Caring

for a Person with

Alzheimer’s Disease

Your Easy-to-Use Guide 

from the National Institute on Aging

Table of Contents



About this Guide ............................................................................................. 2

Understanding AD .......................................................................................... 4

Stages of AD and What They Mean ............................................4

How to Learn More About AD....................................................6

Caring for a Person with AD ........................................................................... 7

Understanding How AD Changes People—

Challenges and Coping Strategies................................................7

Helping Family Members and Others Understand AD .............26

Planning Ahead—Health, Legal, and Financial Issues..............30

Keeping the Person with AD Safe .............................................32

Providing Everyday Care for People with AD............................38

Adapting Activities for People with AD....................................46

When You Need Help .................................................................................... 56

Getting Help with Caregiving....................................................56

Finding the Right Place for the Person with AD.......................67

The Medical Side of AD ................................................................................. 72

Medicines to Treat AD Symptoms and Behaviors.....................72

Common Medical Problems in People with AD........................78

Coping with the Last Stages of AD .............................................................. 85

Coping with Late-Stage AD.......................................................85

End-of-Life Care .........................................................................93

Caring for Yourself ........................................................................................ 94

How to Take Care of Yourself ....................................................94

Joining a Clinical Trial ................................................................................... 98

Summary ..................................................................................................... 100 

Words to Know ............................................................................................ 101

Table of Contents 1


About this Guide 

This guide is for people who care for family members or others 

with Alzheimer’s disease (AD) at home. AD is an illness 

that changes the brain. It causes people to lose the ability to 

remember, think, and use good judgment and to have trouble 

taking care of themselves. Over time, as the disease gets worse, 

they will need more help. 

Sometimes, taking care of the person with AD makes you feel 

good because you are providing love and comfort. Other times, 

it can be overwhelming. Also, each day brings new challenges. 

You may not even realize how much you have taken on because 

the changes can happen slowly over a long period of time. 

We’ve written this guide to help you learn about and cope with 

these changes and challenges. Starting on page 94, you will find 

suggestions for taking care of yourself, which help you to be a 

good caregiver. 

The information in this guide comes from other caregivers 

and from medical research, such as that funded by the 

National Institute on Aging (NIA). NIA is part of the 

National Institutes of Health, the nation’s medical research 

agency. NIA leads the federal effort to find the cause of and 

treatment for Alzheimer’s disease. 

2 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
About this Guide 

The guide tells you how to: 

•		 Understand how AD changes a person 

•		 Learn how to cope with these changes 

•		 Help family and friends understand AD 

•		 Plan for the future 

•		 Make your home safe for the person with AD 

•		 Manage everyday activities like eating, bathing, dressing, 

and grooming 

•		 Take care of yourself 

•		 Get help with caregiving 

•		 Find out about helpful resources, such as websites, 
 

support groups, government agencies, and adult day



care programs



•		 Choose a full-time care facility for the person with 
 

AD if needed



•		 Learn about common behavior and medical problems of 

people with AD and some medicines that may help 

• 	 Cope with late-stage AD 

This guide contains a lot of information. Please don’t feel that you 

have to read it all at one time. You can use the tools listed below to 

find what you need quickly. 

Table of Contents: 

Use the Table of Contents to help find the 

topics that interest you. See page 1. 

Words to Know: 

Check this section for definitions of 

medical words and how to say them. 

See pages 101–103. 

About this Guide 3


Understanding AD 

Sometimes, you may feel that you don’t know how to care for the 

person with AD. You’re not alone. Each day may bring different 

challenges. Learning about AD can help you understand and cope 

with these challenges. Below, we discuss the stages of AD and tell 

you how to learn more about the illness. 

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 latestage). Understanding these stages can help you plan ahead. You 

will find information about coping with behavior problems often 

seen in each stage of AD starting on page 12. 

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 simple math problems. 

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. 

4 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Understanding AD 

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 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 

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 latestage 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. 

Understanding AD Understanding AD 5


How to Learn More About AD 

Here are some ways to help you learn more about AD: 

• Talk with a doctor or other health care provider about

AD. Ask your doctor to refer you to someone who

specializes in AD.

• Ask your doctor or AD specialist about good sources

of information.

• Check out books, CDs, DVDs, or videos on AD

from the library.

• Go to educational programs and workshops on AD.

• Visit websites on AD such as www.nia.nih.gov/alzheimers,

www.alzheimers.gov, or www.alz.org. Use search

engines to find more information.

• Talk about AD with friends and family to get advice

and support.

• Try to find a support group for caregivers. You want a group

in which the caregivers are taking care of someone who is in

the same stage of AD as the person you are caring for. Also,

you may be able to find an Internet-based support group.

This is helpful for some caregivers, because it means they

don’t have to leave home to be a part of the group. The

Alzheimer’s Association (www.alz.org) is a good resource to

help find support groups.

For copies of this book or 

other information on AD, 

contact the Alzheimer’s 

and related Dementias 

Education and Referral 

(ADEAR) Center. Phone: 

1-800-438-4380

www.nia.nih.gov/alzheimers

The ADEAR Center is a 

service of the National 

Institute on Aging. 

6 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
Caring for a Person with AD 

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. 

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. 

Caring for a Person with AD 7


1. Challenge: changes in 

communication skills 

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. “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.” 

8 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

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 he or she 

is 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. 

Caring for a Person with AD 

Caring for a Person with AD 9

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.” 

10 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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. 

“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” 

Caring for a Person with AD 11


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. 

12 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

Other factors that may affect how 

people with AD behave 

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. 

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. 

Caring for a Person with AD 13


How to cope with personality 

and behavior changes 

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 (www.alz.org or 1-888-572-8566). 

•		 Talk to the doctor about any serious behavior or



emotional problems, such as hitting, biting, 
 

depression, or hallucinations.



See page 75 for more information about behavior problems 

and some medicines that may help. 

14 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 


“I finally figured out 

that it’s me who has to 

change. I can’t expect 

my husband to change 

because of the disease.” 
Caring for a Person with AD 

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. 

“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.” 

Caring for a Person with AD 15


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 himself or herself. 

16 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

How to cope with paranoia 

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. 

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. 

Caring for a Person with AD 17


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 

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 

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. 
 

“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.” 

18 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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. 
 

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. 

Caring for a Person with AD 19


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 a 

door is opened. 

20 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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. 

Caring for a Person with AD 21


•		 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. 

22 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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 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. 

Caring for a Person with AD 23


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 on pages 57–58 of this book. 

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. 

24 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

How to cope with changes in sexuality 

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



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. 
 

•		 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.



“We’ve shared the 

same bed for 38 

years. But since he’s 

had Alzheimer’s, it 

doesn’t feel right to 

have sex.” 

Caring for a Person with AD 25


Helping Family Members and 

Others Understand AD 

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 how they can learn more (see page 57). 

•		 Tell them what they can do to help. Let them know 

you need breaks. 

26 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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. 

Caring for a Person with AD 27


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. Some are 

listed on the Alzheimer’s and related Dementias Education 

and Referral (ADEAR) Center website, www.nia.nih.gov/ 

alzheimers/topics/caregiving. 

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. 

28 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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 page 61 for more information about 

respite care. 

Caring for a Person with AD 29


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 

Information on 

Planning 

Contact the Alzheimer’s and 

related Dementias Education 

and Referral (ADEAR) 

Center at 1-800-438-4380 or 

www.nia.nih.gov/alzheimers 

for more information on 

planning for health, legal, and 

financial matters. 

30 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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, 

email, 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. 

Reporting Problems 

If you think the person may 

be a victim of a scam, contact 

your local police department. 

You also can contact your 

state consumer protection 

office or Area Agency on 

Aging office. Look online 

for these agencies at 

www.usa.gov/state-consumer 

or www.n4a.org. 

Caring for a Person with AD 31


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 

32 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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. 

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: 

1.		 The kind of floor surface. A smooth or 

waxed floor of tile, linoleum, or wood may 

be a problem for the person with AD. 

Think about how you might make the 

floor less slippery. 

2.		 Spills. Watch carefully for spills and clean 

them up right away. 

3.		 Shoes. Buy shoes and slippers with good 

traction. Look at the bottom of the shoe to 

check the type of material and tread. 

Caring for a Person with AD 33


Other home safety tips 

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. 

34 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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. 

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. 

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.” 

Caring for a Person with AD 35


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. 

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 be dangerous. 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. 

Please remember: 

If the person with AD keeps driving when it is no 

longer safe, someone could get hurt or be 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. 

“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.” 

36 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

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. 

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. Contact 

your local Area Agency on Aging office or 

Eldercare Locator at 1-800-677-1116 or 

www.eldercare.gov. 

•		 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. 

Caring for a Person with AD 37


Providing Everyday Care 

for People with AD 

Activity and exercise 

Being active and getting exercise helps people with AD feel 

better. Exercise helps keep their muscles, joints, and heart in 

good shape. It also helps people stay at a healthy weight and 

have regular toilet and sleep habits. You can exercise together 

to make it more fun. 

You want someone with AD to do as much as possible for himself 

or herself. At the same time, you also need to make sure that the 

person is safe when active. 

Here are some tips for helping the person with AD stay active: 

•		 Take a walk together each day. Exercise is good for 

caregivers, too! 

•		 Make sure the person with AD has an ID bracelet with 

your phone number if he or she walks alone. 

•		 Check your local TV guide to see if there is a 
 

program to help older adults exercise. 
 

•		 Add music to the exercises if it helps the person 
 

with AD. Dance to the music if possible. 
 

•		 Watch exercise videos/DVDs made for older 
 

people. Try exercising together. 
 

•		 Make sure he or she wears comfortable clothes and 

shoes that fit well and are made for exercise. 

•		 Make sure the person drinks water or juice 
 

after exercise. 
 

•		 For more information on exercise and physical 
 

activity, visit www.nia.nih.gov/Go4Life or 
 

call 1-800-222-2225.



38 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

Some people with AD may not be able to get around well. This is 

another problem that becomes more challenging to deal with as 

the disease gets worse. 

Some possible reasons for this include: 

•		 Trouble with endurance 

•		 Poor coordination 

•		 Sore feet or muscles 

•		 Illness 

•		 Depression or general lack of interest 

Even if people have trouble walking, they may be able to: 

•		 Do simple tasks around the home, such as 
 

sweeping and dusting.



•		 Use a stationary bike. 

•		 Use soft rubber exercise balls or balloons for 
 

stretching or throwing back and forth.



•		 Use stretching bands, which you can buy in sporting 

goods stores. Be sure to follow the instructions. 

Caring for a Person with AD 39


Healthy eating 

Eating healthy foods helps us stay well. It’s even more important 

for people with AD. Here are some tips for healthy eating. 

When the person with AD lives with you: 

•		 Buy healthy foods such as vegetables, fruits, and 
 

whole-grain products. Be sure to buy foods that the 
 

person likes and can eat. 
 

•		 Buy food that is easy to prepare, such as pre-made 
 

salads and single food portions. 
 

• Have someone else make meals if possible. 

•		 Use a service such as Meals on Wheels, which will 

bring meals right to your home. For more 

information, contact the Meals on Wheels 

organization at 1-888-998-6325 (www.mowaa.org). 

See page 60 for more information about this service. 

When a person with early-stage AD lives alone: 

• Follow the steps above. 

• Buy foods that the person doesn’t need to cook. 

•		 Call to remind him or her to eat. 

In the early stage of AD, the person’s eating habits usually 

don’t change. When changes do occur, living alone may not be 

safe anymore. 

