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Alzheimers



Stages of AD
What happens when a person has Alzheimer's disease?
What are the signs of Alzheimer's disease?
When should you see your doctor?
What are other causes of memory problems?
Are there treatments for Alzheimer's disease?
Is there help for caregivers?


Many older people forget someone's name or misplace things from time to time. This kind of forgetfulness is normal. But, forgetting how to get home, getting confused in places a person knows well, or asking questions over and over can be signs of a more serious problem. The person may have Alzheimer's disease (pronounced Allz-high-merz duh-zeez). It is a disease of the brain that begins slowly and gets worse over time.

Stages of AD and What They Mean

Alzheimer's disease consists of three main stages: mild (sometimes called early-stage), moderate, and severe (sometimes called late-stage). Understanding these stages can help you plan ahead. You will find information about coping with behavior problems often seen in each stage of AD in Challenge: changes in personality and behavior.

Mild Alzheimer's disease. In mild AD, the first stage, people often have some memory loss and small changes in their personality. They may forget recent events or the names of familiar people or things. They may no longer be able to solve math problems or balance a checkbook. People with mild AD also slowly lose the ability to plan and organize. For example, they may have trouble making a grocery list and finding items in the store.

Moderate Alzheimer's disease. This is the middle stage of AD. Memory loss and confusion become more obvious. People have more trouble organizing, planning, and following instructions. They may need help getting dressed (PDF, 176K) and may start having problems with incontinence. This means they can't control their bladder and/or bowels. People with moderate-stage AD may have trouble recognizing family members and friends. They may not know where they are or what day or year it is. They also may lack judgment and begin to wander, so people with moderate AD should not be left alone. They may become restless and begin repeating movements late in the day. Also, they may have trouble sleeping. Personality changes (PDF, 978K) can become more serious. People with moderate AD may make threats, accuse others of stealing, curse, kick, hit, bite, scream, or grab things.

Severe Alzheimer's disease. This is the last stage of Alzheimer's and ends in the death of the person. Severe AD is sometimes called late-stage AD. In this stage, people often need help with all their daily needs. They may not be able to walk or sit up without help. They may not be able to talk and often cannot recognize family members. They may have trouble swallowing and refuse to eat.

What happens when a person has Alzheimer's disease?

Alzheimer's disease often starts slowly. In fact, some people don't know they have it. They blame their forgetfulness on old age. However, over time, their memory problems get more serious.

People with Alzheimer's disease have trouble doing everyday things like driving a car, cooking a meal, or paying bills. They may get lost easily and find even simple things confusing. Some people become worried, angry, or violent.

As the illness gets worse, most people with Alzheimer's disease need someone to take care of all their needs, including feeding and bathing. Some people with Alzheimer's live at home with a caregiver. Other people with the disease live in a nursing home.

What are the signs of Alzheimer's disease?

It's important to know the signs of Alzheimer's disease. If you know the signs, you can get help right away. Some signs of the disease are listed here:

Early signs

-finding it hard to remember things

-asking the same questions over and over

-having trouble paying bills or solving simple math problems

-getting lost

-losing things or putting them in odd places

Later signs

-forgetting how to brush your teeth or comb your hair

-being confused about time, people, or places

-forgetting the names of common things, such as a desk, house, or apple

-wandering away from home

Mild cognitive impairment

Some older people have a condition called mild cognitive impairment, or MCI. It can be an early sign of Alzheimer's. But, not everyone with MCI will develop Alzheimer's disease. People with MCI can still take care of themselves and do their normal activities. MCI memory problems may include:

-losing things often

-forgetting to go to events or appointments

-having more trouble coming up with words than other people of the same age.

If you have MCI, it's important to see your doctor or specialist every 6 to 12 months. Ask him or her to check for changes in your memory and thinking.

Use the chart below to help you understand the differences between Alzheimer's disease and normal signs of aging.

