Here we look at the everyday challenges that a caregiver has to cope with and suggest ways in which these can be met.
Bathing and personal hygiene
“Make bathing an enjoyable, relaxing and stress free activity – not a forced chore.”
Someone with dementia may forget to bathe, not recognise the need, or have forgotten what to do. In this situation you must respect the person’s dignity when helping. Associate washing with an activity, such as going to a restaurant or visiting friends, this may prompt the person to wash. Rather than forcing the person to wash, try to make it enjoyable and relaxing. Use praise and encouragement when the person is freshly bathed, rather than criticism of their cleanliness. A shower, or stand-up wash may be easier than a bath. However, if the person has not been used to a shower it may seem alarming and is best avoided. Simplify bathing and allow the person to do as much as possible unaided.
They may know they need to wash, but may have forgotten what to do. Gently remind them of the required steps as they wash themselves. If the person appears embarrassed when bathing, keeping portions of their body covered may be helpful. If the person refuses to be washed, try again later when their mood may have changed. If you constantly have problems with washing, seek support and get someone else to do it. Finally think about safety. Bathrooms can be wet and slippery, so use grab rails, non-slip mats or an extra chair. These all help prevent accidents.
Dressing
“Make dressing an enjoyable shared activity.”
A person with dementia often forgets how to dress and may not recognise the need to change clothes. Use dressing as a simple way of keeping the person active and helping them retain their sense of independence and self-esteem. Allow plenty of time for dressing, make sure the atmosphere is calm and warm. If the person is struggling, lay out clothes in the order they should put them on, or verbally suggest which item of clothing the person should put on. As the disease progresses, you may have to pass the items of clothing to the person and explain how or help to put the clothes on. Some items of clothing are easier to put on than others. Use wide-necked tops, baggy trousers and non-skid slip-on shoes, as these all help make dressing easier. Try to ensure that the person with dementia is comfortable with the clothes selected, involving them in the selection process.
Toileting and incontinence
“Confusion is often the cause of incontinence, so limit large drinks, label the toilet door with signs and dress the person in loose clothing.”
The person with dementia may lose the ability to recognise when to go to the toilet, where the toilet is, or what to do when in the toilet. Confusion is often the cause of incontinence, but sometimes there are other possibilities so get professional advice. There are some steps you can take to reduce the risks of accidents occurring. Limit large drinks last thing at night and create a schedule for going to toilet, for example regularly throughout the day and before getting into bed. Frequent toilet trips reduce the risk of accidents happening. During the night consider waking the person regularly and suggesting they go to the toilet. Remember that a person with dementia can be easily confused and might need taking to the toilet, especially if it is not near the bedroom. A chamber pot or commode by the bedside may be helpful in an emergency. Around the house, use signs with bright colours and large letters to label the toilet door and leave it open to make it easy to find.
Finally, make sure that clothing can be easily removed, as this makes going to the toilet easier. Skin can be damaged if left exposed to urine, so make sure that the person with dementia showers or washes daily. If you cannot shower the person immediately after an accident, consider using baby wipes to clean the affected skin, and carrying spare clothing with you. Incontinence means more work for you as a caregiver, which can be both upsetting and distasteful. These feelings are understandable and it is important that you contact someone to talk about the problem and your feelings. Your doctor or nurse and members of support groups will have come across these problems before and will be able to offer you help and support.
Cooking
“The ability to cook may be lost.”
Assess how well the person can do their own cooking. While it is important that they maintain their independence for as long as possible, their health must not suffer. Poor physical condition, due to dementia, can result in the person injuring themselves with burns or cuts when cooking. Installing safety devices and removing sharp utensils from the kitchen can reduce chances of injury. For the person, their ability to cook may diminish in the later stages of dementia. It may be hard for them to give up this role, if they are used to looking after themselves, their family or partner, so try and make cooking an enjoyable shared activity. The inability to look after themselves poses problems if the person lives alone, with an increased risk of injury. Provide meals, or a meal service, and try to see that enough nutritious food is eaten.
Eating
“Eating is important! So get help if you are having difficulty coping.”
People with dementia often forget if they have eaten, or how to use utensils. You may have to remind the person how to eat. Consider suggesting the use of a spoon instead of a knife and fork. Finger food is easier to manage and not as messy. You can also cut the food up into small pieces to prevent choking. Remind the person to eat slowly and be aware that they may not be able to sense hot or cold, and could burn their mouth on hot food or liquids. As the disease progresses, physical problems may arise such as not being able to chew properly or swallow. You may need to serve different portions of food one at a time to make eating easier . In the later stages of dementia the person may need to be fed or you may have to mash or liquidize all food. If the person has difficulty swallowing, you may need to consult your doctor to learn a technique to stimulate swallowing..
Driving
“Driving is a symbol of independence, so approach the subject of no longer driving with care.”
