Caring for a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging

Understanding How AD Changes People—Challenges and Coping Strategies

• 1. Challenge: changes in communication skills
• 2. Challenge: changes in personality and behavior
• 3. Challenge: changes in intimacy and sexuality

Alzheimer's disease is an illness of the brain. It causes large numbers of nerve cells in the brain to die. This affects a person's ability to remember things and think clearly. People with AD become forgetful and easily confused. They may have a hard time concentrating and behave in odd ways. These problems get worse as the illness gets worse, making your job as caregiver harder.

It's important to remember that the disease, not the person with AD, causes these changes. Also, each person with AD may not have all the problems we talk about in this book.

The following sections describe the three main challenges that you may face as you care for someone with AD:

1. changes in communication skills
2. changes in personality and behavior
3. changes in intimacy and sexuality

Each section includes information on how to cope with these challenges.

1. Challenge: changes in communication skills

"Talking with Dad is hard. Often, I don't understand what he is trying to say or what he wants. We both get pretty frustrated sometimes."

Communication is hard for people with AD because they have trouble remembering things. They may struggle to find words or forget what they want to say. You may feel impatient and wish they could just say what they want, but they can't. It may help you to know more about common communication problems caused by AD. Once you know more, you'll have a better sense of how to cope.

Here are some communication problems caused by AD:

• Trouble finding the right word when speaking
• Problems understanding what words mean
• Problems paying attention during long conversations
• Loss of train-of-thought when talking
• Trouble remembering the steps in common activities, such as cooking a meal, paying bills, getting dressed, or doing laundry
• Problems blocking out background noises from the radio, TV, telephone calls, or conversations in the room
• Frustration if communication isn't working
• Being very sensitive to touch and to the tone and loudness of voices

Also, AD causes some people to get confused about language. For example, the person might forget or no longer understand English if it was learned as a second language. Instead, he or she might understand and use only the first language learned, such as Spanish.

How to cope with changes in communication skills

The first step is to understand that the disease causes changes in these skills. The second step is to try some tips that may make communication easier. For example, keep the following suggestions in mind as you go about day-to-day care.

To connect with a person who has AD:

• Make eye contact to get his or her attention, and call the person by name.
• Be aware of your tone and how loud your voice is, how you look at the person, and your "body language." Body language is the message you send just by the way you hold your body. For example, if you stand with your arms folded very tightly, you may send a message that you are tense or angry.
• Encourage a two-way conversation for as long as possible. This helps the person with AD feel better about himself or herself.
• Use other methods besides speaking to help the person, such as gentle touching to guide him or her.
• Try distracting someone with AD if communication creates problems. For example, offer a fun activity such as a snack or a walk around the neighborhood.

"Every few months I sense that another piece of me is missing. My life… my self… are falling apart. I can only think half-thoughts now. Someday I may wake up and not think at all." — From "The Loss of Self"

To encourage the person with AD to communicate with you:

• Show a warm, loving, matter-of-fact manner.
• Hold the person's hand while you talk.
• Be open to the person's concerns, even if they are hard to understand.
• Let him or her make some decisions and stay involved.
• Be patient with angry outbursts. Remember, it's the illness "talking."
• If you become frustrated, take a "timeout" for yourself.

To speak effectively with a person who has AD:

• Offer simple, step-by-step instructions.
• Repeat instructions and allow more time for a response. Try not to interrupt.
• Don't talk about the person as if he or she isn't there.
• Don't talk to the person using "baby talk" or a "baby voice."

Here are some examples of what you can say:

• "Let's try this way," instead of pointing out mistakes
• "Please do this," instead of "Don't do this"
• "Thanks for helping," even if the results aren't perfect

You also can:

• Ask questions that require a yes or no answer. For example, you could say, "Are you tired?" instead of "How do you feel?"
• Limit the number of choices. For example, you could say, "Would you like a hamburger or chicken for dinner?" instead of "What would you like for dinner?"
• Use different words if he or she doesn't understand what you say the first time. For example, if you ask the person whether he or she is hungry and you don't get a response, you could say, "Dinner is ready now. Let's eat."
• Try not to say, "Don't you remember?" or "I told you."

