ADAP

Tips to Meet Daily Challenges

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 recognize 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 recognize 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 recognize 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 colors 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 his or her 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. Ask your doctor to put you in contact with a local occupational therapist, who could give you further information about devices that help with eating.

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. Depending on your country, rules will apply whereby people with certain medical conditions can no longer drive, or need to re-take a driving test. Make sure you and the person adhere to your local regulations.

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 lead to 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 i ” n 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 from a support group, 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 behavior 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 wastebaskets 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 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 behavior. 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. In some countries there are people with special skills in this area, such as psychologists, social workers or counselors who can provide advice and guidance.

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.

Wandering

“If the person is lost, seek help immediately and don’t delay calling the police.”

This is a worrying problem that 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.

The personal and emotional stress of caregiving and looking after yourself

Alzheimer’s disease not only affects the person with dementia, it affects the entire family. The greatest burden is placed on the caregiver. The personal and emotional stress of caring for people with dementia are enormous and you need to plan ways of coping with the disease for the future. Understanding your emotions will help you successfully cope with the person’s problems as well as your own. You are an important person in the life of the person with dementia. Without you the person would be lost. This is why it is essential to take care of yourself.

Here we look more closely at your emotions and needs. The topics we will talk about include:

• Grief
• Guilt
• Anger
• Embarrassment
• Loneliness
• Family support
• Sharing problems
• Taking time-out
• Know your limits
• Not blaming yourself
• Seeking and taking advice

Grief

“Try to accept that feelings of guilt are a natural response to the situation.”

Because of Alzheimer’s disease, you may feel that you have lost a companion, friend or parent, and grieve for the way they used to be. Many caregivers find themselves shifting between hope and despair, thinking the person may get better, then knowing they will not. Also, because dementia is progressive, just when you think you have adjusted, the person may change again. It may be devastating when the person no longer recognizes you.

Try to focus on what makes life as pleasant as possible for you both, and look for the parts of the person’s personality that still remain.

It is important that you find someone to talk to. Sharing your feelings with family, friends and other caregivers is one way of coping with the grief. Many caregivers have found that joining support groups is a good way to get encouragement and assistance to keep going.

Guilt

“It is common to feel guilty.”

It is common to feel guilty for being embarrassed at the person’s behavior, for anger at the person, or for feeling that you can not carry on and are thinking about nursing home placement.

The decision to move someone you care about or love into a nursing home is a difficult and painful decision to make. Yet caring for someone with dementia can become a 24-hour occupation and there comes a time when short breaks of respite care will not provide sufficient relief. Eventually, you risk damaging your own health if you do not consider moving the person to a home, where they can get the 24-hour help they need.

You may find it helpful to talk to other caregivers and friends about the feelings of guilt. Just because the person you are care for goes to a nursing home, it does not mean giving up your caregiver responsibilities. Indeed the care home may be grateful for your help at mealtimes or with bathing. Continuing to help in this way will help relieve your feelings of guilt.

Anger

“Getting angry is normal.”

It is important to remember that you are not perfect. It is normal for you to lose your temper and get angry at times – as do all other caregivers. Your anger may be mixed. It may be directed at the person, yourself, the doctor, or the situation, depending on the circumstances. It is important to distinguish between your anger at the person’s behavior, resulting from the disease, and your anger with the person, as this will help you to cope better.

Try to understand the person’s behavior that is upsetting you and see if you can stop or reduce it, as it will not help either of you to lose your temper. If you think you are going to lose your temper, go into another room or into the garden and give vent to your feelings away from the person with dementia.

It may be helpful to seek advice from friends, family, or a support group. Sometimes people feel so angry that they are in danger of hurting the person they care for – if you feel like this, you must seek professional help. Many local support groups have caregivers’ contacts, with whom you can talk to and get advice from. Use these people to get help when you need it.

Embarrassment

“Ease any embarrassment by taking the courage to explain the situation to people around you.”

You may feel embarrassed when the person displays inappropriate behavior in public or disrupts the neighbors. It may take some courage, but by explaining the disease and the concept of dementia to friends and neighbors, you will help them understand the person’s behavior.

Look for support from other caregivers who have experience of similar problems. Sharing your feelings with other caregivers will enable you to cope better and the embarrassment may fade.

Loneliness

“Try to maintain friendships and keep social contacts, as loneliness makes caregiving harder.”

