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Your requested information
Page 1 : From Northern California/Northern Nevada Chapter
Page 2 : 10 Warning Signs of Alzheimer's: How to identify and address concerns
Page 6 : Understanding Alzheimer's and dementia
Page 13 : Principles for a dignified diagnosis
Page 15 : I have Alzheimer’s disease: What you need to know to live your best life
Page 25 : Behaviors: How to respond when dementia causes unpredictable behaviors
Page 33 : Care options
Page 36 : Communication
Page 39 : Preparing for your doctor’s visit
Page 43 : Principles for a dignified diagnosis
Your local chapter

Alzheimer's Association Northern California and Northern Nevada
2290 N 1st St Ste 101,
San Jose, CA 95131
800.272.3900
www.alz.org/norcal
Generated: 3/31/2021 12:30:02 PM

From Northern California/Northern Nevada Chapter
Dear Friend,
Thank you for contacting the Alzheimer's Association of Northern California and
Northern Nevada. We are here for you for wherever your journey with Alzheimer's or a
related disorder takes you. We welcome you and hope you will join us in the national
movement to create a world without Alzheimer's.
Enclosed you will find materials in response to your recent contact. We hope that you
find them useful and that the information contained in them will make a difference.
The Alzheimer's Association offers information on a wide range of topics. If you would
like additional information, please call us, we'd be happy to send it to you; you can also
find a wealth of information at www.alz.org.
You are not alone! Keep our 24/7 Helpline number handy, and continue to reach out to
us for help, anytime. Our support groups and educational programs are near you, online
and via telephone, and our Helpline is a toll-free call away. We know that tomorrow's
challenges will be different than today's. Call us when you need us (800) 272-3900.
Sincerely,
Elizabeth Edgerly
Executive Director
Updated November 2018
800.272.3900 | alz.org®
©2021 Alzheimer's Association®. All rights reserved. This is an official publication of the Alzheimer's Association but may be distributed by unaffiliated
organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer's Association.
1
10 WARNING SIGNS OF ALZHEIMER’S
HOW TO IDENTIFY AND ADDRESS CONCERNS
Currently, an estimated 50 million people worldwide are living with dementia, including
more than 5 million Americans. In collaboration with experts in the field, the Alzheimer’s
Association® created a list of warning signs to help people identify symptoms that may be
related to Alzheimer’s or another dementia.
UNDERSTANDING ALZHEIMER’S AND DEMENTIA

It’s common to experience some issues with memory, thinking and behavior as we age.
However, changes that interfere with daily life could be a sign of something more serious,
such as dementia.
Dementia is the umbrella term for a person’s decline in memory and other cognitive
abilities that is severe enough to interfere with daily life. It is not a normal part of aging.
The most common cause of dementia is Alzheimer’s (AHLZ-high-merz), a progressive
brain disease that results in the loss of brain cells and function.
10 WARNING SIGNS OF ALZHEIMER’S
NOTE: It’s possible for individuals to experience one or more of these signs in varying
degrees. It is not necessary to experience every sign in order to raise concern.
1. MEMORY LOSS THAT DISRUPTS DAILY LIFE

One of the most common signs of Alzheimer’s disease, especially in the early stage, is
forgetting recently learned information. Others include forgetting important dates or
events, asking the same questions repeatedly, and increasingly needing to rely on
memory aids (e.g., reminder notes or electronic devices) or family members for things
the person used to handle on their own.
What’s a typical age-related change?

Sometimes forgetting names or appointments, but remembering them later.
2. CHALLENGES IN PLANNING OR SOLVING PROBLEMS

Some people living with dementia may experience changes in their ability to develop
and follow a plan or work with numbers. They may have trouble following a familiar
recipe or keeping track of monthly bills. They may have difficulty concentrating and
take much longer to do things than they did before.
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Making occasional errors when managing finances or household bills.
3. DIFFICULTY COMPLETING FAMILIAR TASKS

People living with Alzheimer’s disease often find it hard to complete routine tasks.
Sometimes they may have trouble driving to a familiar location, organizing a grocery
list or remembering the rules of a favorite game.

Occasionally needing help to use microwave settings or to record a TV show.
4. CONFUSION WITH TIME OR PLACE

People living with Alzheimer’s can lose track of dates, seasons and the passage of time.
They may have trouble understanding something if it is not happening immediately.
Sometimes they may forget where they are or how they got there.

Getting confused about the day of the week, but figuring it out later.
5. TROUBLE UNDERSTANDING VISUAL IMAGES AND SPATIAL

RELATIONSHIPS
For some people, vision problems are a sign of Alzheimer’s. This may lead to difficulty
with balance or trouble reading. They may also have problems judging distance and
determining color or contrast, causing issues with driving.

Vision changes related to cataracts.
6. NEW PROBLEMS WITH WORDS IN SPEAKING OR WRITING

People living with Alzheimer’s may have trouble following or joining a conversation.
They may stop in the middle of a conversation and have no idea how to continue, or
repeat themselves. They may struggle with vocabulary, have trouble naming a familiar
object or use the wrong name.

Sometimes having trouble finding the right word.
7. MISPLACING THINGS AND LOSING THE ABILITY TO RETRACE STEPS

A person living with Alzheimer’s may put things in unusual places. They may lose
things and be unable to go back over their steps to find them again. He or she may
accuse others of stealing, especially as the disease progresses.
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Misplacing things from time to time and retracing steps to find them.
8. DECREASED OR POOR JUDGMENT

Individuals may experience changes in judgment or decision-making. For example, they
may use poor judgment when dealing with money or pay less attention to grooming or
keeping themselves clean.

Making a bad decision or mistake once in a while, like neglecting to change the oil in
the car.
9. WITHDRAWAL FROM WORK OR SOCIAL ACTIVITIES

A person living with Alzheimer’s disease may experience changes in the ability to hold
or follow a conversation. As a result, he or she may withdraw from hobbies, social
activities or other engagements. They may have trouble keeping up with a favorite team
or activity.

Sometimes feeling uninterested in family or social obligations.
10. CHANGES IN MOOD AND PERSONALITY

Individuals living with Alzheimer’s may experience mood and personality changes.
They can become confused, suspicious, depressed, fearful or anxious. They may be
easily upset at home, with friends or when out of their comfort zone.