Look for these signs to see if living alone 

is no longer safe for the person with AD: 

• The person forgets to eat. 

•		 Food has burned because it 

was left on the stove. 

•		 The oven isn’t turned off. 

For tips on helping someone with 

late-stage AD eat well, see page 88. 

40 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD Everyday care 

At some point, people with AD will need help bathing, combing 

their hair, brushing their teeth, and getting dressed. Because these 

are private activities, people may not want help. They may feel 

embarrassed about being naked in front of caregivers. They also may 

feel angry about not being able to care for themselves. Below are 

suggestions that may help with everyday care. 

Bathing 

Helping someone with AD take a bath or shower can be one of the 

hardest things you do. Planning can help make the person’s bath 

time better for both of you. 

The person with AD may be afraid. If so, follow the person’s lifelong 

bathing habits, such as doing the bath or shower in the morning or 

before going to bed. Here are other tips for bathing. 

Safety tips: 

•		 Never leave a confused or frail person alone in 
 

the tub or shower. 
 

•		 Always check the water temperature before he or she 
 

gets in the tub or shower. 
 

•		 Use plastic containers for shampoo or soap to prevent 

them from breaking. 

•		 Use a hand-held showerhead. 

•		 Use a rubber bath mat and put safety bars in the tub. 

•		 Use a sturdy shower chair in the tub or shower. This 
 

will support a person who is unsteady, and it could 
 

prevent falls. You can get shower chairs at drug stores 
 

and medical supply stores.



Caring for a Person with AD 41


Before a bath or shower: 

•		 Get the soap, washcloth, towels, and shampoo ready. 

•		 Make sure the bathroom is warm and well lighted. 

Play soft music if it helps to relax the person. 

•		 Be matter-of-fact about bathing. Say, “It’s time for a 

bath now.” Don’t argue about the need for a bath 

or shower. 

•		 Be gentle and respectful. Tell the person what you 

are going to do, step-by-step. 

•		 Make sure the water temperature in the bath or 

shower is comfortable. 

•		 Don’t use bath oil. It can make the tub slippery and 

may cause urinary tract infections. 

During a bath or shower: 

•		 Allow the person with AD to do as much as possible. 

This protects his or her dignity and helps the person 

feel more in control. 

•		 Put a towel over the person’s shoulders or lap. This 

helps him or her feel less exposed. Then use a sponge 

or washcloth to clean under the towel. 

•		 Distract the person by talking about something else if 

he or she becomes upset. 

•		 Give him or her a washcloth to hold. This makes it 

less likely that the person will try to hit you. 

42 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

After a bath or shower: 

•		 Prevent rashes or infections by patting the person’s 

skin with a towel. Make sure the person is completely 

dry. Be sure to dry between folds of skin. 

•		 If the person has trouble with incontinence, use a 

protective ointment, such as Vaseline®, around the 

rectum, vagina, or penis. 

•		 If the person with AD has trouble getting in and out 

of the bathtub, do a sponge bath instead. 

Other bathing tips: 

•		 Give the person a full bath two or three times a week. 

For most people, a sponge bath to clean the face, 

hands, feet, underarms, and genital or “private” area 

is all you need to do every day. 

•		 Washing the person’s hair in the sink may be easier 

than doing it in the shower or bathtub. You can buy a 

hose attachment for the sink. 

•		 Get professional help with bathing if it becomes 

too hard for you to do on your own. See page 59 for 

information on home health care services. 

Caring for a Person with AD 43


Grooming 

For the most part, when people feel good about how they look, 

they feel better. Helping people with AD brush their teeth, shave, 

or put on makeup often means they can feel more like themselves. 

Here are some grooming tips. 

Mouth care: 

Good mouth care helps prevent dental problems such as 

cavities and gum disease. 

•		 Show the person how to brush his or her teeth. Go 
 

step-by-step. For example, pick up the toothpaste, 
 

take the top off, put the toothpaste on the 
 

toothbrush, and then brush. Remember to let the 
 

person do as much as possible. 
 

•		 Brush your teeth at the same time. 

•		 Help the person clean his or her dentures. Make 
 

sure he or she uses the denture cleaning material 
 

the right way. 
 

•		 Ask the person to rinse his or her mouth with water 

after each meal and use mouthwash once a day. 

•		 Try a long-handled, angled, or electric toothbrush if 

you need to brush the person’s teeth. 

•		 Take the person to see a dentist. Some dentists 

specialize in treating people with AD. Be sure to 

follow the dentist’s advice about how often to make 

an appointment. 

Other grooming tips: 

•		 Encourage a woman to wear makeup if she has always 

used it. If needed, help her put on powder and 

lipstick. Don’t use eye makeup. 

•		 Encourage a man to shave, and help him as needed. 

Use an electric razor for safety. 

•		 Take the person to the barber or beauty shop. Some 

barbers or hairstylists may come to your home. 

•		 Keep the person’s nails clean and trimmed. 

44 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

Dressing 

People with AD often need more time to dress. It can be hard for 

them to choose their clothes. They might wear the wrong 

clothing for the season. They also might wear colors that don’t go 

together or forget to put on a piece of clothing. Allow the person 

to dress on his or her own for as long as possible. 

Other tips include the following: 

•		 Lay out clothes in the order the person should put 

them on, such as underwear first, then pants, then a 

shirt, and then a sweater. 

•		 Hand the person one thing at a time or give 
 

step-by-step dressing instructions. 
 

•		 Put away some clothes in another room to reduce the 

number of choices. Keep only one or two outfits in 

the closet or dresser. 

•		 Keep the closet locked if needed. This prevents 
 

some of the problems people may have while 
 

getting dressed. 
 

•		 Buy three or four sets of the same clothes, if the 
 

person wants to wear the same clothing every day. 
 

•		 Buy loose-fitting, comfortable clothing. Avoid 

girdles, control-top pantyhose, knee-high nylons, 

garters, high heels, tight socks, and bras for women. 

Sports bras are comfortable and provide good support. 

Short cotton socks and loose cotton underwear are 

best. Sweat pants and shorts with elastic waistbands 

are helpful. 

•		 Use Velcro® tape or large zipper pulls for clothing, 
 

instead of shoelaces, buttons, or buckles. Try 
 

slip-on shoes that won’t slide off or shoes with 
 

Velcro® straps. 
 

Caring for a Person with AD 45


Adapting Activities for 

People with AD 

Doing things we enjoy gives us pleasure and adds meaning to our 

lives. People with AD need to be active and do things they enjoy. 

However, don’t expect too much. It’s not easy for them to plan 

their days and do different tasks. 

Here are two reasons: 

•		 They may have trouble deciding what to do each day. 

This could make them fearful and worried or quiet and 

withdrawn. 

•		 They may have trouble starting tasks. Remember, the 

person is not being lazy. He or she might need help 

organizing the day or doing an activity. 

Daily activities 

Plan activities that the person with AD enjoys. He or she can be 

a part of the activity or just watch. Also, you don’t always have to 

be the “activities director.” For information on adult day care 

services that might help you, see page 61. 

Here are things you can do to help the person enjoy an activity: 

•		 Match the activity with what the person with AD can do. 

•		 Choose activities that can be fun for everyone. 

•		 Help the person get started. 

•		 Decide if he or she can do the activity alone or needs help. 

•		 Watch to see if the person gets frustrated. 

•		 Make sure he or she feels successful and has fun. 

•		 Let him or her watch if that is more enjoyable. 

The person with AD can do different activities each day. 

This keeps the day interesting and fun. The following pages 

may give you some ideas. 

“Mom has always 

been a social person. 

Even though she 

can’t remember some 

family and friends, 

she still loves being 

around people.” 

46 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

Household chores 

Doing household chores can boost the person’s self-esteem. When 

the person helps you, don’t forget to say “thank you.” 

The person could: 

• Wash dishes, set the table, or prepare food. 

• Sweep the floor. 

• Polish shoes. 

• Sort mail and clip coupons. 

• Sort socks and fold laundry. 

• Sort recycling materials or other things. 

Cooking and baking 

Cooking and baking can bring the person with AD a lot of joy. 

He or she might help do the following: 

• Decide on what is needed to prepare the dish. 

• Make the dish. 

• Measure, mix, and pour. 

• Tell someone else how to prepare a recipe. 

• Taste the food. 

• Watch others prepare food. 

Children 

Being around children also can be fun. It gives the person with 

AD someone to talk with and may bring back happy memories. 

It also can help the person realize how much he or she still can 

love others and can still be loved. 

Here are some things the person might enjoy doing with children: 

• Play a simple board game. 

• Read stories or books. 

• Visit family members who have small children. 

• Walk in the park or around schoolyards. 

• Go to sports or school events that involve young people. 

• Talk about fond memories from childhood. 

Caring for a Person with AD 47


Music and dancing 

Music can bring back happy memories and feelings. Some people 

feel the rhythm and may want to dance. Others enjoy listening to 

or talking about their favorite music. Even if the person with AD 

has trouble finding the right words to speak, he or she still may 

be able to sing songs from the past. 

Consider the following musical activities: 

• Play CDs, tapes, or records. 

• Talk about the music and the singer. 

• Ask what he or she was doing when the song was popular. 

• Talk about the music and past events. 

• Sing or dance to well-known songs. 

• Play musical games like “Name That Tune.” 

• Attend a concert or musical program. 

Pets 

Many people with AD enjoy pets, such as dogs, cats, or birds. Pets 

may help “bring them to life.” Pets also can help people feel more 

loved and less worried. 

Suggested activities with pets include: 

• Care for, feed, or groom the pet. 

• Walk the pet. 

• Sit and hold the pet. 

Gardening 

Gardening is a way to be part of nature. It also may help people 

remember past days and fun times. Gardening can help the person 

focus on what he or she still can do. 

Here are some suggested gardening activities: 

• Take care of indoor or outdoor plants. 

• Plant flowers and vegetables. 

• Water the plants when needed. 

• Talk about how much the plants are growing. 

48 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

Going out 

Early in the disease, people with AD may still enjoy the same 

kinds of outings they enjoyed in the past. Keep going on these 

outings as long as you are comfortable doing them. 

Plan outings for the time of day when the person is at his or her 

best. Keep outings from becoming too long. You want to note how 

tired the person with AD gets after a certain amount of time 

(1/2 hour, 1 hour, 2 hours, etc.). 

The person might enjoy outings to a: 

• Favorite restaurant 

• Zoo, park, or shopping mall 

• Swimming pool (during a slow time of day at the pool) 

• Museum, theater, or art exhibits for short trips 

Remember that you can use a business-size card, as shown below, 

to tell others about the person’s disease. Sharing the information 

with store clerks or restaurant staff can make outings more 

comfortable for everyone. 

My family member has

Alzheimer’s disease.

He might say or do

things that are unexpected.

Thank you for your

understanding. 

Caring for a Person with AD 49


Eating out 

Going out to eat can be a welcome change. But, it also can have 

some challenges. Planning can help. You need to think about the 

layout of the restaurant, the menu, the noise level, waiting times, and 

the helpfulness of staff. Below are some tips for eating out with the 

person who has AD. 

Before choosing a restaurant, ask yourself: 

•		 Does the person with AD know the restaurant well? 

•		 Is it quiet or noisy most of time? 

•		 Are tables easy to get to? Do you need to wait 
 

before you can be seated? 
 

•		 Is the service quick enough to keep the person from 
 

getting restless?



•		 Does the restroom meet the person’s needs? 

•		 Are foods the person with AD likes on the menu? 

•		 Is the staff understanding and helpful? 