Helping a Person Who Is Aware of Memory Loss AD is being diagnosed at earlier stages. This means that many people are aware of how the disease is affecting their memory. Here are tips on how to help someone who knows that he or she has memory problems: Take time to listen. The person may want to talk about the changes he or she is noticing. Be as sensitive as you can. Don't just correct the person every time he or she forgets something or says something odd. Try to understand that it's a struggle for the person to communicate. Be patient when someone with AD has trouble finding the right words or putting feelings into words. Help the person find words to express thoughts and feelings. For example, Mrs. D cried after forgetting her garden club meeting. She finally said, "I wish they stopped." Her daughter said, "You wish your friends had stopped by for you." Mrs. D nodded and repeated some of the words. Then Mrs. D said, "I want to go." Her daughter said, "You want to go to the garden club meeting." Again, Mrs. D nodded and repeated the words. Be careful not to put words in the person's mouth or "fill in the blanks" too quickly. As people lose the ability to talk clearly, they may rely on other ways to communicate their thoughts and feelings. For example, their facial expressions may show sadness, anger, or frustration. Grasping at their undergarments may tell you they need to use the bathroom.

2. Challenge: changes in personality and behavior

Because AD causes brain cells to die, the brain works less well over time. This changes how a person acts. You will notice that he or she will have good days and bad days.

Here are some common personality changes you may see:

• Getting upset, worried, and angry more easily
• Acting depressed or not interested in things
• Hiding things or believing other people are hiding things
• Imagining things that aren't there
• Wandering away from home
• Pacing a lot of the time
• Showing unusual sexual behavior
• Hitting you or other people
• Misunderstanding what he or she sees or hears

Also, you may notice that the person stops caring about how he or she looks, stops bathing, and wants to wear the same clothes every day.

Other factors that may affect how people with AD behave

Changes in Behavior You may see changes in behavior that the disease didn't cause. For example, certain medicines, severe pain, poor eyesight or hearing, and fatigue can cause behavior changes. If you don’t know what is causing the problem, call the doctor.

In addition to changes in the brain, the following things may affect how people with AD behave.

How they feel:

• Sadness, fear, or a feeling of being overwhelmed
• Stress caused by something or someone
• Confusion after a change in routine, including travel
• Anxiety about going to a certain place

Health-related problems:

• Illness or pain
• New medications
• Lack of sleep
• Infections, constipation, hunger, or thirst
• Poor eyesight or hearing
• Alcohol abuse
• Too much caffeine

Problems in their surroundings:

• Being in a place he or she doesn't know well.
• Too much noise, such as TV, radio, or many people talking at once. Noise can cause confusion or frustration.
• Stepping from one type of flooring to another. The change in texture or the way the floor looks may make the person think he or she needs to take a step down.
• Misunderstanding signs. Some signs may cause confusion. For example, one person with AD thought a sign reading "Wet Floor" meant he should urinate on the floor.
• Mirrors. Someone with AD may think that a mirror image is another person in the room.

How to cope with personality and behavior changes

"I finally figured out that it's me who has to change. I can't expect my husband to change because of the disease."

Here are some ways to cope with changes in personality and behavior:

• Keep things simple. Ask or say one thing at a time.
• Have a daily routine, so the person knows when certain things will happen.
• Reassure the person that he or she is safe and you are there to help.
• Focus on his or her feelings rather than words. For example, say, "You seem worried."
• Don't argue or try to reason with the person.
• Try not to show your anger or frustration. Step back. Take deep breaths, and count to 10. If safe, leave the room for a few minutes.
• Use humor when you can.
• Give people who pace a lot a safe place to walk. Provide comfortable, sturdy shoes. Give them light snacks to eat as they walk, so they don't lose too much weight, and make sure they have enough to drink.

Use distractions:

• Try using music, singing, or dancing to distract the person. One caregiver found that giving her husband chewing gum stopped his cursing.
• Ask for help. For instance, say, "Let's set the table" or "I really need help folding the clothes."

