Mental Preparation

You must be mentally prepared for caring for an Alzheimer’s patient. Care giving will:

• Be physically tiring.
• Be mentally exhausting.
• Will involve the not very pleasant chores of supervising (and even cleaning up after) the patient’s visits to the lavatory.
• Seem like an increasingly difficult and never ending job. (Unless you are a professional caregivers). Unlike caring for an infant where the child learns and quickly progresses from helplessness to independence, the AD patient slowly loses his skills.
• Often seem like a job without rewards. Though the AD patient may love you and may feel secure with you and miss you when you are not there, he might rarely express this in a heart warming way.

You may be a close relative or you may be a professional caregiver. The important thing is to have affection for the patient without feeling emotionally involved with him or her. For instance, if he refuses to recognise you or has an aggressive fit, you must not take it as a personal failure or punishment. You must recognise it as an aspect of the disease.

Care giving is easy to talk about but difficult to do. We are aware of this and deeply appreciate those who have volunteered to take care of AD persons.

Attitude that works best with AD patients

Maintain routines but keep things normal.

If the patient has a reasonably orderly routine, help him follow it.

A routine can decrease the decisions that you will need to make and bring order and structure into an otherwise confused daily life. A routine may come to represent security for the person with AD.

Although a routine can be helpful it is important to keep things as normal as possible. As much as the changing condition will allow try to treat the person as you did before the disease.

Support the person’s independence

It is necessary that the person remains independent as long as possible. It helps to maintain self respect and decreases the burden on you.

Some caregivers treat the AD victim like a baby and insist on doing everything, like dressing him up or combing his hair when he is capable of doing it himself. Some caregivers are perfectionists and prefer to do everything themselves because their ward doesn’t do these things very efficiently. Both attitudes are wrong.

Help the person maintain dignity.

Remember that the person you care for is still an individual with feelings. What you and others say and do can be disturbing. Avoid discussing the person's condition in his or her presence.

When helping him change clothes or perform ablutions give him a sense of privacy. Do not treat your ward like a vegetable, although he may seem like one.

Avoid confrontation.

Any type of conflict causes unnecessary stress on you and the person with AD. Avoid drawing attention to failure and maintain a calm composure. Becoming upset can only make the situation worse.

Remember it is the disease and not the person’s fault.

Keep tasks simple.

Try to make things simple for the person with AD. Don’t offer too many choices.

Maintain a sense of humour.

Laugh with but not at the person with AD. Humour can be a great stress reliever.

Make safety important.

Loss of physical co-ordination and memory increase the chance of injury and so you must make your home as safe as possible.1

Encourage fitness and health

In many cases this can help maintain the person’s existing physical and mental abilities for a time. The appropriate exercise depends upon the patient’s condition.

Help make the best of a person’s existing abilities.

Some planned activities can enhance a person’s sense of dignity and self worth by giving purpose and meaning to life. You can ask a lady with AD to help with simple kitchen chores, if she is used to it. (Avoid giving her knives or cutters or electrical devices). Men can give a hand with simple tasks in the house and garden, especially these relate to their past hobbies or profession.

Remember however that because AD is progressive the person’s likes, dislikes and abilities may change over time. This will require you, the caregiver, to be observant and flexible in planning activities.

Maintain communication.

As the disease progresses communication between you and the person can become more difficult. Take the following precautions:-

• Make sure that the person’s senses such as eyesight and hearing are not impaired (Spectacles may no longer be of the right prescription or a hearing aid may not be functioning properly.).
• Speak clearly, slowly, face to face and at eye level.
• Show love and warmth through hugs if this is comfortable for the person.
• Pay attention to the person’s body language. People whose language is impaired communicate through non verbal means.
• Be aware of your own body language.
• Find out what combination of word reminders or prompting words and demonstration is needed to communicate effectively with the person.
• Make sure that you have the person’s attention before speaking.

Use memory aids.

In the early stages of AD memory aids can help the person to remember and they can help prevent confusion. The following are successful examples:

• Display large, clearly labelled pictures of relatives so the person can keep track of who is who.