Developing very specific ways of doing things and becoming irritable when a routine is
disrupted.
WHAT TO DO IF YOU NOTICE A SIGN

If you notice one or more signs in yourself or another person, it can be difficult to know
what to do. It’s natural to feel uncertain or nervous about discussing these changes with
others. Voicing worries about your own health might make them seem more “real.” Or, you
may fear upsetting someone by sharing observations about changes in his or her abilities or
behavior.
However, these are significant health concerns that should be evaluated by a doctor, and it’s
important to take action to figure out what’s going on.
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Have a conversation
If you’ve noticed any of the signs in yourself, confide in someone you trust. Similarly, if
you’ve noticed memory changes in someone else, think about who would be best to
approach the person, whether it’s you or another trusted family member or friend. Have the
conversation as soon as possible in a location that will be comfortable for everyone
involved.
Visit alz.org/memoryconcerns for tips on approaching memory concerns.
TS-0063 | Updated June 2019
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UNDERSTANDING ALZHEIMER’S AND DEMENTIA
THE IMPACT OF ALZHEIMER’S AND DEMENTIA
Currently, an estimated 50 million people worldwide are living with dementia, including
more than 5 million Americans. Without changes in prevention or treatment, this number
could reach nearly 14 million by 2050.
The disease also affects the 16 million Americans who provide unpaid care for people
living with Alzheimer’s or another dementia. More than 80% of care provided at home is
delivered by family members, friends or other unpaid caregivers.
The Alzheimer’s Association ® is available across the country and online to help people
understand Alzheimer’s and dementia, and receive information and support they can trust.
ALZHEIMER’S AND DEMENTIA

The terms “dementia” and “Alzheimer’s” are often used as though they mean the same
thing. They are related, but there are important differences between the two.
Dementia
Dementia is a broad (“umbrella”) term for an individual’s changes in memory, thinking or
reasoning. There are many possible causes of dementia, including Alzheimer’s.
Alzheimer’s
Alzheimer’s disease is the most common cause of dementia. It makes up 60% to 80% of all
dementia cases. Alzheimer’s is not a normal part of aging — it’s a progressive brain
disease, meaning it gets worse over time.
Two abnormal brain structures called plaques and tangles are the main features of
Alzheimer’s disease. Scientists believe they damage and kill nerve cells. Plaques are pieces
of a protein fragment called beta-amyloid that build up in the spaces between nerve cells.
Tangles are twisted fibers of another protein called tau that build up inside cells.
Other common dementias
 Vascular dementia is a decline in thinking skills that happens when blood flow to
the brain is blocked or reduced so that brain cells can’t get important oxygen and
nutrients. Sometimes these changes occur suddenly, such as during a stroke that
blocks major brain blood vessels. Vascular dementia is the second most common
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cause of dementia after Alzheimer’s disease.
 Dementia with Lewy bodies is a type of progressive dementia related to buildup of

a protein called alpha-synuclein that damages brain cells. Early symptoms include
hallucinations and sleep problems.
 Frontotemporal dementia (FTD) is a group of disorders. Progressive cell

degeneration (or breakdown) causes FTD in two places. One is in the brain’s frontal
lobes (the areas behind the forehead). The other is in the brain’s temporal lobes (the
regions behind the ears).
Visit alz.org/dementia to learn about other types of dementia.
ALZHEIMER’S IN THE BRAIN

More than 100 years ago, Dr. Alois Alzheimer described specific changes in the brain.
Scientists now call them beta-amyloid plaques and tau tangles. Today we know that
Alzheimer’s is a progressive brain disease. It is marked by these key changes and impacts
memory, thinking and behavior.
What goes wrong in the brain

The brain has three main parts: the cerebrum, cerebellum and brain stem. Each has a job to
do to make the body work properly.
The cerebrum fills up most of the skull. It’s the part of the brain most involved in
remembering, problem-solving and thinking. There are about 100 billion nerve cells called
neurons throughout the brain that send messages in order to make memories, feelings and
thoughts.
Alzheimer’s disease causes nerve cells to die. This causes the brain to lose tissue (also
called shrinkage) and the loss of function and communication between cells. These changes
can cause the symptoms of Alzheimer’s disease. These include memory loss; problems
with thinking and planning; behavioral issues; and, in the last stage, a further decline in
functioning, which can even include trouble swallowing.
RISK FACTORS
Scientists know that nerve cell failure is a part of Alzheimer’s disease, but they don’t yet
know why this happens. However, they have identified certain risk factors that increase the
likelihood of developing Alzheimer’s.
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Age
The greatest known risk factor for Alzheimer’s is age. After age 65, a person’s risk of
developing the disease doubles every five years. Thirty-two percent of people age 85 or
older have Alzheimer’s.
Family history
Researchers have learned that people who have a parent, brother or sister with Alzheimer’s
are more likely to develop it than those who do not. The risk increases if more than one
family member has the disease.
Genetics
Two types of genes influence whether a person develops a disease: risk genes and
deterministic genes. Risk genes increase the chance of developing a disease but do not
guarantee it will happen. Deterministic genes cause a disease. This means anyone who
inherits a deterministic gene will develop a disorder.
Rare deterministic genes cause Alzheimer’s in a few hundred extended families worldwide.
Scientists estimate these genes cause less than 1% of cases. Individuals with these genes
usually develop symptoms in their 40s or 50s.
Hispanics, African Americans and women

Research shows that older Hispanics are about one-and-a-half times as likely as older
whites to have Alzheimer’s and other dementias, while older African Americans are about
twice as likely. No one knows the exact reason for these differences, but researchers believe
they are connected to higher rates of vascular disease in these groups.
Also, women live longer than men, making them more likely to develop Alzheimer’s.
However, living longer doesn’t completely explain this difference. Researchers are
exploring how genetic differences may impact disease risk.
Lowering the risk of cognitive decline