Other ideas:

• Enroll the person in the MedicAlert^® + Alzheimer's Association Safe Return^® Program. If people with AD wander away from home, this program can help get them home safely.
• Talk to the doctor about any serious behavior or emotional problems, such as hitting, biting, depression, or hallucinations.

See Medicines to treat behavior problems related to AD for more information about these problems and some medicines that may help.

How to cope with sleep problems

"I'm exhausted. I can't sleep because I have to watch out for my wife. She wanders around the house, takes out all kinds of stuff from the kitchen. I don't know what she's going to do."

Evenings are hard for many people with AD. Some may become restless or irritable around dinnertime. This restlessness is called "sundowning." It may even be hard to get the person to go to bed and stay there.

Here are some tips that may help:

• Help the person get exercise (PDF, 850K) each day, limit naps, and make sure the person gets enough rest at night. Being overly tired can increase late-afternoon and nighttime restlessness.
• Plan activities that use more energy early in the day. For example, try bathing in the morning or having the largest family meal in the middle of the day.
• Set a quiet, peaceful mood in the evening to help the person relax. Keep the lights low, try to reduce the noise levels, and play soothing music if he or she enjoys it.
• Try to have the person go to bed at the same time each night. A bedtime routine, such as reading out loud, also may help.
• Limit caffeine.
• Use nightlights in the bedroom, hall, and bathroom.

How to cope with hallucinations and delusions

As the disease progresses, the person with AD may have hallucinations. During a hallucination, a person sees, hears, smells, tastes, or feels something that isn't there. For example, the person may see his or her dead mother in the room. He or she also may have delusions. Delusions are false beliefs that the person thinks are real. For example, the person may think his or her spouse is in love with someone else.

Here are some things you can do:

• Tell the doctor or AD specialist about the delusions or hallucinations.
• Discuss with the doctor any illnesses the person has and medicines he or she is taking. Sometimes an illness or medicine may cause hallucinations or delusions.
• Try not to argue about what the person with AD sees or hears. Comfort the person if he or she is afraid.
• Distract the person. Sometimes moving to another room or going outside for a walk helps.
• Turn off the TV when violent or upsetting programs are on. Someone with AD may think these events are really going on in the room.
• Make sure the person is safe and can't reach anything that could be used to hurt anyone or him or herself.

How to cope with paranoia

Check it out! Someone with AD may have a good reason for acting a certain way. He or she may not be paranoid. There are people who take advantage of weak and elderly people. Find out if someone is trying to abuse or steal from the person with AD.

Paranoia is a type of delusion in which a person may believe—without a good reason—that others are mean, lying, unfair, or "out to get him or her." He or she may become suspicious, fearful, or jealous of people.

In a person with AD, paranoia often is linked to memory loss. It can become worse as memory loss gets worse. For example, the person may become paranoid if he or she forgets:

• Where he or she put something. The person may believe that someone is taking his or her things.
• That you are the person's caregiver. Someone with AD might not trust you if he or she thinks you are a stranger.
• People to whom he or she has been introduced. The person may believe that strangers will be harmful.
• Directions you just gave. The person may think you are trying to trick him or her.

Paranoia may be the person's way of expressing loss. The person may blame or accuse others because no other explanation seems to make sense.

Here are some tips for dealing with paranoia:

• Try not to react if the person blames you for something.
• Don't argue with him or her.
• Let the person know that he or she is safe.
• Use gentle touching or hugging to show the person you care.
• Explain to others that the person is acting this way because he or she has AD.
• Search for missing things to distract the person; then talk about what you found. For example, talk about a photograph or keepsake.
• Have extra sets of keys or eyeglasses in case they are lost.

How to cope with agitation and aggression

Agitation means that a person is restless and worried. He or she doesn't seem to be able to settle down. Agitated people may pace a lot, not be able to sleep, or act aggressively toward others. They may verbally lash out or try to hit or hurt someone. When this happens, try to find the cause. There is usually a reason.

For example, the person may have:

• Pain, depression, or stress
• Too little rest or sleep
• Constipation
• Soiled underwear or diaper

"My mom cusses at me every day, usually in public, and usually loudly. I suppose I am beyond the point of being mortified. There's nothing to do but accept it with good humor. That did not come easily or quickly. People in the support group tell me that this period probably will not last."