Before going to the restaurant, decide: 

•		 Is it a good day to go? 

•		 When is the best time to go? Going out earlier in the day 

may be best, so the person is not too tired. Service may 

be quicker, and there may be fewer people. If you decide 

to go later, try to get the person to take a nap first. 

•		 What should you take with you? You may need to take utensils, 

a towel, wipes, or toilet items that the person already uses. 

If so, make sure this is OK with the restaurant. 

50 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

At the restaurant: 

•		 Tell the waiter or waitress about any special needs, 

such as extra spoons, bowls, or napkins. 

•		 Ask for a table near the washroom and in a quiet area. 

•		 Seat the person with his or her back to the busy areas. 

•		 Help the person choose his or her meal, if needed. 

Suggest food you know the person likes. Read parts of 

the menu or show the person a picture of the food. 

Limit the number of choices. 

•		 Ask the waiter or waitress to fill glasses half full or 

leave the drinks for you to serve. 

•		 Order some finger food or snacks to hold the 
 

attention of the person with AD.



•		 Go with the person to the restroom. Go into the stall 

if the person needs help. 

Caring for a Person with AD 51

Traveling 

Taking the person with AD on a trip is a challenge. Traveling 

can make the person more worried and confused. Planning can 

make travel easier for everyone. Below are some tips that you 

may find helpful. 

Before you leave on the trip: 

•		 Talk with your doctor about medicines to calm 
 

someone who gets upset while traveling. 
 

•		 Find someone to help you at the airport or train station. 

•		 Keep important documents with you in a safe place. 

These include: insurance cards, passports, doctor’s 

name and phone number, list of medicines, and a 

copy of medical records. 

•		 Pack items the person enjoys looking at or holding 

for comfort. 

•		 Travel with another family member or friend. 

•		 Take an extra set of clothing in a carry-on bag. 

After you arrive: 

•		 Allow lots of time for each thing you want to do. 

Do not plan too many activities. 

•		 Plan rest periods. 

•		 Follow a routine like the one you use at home. 

For example, try to have the person eat, rest, and go 

to bed at the same time he or she does at home. 

•		 Keep a well-lighted path to the toilet, and leave the 

bathroom light on all night. 

•		 Be prepared to cut your visit short. 

People with memory problems may wander around a place 

they don’t know well (see “How to cope with wandering” 

on page 20). 

In case someone with AD gets lost: 

•		 Make sure they wear or have something with them that 

tells who they are, such as an ID bracelet. 

•		 Carry a recent photo of the person with you on the trip. 

52 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

Spiritual activities 

Like you, the person with AD may have spiritual needs. If so, 

you can help the person stay part of his or her faith community. 

This can help the person feel connected to others and 

remember pleasant times. 

Here are some tips for helping a person with 

AD who has spiritual needs: 

•		 Involve the person in spiritual activities that he or 

she has known well. These might include worship, 

religious or other readings, sacred music, prayer, and 

holiday rituals. 

•		 Tell people in your faith community that the person 

has AD. Encourage them to talk with the person and 

show him or her that they still care. 

•		 Play religious or other music that is important to the 

person. It may bring back old memories. Even if the 

person with AD has a problem finding the right 

words to speak, he or she still may be able to sing 

songs or hymns from the past. 

Caring for a Person with AD 53


Holidays 

Many caregivers have mixed feelings about holidays. They may 

have happy memories of the past. But, they also may worry about 

the extra demands that holidays make on their time and energy. 

Here are some suggestions to help you find a balance between 

doing many holiday-related things and resting: 

•		 Celebrate holidays that are important to you. Include 

the person with AD as much as possible. 

•		 Understand that things will be different. Be realistic 

about what you can do. 

•		 Ask friends and family to visit. Limit the number of 

visitors at any one time. Plan visits when the person 

usually is at his or her best (see the section about 

“Visitors” on the next page). 

•		 Avoid crowds, changes in routine, and strange 
 

places that may make the person with AD feel 
 

confused or nervous. 
 

•		 Do your best to enjoy yourself. Find time for the 

holiday activities you like to do. Ask a friend or 

family member to spend time with the person while 

you’re out. 

•		 Make sure there is a space where the person can rest 

when he or she goes to larger gatherings such as 

weddings or family reunions. 

54 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for a Person with AD 

Visitors 

Visitors are important to people with AD. They may not always 

remember who visitors are, but they often enjoy the company. 

Here are ideas to share with a person planning to visit 

someone with AD: 

•		 Plan the visit when the person with AD is at his or her best. 

•		 Consider bringing along some kind of activity, such as 

a well-known book or photo album to look at. This 

can help if the person is bored or confused and needs 

to be distracted. But, be prepared to skip the activity 

if it is not needed. 

•		 Be calm and quiet. Don’t use a loud voice or talk to the 

person as if he or she were a child. 

•		 Respect the person’s personal space, and don’t get too close. 

•		 Make eye contact and call the person by name to get his 

or her attention. 

•		 Remind the person who you are if he or she doesn’t seem 

to know you. Try not to say “Don’t you remember?” 

•		 Don’t argue if the person is confused. Respond to the 

feelings that they express. Try to distract the person by 

talking about something different. 

•		 Remember not to take it personally if the person 

doesn’t recognize you, is unkind, or gets angry. He or 

she is acting out of confusion. 

Caring for a Person with AD 55

When You Need Help 

Getting Help with Caregiving 

Some caregivers need help when the person is in the early stages 

of AD. Other caregivers look for help when the person is in the 

later stages of AD. It’s okay to seek help whenever you need it. 

As the person moves through the stages of AD, he or she will 

need more care. One reason is that medicines used to treat AD 

can only control symptoms; they cannot cure the disease. 

Symptoms, such as memory loss and confusion, will get worse 

over time. 

Because of this, you will need more help. You may feel that 

asking for help shows weakness or a lack of caring, but the 

opposite is true. Asking for help shows your strength. It means 

you know your limits and when to seek support. 

Build a support system 

According to many caregivers, building a local support system is 

a key way to get help. Your support system might include your 

caregiver support group, the local chapter of the Alzheimer’s 

Association, family, friends, and faith groups. 

Call the ADEAR Center at 1-800-438-4380, the Alzheimer’s 

Association at 1-800-272-3900, and the Eldercare Locator 

at 1-800-677-1116 to learn about where to get help in your 

community. On the following pages, we list other national and 

local resources that can help you with caregiving. 

56 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

When You Need Help 

Information resources 

Here are some places along with their phone numbers that can 

give you support and advice: 

Alzheimer’s and related Dementias Education 
 

and Referral (ADEAR) Center



Email: adear@nia.nih.gov


Phone: 1-800-438-4380

 

www.nia.nih.gov/alzheimers



The ADEAR Center offers information on diagnosis, 

treatment, patient care, caregiver needs, long-term care, and 

research and clinical trials related to AD. Staff can refer you 

to local and national resources, or you can search for 

information on the website. The Center is a service of the 

National Institute on Aging, part of the Federal 

Government’s National Institutes of Health. They have 

information to help you understand Alzheimer’s disease. 

You can also get hints on other subjects, including: 

• talking with the doctor 

• financial and legal planning 

• medicines 

• comfort care at the end of life 

Alzheimer’s Association



Phone: 1-800-272-3900

 

www.alz.org



The Alzheimer’s Association offers information, a help line, 

and support services to people with AD and their caregivers. 

Local chapters across the country offer support groups, 

including many that help with early-stage AD. Call or go 

online to find out where to get help in your area. The 

Association also funds AD research. 

When You Need Help 57


Alzheimer’s Foundation of America 

Phone: 1-866-232-8484 

www.alzfdn.org 

The Alzheimer’s Foundation of America provides information 

about how to care for people with AD as well as a list of 

services for people with AD. It also offers information for 

caregivers and their families through member organizations. 

Services include a toll-free hotline, publications, and other 

educational materials. 

Eldercare Locator 

Phone: 1-800-677-1116 

www.eldercare.gov 

Caregivers often need information about community 

resources, such as home care, adult day care, and nursing 

homes. Contact the Eldercare Locator to find these resources 

in your area. The Eldercare Locator is a service of the 

Administration on Aging. The Federal Government funds 

this service. 

National Institute on Aging 

Information Center 

Email: niaic@nia.nih.gov 

Phone: 1-800-222-2225 

TTY: 1-800-222-4225 

www.nia.nih.gov/health 

The NIA Information Center offers free helpful publications 

about aging. Many of these publications are in both English 

and Spanish. They can be viewed, printed, and ordered online. 

58 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

When You Need Help 

Direct services—groups that help with 

everyday care in the home 

Here is a list of services that can help you care for the person with 

AD at home. Find out if these services are offered in your area. 

Also, contact Medicare to see if they cover the cost of any of 

these services. See page 64 for Medicare contact information. 

Home health care services 

What they do: 

Send a home health aide to your home to help you care for a 

person with AD. These aides provide care and/or company for the 

person. They may come for a few hours or stay for 24 hours. Some 

home health aides are better trained and supervised than others. 

What to know about costs: 

•		 Home health services charge by the hour. 

•		 Medicare covers some home health service costs. 

•		 Most insurance plans do not cover these costs. 

•		 You must pay all costs not covered by Medicare, 
 

Medicaid, or insurance.



How to find them: 

•		 Ask your doctor or other health care professional 
 

about good home health care services in your area.



•		 Search the Internet for “home health care” in your 
 

area.



Home Health Care Services 

Some home health care services are very good; others are not. You should get 

as much information as possible about a service before you sign an agreement. 

You need to ask home health care providers for references from people who have 

used their services. If possible, check for any complaints filed against a service. 

At Medicare’s Home Health Compare, www.medicare.gov/homehealthcompare, 

you can learn more about some of the home health care providers in your state. 

Or call Medicare at 1-800-633-4227 for the same information. You can also 

check with community, county, or State agencies that regulate health services or 

contact the Better Business Bureau in your area. 

When You Need Help 59


Here are some questions you might ask before signing a home 

health care agreement: 

•		 Is your service licensed and accredited? 

•		 What is the cost of your services? 

•		 What is included and not included in your services? 

•		 How many days a week and hours a day will an aide 

come to my home? 

•		 Is there a minimum number of hours required? 

•		 How do you check the background and experience of 

your home health aides? 

•		 How do you train your home health aides? 

•		 Can I get special help in an emergency? 

•		 What types of emergency care can you provide? 

•		 Whom do I contact if there is a problem? 

Meal services 

What they do: 

•		 Bring hot meals to the person’s home or your home. 

The delivery staff do not feed the person. 

What to know about costs: 

•		 The person with AD must qualify for the service 


based on local guidelines. 


•		 Some groups do not charge for their services. 
 

Others may charge a small fee.



How to find them: 

•		 The Eldercare Locator can help at 1-800-677-1116 or 

www.eldercare.gov. Or, call the Meals on Wheels 

organization at 1-888-998-6325 or visit their website 

at www.mowaa.org. 

60 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

When You Need Help

Adult day care services 

What they do: 

•		 Provide a safe environment, activities, and staff who 

pay attention to the needs of the person with AD in an 

adult day care facility 

•		 Provide a much-needed break for you 

•		 Provide transportation—the facility may pick up the person, 

take him or her to day care, and then return the person home 

What to know about costs: 

•		 Adult day care services charge by the hour. 

•		 Most insurance plans don’t cover these costs. You must 

pay all costs not covered by insurance. 