Age, family history and genetics are all risk factors we can’t change. However, research is
starting to show clues about other risk factors that we may be able to influence. Studies
show a strong connection between serious head injury and future risk of Alzheimer’s. For
this reason, it’s important to protect your head by buckling your seat belt, wearing a helmet
when playing sports and making sure your home is safe to avoid falls.
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Research also shows there are healthy lifestyle habits that people can adopt to help keep
their brain healthy and lower their risk of cognitive decline. These include eating a healthy
diet, staying socially active, and exercising the body and the mind. Not using tobacco and
avoiding excess alcohol is also good for brain health.
Science tells us there is a strong connection between brain health and heart health. The risk
of developing Alzheimer’s or vascular dementia appears to be increased by many
conditions that damage the heart and blood vessels. These include heart disease, diabetes,
stroke, high blood pressure and high cholesterol.
The Alzheimer’s Association used this research to develop 10 Ways to Love Your Brain, a
collection of tips that can help lower the risk of cognitive decline. Learn more at
alz.org/10ways.
STAGES OF ALZHEIMER’S DISEASE

Alzheimer’s usually progresses slowly in three general stages: early, middle and late. In a
medical setting, these stages are sometimes called “mild,” “moderate” and “severe.”
The symptoms of Alzheimer’s worsen over time, but because the disease affects people in
different ways, the rate of progression varies. On average, a person with Alzheimer’s may
live four to eight years after diagnosis, but some people live as long as 20 years.
The following descriptions provide a general idea of changes at each stage. Stages of
Alzheimer’s may overlap, which can make it difficult to know which stage a person is in.
Early-stage Alzheimer’s
In the early stage, a person may function independently, but people who know the
individual well may begin to notice difficulties. These can include:
 Problems coming up with the right word or name for something.

 Trouble remembering names when introduced to new people.
 Difficulty with familiar tasks.
 Forgetting something that was just read.
 Getting lost in familiar places.
 Increasing trouble with planning or organizing.
Middle-stage Alzheimer’s
Middle-stage Alzheimer’s is usually the longest stage and can last for many years. As the
disease progresses, the person living with Alzheimer’s will need more help. In the middle
stage, symptoms will be noticeable to others and may include:
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 Forgetting events or one’s own personal history.
 Feeling frustrated, angry or withdrawn, especially in socially or mentally
challenging situations.
 Confusion about where they are or the day of the week.
 Needing help to choose the right clothes for the weather or occasion.
 Trouble controlling bladder and bowels.
 Changes in sleep patterns. This may include sleeping during the day and
restlessness at night.
 A higher risk of wandering and becoming lost.
 Personality and behavioral changes. The person may become suspicious or
delusional, believing that others are lying. Or, the person might repeat a behavior
over and over.
Late-stage Alzheimer’s
Major personality changes can happen in the final stage of Alzheimer’s. The person will
need a lot of help with daily activities and personal care. In the late stage, individuals may:
 Lose awareness of recent experiences as well as of their surroundings.

 Go through changes in physical abilities. This may affect their ability to walk, sit
and, eventually, swallow.
 Have more trouble communicating.
 Be at higher risk of infections, especially pneumonia.
FDA-APPROVED TREATMENTS FOR SYMPTOMS

Currently, there is no cure for Alzheimer’s, but non-drug treatments and medications may
help with memory, thinking and behavioral symptoms for a while. It’s important to talk
about treatments with your doctor, starting with non-drug options.
Non-drug treatments
Non-drug treatments for behavioral symptoms can offer physical and emotional comfort.
Many of these strategies aim to identify and take care of the needs of the person living with
Alzheimer’s.
Tips for coping with symptoms include:
 Check for personal comfort. Look for pain, hunger, thirst, constipation, full bladder,
fatigue, infections and skin irritation. Keep the room temperature comfortable.
 Don’t argue about facts. For example, if a person would like to visit a parent who
died years ago, don’t point out that the parent is no longer alive. Instead, say, “Your
mother is a wonderful person. I would like to see her, too.”
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 Redirect the person’s attention by getting them to think about something new. Try
to be flexible, patient and supportive. Respond to the emotion, not the behavior.
 Create a calm environment. Avoid noise, bright lights and television, which causes
distraction.
 Have rest times between lively events.
 Give the person an object to hold that makes them feel safe.
 Show the person that you hear them and answer his or her questions.
 Look for reasons behind each behavior. Talk to a doctor about behaviors that could
be connected to medications or illness.
 Try to find more than one solution.
Medications
Three types of drugs are currently approved by the Food and Drug Administration (FDA) to
treat cognitive symptoms of Alzheimer’s disease.
The first type is cholinesterase (KOH-luh-NESter-ays) inhibitors. These drugs prevent the
breakdown of acetylcholine (a-SEA-til-KOHlean). Acetylcholine is a chemical messenger
important for memory and learning. These drugs support communication between nerve
cells. The cholinesterase inhibitors most commonly prescribed are:
 Donepezil (Aricept®)
 Rivastigmine (Exelon ®)
 Galantamine (Razadyne®)
The second type of drug works by regulating the activity of glutamate. Glutamate is a
different chemical messenger that helps the brain process information. This drug is known
as:
 Memantine (Namenda®)
The third type of drug is a combination of a cholinesterase inhibitor and a glutamate

regulator:
 Donepezil and memantine (Namzaric®)
These treatments produce different results in different people. They might help symptoms
for a while, but they do not slow or stop the brain changes that cause Alzheimer’s to
become more severe over time.
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ADVANCING ALZHEIMER’S RESEARCH
Research in the last 10 years shows that Alzheimer’s starts many years before people living
with the disease notice symptoms. With this knowledge, researchers are working to find
people who are at risk before they have symptoms and try to prevent the disease. This effort
may lead to a medication to stop or slow the disease.
To help advance important research to understand Alzheimer’s and find treatments, the
Alzheimer’s Association funds researchers looking at new treatment strategies and
advocates for more federal research funding.
Clinical studies drive progress

Taking part in a clinical study is one way that everyone can help fight Alzheimer’s disease.
Without volunteers for research, scientists cannot find ways to prevent, treat and,
ultimately, cure the disease.
Clinical trials test new drugs to be sure they are safe and effective. Clinical studies test
non-drug treatments to learn how they affect things such as quality of life. Every clinical
trial or study gives us important knowledge, whether or not the study was successful.
For people currently living with dementia, there are other benefits to taking part in clinical
trials, including access to expert medical care and promising treatments.
Visit alz.org/TrialMatch to learn more about Alzheimer’s Association TrialMatch ®, a free,

easy-to-use clinical studies matching service for people living with dementia, caregivers
and healthy volunteers who don’t have dementia. TrialMatch has a database with hundreds
of studies taking place across the country and online. It’s your chance to learn about
opportunities to participate in Alzheimer’s research.
TS-0069 | Updated June 2019
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PRINCIPLES FOR A DIGNIFIED DIAGNOSIS
The first statement of its kind written by people living with dementia on the subject of
the Alzheimer’s disease diagnosis experience.
Talk to me, the person living with dementia, directly.