People with dementia may no longer be aware that their judgment is impaired and reactions slower. Research suggests that a proportion of people in the early stages of dementia retain the ability to drive, but this ability can be lost easily. This problem can be difficult to handle, so you should approach the subject with care. Discuss the subject with the person gently, and suggest using public transportation instead of driving. If the person has stopped driving, try to maintain their independence by suggesting they organize a taxi or mini-cab account. If driving remains a problem, consider selling the car if you do not need it yourself. This way the person with dementia may not be continually reminded of the car. If you still need a car, consider making the keys hard to find, or suggest driving for the person. If you cannot dissuade the person from driving, it may be necessary to consult with your doctor or the drivers licensing authority.
Alcohol and Cigarettes
“Supervise drinking and smoking to make sure accidents don’t happen.”
There is no problem for a person with dementia drinking alcohol in moderation if their medication allows. However the person may forget they have just had a drink and so have another one. This cycle can leadto repetition with the person becoming drunk or unmanageable. In these cases, try to reduce the amount of alcohol being drunk, by either reducing the number of bottles of alcohol available in the drinks cabinet, or emptying or diluting some of them. It might also be worth distracting the person with another activity, so that they do not think about drinking. Cigarettes introduce a greater danger because of the risk of fire and damage to health. Always supervise the person when smoking, or try to discourage smoking altogether. Make sure that the clothes they wear and the furniture in the house are fire-resistant. Consider fitting a smoke alarm, which can alert you to any danger.
Sleeping Problems
“Increasing daily activities and discouraging sleeping during the day, will help the person sleep at night.”
The person with dementia may be restless at night and disturb the family. People with dementia can get disorientated in time and no longer recognize the difference between night and day. This can be the most exhausting problem as a caregiver. Establishing a routine to keep the person with dementia busy is the first priority. The routine should keep them as busy and active as possible and discourage sleeping during the day, for example, long walks add more physical activity to the day and should help the person sleep at night. Don’t feed the person a large meal in the evening, and after the day’s activities, keep the evening fairly quiet and relaxed. As bedtime approaches, make the person as comfortable as possible, with a warm and inviting bedroom. If practical measures fail to improve matters, you may need to use sleeping pills in order to cope. Generally, these should be avoided in people with dementia. Your doctor can advise you on the best course of action.
Repetitive Questioning and Behavior
“Repetitive questioning is caused by memory problems giving a general feeling of insecurity.”
Dementia can make a person forget what they have said or done from one moment to the next, leading to repetitive questioning and actions. This may cause irritation for you the caregiver. Rather than answering the question again and again, it may be helpful to say that everything is fine and try to make the person more secure. It might help to write the answer down. If the same question comes up again, you can direct the person to a written answer. Try to distract the person by changing the subject or giving hugs, if appropriate for the person.
Clinging
“Clinging behavior can be difficult; try to deal with clinging behavior by using memory joggers, activities or sitters to distract the person while you step away.”
The person with dementia may become extra dependent on you and follow you everywhere. This can be frustrating, difficult to handle, and rob you of your privacy. The person may act this way as a result of feeling insecure and fear that when you leave them, you will not return. Whenever you leave a person with dementia, it is important that you tell them you will come back. If necessary write this information down for the person. Another method is to provide them with something to occupy their attention while you step away. If you need more space and time to yourself, you may want to call on a sitter. The sitter can be someone paid for, or a member of your family or a friend. Either way, this will give you time to relax without having to worry about the person. Such breaks help you cope with caring for someone with dementia.
Losing Personal Items
“Don’t argue about lost items, they can usually be found after a quick search.”
An inevitable part of dementia is forgetting where objects were placed. This behaviour is caused by insecurity, combined with a sense of loss of control and of memory. In some cases the person will accuse you and others of taking the missing objects. It is vital to respond to the accusations without confrontation or anger . The first step is to agree with the person that the item is lost and help find it. It is pointless getting into an argument over the loss and will only upset you and the person. What often happens is that when items go ‘missing’, the person will hide them in a place to prevent them from disappearing again. They then forget about this hiding place. If you look carefully, you will probably find the hiding place, so check these first in the search for the missing item. You should make sure that you keep copies or spares of important items, such as keys, spectacles and documents. Try limiting the amount of valuables and money left about the house. This reduces the chance of a real theft occurring. Finally, always check waste baskets before emptying them, this prevents accidental loss of items.