How to find them: 

•		 Call the National Adult Day Services Association at 

1-877-745-1440, or visit their website at www.nadsa.org/ 

consumers/choosing-a-center. You also can call the Eldercare 

Locator at 1-800-677-1116, or visit their website at 

www.eldercare.gov. 

Respite services 

What they do: 

•		 Provide short-term care for the person with AD at home, in 

a health care facility, or at an adult day center. The care may 

last for as short as a few hours or as long as several weeks. 

•		 Allow you to get a break to rest or go on a vacation 

What to know about costs: 

•		 Respite services charge by the hour or by the number of 

days or weeks that services are provided. 

•		 Most insurance plans do not cover these costs. You must pay 

all costs not covered by insurance or other funding sources. 

• 	 Medicare will cover most of the cost of up to 5 days in a row 

of respite care in a hospital or skilled nursing facility for a 

person receiving hospice care. 

• 	 Medicaid also may offer assistance. For more information 

on Medicare and Medicaid, see page 64. 

• 	 There may be other sources of funding in your state. Visit 

the ARCH National Respite Locator for more information. 

When You Need Help 61


How to find them: 

•		 Visit the ARCH National Respite Locator 
 

at https://archrespite.org/respitelocator.



Geriatric care managers 

What they do: 

•		 Make a home visit and suggest needed services 

•		 Help you get needed services 

What to know about costs: 

•		 Geriatric care managers charge by the hour. 

•		 Most insurance plans don’t cover these costs. 

•		 Medicare does not pay for this service. 

•		 You will probably have to pay for this service. 

How to find them: 

•		 Call the Aging Life Care Association at 
 

1-520-881-8008, or visit its website at 
 

www.aginglifecare.org.



Counseling from a mental health or 

social work professional 

What they do: 

•		 Help you deal with any stress you may be feeling 

•		 Help you understand your feelings, such as anger, 

sadness, or feeling out of control and overwhelmed 

•		 Help develop plans for unexpected or sudden events 

What to know about costs: 

•		 Professional mental health counselors charge by the 

hour. There may be big differences in the rates you 

would be charged from one counselor to another. 

•		 Some insurance companies will cover some of these costs. 

•		 Medicare or Medicaid may cover some of these costs. 

•		 You must pay all costs not covered by Medicare, 
 

Medicaid, or insurance.



62 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

When You Need Help 

How to find them: 

•		 It’s a good idea to ask your health insurance staff 

which counselors and services, if any, your insurance 

plan covers. Then check with your doctor, local 

family service agencies, and community mental health 

agencies for referrals to counselors. 

Hospice services 

What they do: 

•		 Provide care for a person who is near the end of life 

•		 Keep the person who is dying as comfortable and 
 

pain-free as possible



•		 Provide care in the home or in a hospice facility 

•		 Support the family in providing in-home or end-of-life care 

What to know about costs: 

•		 Hospice services charge by the number of days or weeks 

that services are provided. 

•		 Medicare or Medicaid may cover hospice costs. 

•		 Most insurance plans do not cover these costs. 

•		 You must pay all costs not covered by Medicare, 
 

Medicaid, or insurance.



How to find them: 

•		 National Association for Home Care & Hospice at 

1-202-547-7424 or https://agencylocator.nahc.org 

•		 Hospice Foundation of America at 
 

1-800-854-3402 or www.hospicefoundation.org



•		 National Hospice and Palliative Care Organization at 

1-800-658-8898 or www.nhpco.org/find-hospice 

When You Need Help 63


Government benefits—financial help from 

Federal and State Government programs 

Federal and State Government programs can provide financial 

support and services. 

Medicare 

Medicare is a Federal Government health insurance program that 

pays some medical costs for people age 65 and older. It also pays 

some medical costs for those who have gotten Social Security 

Disability Income (discussed later in this section) for 24 months. 

Here are brief descriptions of what Medicare will pay for: 

Medicare Part A 

•		 Hospital costs after you pay a certain amount, 

called the “deductible” 

•		 Short stays in a nursing home for certain kinds of 

illnesses 

Medicare Part B 

•		 Part of the costs for doctor’s services, outpatient care, 

and other medical services that Part A does not cover 

•		 Some preventive services, such as flu shots and diabetes 

screening 

Medicare Part D 

•		 Some medication costs 

You can find more information at www.medicare.gov, or call 

1-800-633-4227, TTY: 1-877-486-2048. 

Medicaid 

Medicaid is a combined Federal and State program for low-income 

people and families. Medicaid will pay the costs of some types of 

long-term care for some people and their families. You must meet 

certain financial requirements. 

To learn more about Medicaid: 

Phone: 1-877-267-2323 

TTY: 1-866-226-1819 

www.medicaid.gov 

Or, contact your state health department. For a state-by-state list, 

visit www.medicaid.gov/medicaid/by-state/by-state.html. 

64 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

When You Need Help 

Program of All-Inclusive Care 

for the Elderly (PACE) 

PACE is a program that combines Medicare and Medicaid benefits. 

PACE may pay for some or all of the long-term care needs of the 

person with AD. It covers medical, social service, and long-term 

care costs for frail people. PACE permits most people who qualify 

to continue living at home instead of moving to a long-term care 

facility. PACE is available only in certain States and locations 

within those States. Also, there may be a monthly charge. You will 

need to find out if the person qualifies for PACE. 

To find out more about PACE: 
 

Phone: 1-877-267-2323



www.medicare.gov/your-medicare-costs/help-paying-costs/pace/



pace.html



Social Security Disability Income 

This type of Social Security help is for people younger than 

age 65 who are disabled according to the Social Security 

Administration’s definition. 

You must be able to show that: 

• The person with AD is unable to work, and 

• The condition will last at least a year, or 

• The condition is expected to result in death. 

Social Security has “compassionate allowances” to help people 

with early-onset Alzheimer’s disease, mixed dementia, 

frontotemporal dementia/Pick’s disease, primary progressive 

aphasia, and certain other serious medical conditions get 

disability benefits more quickly. 

To find out more about Social Security Disability Income: 

Phone: 1-800-772-1213 

TTY: 1-800-325-0778 

www.ssa.gov 

State Health Insurance Assistance 

Program (SHIP) 

SHIP is a national program offered in each State that provides 

free counseling and advice about coverage and benefits to people 

with Medicare and their families. To contact a SHIP counselor in 

your State, visit www.shiptacenter.org. 

When You Need Help 65


Department of Veterans Affairs 

The U.S. Department of Veterans Affairs (VA) may provide 

long-term care for some veterans. There could be a waiting list for 

VA nursing homes. The VA also provides some at-home care. 

To learn more about VA health care benefits: 

Phone: 1-877-222-8387 

www.va.gov/health 

National Council on Aging 

The National Council on Aging, a private group, has a free 

service called BenefitsCheckUp®. This service can help you find 

Federal and State benefit programs that may help your family. 

These programs can help pay for prescription drugs, heating bills, 

housing, meal programs, and legal services. 

BenefitsCheckUp® also can help you find: 

• Financial assistance 

• Veteran’s benefits 

• Employment/volunteer work 

• Helpful information and resources 

To learn more about BenefitsCheckUp®: 

Phone: 1-571-527-3900 

www.benefitscheckup.org 

66 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

When You Need Help 

Finding the Right Place 

for the Person with AD 

Sometimes you can no longer care for the person with AD at 

home. The person may need around-the-clock care. Or, he or she 

may be incontinent, aggressive, or wander a lot. It may not be 

possible for you to meet all of his or her needs at home anymore. 

When that happens, you may want to look for another place for 

the person with AD to live. You may feel guilty or upset about this 

decision, but remember that many caregivers reach this point as 

the disease worsens. Moving the person to a care facility may give 

you greater peace of mind. You will know that the person with AD 

is safe and getting good care. 

Choosing the right place is a big decision. It’s hard to know 

where to start. 

Below we list steps you can take to find the right place: 

1. Gather information 

•		 Talk with your support group members, social worker, doctor, 

family members, and friends about facilities in your area. 

•		 Make a list of questions to ask about the facility. 

•		 Call to set up a time to visit. 

Check these resources: 

Centers for Medicare and Medicaid Services (CMS)



1-800-MEDICARE (1-800-633-4227)



TTY: 1-877-486-2048



www.medicare.gov



CMS has a guide to help older people and their caregivers 

choose a good nursing home. It describes types of long-term 

care, questions to ask the nursing home staff, and ways to 

pay for nursing home care. CMS also offers a service called 

Nursing Home Compare on its website. This service has 

information on nursing homes that are Medicare or 

Medicaid certified. These nursing homes provide skilled 

nursing care. Please note that there are many other places 

that provide different levels of health care and help with 

daily living. Many of these facilities are licensed only at the 

State level. CMS also has information about the rights of 

nursing home residents and their caregivers. 

“We knew it was time 

to find another home 

for dad. But where? 

We had so many 

questions. And, more 

than anything, we 

wanted him to be safe 

and well cared for.” 

When You Need Help 67


Joint Commission 
 

1-630-792-5800



www.qualitycheck.org



www.jointcommission.org



The Joint Commission evaluates nursing homes, home 

health care providers, hospitals, and assisted living facilities 

to determine whether or not they meet professional 

standards of care. Consumers can learn more about the 

quality of health care facilities through their online service 

at www.qualitycheck.org. 

Other resources include: 

Argentum



1-703-894-1805



www.argentum.org



National Center for Assisted Living



1-202-842-4444



www.ahcancal.org/ncal



National Clearinghouse for Long-Term Care Information 

1-202-619-0724 

www.longtermcare.gov 

68 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

When You Need Help 

2. 	 Visit assisted living facilities and nursing homes 

Make several visits at different times of the day and evening. 

Ask yourself: 

•		 How does the staff care for the residents? 

•		 Is the staff friendly? 

•		 Does the place feel comfortable? 

• How do the people who live there look? 

• Do they look clean and well cared for? 

•		 Are mealtimes comfortable? 

•		 Is the facility clean and well-maintained? 

•		 Does it smell bad? 

• How do staff members speak to residents—with respect? 

Ask the staff: 

•		 What activities are planned for residents? 

•		 How many staff members are at the facility? How many 

of them are trained to provide medical care if needed? 

•		 How many people in the facility have AD? 

•		 Does the facility have a special unit for people with 

AD? If so, what kinds of services does it provide? 

•		 Is there a doctor who checks on residents on a 
 

regular basis? How often?



You also may want to ask staff: 

•		 What is a typical day like for the person with AD? 

•		 Is there a safe place for the person to go outside? 

•		 What is included in the fee? 

•		 How does my loved one get to medical appointments? 

Talk with other caregivers who have a loved one at the facility. 

Find out what they think about the place. 

Find out about total costs of care. Each facility is different. You 

want to find out if long-term care insurance, Medicaid, or 

Medicare will pay for any of the costs. Remember that Medicare 

only covers nursing home costs for a short time after the person 

with AD has been in the hospital for a certain amount of time. 

If you’re asked to sign a contract, make sure you understand what 

you are agreeing to. 

When You Need Help 69


Assisted living facilities 

Assisted living facilities have rooms or apartments. They’re for 

people who may need some help with daily tasks. Some assisted 

living facilities have special AD units. These units have staff 

who check on and care for people with AD. You will need to 

pay for the cost of the room or apartment, and you may need to 

pay extra for any special care. Some assisted living facilities are 

part of a larger organization that also offers other levels of care. 

For example, continuing care retirement communities also offer 

independent living and skilled nursing care. 