Here are some other causes of agitation and aggression:

• Sudden change in a well-known place, routine, or person
• A feeling of loss—for example, the person with AD may miss driving or caring for children
• Too much noise or confusion or too many people around
• Being pushed by others to do something—for example, to bathe or remember events or people—when AD has made the activity very hard or impossible
• Feeling lonely and not having enough contact with other people
• Interaction of medicines

Keep to a routine Try to keep to a routine, such as bathing, dressing, and eating at the same time each day. Coping with changes is hard for someone with AD.

Here are suggestions to help you cope with agitation and aggression:

• Look for the early signs of agitation or aggression. Then you can deal with the cause before the problem behaviors start.
• Doing nothing can make things worse. Try to find the causes of the behavior. If you deal with the causes, the behavior may stop.
• Slow down and try to relax if you think your own worries may be affecting the person with AD. Try to find a way to take a break from caregiving.
• Allow the person to keep as much control in his or her life as possible.
• Try to distract the person with a favorite snack, object, or activity.

You also can:

• Reassure him or her. Speak calmly. Listen to the person's concerns and frustrations. Try to show that you understand if the person is angry or fearful.
• Keep well-loved objects and photographs around the house. This can make the person feel more secure.
• Reduce noise, clutter, or the number of people in the room.
• Try gentle touching, soothing music, reading, or walks.
• Build quiet times into the day, along with activities.
• Limit the amount of caffeine, sugar, and "junk food" the person drinks and eats.

Here are things the doctor can do:

• Give the person a medical exam to find any problems that may cause the behavior. These problems might include pain, depression, or the effects of certain medicines.
• Check the person's vision and hearing each year.

Here are some important things to do when the person is aggressive:

• Protect yourself and your family members from aggressive behavior. If you have to, stay at a safe distance from the person until the behavior stops.
• As much as possible, protect the person from hurting himself or herself.
• Ask the doctor or AD specialist if medicine may be needed to prevent or reduce agitation or aggression.

How to cope with wandering

Many people with AD wander away from their home or caregiver. As the caregiver, you need to knowhow to limit wandering and prevent the person from becoming lost. This will help keep the person safe and give you greater peace of mind.

Try to follow these tips before the person with AD wanders:

• Make sure the person carries some kind of ID or wears a medical bracelet. If the person gets lost, an ID will let others know about his or her illness. It also shows where the person lives.
• Consider enrolling the person in the MedicAlert^® + Alzheimer's Association Safe Return^® Program (see www.alz.org or call 1-888-572-8566 to find the program in your area). This service is not affiliated with the National Institute on Aging. There may be a charge for this service.
• Let neighbors and the local police know that the person with AD tends to wander.
• Keep a recent photograph or video recording of the person to help police if the person becomes lost.
• Keep doors locked. Consider a keyed deadbolt, or add another lock placed up high or down low on the door. If the person can open a lock, you may need to get a new latch or lock.
• Install an "announcing system" that chimes when the door opens.

How to cope with rummaging and hiding things

Someone with AD may start rummaging or searching through cabinets, drawers, closets, the refrigerator, and other places where things are stored. He or she also may hide items around the house. This behavior can be annoying or even dangerous for the caregiver or family members. If you get angry, try to remember that this behavior is part of the disease.

In some cases, there might be a logical reason for this behavior. For instance, the person may be looking for something specific, although he or she may not be able to tell you what it is. He or she may be hungry or bored. Try to understand what is causing the behavior so you can fit your response to the cause.

Here are some other steps to take:

• Lock up dangerous or toxic products, or place them out of the person's sight and reach.
• Remove spoiled food from the refrigerator and cabinets. Someone with AD may look for snacks, but lack the judgment or sense of taste to stay away from spoiled foods.
• Remove valuable items that could be misplaced or hidden by the person, like important papers, checkbooks, charge cards, jewelry, and keys.
• People with AD often hide, lose, or throw away mail. If this is a serious problem, consider getting a post office box. If you have a yard with a fence and a locked gate, place your mailbox outside the gate.
• Keep the person with AD from going into unused rooms. This limits his or her rummaging through and hiding things.
• Search the house to learn where the person often hides things. Once you find these places, check them often, out of sight of the person.
• Keep all trash cans covered or out of sight. People with AD may not remember the purpose of the container or may rummage through it.
• Check trash containers before you empty them, in case something has been hidden there or thrown away by accident.