Differences between Alzheimer's disease and normal aging
Alzheimer's disease Normal aging
Making poor judgments and decisions a lot of the time Making a bad decision once in a while
Problems taking care of monthly bills Missing a monthly payment
Losing track of the date or time of year Forgetting which day it is and remembering it later
Trouble having a conversation Sometimes forgetting which word to use
Misplacing things often and being unable to find them Losing things from time to time

 

When should you see your doctor?

If you or someone in your family thinks your forgetfulness is getting in the way of your normal routine, it's time to see your doctor. Seeing the doctor when you first start having memory problems can help you find out what's causing your forgetfulness. If you have Alzheimer's, finding the disease early gives you and your family more time to plan for your treatment and care.

Your doctor or a specialist may do the following things to find out if you have Alzheimer's disease:

-give you a medical check-up

-ask questions about your family's health

-ask how well you can do everyday things like driving, shopping for -food, and paying bills

-talk with someone in your family about your memory problems

-test your memory, problem-solving, counting, and language skills

-check your blood and urine, and do other medical tests

-do brain scans that show pictures of your brain

What are other causes of memory problems?

Some medical conditions cause confusion and forgetfulness. The signs may look like Alzheimer's disease, but they are caused by other problems. Here are medical conditions that can cause serious memory problems:

-bad reaction to certain medicines

-emotional problems such as depression

-not eating enough healthy foods

-too few vitamins and minerals in your body

-drinking too much alcohol

-blood clots or tumors in the brain

-head injury, such as a concussion from a fall or accident

-kidney, liver, or thyroid problems

These medical conditions are serious and need to be treated. Once you get treatment, your confusion and forgetfulness should go away.

Are there treatments for Alzheimer's disease?

There are medicines that can treat the symptoms of Alzheimer's disease. But, there is no cure. Most of these medicines work best for people in the early or middle stages of the disease. For example, they can keep your memory loss from getting worse for a time. Other medicines may help if you have trouble sleeping, or are worried and depressed. All these medicines may have side effects and may not work for everyone.

What about research on Alzheimer's disease?

Researchers are doing studies with people who have different kinds of memory problems to find new and better ways to treat the disease. They also are looking at how to prevent Alzheimer's, slow the disease, and reduce its symptoms.

People with Alzheimer's disease, MCI, or a family history of Alzheimer's may be able to take part in clinical trials, a type of research study. Healthy people with no memory problems and no family history of Alzheimer's also may be able to take part in clinical trials.

Is there help for caregivers?

Yes, there is help for caregivers. You don't have to do everything yourself. See the list below for ways to get help.

-Find a support group.

-Use adult day care services.

-Get help from a local home health care agency.

-Contact local and national groups for information about Alzheimer's disease.

See Where can you get more information? for groups and services that can help you. You can also find caregiving information and advice on many topics by reading the tip sheets on this website's Caregiving page.

Coping as a caregiver

If you are caring for someone with Alzheimer's disease, you may have many different feelings. Sometimes, taking care of the person with Alzheimer's makes you feel good because you are providing love and comfort. At other times, it can be overwhelming. You may see changes in the person that are hard to understand and cope with.

Each day brings new challenges. You may find yourself dealing with problem behaviors or just trying to get through the day. You may not even realize how much you have taken on, because the changes can happen slowly over time.

Take care of yourself

Taking care of yourself is one of the most important things you can do as a caregiver. You could:

-ask friend and family to help you out

-do things you enjoy and spend time with friends

-take short breaks

-eat healthy foods and get exercise

Taking these actions can bring you some relief. It also may help keep you from getting ill or depressed.

Understanding How AD Changes People-Challenges and Coping Strategies

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.

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.

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

-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

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 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

For example, the person may have:

-Pain, depression, or stress

-Too little rest or sleep

-Constipation

-Soiled underwear or diaper

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 know how 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.

Deciding when and how to tell family members and friends

When you learn that someone you love has AD, you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. While there is no single right way to tell others, we've listed some things to think about.

Think about the following questions:

-Are others already wondering what is going on?

-Do you want to keep this information to yourself?