Group homes 

A group home is a home for people who can no longer take care 

of themselves. Several people who can’t care for themselves live 

in the home. At least one caregiver is on site at all times.The staff 

takes care of the people living there: making meals, helping with 

grooming and medication, and providing other care. You will 

need to pay the costs of the person with AD living in this kind of 

home. Remember that these homes may not be inspected or 

regulated, but may still provide good care. 

Check out the home and the staff. Visit at different times of the 

day and evening to see how the staff takes care of the residents. 

Also check to see how clean and comfortable the home is. You’ll 

want to look at how the residents get along with one another and 

with the staff. 

“Good advice from 

a friend regarding 

placing a loved one 

in an assisted living 

or other care facility: 

‘Do your research, 

ask questions ... make 

a decision.’ ” 

70 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

When You Need Help 

Nursing homes 

Nursing homes are for people who can’t care for themselves 

anymore. Some nursing homes have special AD care units. These 

units are often in separate sections of the building where staff 

members have special training to care for people with AD. Some 

units try to make the person feel more like he or she is at home. 

They provide special activities, meals, and medical care. 

In many cases, you will have to pay for nursing home care. Most 

nursing homes accept Medicaid as payment. Also, long-term care 

insurance may cover some of the nursing home costs. Nursing 

homes are inspected and regulated by State governments. 

How to make moving day easier 

Moving is very stressful. Moving the person with AD to an 

assisted living facility, group home, or nursing home is a big 

change for both the person and the caregiver. You may feel many 

emotions, from a sense of loss to guilt and sadness. You also may 

feel relieved. It is okay to have all these feelings. A social worker 

may be able to help you plan for and adjust to moving day. It’s 

important to have support during this difficult step. 

Here are some things that may help: 

•		 Know that the day can be very stressful. 

•		 Talk to a social worker about your feelings about 
 

moving the person into a new place. Find out how to 
 

help the person with AD adjust.



•		 Get to know the staff before the person moves into a facility. 

•		 Talk with the staff about ways to make the change to the 

assisted living facility or nursing home go better. 

•		 Don’t argue with the person with AD about why he or she 

needs to be there. 

Be an advocate 

Once the person has moved to his or her new home, check and 

see how the person is doing. As the caregiver, you probably know 

the person best. Look for signs that the person may need more 

attention, is taking too much medication, or may not be getting 

the care they need. Build a relationship with staff so that you work 

together as partners. 

When You Need Help 71


The Medical Side of AD 

Medicines to Treat AD 

Symptoms and Behaviors 

This chapter contains medical terms and drug names. 

People with AD may take medications to treat: 

•		 The disease itself 

•		 Mood or other behavior changes 

•		 Other medical conditions they may have 

Caregivers need to know about each medicine 

that a person with AD takes. 

Ask the doctor or pharmacist the questions below 

and write down the answers: 

•		 Why is this medicine being used? 

•		 What positive effects should I look for, and when? 

•		 How long will the person need to take it? 

•		 How much should he or she take each day? 

•		 When does the person need to take the medicine? 

•		 What are the side effects? 

•		 What can I do about these side effects? 

•		 Can the medicine be crushed and mixed into foods 

such as applesauce? 

•		 Can I get the medicine in a liquid form? 

•		 Can this medicine cause problems if taken 
 

with other medicines?



•		 Is this medicine available as a generic? 

72 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Medical Side of AD 

Reminders to take medicine 

People with AD often need help taking their medicine. If the 

person still lives alone, you may need to call and remind him or 

her. It’s also helpful to buy a pillbox and put pills for each day in 

the box. That way all the pills for the day are in one place. You 

can get pillboxes at a drugstore. As the disease gets worse, you 

will need to keep track of the person’s medicines. You also will 

need to make sure they take the medicine or you will need to 

give them the medicine. Ask the doctor or pharmacist about 

when to give the medications. 

Medicines to treat AD 

Both caregivers and doctors need to remember that no two 

people with AD are alike. This means that medications may work 

differently in different people. 

Many factors may play a role in the disease, such as: 

• Genes 

• Lifestyle 

• Earlier treatments 

• Other illnesses or problems 

• The person’s surroundings 

• Stage of AD 

Work closely with the doctor to learn which medicines to use for 

AD, how much to use, and when to use them. Check with the 

doctor to see if Medicare or private insurance will cover the cost 

of the medicines. Also, find out if you can buy the non-brand, 

also called generic, type of medicines. They often cost less than 

brand-name medicines. 

“Dad was nervous and 

depressed at the same 

time. He couldn’t sit 

still, but he also didn’t 

sleep well. His doctor 

gave him medicine to 

help. At first, he was 

too sleepy. Then, the 

doctor adjusted the 

medicine, and Dad’s 

doing better.” 

The Medical Side of AD 73


There are five medicines available to treat AD. Other promising 

new medicines are being tested. 

It’s important to understand that none of these medicines can 

cure or stop the disease. What they can do, for some people, is 

help slow down certain problems, such as memory loss. Slowing 

down memory loss can allow many people with AD to be more 

comfortable and independent for a longer time. 

Medicines for mild to moderate AD 

Medicines to treat mild to moderate AD all work in a similar way 

and may help reduce some symptoms. 

The names of these medicines are: 

•		 Aricept® (AIR-uh-sept), brand name; 
 

donepezil (doe-NEP-uh-zil), generic name



•		 Exelon® (EKS-uh-lawn), brand name; 
 

rivastigmine (riv-uh-STIG-meen), generic name



•		 Razadyne® (RAZZ-uh-dine), brand name; 
 

galantamine (guh-LAN-tuh-meen), generic name



Medicines for moderate to severe AD 

Aricept® is also approved to treat moderate to severe AD. 

Another medication, Namenda® (nuh-MEN-duh), may decrease 

symptoms, which could allow some people to do more things for 

themselves, such as using the toilet. The generic name of this 

drug is memantine (MEH-man-teen). 

Sometimes doctors use more than one medicine to treat moderate 

to severe AD. For example, they might use Aricept® and 

Namenda®, which work in different ways. Another medication, 

Namzaric® (nam-ZAR-ic), combines donepezil and memantine in 

a single pill. 

Ask the doctor 

about side effects 

Check with the doctor 

or pharmacist about any 

possible side effects of 

medication. Some side 

effects can be serious. 

74 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Medical Side of AD 

Medicines to treat behavior 

problems related to AD 

Behavior problems that can occur in AD include restlessness, 

anxiety, depression, trouble sleeping, and aggression. Other medical 

conditions or changes from AD may cause behavior problems. 

Experts agree that medicines to treat these behavior problems 

should be used only after other strategies that don’t use medicine 

have been tried. Some of these tips are listed on pages 12–22. 

If other strategies don’t work and the person with AD continues 

to be upset, restless, depressed, or aggressive, he or she may need 

medicine. Talk with the person’s doctor to figure out the cause of 

behavior changes and come up with an effective treatment plan 

to help with these problems. 

Remember the following tips about medicines: 

• 	 Use the lowest dose possible. 

•		 Watch for side effects. Be prepared to stop the 
 

medicine if they occur.



•		 Allow the medicine a few weeks to work. 

Below is a list of medicines used to help with depression, 

aggression, restlessness, and anxiety. 

Antidepressants are drugs used to treat depression and worry 

(also called anxiety). There are many other medicines to treat 

depression and anxiety. Talk about these medicines with the 

doctor. 

Examples of these medicines include: 

• Celexa® (Sa-LEKS-a), brand name; 
 

citalopram (SYE-tal-oh-pram), generic name



• Remeron® (REM-er-on), brand name; 
 

mirtazapine (MUR-taz-a-peen), generic name



• Zoloft® (ZO-loft), brand name; 
 

sertraline (SUR-truh-leen), generic name



• Wellbutrin® (wel-BYU-trin), brand name; 
 

bupropion (byoo-PROE-pee-on), generic name



• Cymbalta® (sim-BOL-te), brand name; 

duloxetine (doo-LOX-e-teen), generic name 

• Tofranil® (toe-FRA-nil), brand name; 

imipramine (im-IP-ra-meen), generic name 

Know about medicines 

Information about medicines 

changes over time. Check with the 

doctor, AD specialist, or pharmacist 

about the latest medicines. The 

doctor may prescribe newer drugs 

with different names than those 

listed in this guide. Also, remember 

that some medicines have both 

generic and brand names. 

The Medical Side of AD 75


Medicines to be used with caution 

There are some medicines, such as sleep aids, anti-anxiety 

drugs, anticonvulsants, and antipsychotics, that the person 

with AD should take only: 

•		 After the doctor has explained all the risks and side 

effects of the medicine 

•		 After other, safer non-medication options have not 

helped treat the problem 

You will need to watch closely for side effects from these 

medications. 

Sleep aids are used to help people get to sleep and stay asleep. 

People with AD should NOT use these drugs regularly because 

they make the person more confused and more likely to fall. 

Examples of these medicines include: 

•		 Ambien® (AM-bee-un), brand name; 
 

zolpidem (zole-PI-dem), generic name



•		 Lunesta® (lu-NES-ta), brand name; 
 

eszopiclone (ess-ZOP-eh-klone), generic name



•		 Sonata® (SO-nah-ta), brand name; 
 

zaleplon (ZAL-ee-plon), generic name



Anti-anxiety drugs are used to treat agitation. These drugs can 

cause sleepiness, dizziness, falls, and confusion. For this reason, 

doctors recommend using them only for short periods of time. 

Examples of these medicines include: 

•		 Ativan® (AT-eh-van), brand name; 
 

lorazepam (lor-AZ-eh-pam), generic name



•		 Klonopin® (KLON-uh-pin), brand name; 
 

clonazepam (klo-NAY-zeh-pam), generic name



Anticonvulsants are drugs sometimes used to treat severe 

aggression. Side effects may cause sleepiness, dizziness, mood 

swings, and confusion. 

Examples of these medicines include: 

•		 Depakote® (DEP-uh-cote), brand name; sodium 

valproate (so-DEE-um VAL-pro-ate), generic name 

•		 Tegretol® (TEG-ruh-tall), brand name; 

carbamazepine (KAR-ba-maz-ee-peen), generic name 

76 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Medical Side of AD 

•		 Trileptal® (tri-LEP-tall), brand name; oxcarbazepine 
 

(oks-kar-BAZ-eh-peen), generic name



Antipsychotics are drugs used to treat paranoia, hallucinations, 

agitation, and aggression. See pages 15–19 for more about these 

conditions. Side effects of using these drugs can be serious, 

including increased risk of death in some older people with 

dementia. They should ONLY be given to people with AD when 

the doctor agrees that the symptoms are severe. 

Examples of these medicines include: 

•		 Risperdal® (RISS-per-doll), brand name; risperidone 
 

(riss-PAIR-eh-dohn), generic name



•		 Seroquel® (SAIR-o-kwell), brand name; quetiapine 
 

(KWE-tye-uh-peen), generic name



•		 Zyprexa® (zye-PREKS-uh), brand name; olanzapine 
 

(o-LAN-zuh-peen), generic name



Medicines that people with AD should NOT take 

Anticholinergic drugs are used to treat many medical problems 

such as sleeping problems, stomach cramps, incontinence, asthma, 

motion sickness, and muscle spasms. Side effects, such as confusion, 

can be serious for a person with AD. These drugs should NOT be 

given to a person with AD. You might talk with the person’s doctor 

about other options. 