I am the person living with the disease, and though those close to me will also be affected, I
am the person who needs to know first.
Tell the truth.

Even if you don’t have all of the answers, be honest about what you do know and why you
believe it to be so.
Test early.
Helping me get an accurate diagnosis as soon as possible gives me more time to cope, live
to my fullest potential and access information and resources.
Take my memory concerns seriously, regardless of my age.

Age may be the biggest risk factor for Alzheimer’s, but Alzheimer’s is not a normal part of
aging. Don’t discount my concerns because of my age. At the same time, don’t forget that
the disease can also affect people in their 40s, 50s and 60s.
Deliver the diagnosis in plain but sensitive language.

My diagnosis may be one of the most important things I ever hear. Please use language that
I can understand and be sensitive to how this may make me feel.
Coordinate with other care providers.

I may be seeing more than one doctor. It’s important that you talk to my other care
providers to ensure everyone has the information so that changes can be identified early and
I won’t have to unnecessarily repeat tests.
Explain the purpose of different tests and what you hope to learn.
Testing can be very physically and emotionally challenging. It would help me to know the
purpose of the test, how long it will take and what you expect to learn from the process. I
would also appreciate the option of breaks during longer tests and an opportunity to ask
questions.
Give me tools for living with this disease.

Please don’t give me my diagnosis and then leave me alone to confront it. I need to know
what will happen to me, what medical treatments are available, and what support and
resources are offered through the Alzheimer’s Association® and my community.
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Work with me on a plan for living a quality life.
Medication may help modify some of my neurological symptoms, but I am also interested
in recommendations for keeping myself as healthy as possible through diet, exercise and
social engagement.
Recognize that I am an individual and the way I experience this disease is unique.
This disease affects each person in different ways and at a different pace. Please be sure to
couch your explanation of how this disease may change my life with this in mind.
Alzheimer’s is a journey, not a destination.

Treatment doesn’t end with the writing of a prescription. Please continue to be an advocate
— not just for my medical care but for my quality of life as I continue to live with
Alzheimer’s disease.
TS-0060 | Updated April 2018
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I HAVE ALZHEIMER’S DISEASE
WHAT YOU NEED TO KNOW TO LIVE YOUR BEST LIFE
Alzheimer’s is the most common form of dementia, which leads to changes in

memory, thinking and behavior.
If you have been diagnosed with Alzheimer’s or another dementia, you are not
alone. Today, an estimated 47 million people worldwide have dementia, including
more than 5 million Americans.
Learning as much as you can is the first step toward taking control of your life. In the
early stage of the disease, you can live well by empowering yourself with the right
information and resources.
We encourage you to take your time and learn at your own pace, as some information
may be difficult to deal with.
FEELINGS AFTER A DIAGNOSIS

It’s normal to experience a range of emotions after receiving a diagnosis of
Alzheimer’s or another dementia. Understanding your emotions will help you move
forward and discover ways to live a positive and fulfilling life. Common feelings
include:
 Anger. Your life is taking a different direction than you planned and you
cannot control the course of the disease.
 Relief. Your diagnosis validated the concerns you had about the changes you
were experiencing and provided an explanation.
 Depression. Feeling depressed or anxious is common. If feelings of sadness
persist, it may be time to seek the help of your doctor, as depression can be
treated.
 Fear. You may be fearful of the future and how your family will be affected.
 Isolation. It might feel as if no one understands what you’re going through or
you may lose interest in maintaining relationships with others.
 Sense of loss. It may be difficult to accept changes in your abilities.
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Take care of your emotional needs
Although it can be difficult, taking care of your emotional needs can help you come
to terms with your diagnosis and feelings. The following tips may be helpful:
 Write down your thoughts in a journal.
 Share your feelings openly and honestly with family members and friends.
 Surround yourself with support.
o Join ALZConnected® (alzconnected.org), our online community, to
connect with other individuals living with early-stage Alzheimer's.
o Join an early-stage support group, which can provide you with a safe
and supportive peer environment. Call 800.272.3900 or visit
alz.org/CRF to find a group in your area.
 Stay engaged by continuing to do activities you enjoy for as long as you’re
able, or consider trying new ones.
 Take time to feel sad, mourn and grieve.
Sadness or depression?
Visit alz.org/takecare to learn the warning signs of depression. Talk to your doctor if
you or others are concerned about your emotional well-being.
DISEASE PROGRESSION
Alzheimer’s affects everyone differently. By learning what to expect as the disease
progresses, you can reduce the fear of the unknown and develop a strategy to help
you manage the challenges you may face. Please note: Your health care provider may
refer to the stages of Alzheimer's as "mild, moderate and severe."
Early stage
In the early stage of Alzheimer's, you will begin to notice changes in your memory,
thinking or reasoning that interfere with daily life. You will still be able to perform
many of your daily responsibilities or routines, but these tasks may become more
difficult over time. Friends, family or co-workers may notice changes. Common
difficulties in the early stage may include:
 Problems coming up with the right word or name.