-Are you embarrassed?

-Do you want to tell others so that you can get support from family members and friends?

-Are you afraid that you will burden others?

-Does keeping this information secret take too much of your energy?

-Are you afraid others won't understand?

Realize that family and friends often sense that something is wrong before they are told. AD is hard to keep secret. When the time seems right, it is best for you to be honest with family, friends, and others. Use this as a chance to educate them about AD.

For example, you can:

-Tell them about the disease and its effects.

-Share books and information to help them understand what you and the person with AD are going through.

-Tell them they can learn more (see the ADEAR website).

-Tell them what they can do to help. Let them know you need breaks.

Help family and friends understand how to interact with the person who has AD. You can:

-Help them realize what the person still can do and how much he or she still can understand.

-Give them suggestions about how to start talking with the person. For example, "Hello George, I'm John. We used to work together."

-Help them avoid correcting the person with AD if he or she makes a mistake or forgets something.

-Help them plan fun activities with the person, such as going to family reunions; church, temple, or mosque gatherings; other community activities; or visiting old friends.

Communicate with others when you're out in public. Some caregivers carry a card that explains why the person with AD might say or do odd things. For example, the card could read, "My family member has Alzheimer's disease. He or she might say or do things that are unexpected. Thank you for your understanding."

The card allows you to let others know about the person's AD without the person hearing you. It also means that you don't have to keep explaining things.

Helping children understand AD

When a family member has AD, it affects everyone in the family, including children and grandchildren. It's important to talk to them about what is happening. How much and what kind of information you share depends on the child's age. It also depends on his or her relationship to the person with AD.

Give children information about AD that they can understand. There are good books about AD for children of all ages.

Here are some other suggestions to help children understand what is happening:

Answer their questions simply and honestly. For example, you might tell a young child, "Grandma has an illness that makes it hard for her to remember things."

Help them know that their feelings of sadness and anger are normal.

Comfort them. Tell them no one caused the disease. Young children may think they did something to hurt their grandparent.

If the child lives in the same house as someone with AD:

Don't expect a young child to help take care of or "babysit" the person with AD.

Make sure the child has time for his or her own interests and needs, such as playing with friends, going to school activities, or doing homework.

Make sure you spend time with your child, so he or she doesn't feel that all your attention is on the person with AD.

Help the child understand your feelings. Be honest about your feelings when you talk with a child, but don't overwhelm him or her.

Many younger children will look to you to see how to act around the person with AD. Show children they can still talk with the person, and help them enjoy things each day. Doing fun things together can help both the child and the person with AD.

Here are some things they might do:

Do simple arts and crafts.

Play music.

Sing.

Look through photo albums.

Read stories out loud.

Some children may not talk about their negative feelings, but you may see changes in how they act. Problems at school, with friends, or at home can be a sign that they are upset. You may want to ask a school counselor or a social worker to help your child understand what is happening and learn how to cope. Be sure to check with your child often to see how he or she is feeling.

A teenager might find it very hard to accept how the person with AD has changed. He or she may find the changes upsetting or embarrassing and not want to be around the person. It's a good idea to talk with teenagers about their concerns and feelings. Don't force them to spend time with the person who has AD. This could make things worse.

If the stress of living with someone who has AD becomes too great for a child, think about placing the person with AD into a respite care facility. Then, both you and your child can get a much-needed break. See Respite Services for more information about respite care.

Planning Ahead-Health, Legal, and Financial Issues

When someone is diagnosed with AD, you need to start getting his or her health, legal, and financial affairs in order. You want to plan for the future, if possible, with help from the person while he or she can still make decisions. You need to review all of his or her health, legal, and financial information to make sure it reflects the person's wishes.

Update health care, legal, and financial information

Check to see that you have the following documents and that they are up to date:

Durable Power of Attorney for Finances gives someone the power to make legal and financial decisions for the person with AD

Durable Power of Attorney for Health Care gives someone called a proxy or an agent the power to make health care decisions for the person with AD

Living Will states the person's wishes for health care at the end of life

Do Not Resuscitate (DNR) Form tells health care staff that the person does not want them to try to return the heart to a normal rhythm if it stops or is beating unevenly.