Examples of these drugs include: 

•		 Atrovent® (AT-row-vent), brand name; 
 

ipratropium (EYE-pra-troe-pee-um), generic name



•		 Dramamine® (DRA-me-meen), brand name; 

dimenhydrinate (dye-men-HYE-dri-nate), generic name 

•		 Diphenhydramine (dye-fen-HYE-dra-meen), 

generic name—includes brand names such as Benadryl® 

(BEN-a-dril) and Nytol® (NYE-tal) 

Medicines to treat other medical conditions 

Many people with AD also have other medical conditions such as 

diabetes, high blood pressure, or heart disease. They may take different medicines for these conditions. It’s important to track all the 

medicines they take. Make a list of the person’s medicines and take 

the list with you to every visit to a doctor. 

The Medical Side of AD 77


Common Medical Problems 

in People with AD 

A person with AD may have other medical problems over time, 

as we all do. These problems can cause more confusion and 

behavior changes. The person may not be able to tell you what is 

wrong. You need to watch for signs of illness and tell the doctor 

about what you see. 

The most common medical problems 

Fever 

Having a fever means that the person’s temperature is 2 degrees 

above his or her normal temperature. 

A fever may be a sign of: 

• Infection, caused by germs 

• Dehydration, caused by a lack of fluids 

• Heat stroke 

• Constipation (discussed later in this section) 

Don’t use a glass thermometer because the person might bite 

down on the glass. Use a digital thermometer, which you can 

buy at a grocery store or drugstore. 

Flu and pneumonia 

These diseases spread quickly from one person to another, and 

people with AD are more likely to get them. Make sure that the 

person gets a flu shot each year and a pneumonia shot once 

after age 65. Some older people need to get more than one 

pneumonia vaccine.The shots lower the chances that the person will 

get flu or pneumonia. For more information on these illnesses, visit the 

Centers for Disease Control and Prevention website, www.cdc.gov. 

Make sure the person sees the doctor 

Make sure the person with AD sees a health professional 

on a regular basis. This is the best thing you can do to 

help prevent medical problems. 

Call the doctor 

Call the doctor right 

away if the person 

with AD has a fever. 

78 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Medical Side of AD 

Flu and pneumonia may cause: 

•		 Fever (Not everyone with pneumonia has a fever.) 

•		 Chills 

•		 Aches and pains 

•		 Vomiting 

•		 Coughing 

•		 Breathing trouble 

Falls 

As AD gets worse, the person may have trouble walking and 

keeping his or her balance. He or she also may have changes in 

depth perception, which is the ability to understand distances. 

For example, someone with AD may try to step down when walking 

from a carpeted to a tile floor. This puts him or her at risk for falls. 

To reduce the chance of a fall: 

•		 Clean up clutter. 

•		 Remove throw rugs. 

•		 Use chairs with arms. 

•		 Put grab bars in the bathroom. 

•		 Use good lighting. 

•		 Make sure the person wears sturdy shoes with good traction. 

Dehydration 

Our bodies must have a certain amount of water to work well. If a person 

is sick or doesn’t drink enough fluid, he or she may become dehydrated. 

Signs of dehydration to look for include: 

•		 Dry mouth 

•		 Dizziness 

•		 Hallucinations (Don’t forget that hallucinations 
 

may be caused by the AD itself.)



•		 Rapid heart rate 

Be aware of how much fluid the person is drinking. This is even more 

important during hot weather or in homes without air conditioning. 

Also, look for signs of dehydration during the winter months when 

heat in your home can create a lot of dry air. 

The Medical Side of AD 79


Constipation 

People can have constipation—trouble having a bowel 

movement—when they: 

• Change what they eat 

• Take certain medicines, including Namenda® 

• Get less exercise than usual 

• Drink less fluid than usual 

Try to get the person to drink at least 6 glasses of liquid a day. 

Besides water, other good sources of liquid include: 

• Juice, especially prune juice 

• Gelatin, such as Jell-O® 

• Soup 

• Milk or melted ice cream 

• Decaffeinated coffee and tea 

• Liquid cereal, such as Cream of Wheat® 

Have the person eat foods high in fiber. Foods like dried apricots, 

raisins, or prunes; some dry cereals; or soybeans might help ease 

constipation. 

If possible, make sure that the person gets some exercise each day, 

such as walking. Call the doctor if you notice a change in the 

person’s bowel habits. 

Diarrhea 

Some medicines, including Alzheimer’s medications, may 

cause diarrhea—loose bowel movements. Certain medical 

problems also may cause diarrhea. Make sure the person takes in 

lots of fluids when he or she has diarrhea. Also, be sure to let the 

doctor know about this problem. 

80 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Medical Side of AD 

Incontinence 

Incontinence means a person can’t control his or her bladder 

and/or bowels. This may happen at any stage of AD, but it is 

more often a problem in the later stages. Signs of this problem 

are leaking urine, problems emptying the bladder, and soiled 

underwear and bed sheets. Be sure to let the doctor know if 

this happens. He or she may be able to treat the cause of 

the problem. 

Here are some examples of things that can be treated: 

•		 Urinary tract infection 

•		 Enlarged prostate gland 

•		 Too little fluid in the body (dehydration) 

•		 Diabetes that isn’t being treated 

•		 Taking too many water pills 

•		 Drinking too much caffeine 

•		 Taking medicines that make it hard to hold urine 

When you talk to the doctor, be ready to answer the 

following questions: 

•		 What medicines is the person taking? 

•		 Does the person leak urine when he or she laughs, 
 

coughs, or lifts something?



•		 Does the person urinate often? 

•		 Can the person get to the bathroom in time? 

•		 Is the person urinating in places other than the bathroom? 

•		 Is the person soiling his or her clothes or bed sheets 

each night? 

•		 Do these problems happen each day or once in 
 

a while? 
 

The Medical Side of AD 81


Here are some ways you can deal with incontinence: 

•		 Remind the person to go to the bathroom every 2 to 3 hours. 

•		 Show him or her the way to the bathroom, or take him or her. 

•		 Make sure that the person wears loose, comfortable 
 

clothing that is easy to remove. 
 

•		 Limit fluids after 6 p.m. if problems happen at night. 
 

Do not give the person fluids with caffeine, such as 
 

coffee or tea.



•		 Give the person fresh fruit before bedtime instead of 
 

fluids if he or she is thirsty. 
 

•		 Mark the bathroom door with a big sign that reads 
 

“Toilet” or “Bathroom.”



•		 Use a stable toilet seat that is at a good height. Using a 

colorful toilet seat may help the person identify the toilet. 

You can buy raised toilet seats at medical supply stores. 

•		 Help the person when he or she needs to use a public 
 

bathroom. This may mean going into the stall with 
 

the person or using a family or private bathroom.



Things you may want to buy: 

•		 Use adult disposable briefs or underwear, bed protectors, 

and waterproof mattress covers. You can buy these items 

at drugstores and medical supply stores. 

•		 Use a drainable pouch for the person who can’t 
 

control his or her bowel movements. Talk to the 
 

nurse about how to use this product.



Some people find it helpful to keep a record of how much food and 

fluid the person takes in and how often he or she goes to the 

bathroom. You can use this information to make a schedule of 

when he or she needs to go to the bathroom. 

Pain Alert 

Always remember that the person with AD may not be able to 

tell you when he or she is in pain. Watch the person’s face to 

see if it looks like he or she is in pain or feeling ill. Also, notice 

sudden changes in behavior such as increased yelling or striking 

out. If you are unsure what to do, call the doctor for help. 

82 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Medical Side of AD 

Dental problems 

As AD gets worse, people need help taking care of their 

teeth or dentures. 

Check the person’s mouth for any problems such as: 

•		 Sores 

•		 Decayed teeth 

•		 Food “pocketed” in the cheek or on the roof of the mouth 

•		 Lumps 

Be sure to take the person for dental checkups. Some people 

need medicine to calm them before they can see the dentist. 

Other medical problems 

People with AD can have the same medical problems as many older 

adults. Research suggests that some of these medical problems may be 

related to AD. 

For example, some heart and blood circulation problems, stroke, 

and diabetes are more common in people who have AD than in the 

general population. Diseases caused by infections also are common. 

Visiting the doctor 

It’s important that the person with AD gets regular medical care. 

Here are some tips to help you get ready for a visit to the 

doctor’s office: 

•		 Make an appointment during the person’s best time 
 

of day and when the office is not very crowded. 
 

•		 Let the office staff know before the visit about the person’s 

AD. Ask them for help to make the visit go smoothly. 

•		 Don’t tell the person with AD about the visit until the day 

of the visit or even right before it is time to go if visiting 

the doctor makes the person nervous. Be positive and 

matter of fact. 

•		 Take something he or she likes to eat or drink and any 
 

materials or activities the person enjoys.



The Medical Side of AD 83


•		 Have a friend or family member go with you, so that 

one of you can stay with the person while the other 

speaks with the doctor. 

•		 Take a brief summary listing the person’s medical 

history, primary care doctor, and current medications. 

Going to the emergency room 

A trip to the emergency room (ER) can be very stressful for both 

the person with AD and you. 

Here are some ways to cope with ER visits: 

•		 Take a list of medicines, insurance cards, the health 

care provider’s name and phone number, and advance 

directives. Advance directives are signed documents, 

such as a living will, that spell out a patient’s wishes 

for end-of-life care. 

•		 Ask a friend or family member to go with you or meet 

you in the ER. He or she can stay with the person while 

you answer questions. 

•		 Be ready to explain the symptoms and events leading 

up to the ER visit. You may have to repeat this more 

than once to different staff members. 

•		 Tell ER staff that the person has AD. Explain how best 

to talk with the person. 

•		 If the person with AD must stay overnight in the 

hospital, try to have a friend or family member stay 

with him or her. 

Hospitalization 

Get more tips in 

Hospitalization Happens 

at www.nia.nih.gov/ 

alzheimers/publication/ 

hospitalization-happens. 

Or call 1-800-438-4380. 

84 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Coping with the Last Stages of AD 

Coping with Late-Stage AD 

When a person moves to the later stages of AD, caregiving may 

become even harder. This section offers ways to cope with 

changes that take place during severe or late-stage AD. 

If caring for the person has become too much for you, see the 

chapter on “When You Need Help,” starting on page 56, for 

possible sources of help. 

When the person with AD can’t move 

If the person with AD can’t move around on his or her own, 

contact a home health aide, physical therapist, or nurse. Ask the 

doctor for a referral to one of these health professionals. They can 

show you how to move the person safely, such as changing his or 

her position in bed or in a chair. 

Also, a physical therapist can show you how to move the person’s 

body joints using range-of-motion exercises. During these 

exercises, you hold the person’s arms or legs, one at a time, and 

move and bend it several times a day. Movement prevents stiffness 

of the arms, hands, and legs. It also prevents pressure or bedsores. 

Coping with the Last Stages of AD 85


How to make someone with 

AD more comfortable 

Here are some ways to make the person with 

AD more comfortable: 

•		 Buy special mattresses and wedge-shaped seat cushions 

that reduce pressure sores. You can purchase these at a 

medical supply store or drugstore or online. Ask the 

home health aide, nurse, or physical therapist how 

to use the equipment. 

•		 Move the person to a different position at least 
 

every 2 hours.



•		 Use a lap board to rest the person’s arms and support 

the upper body when he or she is sitting up. 

•		 Give the person something to hold, such as a wash cloth, 

while being moved. The person will be less likely to grab 

onto you or the furniture. If he or she is weak on one 

side, stand on the weak side to support the stronger side 

and help the person change positions. 

“Even though my wife 

is a small person, I 

could hardly move her. 

It felt like my back 

was breaking. Thank 

goodness the nurse 

showed me how to 

hold my body before I 

tried to move my wife.” 

