is a sign that the person needs more stimulation or physical activity. They may be searching for someone or things they think they have lost. Keeping photographs or personal possessions on view may help. Often the person feels insecure and may need both the emotional reassurance that you care and the concrete reassurance of things being kept in the same places and routines maintained. Wandering frequently starts after a visit to a strange place -after a holiday, for example -or after a change of habit, such as starting at a day centre. In which case it may help if you go with them a few times until the change becomes more familiar. Moving home can be very distressing for a person with dementia and should be avoided if at all possible.
If you can find no apparent reason for the person's wandering behaviour, then you may have to prevent them wandering if you feel they will be at risk. You may be able to fix up an alarm that will alert you if the person goes beyond a certain point e.g. opens the back door or you may need to install a ‘dead lock’ on a street door which needs a key to open it from the inside.
An identity bracelet worn by the person giving details of how you can be contacted is an additional safety measure. If they do still manage to wander off, contact the police who will then keep a look out for him/her. Keep some recently taken photographs that can be used in case they do go missing.
10. Night Disturbance
Many people with dementia are restless at night and disturb the whole household by wandering and making a noise. This can be one of the most wearing problems for carers. Sometimes the person's sleep pattern is reversed and they are awake at night -thinking it is day -and asleep for long periods during the day.
Again, if you can find a reason for this problem you might be able to alleviate it. Some of the more obvious reasons may be that the person:
Make sure that they have been to the toilet before going to bed. Try to discourage long sleeps during the day, perhaps by increasing physical activity. Try to make them as comfortable as possible. A bedside lamp with a low-wattage bulb left on may help if the person wakes up frightened. Sometimes talking gently to the person will reassure them and send them back to sleep. If they think it's daytime or they think they need to get up for some reason you might have to go along with them as arguing could lead to upset. One carer spoke of her husband who regularly woke at night wanting to go to the shops. She always said, "All right then, let's go", walked him round the room and back to bed by which time he'd forgotten where he was going.
If nothing seems to work and the disruption to your own sleep makes you feel unable to cope, you will have to ask your doctor about night medication for a short time until a normal sleep pattern is re-established.
11. Repetitive Questioning and Actions
This problem can be extremely irritating for carers! Usually the person is unaware of what they are doing, although their behaviour may reflect underlying anxiety or insecurity. Repetition may also arise from frustration or boredom and can be a hard-to-break habit.
Try to remember that this problem usually stems from the person's memory impairment -they are forgetting what was said or done a few minutes earlier -and is not usually a deliberate act. It could be that the person's needs have remained unmet in some way, for example they may still be hungry or need to go to the toilet. There's no point in getting angry or saying, "I’ve just told you ten times”. If possible try to identify the person's underlying needs and meet them. If the trigger was removed, like giving them some money when they ask for it (their need being financial security), then the repetitive behaviour might stop. Alternatively, try to distract them by talking about something else or giving them a different activity, like listening to music or washing the dishes. Sometimes writing down the answer helps. Reassuring them of your concern may reduce insecurity. If you find yourself getting very stressed take a short break from the situation in another room or the garden.
12. Clinging Behaviour:
Some people with dementia become reluctant to let their carer out of their sight and follow them from room to room. This can be very distressing for you, as it means you're allowed no privacy, sometimes even to go to the toilet.
The person probably behaves like this because they're feeling insecure in some way, and the care-giver represents security. Perhaps when they see you leave the room, they forget that you will come back and get frightened.
While you're gone, give them some simple task to do or use the clock to point out when you'll return. Reassure them that you'll be back when the task is finished or when the clock reaches a certain time.
If this is a regular problem for you, it is important that you use sitters or find some other way of getting a break.
13. Losing Things and Accusation of Theft
Many people with dementia really do forget where they have put things, others deliberately hide things and then forget. In either case they may accuse you or someone else of stealing the missing items. The items lost may seem unimportant or trivial to you, but to the person with dementia they may hold some special value or meaning.
Try not to take the accusations too seriously. Don't deny the charge and get into an argument -it won't be possible to reason with him/her and he/she will become more upset. Try to find out if they have a regular hiding place, such as under the mattress or in an old shoe. Keep replacements of essential items, such as keys or glasses. Put away or lock up valuables, money or dangerous things. Get into the habit of checking rubbish bins before emptying them. Make sure that other people who help to care for the person are aware of the problem.
Many people with dementia may be occasionally incontinent and wet the bed. Regular bladder incontinence and bowel incontinence is less usual. But even the occasional accident can be difficult to deal with. It is embarrassing and degrading for the person and distasteful for the carer who has to clean up after them.
If incontinence becomes frequent or develops suddenly always check with your doctor, as there could be an underlying medical reason.
There could be several reasons for incontinence:
15. Delusions and Hallucinations
Delusions (fixed false beliefs not open to reason) are ideas that are imaginary, but that seem very real to the person experiencing them. Someone suffering from delusions may believe that there are some people who want to harm them, or that objects which are simply mislaid or hidden may have been stolen, even by members of the family.
Someone suffering hallucinations (abnormal senses with no external stimulus) sees or hears things that aren't actually there. They may see strange people sitting in the room with them, or hear dead relatives talking-to them.
Both delusions and hallucinations are imaginary and not real, but they are very real to the person experiencing them and can give rise to genuine feelings of anxiety or panic. They should therefore be taken seriously.
When the person is experiencing a delusion or hallucination don’t argue with them or tell them they are mistaken. Remember they are outside the person's control so becoming angry or impatient with them will not help. If the delusion concerns a missing object, for example, try to find it, rather than deny it has been stolen. If the person is distressed by a hallucination, explain that you understand that they are seeing or hearing things and the feelings these cause, but also that other people cannot see or hear what frightens them. Try to comfort them, perhaps by putting an arm round them or holding their hand, and try to distract their attention onto something real nearby.