 Trouble remembering people's names after introduced.
 Greater difficulty performing tasks in social settings.
 Forgetting material that was just read.
 Losing or misplacing common objects.
 Difficulty planning or organizing.
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Middle stage
As the disease progresses into the middle stage, significant details about oneself and
family may still be recalled, but gaps in memory and thinking are noticeable and
assistance with daily tasks is required. Safety needs should be addressed, if measures
are not already in place. Changes in the middle stage may include:
 Inability to recall home address, telephone number or the names of family and
friends.
 Confusion about time or place.
 Difficulty choosing appropriate clothing for the season or occasion.
 Requiring some assistance with eating or toileting.
Late stage
In the late stage of the disease, losses include the abilities to communicate (e.g.,
respond to the environment and carry on a conversation) and, eventually, control
movement (e.g., sit without support and hold head up). Assistance or supervision is
required to complete most daily personal care, including eating or toileting. Reflexes
will become abnormal, muscles grow rigid and swallowing becomes impaired.
TREATMENTS AND RESEARCH
The more you know about Alzheimer’s medications, the better prepared you will be
to discuss them with your physician, make informed choices about your treatment
plan and effectively cope with symptoms.
While there is no cure, prevention or treatment to slow the progression of

Alzheimer’s or dementia, the following commonly prescribed FDA-approved
medications are used to treat symptoms.
DRUG NAME BRAND NAME APPROVED POSSIBLE SIDE

FOR EFFECTS
1. Donepezil Aricept® All stages Nausea, vomiting, loss
of appetite, increased
frequency of bowel
movements
2. Galantamine Razadyne® Mild to moderate Nausea, vomiting, loss

frequency of bowel
movements
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3. Rivastigmine Exelon® Mild to moderate Nausea, vomiting, loss
frequency of bowel
movements
4. Memantine Namenda® Moderate to severe Headache, constipation,

confusion, dizziness
5. Donepezil Namzaric® Moderate to severe Nausea, vomiting, loss

and of appetite, increased
memantine frequency of bowel
movements, headache,
constipation, confusion,
dizziness
The first three drugs are cholinesterase inhibitors, which treat symptoms related to
memory, thinking, language, judgment and other thought processes. The fourth,
memantine, regulates the activity of a different chemical messenger in the brain that
is also important for learning and memory. These two types of drugs work in different
ways to help manage symptoms.
The fifth drug is a combination of a cholinesterase inhibitor and a glutamate

regulator. These three types of drugs work in different ways to help manage
symptoms. The effectiveness of the types of treatments varies from person to person.
While they may temporarily help symptoms, they do not slow or stop brain changes
that cause Alzheimer's to become more severe over time.
Be sure to discuss all medications with your doctor to understand why they were
prescribed and how to take them. To prevent drug interactions and unwanted side
effects, make sure your physician, pharmacist and care team are aware of any over-
the-counter and alternative remedies you are taking.
Clinical studies
As a person living with Alzheimer’s, you have an opportunity to participate in clinical
research. Some participants receive cutting-edge treatments and expert medical care.
All participants provide valuable insight to help investigators accelerate research
progress.
Visit alz.org/TrialMatch to learn more about clinical studies and Alzheimer’s

Association TrialMatch®, a free, easy-to-use clinical studies matching service.
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SHARING YOUR DIAGNOSIS
As the disease progresses, you will need the support of those who know and
understand you in order to cope with the challenges ahead. Some relationships may
be tested when you reveal your diagnosis, but others may be strengthened.
It’s normal to experience fear or discomfort. However, talking openly with those you
trust is a powerful way to engage their support and educate them about the disease.
Some individuals choose to share their diagnosis with only their closest family and
friends, while others are comfortable sharing it with a broader group of people.
Assess your personal comfort level to determine your approach.
Negative reactions based on stigma or misconceptions about Alzheimer's may reflect

a person's need for more time or education before he or she can respond to you in
helpful ways. Allow your family and friends time to digest your news so everyone
can move forward positively.
Advice from individuals living with Alzheimer’s:
 You don't need to talk about everything in one sitting. If a person's reaction is
difficult for you, consider continuing the conversation at a later time.
 It's important to keep the lines of communication open as the disease
progresses. Your thoughts and feelings, as well as other people's, may change.
 Remind people that you're still the same person. Even though you're now
living with an Alzheimer's diagnosis, what has made you close to each other
continues unchanged.
Visit alz.org/IHaveAlz for more tips.
CHANGES IN RELATIONSHIPS
After sharing your diagnosis, some people you were once close with may pull away.
It can be hurtful to realize that certain family and friends you thought would be there
for you can't meet your expectations. They may have discomfort about your
diagnosis, as it stirs up fears about their own future. People who can't be a part of
your support circle now may join later once they have time to adjust.
Role changes
Your roles and responsibilities will change as the disease progresses. Some of these
changes and the resulting emotions may include:
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 Loss of independence. Some of your primary responsibilities may be passed
on to someone else.
 Less involvement. Family members may have conversations or make plans
for the future without your presence or feedback.
 Concern. You may worry about burdening others with caregiving roles or
responsibilities you once managed.
Asking for help.

It can be difficult, but adapting to changes and accepting help from others may help
you remain independent longer. Be specific when asking for help. You will benefit
from their support and they may gain fulfillment from helping you.
Keeping your relationships positive and productive:
 Be open about your feelings and experience living with the disease.
 Learn how to ask for help. Tell others what type of support you need and
how they can assist.
 Re-evaluate your relationships. Don’t dwell on people unable to support

you or provide a positive presence in your life. Give them time to adjust to
your diagnosis and try not to take their behavior personally.
PLAN FOR YOUR FUTURE
Putting legal, financial and safety plans in place after receiving your Alzheimer’s
diagnosis is extremely important. It may be difficult to look ahead to the future, but
it’s critical to keep sight of planning and conversations that should take place while
you’re in the early stage of the disease and can fully participate. Having future plans
in place can also provide comfort and confidence to you and your family.
Legal plans
Making legal plans will help ensure your wishes are met in regard to future health and
end-of-life care. Although it can be emotional, you may find comfort in knowing that
your expressed wishes will be followed and your family members will not be tasked
with making difficult decisions when you no longer can.
Legal planning should include:
 Taking inventory of existing legal documents, reviewing them and making the
necessary updates.
 Putting plans in place for future health care and long-term care.
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 Establishing advance directives — legal documents (e.g., durable power of
attorney for health care and living will) that allow you to record your
preferences regarding treatment and care, including your end-of-life wishes.
Preparing important documents

Many documents, including advance directives, can be prepared without the help
of an attorney. However, if you are unsure about how to complete legal or financial
documents, you may want to seek assistance from an attorney specializing in elder
law and/or a financial adviser who is familiar with elder or long-term care
planning.
Visit alz.org/IHaveAlz to learn more
Financial plans
Financial planning often gets pushed aside because of the stress and fear the topic
evokes. However, you can reduce this stress by planning ahead. To make a financial
plan, you should:
 Organize your documents to take inventory of your assets and debts.