You also can create a special place where the person with AD can rummage freely or sort things. This could be a chest of drawers, a bag of objects, or a basket of clothing to fold or unfold. Give him or her a personal box, chest, or cupboard to store special objects. You may have to remind the person where to find his or her personal storage place.

3. Challenge: changes in intimacy and sexuality

Intimacy is the special bond we share with a person we love and respect. It includes the way we talk and act toward one another. This bond can exist between spouses or partners, family members, and friends. AD often changes the intimacy between people.

Sexuality is one type of intimacy. It is an important way that spouses or partners express their feelings physically for one another.

AD can cause changes in intimacy and sexuality in both the person with AD and the caregiver. The person with AD may be stressed by the changes in his or her memory and behaviors. Fear, worry, depression, anger, and low self-esteem (how much the person likes himself or herself) are common. The person may become dependent and cling to you. He or she may not remember your life together and feelings toward one another. Sometimes the person may even fall in love with someone else.

You, the caregiver, may pull away from the person in both an emotional and physical sense. You may feel be upset by the demands of caregiving. You also may feel frustrated by the person's constant forgetfulness, repeated questions, and other bothersome behaviors.

Most caregivers learn how to cope with these challenges, but it takes time. Some learn to live with the illness and find new meaning in their relationships with people who have AD.

How to cope with changes in intimacy

Remember that most people with AD need to feel that someone loves and cares about them. They also need to spend time with other people as well as you. Your efforts to take care of these needs can help the person with AD to feel happy and safe.

It's important to reassure the person that:

• You love him or her
• You will keep him or her safe
• Others also care about him or her

When intimacy changes, the following tips may help you cope with your own needs:

• Talk with a doctor, social worker, or clergy member about these changes. It may feel awkward to talk about such personal issues, but it can help.
• Talk about your concerns in a support group.
• Think more about the positive parts of the relationship.
• Get more information. Some books, articles, and DVDs/videos can help you understand how AD affects intimacy. For help finding resources, check the websites or call the phone numbers of the organizations listed in the When You Need Help section of this book.

How to cope with changes in sexuality

"We've shared the same bed for 38 years. But since he's had Alzheimer's, it doesn't feel right to have sex."

The well spouse/partner or the person with AD may lose interest in having sex. This change can make you feel lonely or frustrated. Here are some possible reasons for changes in sexual interest.

The well spouse/partner may feel that:

• It's not okay to have sex with someone who has AD
• The person with AD seems like a stranger
• The person with AD seems to forget that the spouse/partner is there or how to make love

A person with AD may have:

• Side effects from medications that affect his or her sexual interest
• Memory loss, changes in the brain, or depression that affects his or her interest in sex

Hypersexuality Sometimes, people with AD are overly interested in sex. This is called "hypersexuality." The person may masturbate a lot and try to seduce others. These behaviors are symptoms of the disease and don't always mean that the person wants to have sex. To cope with hypersexuality, try giving the person more attention and reassurance. You might gently touch, hug, or use other kinds of affection to meet his or her emotional needs. Some people with this problem need medicine to control their behaviors. Talk to the doctor about what steps to take.

Here are some suggestions for coping with changes in sexuality:

• Explore new ways of spending time together.
• Focus on other ways to show affection. Some caregivers find that snuggling or holding hands reduces their need for a sexual relationship.
• Focus on other ways to show affection.
• Try other nonsexual forms of touching, such as giving a massage, hugging, and dancing.
• Consider other ways to meet your sexual needs. Some caregivers report that they masturbate to meet their needs.

Publication Date: July 2012
Page Last Updated: January 22, 2015

credit/source: https://www.nia.nih.gov/alzheimers/publication/caring-person-ad/understanding-how-ad-changes-people-challenges-and-coping

Note:  These are suggestions including the 

agencies/institute to join group of this type of illness 

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