Many caregivers withdraw from society and, along with the person with dementia, are confined to and around their homes. Being a caregiver can be lonely – you may have lost the companionship of the person, as well as social contacts, due to the demands of being a caregiver.

Loneliness makes coping with the problems of caregiving harder, so try to keep in contact with friends, and see if they can offer extra help. Explain the problems of dementia and that they, as friends, can help by providing you, or the person with dementia, some companionship.

Maintain your own social engagements and thus take breaks from looking after the person. This will give you time and space to recharge your batteries and help you feel better about yourself.

Consider joining a support group. Here you will find people with similar problems, who can help you get over the rough patches and provide a social life, where you do not have to be separated from the person you are caring for.

Family support

“The family can be the greatest source of help.”

For some caregivers their immediate family is the greatest source of help. For others it is the biggest source of distress. If this is the case, you may feel that you have been left to cope as a caregiver on your own, which can lead to bitterness and resentment. If you are feeling distressed because family members are not supporting you, try to find out why they are not helping. It may be helpful to call a family meeting to discuss the care of the person.

If you cannot get help from your immediate family then try to get help from elsewhere. Accept help from other family members and do not take on the burden of caring alone. Try to arrange breaks from caring to give you the respite care you need. You may find that by looking after yourself, you feel less stressed about the lack of family support.

Sharing problems

“Share your problems.”

You need to share your feelings about your caregiving experiences with others. If you keep them to yourself, it may be more difficult for you to look after the person with dementia, as you may begin to resent them or get angry with them. Try to think ahead and have someone to turn to in an emergency.

You will most likely find that your friends have not stopped liking or caring about you, and would probably be quite happy to listen or help if you let them know how. Try to accept support when others offer it, even if you do feel you are troubling them.

If you can realize that the problems and feelings you are experiencing are a natural response to your situation, it will be easier for you to cope. If you do not want to bother your friends then seek professional help from the person’s doctor or the local support group.

Taking time-out

“Make time for yourself.”

It is essential to make time for yourself. As a caregiver you risk isolation by looking after someone with dementia. This can cause loneliness and sometimes anger or resentment towards the person with dementia. Taking time-out allows you to spend time with others. Enjoy your favorite hobbies and, most importantly, enjoy yourself.

Support groups, social services and some nursing homes provide day care help, where you can leave the person with dementia in safety and comfort while you can enjoy time to yourself or with the rest of your family. Use the support available to you, so that you can have a rest.

Know your limits

“Be aware of how much you can take, and seek help if caring becomes too much for you.”

How much can you take before it becomes too much? Looking after someone with dementia is a demanding role, which may be complicated by:

• your own physical or health problems
• lack of sleep
• financial uncertainty.

Most people will come to realize how much they can take before caring becomes too demanding. If your situation is too much to bear, take action, seek additional support, and call for help to prevent or avoid a crisis.

Not blaming yourself

“Dementia is no one’s fault, the disease is the cause.”

Do not blame yourself or the person with dementia for the problems you encounter. This is particularly hard if the person cannot remember who you are or if they are violent. Remember the disease is the cause not the person.

If you feel your relationships with friends and family are fading, don’t blame them or yourself. Try to find what is causing the breakdown and discuss it with your friends and family. These relationships can be a valuable source of support for you and the person with dementia.

Seeking and taking advice

“Learning to seek and take advice can help you be a better caregiver.”

Learning to accept help may be new to you. More often than not, family, friends and neighbors may want to do something to help you and the person with dementia.

Self-help groups (a group for caregivers) can be another source of help for you. They provide an opportunity to get together with other helpers and caregivers, who may already have experienced the problems you are facing. Through their combined experience, these groups can be an invaluable source of help, comfort and encouragement.

Your doctor, community nurse or social worker may also be able to help you. They will be able to provide you with help and advice about looking after the person and the support available. If they cannot answer your problems themselves, they will usually be able to put you in contact with someone who can.

Getting help

It is the mission of ADAP to assist families through educational programs and support services to optimize quality of life for afflicted individuals and their families, specially these basic things that caregivers need.

These are:

medical help with diagnosis and care

• help with the task of caring
• rests (breaks, respite) from caring
• regular health checks for you the caregiver
• information about home care, day center, or nursing home care.

Please call our secretariat or email us at mailto:adap@alzphilippines.com for more information or support. For Professional Help, the Roster of Professionals active in the association is listed in our Resource page. There is a wide range of support and information available, so do not be afraid to ask. Remember you are not alone.