• Label doors of rooms with words and bright distinctive colours.
• Memory aids will not be so useful in the later stages of AD.

Practical steps to aid everyday routine

Bathing and Personal Hygiene

The person with AD may forget to bathe or no longer recognise the need or may have forgotten what to do. In this situation it is important to respect the person’s dignity when offering to help.

Suggestions:

• Maintain the persons former routine for washing, as much as possible.
• Try to make bathing a pleasant and relaxing occasion.
• A shower may be easier than a bath but if the person has not been used to a shower it may seem alarming.
• Simplify the task as much as possible.
• If the person refuses to bathe, try again a little later when the mood may have changed.
• Allow the person to do as much as possible unaided.
• If the person appears embarrassed,keeping portions of the body covered while bathing may be helpful.
• Think about safety. Something firm to hold on to such as grab rails, a non slip mat, an extra chair all help.
• If bathing always leads toconflict, a stand-up wash might be better.
• If you constantly have problems helping with this get someone else to do it.

Dressing

The person with AD will often forget how to dress and may not recognise the need to change clothes. Persons with AD sometimes appear in public with inappropriate clothing.

Suggestions:

• Lay out clothes in the order they are to be put on.
• Avoid clothes with complicated fastenings.
• Encourage independence in dressing as long as possible.
• Use repetition if necessary.
• Use non-skid rubber-soled shoes.

Toileting and Incontinence

The person with AD may lose the ability to recognise when to go to the toilet, where the toilet is or what to do when in the toilet.

Suggestions:

• Create a schedule for going to the toilet. You might have to take the person to the toilet like you would take a toddler.
• Label the toilet door using bright colours and large letters.
• Leave the toilet door open so it is easy to find.
• Make sure clothing can be easily removed.
• Limit drinks before bedtime.
• Providing a chamber pot or commode by the bed side may be helpful
• When things get unmanageable get professional advice.

Cooking

For the person with AD the ability to cook may be lost in the later stages. This poses severe problems if the person lives alone with an increased risk of injury. Poor physical co-ordination can lead to burns and cuts.

Suggestions:

• Assess how well the person can do his own cooking.
• Enjoy cooking as a shared activity.
• Install safety devices.
• Remove sharp utensils.
• Provide meals or meal service, and try to see that enough nutritious food is eaten

Eating

Persons with dementia often forget if they have eaten, or how to use utensils. In the later stages of AD the person may need to be fed. Some physical problems will arise such as not being able to chew properly or swallow.

Suggestions:

• You might have to remind the person how to eat.
• Let the person use his fingers to feed and do not be too fussy about table manners
• You may have to mash the food a bit. In the later stages you may have to make the meal semi solid.
• Remind the person to eat slowly.
• The person may not be able to sense heat or cold effectively. So the meal should neither be too hot nor too cold.
• Serve one portion at a time.
• When the person has a lot of difficulty in swallowing you may have to ask your doctor for advice.

Driving

It might be dangerous for a person with AD to drive, since his judgement is impaired and reactions are slow.

Suggestions:

• Discuss the subject with the person gently.
• Suggest using public transportation, if possible.
• Hire an auto or rickshaw service, if he needs to commute regularly.

Alcohol and cigarettes

There is no problem with AD persons drinking alcohol in moderation, if medication problems are not involved. Cigarettes introduce a greater danger because of the possibility of fire and the possible damage to health.

Suggestions:

• Supervise the person when smoking; or, discourage smoking altogether-perhaps with a physician’s prescription.
• Check alcohol and medication with your doctor.

Difficulty sleeping

The person with AD may be restless at night and disturb the family - this can be your most exhausting problem as a caregiver.

Suggestions:

• Try to discourage sleeping during the day.
• Try daily walks, and add more physical activity during the day.
• Try to make the person as comfortable as possible at bed time.

Repetitive behaviour

A person with AD may forget what he or she has said from one moment to the next -leading to repetitive questioning and actions.