If the person you are caring for begins to suffer from delusions or hallucinations you should see your doctor. It could be that the side effects of medication are causing the problem, or the problem itself might respond to medication.
16. Sexual Relationships
The sexual relationship is very private and personal and not something that many carers can talk about easily. While dementia does not necessarily affect sexual relationships, the person’s attitude to lovemaking may alter. They may not respond to affectionate gestures that you make or they may lose interest altogether. They may simply forget about it.
You might find that you lose interest yourself because of the stresses and tiredness brought on by caring for the person with dementia. You may also find it difficult to make love with a person whose personality has changed so much.
Occasionally, a person with dementia may become more sexually demanding. As the illness progresses, the person with dementia may no longer be able to consent to a sexual relationship.
There is no simple solution to such a complex and sensitive issue as this. If you find that your sexual relationship is becoming a problem, you should try and talk to an understanding person about it. There are counsellors trained to talk to people about such problems. Your doctor should be able to put you in touch with someone, or you could call the Solace service (see Local Services).
17. Inappropriate Sexual Behaviour.
In some cases a person suffering from dementia may exhibit inappropriate sexual behaviour, such as undressing in public, exposing themselves, or aimlessly fondling their genitals. In fact, such behaviour is unlikely to be sexual at all. Appearing naked in the sitting room may simply be the result of forgetting that they should get dressed, or of losing their way to the bathroom. A man found 'exposing' himself may only be trying to urinate in an unsuitable place. One carer's mother seen 'exposing' herself in the street had wandered out in the cold in her night-dress and pulled it up around her shoulders to try and keep warm.
Behaviours such as these can cause severe embarrassment to carers, but understanding the problem -and explaining it to others -should lessen your embarrassment. If the person touches their genitals in public, don't make a scene, but try to discourage them gently. If they appear naked, or start undressing themselves, remove them calmly to another room. It may be worth checking that clothing is not uncomfortably tight, or fastenings broken. In those rare cases where people complain and police become involved a truthful explanation usually receives a sympathetic response.
18. Verbal and Physical Aggression
Usually aggression in dementia is not planned or premeditated, it is the result of confusion and frustration, the response to which is poorly controlled because of the disinhibition that dementia brings.
A person who has never used bad language in his/her life before may start to swear, or a previously calm and gentle person might become short-tempered and hit out in anger. When it is directed at the carer it is especially distressing.
Say you are sorry for the person's upset and ask them to tell you what is troubling them. Gently encourage them to talk and if they are not too angry, hold their hand to comfort them. Do not raise your voice as this will heighten their aggressive feelings.
Whatever you do, do not respond to aggression with aggression. It will only make matters worse. Instead, stay calm yourself -count to 10 if need be -and try to distract their attention. Find out what brings on the reaction -frustration at a difficult task, a certain person’s presence, rushing to be ready on time -and avoid it in the future. Don't forget that there may also be a simple explanation for such a change in behaviour, like discomfort from constipation or pain from arthritic joints.
If episodes of violence and aggression become frequent, you should talk to your doctor or case manager about medication which may help.
19. Failure to Recognise People
A person with dementia often fails to recognise familiar faces. They may recognise you as someone they know, but be unable to put a name to your face or remember your relationship to them. This is obviously distressing for a spouse carer who has been very close to his/her wife/husband. The problem here is that the person's long-term memory is being affected by the dementia and they are 'living in their past'. Perhaps if you asked them how old they were they would think of themselves as a young person -so it is not surprising they don't recognise you or mistake you for a dead relative (especially if you are a son or daughter carer who resembles their parent!).
Keeping out large photographs of family occasions through the years, so that the person with dementia sees that he/she has also grown older has helped some families. Understanding what is happening can relieve the distress carers feel in such a situation. If it is not possible to re-orientate the person to the present -who you are and how old they are, etc., then talk about important people from the past (their present) and about the special endearing relationships which they have had. They may talk about you as if you were a much younger person and by sharing photographs or mementoes you can be brought closer together.
LOOK AFTER YOURSELF!
Finally, it is important that you have support with your care-giving, both from formal services and from relatives and friends. Even if you think you don’t need help now, find out what is available and how long it takes to arrange, as in some cases it may be weeks or even months. Find out about having a Carer’s Assessment (see section). Then, when the time comes when you do require help, you can start the process in good time. Don't be afraid to ask for help, as some people might think you want to cope single-handedly.
You need to take your own needs seriously. Over-doing things could result in physical illness or injury, for example high blood pressure as a result of stress or a hernia from helping the person you care for up from bed. Such physical problems could jeopardise your future caring role. If you feel you are beginning to have problems in coping ask for help from services in your area that are listed in this publication. Make sure you have regular breaks from caring -either from a home sitter or by way of day care or respite care for longer periods.
Consider your emotional needs too. Caring is a very stressful experience. Talk about your feelings with others who understand what you are going through and don't keep things bottled up inside. Find out if there is a Carers’ Support Group (see section) in your area and go along and meet others who have similar problems. A great deal of mutual support can come from these meetings and provide a tremendous release of tensions which have built up. Alternatively, if you are a private sort of person, call the Solace service and have a chat with volunteers and past carers who have a great understanding and empathy for your situation.
Please Note: 'Practical Guidelines for Care-giving' and 'Dealing with Common Problems' have been taken from the Health Education Council booklet 'Who Cares?' (1992) and amended for inclusion here.