 Identify family members who should be included.
 Research potential care costs. Get started at alz.org/carecosts.
 See if you are eligible for government benefits that can help with
prescription costs, transportation and meals.
 Review long-term care insurance to see how it can help with covering costs
of future care.
 If you have served in the armed forces, consider any benefits for veterans.
Learn more about legal and financial planning

 Call our 24/7 Helpline: 800.272.3900.
 Visit alz.org/IHaveAlz for helpful information, tips and resources.
 Take our free workshop, Legal and Financial Planning for Alzheimer's
Disease, online at alz.org/education or at an Alzheimer's Association
office near you (alz.org/findus).
 Visit alz.org/publications to download our Money Matters and Legal Plans
brochures or call 800.272.3900 to request copies.
Safety plans
In the early stage of the disease, you can still lead an independent life. However, there
are some preparations you should make to help you remain independent as long as
possible and ensure your safety as the disease progresses.
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Addressing potential safety issues now can allow you to work with your family to
prepare for difficult decisions later, including when to stop driving and when to
consider services to help prevent wandering.
Visit the Alzheimer's Association Safety Center at alz.org/safety to learn more.
LIVE YOUR BEST LIFE
You can live well with Alzheimer's, particularly in the early stage of the disease.
Consider these tips to help you live your best life:
» Take care of your body. Try to eat well and stay active. Visit your doctor
regularly and rest when you're tired.
» Engage in mentally stimulating activities. Learning new information, taking a
class or challenging yourself to try a new hobby or activity may help increase
your brain activity.
» Connect with your feelings. Talking with friends or a counselor about your
diagnosis can help you cope with difficult emotions.
» Stay social. Meet others living in the early stage through ALZConnected
(alzconnected.org) or a local support group (alz.org/CRF).
» Explore your spiritual side. Focus on the pursuits that bring meaning to your
life and help you experience peace.
Daily living
Things you once did easily will become increasingly difficult, such as maintaining a
schedule or managing money. Accepting changes in your abilities and adopting
coping skills can help restore balance to your daily life and reduce stress as you
continue to live with the disease.
Tips for developing your own coping strategies:
 Identify: Make a list of tasks that have become more challenging. Focus on
the activities that are most important in your daily life.
 Prioritize: Determine if the task is necessary. If so, consider asking for help.
 Strategize: Develop a daily routine and approach one task at a time.
What works well for one person may not work for another, and coping strategies that
work one day may not work the next. Try to find which strategies work best for you
in various situations.
Developing effective coping strategies can help you:
 Remain engaged and active.
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 Respond to challenges that will maximize your independence and well-being.
 Gain a sense of control over your life.
To view a list of coping strategies developed by individuals living with the disease,
visit alz.org/dailylivingtips.
Tools to help you live well

LiveWell Online Resources is a collection of free interactive tools that helps users
navigate the personal and emotional challenges accompanying an Alzheimer’s
diagnosis and provides personalized steps for living well with the disease.
Visit alz.org/livewell to learn more.

Reduce stress
Living with Alzheimer’s or dementia can be overwhelming at times, which can affect
your health and ability to function. Taking steps to reduce stress can help improve
your concentration, decision-making ability and overall quality of life.
To help reduce stress:
 Identify sources of stress in your life. Remove yourself from these situations
whenever possible.
 Establish boundaries and let others know your limits. What are you
willing and unwilling to tolerate? Be as open as possible about this with
others.
 Change your environment. If you’re in an environment that has too much
stimulation and is causing you stress, take a break and find a quiet place to
relax and regroup.
 Let it go. If something becomes too difficult for you, consider whether you
need to complete it now or if you can return to it later.
GET INVOLVED
Some individuals living with Alzheimer’s have found that by getting involved and
raising awareness about the disease, they can strengthen their sense of purpose and
connection to others.
You have a unique opportunity to contribute to the Alzheimer’s cause by turning your
experience into inspiration. The Alzheimer's Association offers ways to join the fight
by raising awareness and funds.
Advocate
As an individual living with Alzheimer’s disease, you can add your voice to the
thousands of others advocating for government action. By speaking out on the issues
you face every day, you can help to shape local, state and federal laws. Visit
alz.org/advocate to learn more.
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Become a leader
The Alzheimer’s Association National Early-Stage Advisory Group offers a unique
opportunity for some individuals living in the early stage of Alzheimer’s to elevate
their voices on a national platform.
Early-Stage Advisors work with the Association to raise awareness about early-stage
issues, advocate with legislators to increase funding for research and support
programs, and provide input on the most appropriate services for people living with
early-stage Alzheimer's.
By educating the public about the impact of Alzheimer’s disease, advisors also help
to reduce the stigma surrounding dementia. Learn more at alz.org/earlystage.
Raise awareness and needed funds

Your involvement in national fundraising efforts helps us work toward our vision of a
world without Alzheimer’s. By participating, you are helping the Association to raise
awareness and funds for care, support and research efforts.
 Participate in our signature fundraising events: Walk to End Alzheimer’s®

(alz.org/walk) and The Longest Day® (alz.org/thelongestday).
 Volunteer at a local event (alz.org/findus).
 Make a donation (alz.org/donate).
TS-0064 | Updated February 2018
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BEHAVIORS
HOW TO RESPOND WHEN DEMENTIA CAUSES UNPREDICTABLE
BEHAVIORS
ALZHEIMER’S AND DEMENTIA-RELATED BEHAVIORS

Alzheimer’s and other dementias can cause people to act in different and unpredictable
ways. Some individuals become anxious or aggressive. Others repeat certain questions or
gestures. Many misinterpret what they hear.
These types of reactions can lead to misunderstanding, frustration and tension, particularly
between the person living with dementia and his or her caregiver. It’s important to
understand that the person is not trying to be difficult and the behavior can be a form of
communication.
IDENTIFY BEHAVIORS
The following three-step approach can help you identify common dementia-related
behaviors and their causes.
1. Examine the behavior
 What was the behavior? Was it harmful?