Will tells how the person wants his or her property and money to be divided among those left behind

Living Trust tells someone called a trustee how to distribute a person's property and money

Check for money problems

People with AD often have problems managing their money. As the disease gets worse, a person may try to hide financial problems to protect his or her independence. Or, the person may not realize that he or she is losing the ability to handle money matters. Someone should check each month to see how the person is doing. This person might be a family member or the trustee.

Protect the person from fraud

People with AD also may be victims of financial abuse or "scams" by dishonest people. There can be telephone, mail, e-mail, or in-person scams. Sometimes, the person behind the scam is a "friend" or family member.

Scams can take many forms, such as:

Identity theft

Get-rich-quick offers

Phony offers of prizes or home or auto repairs

Insurance scams

Threats

Here are some signs that the person with AD is not managing money well or has become a victim of a scam:

The person seems afraid or worried when he or she talks about money.

Money is missing from the person's bank account.

Signatures on checks or other papers don't look like the
person's signature.
Bills are not being paid, and the person doesn't know why.

The person's will has been changed without his or her permission.

The person's home is sold, and he or she did not agree to sell it.

Things that belong to you or the person with AD, such as clothes or jewelry, are missing from the home.

The person has signed legal papers (such as a will, a power of attorney, or a joint deed to a house) without knowing what the papers mean.

Keeping the Person with AD Safe

Home safety

Over time, people with AD become less able to manage things around the house.

For example, they may forget:

To turn off the oven or the water

How to use the phone in an emergency

Which things around the house, such as certain medicines or household cleaners, are dangerous

Where things are in their own home

As a caregiver, you can do many things to make a house safer for people with AD.

Add the following to your home if you don't already have them in place:

Smoke and carbon monoxide alarms in or near the kitchen and in all bedrooms

Emergency phone numbers (ambulance, poison control, doctors, hospital, etc.) and your home address near all telephones

Safety knobs on the stove and a shut-off switch

Childproof plugs for unused electrical outlets

Lock up or remove the following from your home:

All prescription and over-the-counter medicines

Alcohol

Cleaning products, dangerous chemicals such as paint thinner, matches, etc.

Poisonous plants-contact the National Poison Control Center at 1-800-222-1222 or www.poison.org to find out which houseplants are poisonous

All guns and other weapons, scissors, and knives

Gasoline cans and other dangerous items in the garage

Do the following to keep the person with AD safe:

Simplify your home. Too much furniture can make it hard to move freely.

Get rid of clutter, such as piles of newspapers and magazines.

Have a sturdy handrail on your stairway. Put carpet on stairs or add safety grip strips.

Remove small throw rugs.

Put a gate across the stairs if the person has balance problems.

 Make sure the person with AD has good floor traction for walking or pacing. Good traction lowers the chance that people will slip and fall. Three factors affect traction:

Other home safety tips

Use signs

People with AD are able to read until the late stage of the disease. Use signs with simple written instructions to remind them of danger or show them where to go.

People with AD get more confused over time. They also may not see, smell, touch, hear, and/or taste things as they used to.

You can do things around the house to make life safer and easier for the person with AD:

Seeing

Make floors and walls different colors. This creates contrast and makes it easier for the person to see.

Remove curtains and rugs with busy patterns that may confuse the person.

Mark the edges of steps with brightly colored tape so people can see the steps as they go up or down stairs.

Use brightly colored signs or simple pictures to label the bathroom, bedroom, and kitchen.

Be careful about small pets. The person with AD may not see the pet and trip over it.

Limit the size and number of mirrors in your home, and think about where to put them. Mirror images may confuse the person with AD.

Touching

Reset your water heater to 120 degrees Fahrenheit to prevent burns.

Label hot-water faucets red and cold-water faucets blue or write the words "hot" and "cold" near them.