Hallucinations and Delusions
“Hallucinations and delusions are real to the person so deal with them, don’t dismiss them”
It is not uncommon for the person with dementia to experience hallucinations or delusions. If the person is experiencing an hallucination, they might see or hear things that are not there; for instance, figures at the foot of the bed, or voices in the room. Do not dismiss the validity of what the person has just seen, but distract them by drawing their attention to something real in the room. Hallucinations can be associated with poor vision, so it is worth a trip to the opticians for a check-up. Keep rooms well lit to ensure that the person is not misinterpreting what is going on around them. Also, check with your doctor about medications that are being used, they may contribute to the problem. A delusion is a false belief. For example, the person may believe that they are under threat of harm from the caregiver. To the person this delusion is real and causes fear, and may result in distressing self-protective behaviour. Do not argue about the validity of what they believe, but try reassuring and comforting them if they are frightened. Your calm voice and holding hands gently can help calm the person down and bring them back to reality.
Sexual Relationships
“Don’t be afraid to discuss this and related issues with professionals trained to listen and help.”
For some couples, sexual intimacy continues to be a satisfying part of their relationship, but dementia may alter the person’s attitude. Gentle cuddling and holding may be mutually satisfying, and will let you know if he or she is able or inclined to engage in further intimacy. It is wise to be patient. The person may not respond in the same way as before, or may seem to lose interest. The opposite may occur too. The person may make excessive demands for sex, or behave in a manner that makes you feel uncomfortable. If this is a problem, you may consider sleeping in a separate bedroom. Whether this becomes a permanent feature is a difficult decision to make, but one you must make if necessary. You may feel guilty about yours or your partner’s needs. Seek help from other caregivers or professionals you trust and don’t be afraid to discuss these and related issues with a professional trained to understand and help you manage.
Inappropriate Sexual Behavior
“Remember, stay calm, avoid confrontation, and distract the person with another activity.”
A person with dementia may display inappropriate sexual behavior, but it is rare. Behavior may include undressing in public, fondling genitals, or touching someone in an inappropriate way. In responding, try not to over-react and never forget that it is the disease taking effect. Distracting the person with another activity is a useful way of defusing a situation. If the person removes their clothing, then calmly, quickly and gently discourage the behavior and encourage another activity.
Sexual Relationships
“Don’t be afraid to discuss this and related issues with professionals trained to listen and help.”
For some couples, sexual intimacy continues to be a satisfying part of their relationship, but dementia may alter the person’s attitude. Gentle cuddling and holding may be mutually satisfying, and will let you know if he or she is able or inclined to engage in further intimacy. It is wise to be patient. The person may not respond in the same way as before, or may seem to lose interest. The opposite may occur too. The person may make excessive demands for sex, or behave in a manner that makes you feel uncomfortable. If this is a problem, you may consider sleeping in a separate bedroom. Whether this becomes a permanent feature is a difficult decision to make, but one you must make if necessary. You may feel guilty about yours or your partner’s needs. Seek help from other caregivers or professionals you trust and don’t be afraid to discuss these and related issues with a professional trained to understand and help you manage.
Wandering
“If the person is lost, seek help immediately and don’t delay calling the police.”
This is a worrying problem, which needs managing. The person with dementia may wander around the home or leave the house and wander around the neighborhood. If possible, prevent them from leaving the home without your knowledge, by making sure your home is secure. Safety is a primary concern when the person with dementia is out in public alone. Make sure they have identification on them and keep an up-to-date photograph of them, in case they get lost. If the person is lost, then alert your neighbors, friends and local police immediately. It is worth warning the police in advance of the person’s condition and the possibility that they may get lost. Check the usual shops that they visit to eliminate those from the search. When the person is found, avoid confrontation and showing anger – speak calmly, with acceptance and love. It is not their fault, but a problem associated with dementia.
Violence and Aggression
“Violence and aggression are caused by the illness.”
From time to time, the person may become angry, aggressive or violent. It is not a personal attack on you, but a part of their illness. There are many reasons why a person with dementia may feel angry. They may not like being helped with things they used to do on their own, or may simply be frustrated due to an inability to do things. These short-term changes happen for a variety of reasons such as the person’s sense of loss of social control and judgment, loss of the ability to express negative feelings safely, and loss of the ability to understand the actions and abilities of others. It is therefore worth finding and avoiding the causes of unwanted certain reactions. If the person feels angry, aggressive or violent, keep calm and try not to show fear or alarm. Give them more space and try to draw their attention to a calming activity. This is one of the most difficult things to cope with for a caregiver, and if violence occurs often, you will need to seek help. Talk to someone for support, and speak with your doctor about help with managing the person..
Depression and Anxiety
“Depression is serious but treatable, so seek help and advice on how to deal with it”
The person with dementia may experience depression and be withdrawn and unhappy, speaking and thinking slowly. Dementia is a disabling disease, and it is understandable for a person with dementia to be depressed at times, so don’t expect the person to recover from depression immediately. Depression and anxiety can affect daily routines and interest in food, resulting in declining health. It is essential to provide more love and support for the person during these periods. Contact their doctor, who will be able to help or offer a referral to a counselor, psychologist or psychiatrist. Treat this problem seriously and seek help.