 Did something trigger it?
 What happened immediately after?
 Could something be causing the person pain?
 Could this be related to medications or illness? Consult a physician to be sure.
2. Explore potential solutions
 Are the person’s needs being met?

 Can adapting the surroundings comfort the person?
 How can you change your reaction or approach?
3. Try different responses
 Did your new response help?

 Do you need to explore other potential solutions? If so, what can you do differently?
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ANGER AND AGGRESSION
Aggressive behavior may be verbal (shouting, name calling) or physical (hitting, pushing).
It’s important to try to figure out what’s causing the anger and try to prevent it from
happening, when possible.
HOW TO RESPOND:
Rule out pain as the cause of the behavior
Pain can trigger aggressive behavior for a person living with dementia.
Try to identify the immediate cause

Think about what happened right before and whether it may have triggered the
behavior.
Focus on feelings, not facts

Look for the feelings behind the words or actions.
Try not to get upset

Be positive and reassuring. Speak slowly in a soft tone.
Limit distractions
Examine the person’s surroundings and adapt them to avoid other similar situations.
Try a relaxing activity

Use music, massage or exercise to help soothe the person.
Shift the focus to another activity

If a situation or activity causes an aggressive response, try something different.
Speak calmly
Using a calm tone, try to reassure the person.
Take a break
If the person is in a safe environment and you are able, walk away and take a
moment for yourself.
Ensure safety
Make sure you and the person are safe. If he or she is unable to calm down, seek
assistance from others. Always call 911 in emergency situations. If you do call 911,
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make sure to tell responders the person is living with dementia, which may cause
them to act aggressively.
Dementia-related behaviors may be due to:
 Physical pain or discomfort: Illnesses, medication, hunger or thirst.

 Overstimulation: Loud noises or a busy environment.
 Unfamiliar surroundings: New places or the inability to recognize home.
 Complicated tasks: Difficulty with activities or chores.
 Frustrating interactions: Inability to communicate effectively may cause fear,
sadness or anxiety.
ANXIETY OR AGITATION
People living with dementia can become anxious or agitated for many reasons. It can help
to learn what triggers this response by considering the person’s surroundings, time of day
and what has just occurred, and evaluating potential sources of pain, hunger, need for sleep
and sudden changes.
HOW TO RESPOND:
Check for pain

Pain can often trigger anxiety or agitation. Sources include being in an
uncomfortable situation, injury, reaction to medication or a urinary tract infection.
Listen to the frustration

Find out what may be causing the anxiety and try to understand.
Provide reassurance
Speak in calming tones and phrases. Let the individual know you’re there for
support.
Involve the person in activities

Engage the person in art, music or other activities to promote relaxation.
Modify the environment

Decrease noise and distractions or relocate the person.
Find outlets for energy

The person may be looking for something to do. Take a walk or go for a car ride.
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FORGETFULNESS AND CONFUSION
A person living with Alzheimer’s disease may not recognize familiar people, places or
things. He or she may forget relationships, call family members by other names or become
confused about where home is. The purpose of common items, such as a pen or fork, may
also be forgotten. These situations can be difficult for caregivers.
HOW TO RESPOND:
Stay calm
Not being recognized can be painful. It may help to talk about it with a friend or
family member.
Respond with a brief explanation

Don’t overwhelm the person with complex responses. Instead, clarify with a simple
explanation.
Show photos and other reminders

Use photographs and other thought-provoking items to remind the person of
important relationships and places.
Offer corrections as suggestions

Avoid explanations that sound like scolding. Try responses like, “I thought it was a
fork” or “I think he is your grandson Peter.”
Try not to take it personally

Alzheimer’s causes forgetfulness, but your support and understanding will continue
to be appreciated.
REPETITIVE ACTIONS
A person living with Alzheimer’s disease may do or say something over and over again —
like repeating a word, question or activity. The person may also pace or undo what has just
been done. In most cases, he or she is likely looking for comfort, security and familiarity.
These actions are rarely harmful, but can be
stressful for the caregiver.
HOW TO RESPOND:
Look for a reason

Try to find out if there is a specific cause or trigger for the repetitive behavior.
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Focus on the emotion
Rather than reacting to what the person is doing, respond to how he or she is
feeling.
Turn the action or behavior into an activity

If the person is rubbing a hand across the table, provide a cloth and ask for help with
dusting.
Stay calm and be patient

Reassure the person with a calm voice and gentle touch.
Provide an answer
Give the person the answer that he or she is looking for, even if you have to repeat it
several times. It may help to write it down and post it in a prominent location.
Engage the person in an activity

The individual may simply be bored and need a distraction. Engage the person in an
activity like taking a walk or working on a puzzle.
Use memory aids

Offer reminders like notes, photographs, clocks or calendars.
NEW SUSPICIONS
Memory loss and confusion may cause a person living with Alzheimer’s to perceive things
in new and unusual ways. Individuals may become suspicious of those around them, even
accusing others of theft, infidelity or other improper behavior. Sometimes a person living
with the disease may misinterpret what he or she sees and hears.
HOW TO RESPOND:
Don’t take offense

Listen to what is troubling the person and try to be understanding. Then offer
reassurance, respond to the feeling and let the person know you care.
Don’t argue or try to convince

Allow the individual to express his or her ideas and acknowledge what was said.
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Offer a simple answer
Share your thoughts, but keep it simple. Lengthy explanations can be
overwhelming.
Switch the focus to another activity

Engage the individual in an activity or ask for help with a chore.
Duplicate any lost items

If the person often searches for a specific item, have several available. For example,
if the individual is always looking for his or her wallet, purchase two of the same
kind.
WANDERING AND GETTING LOST

It’s common for a person living with dementia to wander and become lost, and it can
happen at any stage of the disease. In fact, six in 10 individuals with Alzheimer’s will
wander at some point. They may try to go home when already there or attempt to recreate a
familiar routine, such as going to school or work.
As the disease progresses, the person living with Alzheimer’s will need increased
supervision. At some point, it will no longer be safe to leave him or her alone.
HOW TO RESPOND:
Encourage activity
Keeping the person living with Alzheimer’s active and engaged can help discourage
wandering behavior by reducing anxiety and restlessness. Involve the person in
chores, such as doing dishes, folding laundry or preparing dinner. If the person
shows interest in getting out of the house, consider safe outdoor activities such as an
accompanied walk or gardening.
Inform others
Make sure friends, family and neighbors know that the person is living with
Alzheimer’s and that wandering may occur.
Make the home safe