86 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Last Stages of AD 

How to keep from hurting yourself when 

moving the person with AD 

To keep from hurting yourself when moving someone 

with AD: 

•		 Know your strength when lifting or moving the 

person; don’t try to do too much. Also, be aware 

of how you position your body. 

•		 Bend at the knees and then straighten up by using 

your thigh muscles, not your back. 

•		 Keep your back straight, and don’t bend at the waist. 

•		 Hold the person as close as possible to avoid reaching 

away from your body. 

•		 Place one foot in front of the other, or space your feet 

comfortably apart for a wide base of support. 

•		 Use little steps to move the person from one seat to 

another. Don’t twist your body. 

•		 Use a transfer or “Posey” belt, shown below. You can buy 

this belt at a medical supply store or drugstore. To move 

the person, wrap the transfer belt around the person’s 

waist and slide him or her to the edge of the chair or bed. 

Face the person and place your hands under the belt on 

either side of his or her waist. Then bend your knees, and 

pull up by using your thigh muscles to raise the person 

from a seated to a standing position. 

Coping with the Last Stages of AD 87


How to make sure the person eats well 

In the later stages of AD, many people lose interest in food. 

You may begin to notice some changes in how or when the 

person eats. 

He or she may not: 

•		 Be aware of mealtimes 

•		 Know when he or she has had enough food 

•		 Remember to cook 

•		 Eat enough different kinds of foods 

This means the person may not be getting the foods or vitamins 

and minerals needed to stay healthy. Here are some suggestions to 

help the person with late-stage AD eat better. Remember that 

these are just tips. Try different things and see what works best for 

the person. 

You might try to: 

•		 Serve meals at the same time each day. 

•		 Make the eating area quiet. Turn off the TV, CD 
 

player, or radio. 
 

•		 Offer just one food at a time instead of filling the 
 

plate or table with too many things.



•		 Use colorful plates so the person can see the food. 

•		 Control between-meal snacks. Lock the refrigerator 

door and food cabinets if necessary. 

•		 Make sure the person’s dentures are tight fitting. 

Loose dentures or dentures with bumps or cracks may 

cause choking or pain, making it hard to eat. Take 

poorly fitting dentures out until the person can get 

dentures that fit. 

•		 Let the doctor know if 

your family member 

loses a lot of weight, 

for example, if he or 

she loses 10 pounds in 

a month. 

88 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Last Stages of AD 

Here are specific suggestions about foods to eat and 

liquids to drink: 

•		 Give the person finger foods to eat such as cheese, 

small sandwiches, small pieces of chicken, fresh fruits, 

or vegetables. Sandwiches made with pita bread are 

easier to handle. 

•		 Give him or her high-calorie, healthy foods to eat 

or drink, such as protein milk shakes. You can buy 

high-protein drinks and powders at grocery stores, 

drugstores, or discount stores. Also, you can mix 

healthy foods in a blender and let the person drink 

his or her meal. Use diet supplements if he or she is 

not getting enough calories. Talk with the doctor or 

nurse about what kinds of supplements are best. 

•		 Try to use healthy fats in cooking, such as olive oil. 

Also, use extra cooking oil, butter, and mayonnaise to 

cook and prepare food if the person needs more 

calories. If the person has heart disease, check with the 

doctor about how much and what kinds of fat to use. 

•		 If the person has diabetes or high blood pressure, 

check with the doctor or a nutrition specialist about 

which foods to limit. 

•		 Have the person take a multivitamin—a tablet, 

capsule, powder, liquid, or injection that adds 

vitamins, minerals, and other important things to a 

person’s diet. 

•	 Serve bigger portions at breakfast because it’s the 

first meal of the day. 

Coping with the Last Stages of AD 89


“Jack was having trouble 

swallowing. I started 

feeding him Jell-O®, 

applesauce, and 

high-protein drinks. 

These were easier for 

him to swallow.” 

What to do about swallowing problems 

As AD progresses to later stages, the person may no longer be 

able to chew and swallow easily. This is a serious problem. If the 

person chokes on each bite of food, there is a chance that the 

food could go into the lungs. This can cause pneumonia, which 

can lead to death. 

The following suggestions may help with swallowing: 

•		 Make sure you cut the food into small pieces, and make 

it soft enough to eat. 

•		 Grind food or make it liquid using a blender or baby 

food grinder. 

•		 Offer soft foods, such as ice cream, milk shakes, 
 

yogurt, soups, applesauce, gelatin, or custard.



•		 Don’t use a straw; it may cause more swallowing 
 

problems. Instead, have the person drink small 
 

sips from a cup.



•		 Limit the amount of milk the person drinks if it tends 

to catch in the throat. 

•		 Give the person more cold drinks than hot drinks. 

Cold drinks are easier to swallow. 

•		 Don’t give the person thin liquids, such as coffee, tea, 

water, or broth, because they are hardest to swallow. 

You can buy Thick-It® at most pharmacies. You add 

Thick-It® to liquids to make them thicker. You also 

can use ice cream and sherbet to thicken liquids. 

90 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Last Stages of AD 

Here are some other ideas to help people swallow: 

•		 Don’t hurry the person. He or she needs time to chew 

and swallow each mouthful before taking another bite. 

•		 Don’t feed a person who is drowsy or lying down. He 

or she should be in an upright, sitting position during 

the meal and for at least 20 minutes after the meal. 

•		 Have the person keep his or her neck forward and 
 

chin down when swallowing.



•		 Stroke (gently) the person’s neck in a downward 
 

motion and say “swallow” to remind him or 
 

her to swallow. 
 

•		 Find out if the person’s pills can be crushed or taken 

in liquid form. 

Helping the person with AD eat can be exhausting. Planning 

meals ahead and having the food ready can make this task a little 

easier for you. Also, remember that people with AD may not eat 

much at certain times and then feel more like eating at other 

times. It helps to make mealtime as pleasant and enjoyable as 

possible. But, no matter how well you plan, the person may not be 

hungry when you’re ready to serve food. 

Dental, skin, and foot problems 

Dental, skin, and foot problems may take place in early and 

moderate stage AD, but most often happen during late stage AD. 

Please see page 83 for more on dental problems. 

Body jerking 

Myoclonus is a condition that sometimes happens with AD. 

The person’s arms, legs, or whole body may jerk. This can look 

like a seizure, but the person doesn’t pass out. Tell the doctor right 

away if you see these signs. The doctor may prescribe one or more 

medicines to help reduce symptoms. 

Coping with the Last Stages of AD 91


Skin problems 

Once the person stops walking or stays in one position too long, 

he or she may get skin or pressure sores. 

To prevent skin or pressure sores, you can: 

•		 Move the person at least every 2 hours if he or she is 

sitting up. 

•		 Move the person at least every hour if he or she is 

lying down. 

•		 Put a 4-inch foam pad on top of the mattress. 

•		 Check to make sure that the foam pad is comfortable 

for the person. Some people find these pads too hot 

for sleeping or may be allergic to them. If the foam 

pad is a problem, you can get pads filled with gel, 

air, or water. 

•		 Check to make sure the person sinks a little when 

lying down on the pad. Also, the pad should fit snugly 

around his or her body. 

To check for pressure sores: 

•		 Look at the person’s heels, hips, buttocks, shoulders, 

back, and elbows for redness or sores. 

•		 Ask the doctor what to do if you find pressure sores. 

•		 Try to keep the person off the affected area. 

Foot care 

It’s important for the person with AD to take care of his or her 

feet. If the person can’t, you will need to do it. 

Here’s what to do: 

•		 Soak the person’s feet in warm water; wash the 
 

feet with a mild soap; and check for cuts, corns, 
 

and calluses.



•		 Put lotion on the feet so that the skin doesn’t become 

dry and cracked. 

•		 Cut or file their toenails. 

•		 Talk to a foot care doctor, called a podiatrist, if the 

person has diabetes or sores on the feet. 

92 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

The Last Stages of AD 

End-of-Life Care 

Caring for someone in the final stage of life is always hard. It may 

be even harder when the person has AD. Of course, you want to 

make the person as comfortable as possible, but he or she can’t 

tell you how. You may become frustrated because you don’t know 

what to do. 

Also, it can be upsetting because you want the person to talk with 

you, share memories and feelings, and say goodbye. While the 

person with AD may not be able to say these things, you can. It’s 

really important to say the things in your heart, whatever helps 

you to say goodbye. 

When the person with AD dies, you may have lots of feelings. 

You may feel sad, depressed, or angry. You also may feel relieved 

that the person is no longer suffering and that you don’t have to 

care for the person any longer. Relief sometimes may lead to 

feelings of guilt. All of these feelings are normal. 

Planning for the end of a person’s life and knowing what to 

expect can make this time easier for everyone. Geriatric care 

managers, grief counselors, and hospice care staff are trained to 

help you through this time. You might want to contact hospice 

staff early for help on how to care for the dying person. These 

professionals can help make the person more comfortable. For 

more information about these services, see pages 62–63. 

End-of-Life Care 

The National Institute on Aging offers 

helpful information on caregiving, including 

end-of-life care. Its publications may be 

ordered free or viewed on the NIA website: 

www.nia.nih.gov/health/publication/ 

end-of-life 

Phone: 1-800-222-2225 

Coping with the Last Stages of AD 93


Caring for Yourself 

Taking care of yourself is one of the most important things you 

can do as a caregiver. This could mean asking family members 

and friends to help out, doing things you enjoy, using adult day 

care services, or getting help from a local home health care 

agency. Taking these actions can bring you some relief. It also 

may help keep you from getting ill or depressed. 

How to Take Care of Yourself 

Here are some ways you can take care of yourself: 

•		 Ask for help when you need it. 

•		 Join a caregiver’s support group. 

•		 Take breaks each day. 

•		 Spend time with friends. 

•		 Keep up with your hobbies and interests. 

•		 Eat healthy foods. 

•		 Get exercise as often as you can. 

•		 See your doctor on a regular basis. 

•		 Keep your health, legal, and financial 
 

information up-to-date.



94 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for Yourself 

Getting help 

Everyone needs help at times. It’s okay to ask for help and to 

take time for yourself. However, many caregivers find it hard 

to ask for help. You may feel: 

•		 You should be able to do everything yourself 

•		 That it’s not all right to leave the person with 
 

someone else



•		 No one will help even if you ask 

•		 You don’t have the money to pay someone to watch 

the person for an hour or two 

If you have trouble asking for help, try using some of the 

tips below. 

•		 It’s okay to ask for help from family, friends, and 
 

others. You don’t have to do everything yourself.



•		 Ask people to help out in specific ways like making a 

meal, visiting the person, or taking the person out for 

a short time. 

•		 Join a support group to share advice and understanding 

with other caregivers. 

•		 Call for help from home health care or adult day care 

services when you need it. 

•		 Use national and local resources to find out how to 

pay for some of this help, or get respite care services. 

You may want to join a support group of AD caregivers in your 

area or on the Internet. These groups meet in person or online 

to share experiences and tips and to give each other support. 

Ask your doctor, check online, or contact a local chapter of the 

Alzheimer’s Association. 

If you are a veteran or are caring for one, the Veterans 

Administration might be of help to you. To learn more, visit 

their caregivers’ website at www.caregiver.va.gov. You might 

also call their toll-free support line at 1-855-260-3274. 

AD Information 

You also can call the 

Alzheimer’s and related 

Dementias Education and 

Referral Center at no cost. 

The phone number is 

1-800-438-4380. 

Visit on the Internet 

at www.nia.nih.gov/ 

alzheimers. 