Suggestions:

• Try to distract the person with AD, offering something else to see, hear or do.
• Write down the answer to commonly asked questions.
• Give hugs and reassure with warmth, if appropriate for the person.

Clinging

The person with AD 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, you will not return.

Suggestions:

• Provide something to occupy his/her attention while you step away.
• You may want to call on a sitter to give yourself privacy.

Losing things, and accusations of theft

The person with AD may often forget where objects were placed. In some cases the person will accuse you and others of taking missing objects. These behaviours are caused by insecurity combined with a sense of loss of control and of memory.

Suggestions:

• Discover if the person has a favourite hiding place
• Keep replacements of important items, e.g., keys, spectacles
• Check waste baskets before emptying them.
• Respond to the person’s accusation gently - not defensively.
• Agree with the person that the item is lost and help find it.

Delusions and hallucinations

It is not uncommon for the person with AD to experience delusions and hallucinations. A delusion is a false belief. For example, the person may hold the false belief of being under threat of harm from the caregiver. To the person with AD the delusion is very real and causes fear, and may result in distressing self-protective behaviours. If the person is experiencing hallucination, he/she might see or hear things that are not there, for instance, figures at the foot of the bed, or people talking in the room.

Suggestions:

• Do not argue with a person about the validity of what was seen or heard.
• When the person is frightened try to give comfort. Your calm voice and gently holding a hand can be comforting.
• Distract the person by drawing attention to something real in the room.
• Check with your doctor about medications that are being used. These may contribute to the problem.

Sexual Relationship

Alzheimer’s Disease does not usually affect sexual relationships. The person’s attitude may alter. Gentle cuddling and holding may be mutually satisfying. It is wise to be patient. The person may not respond in the same way as before, or seem to lose interest. For some couples though, sexual intimacy continues to be the most satisfying part of their relationship.

The opposite may occur too. The person may make excessive demands for sex, or behave in a manner that makes you uncomfortable. You may feel guilty about wanting to sleep separately.

Suggestions:

• Seek help from professionals trained in care giving
• You may discuss the issue with a psychologist.

Inappropriate sexual behaviour

The person with AD may display inappropriate sexual behaviour, but it is rare. Behaviour may include undressing in public or touching someone in an inappropriate way.

Suggestions:

• Try not to over react to the behaviour. Remember this is the disease taking effect and not a conscious sexual advance.
• Try to distract the person.
• If the person tries to remove clothing, try to discourage this without giving a lesson in morality. Try to distract the person.

Wandering

his can be a worrying problem that you have to learn to manage.This can be tricky. The person in the early and middle stages of the disease may have a perfectly lucid day and may promise that they will keep to the garden or the compound and when your back is turned, just disappear.

The person may wander around and out of the house and may forget his way back. Safety becomes a critical issue in such cases.

• Make sure the person carries some identification and address.
• Make sure that the home is secure and the person cannot leave without your (or any other supervisor/sitter’s) knowledge.
• If your building has a watchman, tell him to tip you off when he sees the person going off alone. You can request the watchmen of the neighbouring buildings also to do the same.
• Find out how to handle the worst case scenario: the person getting lost. Find out where you have to lodge a complaint and if you should advertise in the media.
• When the person returns, accept him calmly. Do not give him an angry lecture.
• Keep a recent photograph of the person.

Violence and anger

From time to time the person may become angry and aggressive. This can happen due to a variety of reasons such as the loss of the ability to understand the position of the caretaker, the impairment of judgement or the inability to express negative feelings in a better way.

This too can be a big problem for the caregivers. If you are not committed to the person this aspect can be very off putting.

• Try to be calm. Try not to show fear or alarm.
• Try to draw the person’s attention to a calming activity.
• Give the person more space.
• Try to remember what caused the reaction. Try to avoid it the next time.
• If violence occurs often, ask your doctor for advice.

Depression and anxiety

The person with AD may experience depression and be withdrawn and unhappy, and will speak, act and think slowly. This can affect the daily routine and interest in food.