Put signs near the oven, toaster, iron, and other things that get hot. The sign could say, "Stop!" or "Don't Touch-Very Hot!" Be sure the sign is not so close that it could catch on fire.

Pad any sharp corners on your furniture, or replace or remove furniture with sharp corners.

Test the water to make sure it is a comfortable temperature before the person gets into the bath or shower.

Smelling

Use good smoke detectors. People with AD may not be able to smell smoke.

Check foods in your refrigerator often. Throw out any that have gone bad.

Home Safety

To learn more about how to make your home a safe place inside and out, go to www.nia.nih.gov/alzheimers, and search for "home safety."

Tasting

Keep foods like salt, sugar, and spices away from the person if you see him or her using too much.

Put away or lock up things like toothpaste, lotions, shampoos, rubbing alcohol, soap, or perfume. They may look and smell like food to a person with AD.

Keep the poison control number (1-800-222-1222) by the phone.

Learn what to do if the person chokes on something. Check with your local Red Cross chapter about health or safety classes.

Hearing

Don't play the TV, CD player, or radio too loudly, and don't play them at the same time. Loud music or too many different sounds may be too much for the person with AD to handle.

Limit the number of people who visit at any one time. If there is a party, settle the person with AD in an area with fewer people.

Shut the windows if it's very noisy outside.

If the person wears a hearing aid, check the batteries and settings often.

Driving safety

Good drivers are alert, think clearly, and make good decisions. When the person with AD is not able to do these things, he or she should stop driving. But, he or she may not want to stop or even think there is a problem. As the caregiver, you will need to talk with the person about why he or she needs to stop driving. Do this in a caring way. Understand how unhappy the person with AD may be that he or she has reached this new stage.

"Driving with my husband was scary. At red lights, he'd go into the middle of the intersection before stopping. I knew he needed to stop driving."

Be ready to find other ways that the person can travel on his or her own, for as long as possible. Your local Area Agency on Aging has information about transportation services in your area. These services may include free or low-cost buses, taxi service, or carpools for older people. Some churches and community groups have volunteers who take seniors wherever they want to go.

Here are some things you need to know about driving and memory loss:

A person with some memory loss may be able to drive safely sometimes. But, he or she may not be able to react quickly when faced with a surprise on the road. This can lead to dangerous results. If the person's reaction time slows, then you need to stop the person from driving.

The person may be able to drive short distances on local streets during the day, but may not be able to drive safely at night or on a freeway. If this is the case, then limit the times and places that the person can drive.

Some people with memory problems decide on their own not to drive. Others don't want to stop driving and may deny that they have a problem.

Here are some signs that the person should stop driving:

New dents and scratches on the car

Taking a long time to do a simple errand and not being able to explain why. That may indicate that the person got lost.

Also, consider asking a friend or family member to follow the person. What he or she sees can give you a better sense of how well the person with AD is driving.

Please remember:

If the person with AD keeps driving when it is no longer safe, someone could get hurt or killed. You need to weigh the danger to other people if he or she does drive against the feelings of the person. Talk to the person's doctor about this problem.

Here are some ways to stop people with AD from driving:

Try talking about your concerns with the person.

Ask your doctor to tell him or her to stop driving. The doctor can write, "Do not drive" on a prescription pad and you can show this to the person. Some State Departments of Motor Vehicles require doctors to tell them if the person with AD should no longer drive.

Ask family or friends to drive the person.

Take him or her to get a driving test.

Hide the car keys, move the car, take out the distributor cap, or disconnect the battery if the person won't stop driving.

Find out about services that help people with disabilities get around their community. Look in the blue pages of your local telephone book, contact your local Area Agency on Aging office, or call the Community Transportation Association at 1-800-891-0590.

If the person won't stop driving, contact your State Department of Motor Vehicles. Ask about a medical review for a person who may not be able to drive safely. He or she may be asked to retake a driving test. In some cases, the person's license could be taken away.

-NIH



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