For more information 

on how to get help, 

see pages 56–71, 

“When You Need Help.” 

Caring for Yourself 95


Your emotional health 

You may be busy caring for the person with AD and don’t take time 

to think about your emotional health. But, you need to. Caring 

for a person with AD takes a lot of time and effort. Your job as 

caregiver can become even harder when the person you’re caring 

for gets angry with you, hurts your feelings, or forgets who you are. 

Sometimes, you may feel really discouraged, sad, lonely, frustrated, 

confused, or angry. These feelings are normal. 

Here are some things you can say to yourself that might 

help you feel better: 

•		 I’m doing the best I can. 

•		 What I’m doing would be hard for anyone. 

•		 I’m not perfect, and that’s okay. 

•		 I can’t control some things that happen. 

•		 Sometimes, I just need to do what works for right now. 

•		 Even when I do everything I can think of, the person 

with AD will still have problem behaviors because of 

the illness, not because of what I do. 

•		 I will enjoy the moments when we can be together in peace. 

•		 I will try to get help from a counselor if caregiving 
 

becomes too much for me.



“He has given me so 

much all my life, and 

now he can only take. 

Yet his presence now, 

as always, provides deep 

comfort to my soul. Now 

I give to him in every 

way I can. I realize that 

my giving to him is a 

result of his giving to 

me: emotional support, 

love, spiritual direction, 

wisdom, and advice.” 

96 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Caring for Yourself 

Meeting your spiritual needs 

Many of us have spiritual needs. Going to a church, temple, or 

mosque helps some people meet their spiritual needs. They like to 

be part of a faith community. For others, simply having a sense 

that larger forces are at work in the world helps meet their 

spiritual needs. As the caregiver of a person with AD, you may 

need more spiritual resources than others do. 

Meeting your spiritual needs can help you: 

•		 Cope better as a caregiver 

•		 Know yourself and your needs 

•		 Feel recognized, valued, and loved 

•		 Become involved with others 

•		 Find a sense of balance and peace 

Other caregivers made these suggestions to help you 

cope with your feelings and spiritual needs: 

• Understand that you may feel powerless and hopeless 

about what’s happening to the person you care for. 

•		 Understand that you may feel a sense of loss and sadness. 

•		 Understand why you’ve chosen to take care of the 

person with AD. Ask yourself if you made this choice 

out of love, loyalty, a sense of duty, a religious 

obligation, financial concerns, fear, a habit, or 

self-punishment. 

•		 Let yourself feel day-to-day “uplifts.” These might 

include good feelings about the person you care for, 

support from other caring people, or time to spend on 

your own interests and hobbies. 

•		 Keep a connection to something “higher than yourself.” 

This may be a belief in a higher power, religious beliefs, 

or a belief that something good comes from every life 

experience. 

“I feel lonely sometimes. 

I spend almost all of my 

time taking care of Mom. 

Going to church and 

being with friends helps 

me feel better.” 

Caring for Yourself 97


Joining a Clinical Trial

A clinical trial is a research study to find out whether new 

medicines or other treatments are both safe and effective. 

Clinical trials most often take place at research centers and 

universities across the United States. Joining a clinical trial, also 

called a research study, is a way for you and the person with AD 

to help find ways to prevent or treat AD. 

A clinical trial gives the person a chance to get a new treatment 

from researchers, before the government approves it. The new 

treatment might be a new medicine or a new way to care for 

someone with AD. A clinical trial is another way to get care from 

experts. Being in a study also gives you and the person with AD 

a chance to help others who have the disease. 

But, you should keep in mind that clinical trials may have some 

risks. Be sure to look at the benefits and risks of a clinical trial 

before you decide whether or not to participate. 

98 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

 

Joining a Clinical Trial 

How can a person join a clinical trial? 

To join, you first must find a study that is looking for people like 
 

you or the person with AD. 
 

For more information about AD clinical trials and studies, 
 

visit www.nia.nih.gov/alzheimers/volunteer. You can also call 
 

1-800-438-4380. An information specialist can help you look 
 

for a clinical trial. 
 

You may also want to visit these clinical trials websites: 

• Alzheimer’s Association 

www.alz.org/trialmatch 

• Galaxy 

www.galaxybraintrust.org/research 

• National Institutes of Health 

www.nih.gov/health/clinicaltrials



www.clinicaltrials.gov



• Research Match 

www.researchmatch.org 

What else do I need to know 

about clinical trials? 

The government has strict rules to protect the safety and privacy 

of people in clinical trials. The researchers conducting the study 

are required by law to tell the patient and/or family members all 

of the risks and benefits of taking part in the study. This is called 

the informed consent process. 

As part of this process, the person reads an informed consent form. 

The form explains the study, its risks and benefits, and the rights 

of the person taking part in the study. The laws and rules about 

informed consent differ across States and research centers. 

Some clinical trials will pay you back for transportation costs, 

child care, meals, and lodging; others won’t. Talk with the study 

coordinator about these costs. 

For more information, read Participating in Alzheimer’s Research 

at www.nia.nih.gov/alzheimers/publication/participating-alzheimersresearch. 

Joining a Clinical Trial 99


Summary 

Thank you for reading this guide. We hope it helps you— 

the caregiver—and the person with AD. 

Here are some main points to remember: 

•		 Learn about AD to help you cope with challenges. 

•		 Plan how to care for someone with AD to make 

things easier. 

•		 Create a safe home for the person with AD. 

•		 It’s important for you to take care of yourself as 

well as the person with AD. 

•		 You aren’t alone. It’s okay to ask for and get help. 

Check the resources listed in this book. 

•		 You can find the right place for the person with AD 

if he or she can no longer live at home. 

•		 Learn about medicines used for people with AD. 

•		 Find out how to cope with late-stage AD. 

100 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Words to Know 

Aggression (uh-GRESH-un). When a person lashes out 

verbally or tries to hit or hurt someone. 

Agitation (aj-uh-TAY-shun). Restlessness and worry that 

some people with AD feel. Agitation may cause pacing, 

sleeplessness, or aggression. 

Alzheimer’s disease (AD) (ALLZ-high-merz duh-ZEEZ). 

Disease that causes large numbers of nerve cells in 

the brain to die. People with AD lose the ability to 

remember, think, and make good judgments. At 

some point, they will need full-time care. 

Anti-anxiety (an-tye-ang-ZYE-eh-tee) drugs. Drugs used 

to treat agitation and extreme worry. Some can cause 

sleepiness, falls, and confusion. These drugs should be 

taken with caution. 

Anticholinergic (an-tye-KOL-in-er-gik) drugs. Drugs used to 

treat stomach cramps, incontinence, asthma, motion 

sickness, and muscle spasms. These drugs should not be 

given to people with AD. 

Anticonvulsants (an-tye-kon-VUL-sunts). Drugs sometimes 

used to treat severe aggression. 

Antidepressants (an-tye-dee-PRESS-unts). Drugs used to 

reduce depression and worry. 

Antipsychotics (an-tye-sye-KOT-iks). Drugs used to treat 

paranoia, hallucinations, sleeplessness, agitation, 

aggression, and other personality and behavior disorders. 

These drugs should be taken with caution. 

Assisted living facility. Type of living facility that provides 

rooms or apartments for people who can handle most of 

their own care, but may need some help. 

Caregiver. Anyone who takes care of a person with AD. 

Words to Know 101


Clinical trial. Research study to find out whether new medicines or 

other treatments are both safe and effective. 

Constipation (kon-sti-PAY-shun). Trouble having a bowel 

movement. 

Continuing care retirement community. Community of homes, 

apartments, and rooms that offer different levels of care for 

older people. 

Deductible (dee-DUK-ti-bul). The amount of medical expenses 

that a person must pay per year before the insurance 

company will cover medical costs. 

Dehydration (dee-hye-DRAY-shun). Condition caused by lack of 

fluids in the body. 

Delusions (duh-LOO-zhuhns). False beliefs that someone with 

AD believes are real. 

Diarrhea (dye-uh-REE-uh). Loose bowel movements. 

Do Not Resuscitate (DNR) Form. Document that tells health 

care staff that the person with AD does not want them to 

try to return the heart to a normal rhythm if it stops or is 

beating unevenly. 

Durable Power of Attorney for Finances. Legal permission for 

someone to make legal and financial decisions for the person 

with AD, after he or she no longer can. 

Durable Power of Attorney for Health Care. Legal permission 

for someone to make health care decisions for the person 

with AD, after he or she no longer can. 

Hallucinations (huh-loo-suh-NAY-shuns). One possible effect of 

AD, in which the person sees, hears, smells, tastes, and/or 

feels something that isn’t there. 

Home health care. Service that provides care and/or 

companionship in the home for the person with AD. 

Hospice services. Services that provide care for a person who is 

near the end of life and support for families during this time. 

Hypersexuality (hi-pur-sek-shoo-AL-uh-tee). Condition in which 

people with AD become overly interested in sex. 

Incontinence (in-KON-ti-nunts). Trouble controlling bladder 

and/or bowels. 

Inpatient facility. Hospital or other medical facility where people 

stay in the facility. 

102 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 

Words to Know 

Intimacy. Special bond between people who love and respect 

each other. 

Living trust. Legal document that tells a person called a trustee 

how to distribute a person’s property and money. 

Living will. Legal document that states a person’s wishes for endof-life health care. 

Multivitamin (mull-tee-VYE-tuh-min). A tablet, capsule, 

powder, liquid, or injection that adds vitamins, minerals, 

and other nutritional elements to the diet. 

Myoclonus (mye-o-KLO-nuss). Condition that sometimes 

happens with AD, in which a person’s arms, legs, or whole 

body may jerk. It can look like a seizure, but the person 

doesn’t pass out. 

Nursing home. Home for people who can’t care for themselves 

anymore. Some have special AD care units. 

Palliative (PAL-ee-uh-tiv) care. Services to treat or reduce 

symptoms (like pain and stress) for a person with a serious 

illness. 

Paranoia (pare-uh-NOY-uh). Type of delusion in which a person 

believes—without good reason—that others are being 

unfair, unfriendly, or dishonest. Paranoia may cause 

suspicion, fear, or jealousy in a person with AD. 

Respite (RES-pit) services. Short-term care for the person with 

AD that allows caregivers to get a break. 

Sexuality. Important way that people express their feelings 

physically and emotionally for one another. 

Spirituality (SPEAR-uh-choo-al-ity). Belief in a higher power or 

in larger forces at work in the world. Going to church, 

temple, or mosque helps some people meet their spiritual 

needs. For others, simply having a sense that larger forces 

are at work in the world helps meet their spiritual needs. 

Sundowning. Restlessness in a person with AD that usually starts 

around dinnertime or in the evening and may make it hard 

to get the person to go to bed and stay there. 

Urinary tract infection (YUR-in-air-ee tract in-FEK-shun). An 

illness, usually in the bladder or kidneys, caused by bacteria 

in the urine. 

Will. Legal document that tells how a person’s money and 

property will be divided after his or her death. 

Words to Know 103


Acknowledgments 

The National Institute on Aging is grateful to the staff of the 

Rush University Alzheimer’s Disease Center, Chicago, Illinois, 

for their original work in creating this easy-to-use guide. 

Photo credits 

Doug Sanford: cover, right photo 4 

Rick Brady: page 7 

Marty Katz: pages 8, 26, 36, 49, 73, 77 

Kenesson Design, Inc.: pages 44, 80, 87, 90, 101 

104 Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide
 


Publication No. 17-AG-6173

January 2017