Suggestions:

• Discuss this with your doctor. He may advise you or refer you to counsellor or psychiatrist, who might help you handle it better.
• Sometimes going through photo albums of his youth and happy times, or the person’s favourite music might pull him out of the dumps.
• Give the person time to recover from his blues.

Increasing Safety at home

Many things in and around your home may cause problems for an AD patient. Consider the following precautions:

• Keep steps and corridors clear of plants.
• Let there be enough light.
• Use unbreakable serving dishes and plates.
• Keep the garage door locked.
• Keep the gas supply switched off after cooking. Hide matchboxes and lighters. Keep hot things in a secure place.
• Lower the temperature of the water heater so that the person doesn’t scald himself even if he turns on the hot water tap.
• Keep insecticides, medicines and mosquito repellents locked.
• If you have sharp edged furniture cover it with foam or soft furnishing.
• People with AD spill and break things. Stain resistant upholstery may be useful.
• Install safety locks so that the person cannot wander away easily.
• Consider a keyed lock for the bathroom. This might prevent the person from locking himself inside the bathroom.
• Keep the refrigerator locked, the person may open it and forget to close the door.
• Discourage the person from smoking.
• Keep the person’s hair short. It will be easier to manage.
• Keep the person’s nails short. This avoids infections.

Your emotions

If a member of a family has Alzheimer’s disease, it affects the entire family. Relationships with the person and the other members may change. As a caregiver a lot of responsibility falls on you. You may experience a range of emotion in relation to the person with AD.

Grief

This is a natural response for someone who has a loss. When your friend, companion or parent gets AD, the person changes so much, that you feel you have lost a loved one. When you start getting adjusted, the person changes again. He may even stop recognising you.

Keep in touch with others in the same predicament. It can help you to keep going.

Guilt

Care giving is a tough job. Sometimes it can be very trying and you might lose your temper. This will be followed by remorse. When you come away from the person you might remember the relationship with the person in the past and your present conduct. For instance, you might have been harsh with your parent, a thing you would never have done but for the disease.

You might feel guilt at placing such a person in a day care centre or home.

There are no simple solutions here. Try to remember that many things change because of the disease.

Anger

You might feel angry at the situation. You might feel angry with the person, your doctor, your siblings or others who are unwilling to share care giving.

Apart from caring for the person, you may find that you are taking over the person’s responsibilities such as cooking, housekeeping or paying bills, shopping etc. All this might get stressful.

Accept the situation. Delegate responsibilities. Try to hire help to take on some of your chores.

Embarrassment

You may feel embarrassed when the person behaves inappropriately in public.

Your family, especially children, and friends should be briefed about the illness and they will be able to understand. They may help you deal with the situation.

Loneliness

Care giving is demanding. It leaves you exhausted with little time for anything else. The person with AD could have been a close companion.

Unable to relate to the person as you did in the past and unable to make new friends, loneliness may become a problem.

Caring for yourself

You can neglect yourself and this can lead to emotional or health problems for you.

To fight stress:

• Keep in touch with friends and relatives. They might offer useful suggestions, if not physical help. Encourage other members of the family to help out.
• Care giving for an Alzheimer’s disease patient is a 24-hour job. You deserve time off. Take it. Time off allows you to nurture other relationships. Spouses, children, friends need you and you need them too.
• You can make arrangements for the affected individuals in your free time. If the person with AD is with you, you may not be able to concentrate on matters that deserve your undivided attention.
• If you love cooking, gardening, cleaning house, continue doing it. Get engaged in hobbies as and when it is possible.
• Consider delivery services. Few grocery stores and restaurants offer delivery services that will save your time so you can spare more time to look after your loved one.
• Religious or social organisations like the Lions Club may be willing to help you out from time to time, by spending a day with your loved one.
• Adult day care centres can clearly benefit people with AD. Just as you need time away from your loved one, people with AD too need time away from their caregivers. They often enjoy the company of the people of their same age group. They have fun, make friends and return home more relaxed.

Some nursing homes allow short stays. Check it out, so that you can go out on a tour, a picnic or attend a family get-together.

This section on Alzheimer’s Disease has been prepared with inputs from Novartis India Limited.