Install deadbolt or slide-bolt locks on exterior doors and limit access to potentially
dangerous areas within the home.
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Be prepared
Consider enrolling in a wandering response service. Contact the Alzheimer’s
Association 24/7 Helpline (800.272.3900) for more information.
MAKE SAFETY A PRIORITY

Visit alz.org/safety for a robust offering of safety information, tips and resources.
TROUBLE WITH SLEEP

People living with dementia may experience changes in their sleep schedule or have
problems sleeping. Although the exact cause is unknown, these changes result from the
disease’s impact on the brain.
HOW TO RESPOND:
Make a comfortable environment

Maintain a comfortable temperature in the sleeping area. Use night lights and take
other steps to keep the person safe, such as installing appropriate door and window
locks.
Maintain a schedule
As much as possible, encourage a regular routine of waking up, meals and going
to bed.
Manage naps
If the person has trouble sleeping at night, it can be helpful to limit daytime naps.
Exercise
Try to include some type of exercise, as appropriate for the person, during the day.
Physical activity may promote restfulness at night.
Avoid stimulants
Reduce or avoid alcohol, caffeine and nicotine, which can all affect ability to sleep.
Discourage watching television during periods of wakefulness at night, as it can be
stimulating.
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Talk to a doctor
Discuss sleep disturbances with a doctor to help identify causes and possible
solutions. Most experts encourage the use of non-drug measures rather than
medication.
HELP AND SUPPORT FOR CAREGIVERS

Visit alz.org/care to access reliable information and resources, including:
 Alzheimer’s Navigator: Assess your needs and create customized action plans.
 Alzheimer’s Association & AARP Community Resource Finder: Find local
resources.
 ALZConnected: Connect with othercaregivers who can relate to your situation.
TS-0057 | Updated September 2019
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Care options
It is often difficult to decide which type of care is best for a person living with Alzheimer’s
disease or another dementia. How much care is needed depends on how independently the
person can perform everyday tasks. For example, he or she may need help with some of the
following:
 Using the phone.
 Shopping.
 Paying bills.
 House cleaning.
 Meals.
 Laundry.
 Transportation.
 Taking medication.
He or she may also need help with personal care, such as:
 Bathing.
 Toileting.
 Dressing.
 Getting in and out of bed.
 Eating.
 Grooming.
There are several care options. The following information explains which services are
provided under specific types of care and who is responsible for the costs. “Private pay”
indicates care that is paid for by the person living with dementia or whoever is financially
responsible for his or her care. It is important to note that Medicare does not cover non-
medical expenses related to daily living. For more information about Medicare coverage,
visit the Medicare page of alz.org/care or medicare.gov.
Home care and community services.

Many communities offer low cost or free-of-charge services to seniors and individuals with
disabilities. In some cases, veterans’ benefits will cover these services. Home and
community services include:
 Meals on Wheels (offered locally through the Area Agency on Aging).
 Transportation (offered locally through the Area Agency on Aging).
 Personal care.
 Chore services.
 Legal aid services.
 Home repair.
 Activities in senior centers.
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Home health care.
Home health services include intermittent skilled nursing care, physical therapy, speech-
language pathology services, continued occupational services and more. Eligible costs are
covered by Medicare and Medicaid, and may be covered by certain veterans’ benefits.
Note: Medicare does not cover 24-hour home care, home-delivered meals, homemaker
services or personal care. Home health care generally requires a prescription from a
physician.
Adult day services.

These community programs offer care, meals and activities for frail, cognitively impaired
and disabled adults in safe settings. Adult day services are usually open on weekdays only,
although some programs also have evening and weekend hours. Costs are private pay, but
some may be covered by Medicaid or veterans’ benefits.
Independent living.
Independent living offers private apartments or small free-standing houses inside a
community. Group activities and transportation services may be offered. Residents must
provide their own cleaning and home health services. Costs are covered by private
payment.
Board and care.

Board-and-care homes, often remodeled single-family homes, house two to 20 individuals
who need daily supervision and personal care to ensure safety and health. Medical care is
limited. Costs may be covered by Supplemental Security Income (SSI), veterans’ benefits
or private payment.
Assisted living.
Assisted living residences offer many services. Service plans are established for each
resident, and these plans change over time. The federal government does not regulate
assisted living; each state has its own rules. In most states however, an assisted living
center must offer:
 24-hour staff for safety and emergencies.
 Personal, health and social services.
 Activities.
 Meals.
 Housekeeping and laundry.
 Transportation.
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Coverage for assisted living varies — most accept only private insurance or private pay.
However, in some states, Medicaid will cover assisted living and other home care services.
Continuing care retirement community.

Some continuing care retirement communities offer care for the rest of a person’s life. A
life-care contract is signed, which adds services over time, if necessary. These services are
the same as those provided by independent living, assisted living and skilled nursing
facilities. Costs are covered by private pay. Other continuing care retirement communities
offer different levels of care and may accept Medicaid, Medicare or private insurance for
certain services.
Skilled, rehabilitative and long-term care residences

Skilled, rehabilitative and long-term care residences provide a full array of health care
assistance and include all meals. They offer short- or long-term care. Short-term care
provides residential care and assistance for people recovering from surgery, illness or
injury. Long-term care offers services to those who require custodial services over a longer
period of time to prevent more rapid decline. Eligible skilled and rehabilitative services are
covered by Medicare, Medicaid, etc., depending on the specific situation of the resident.
Note: Medicare does not cover custodial, long-term care that is typically required for
individuals living with Alzheimer's.
Home and community-based services (HCBS) waiver

Home and community-based services (HCBS) waivers are offered in some states to help
meet the needs of people who prefer to receive long-term care services in their home or
community rather than in an institutional setting. In states that offer HCBS Waivers,
Medicaid will cover care for daily activities. To find out if your state offers HCBS Waivers,
visit medicaid.gov/medicaid/hcbs.
Resources
alz.org/medicare
Original Medicare: An outline of benefits

alz.org/national/documents/medicare_topicsheet_outlineofbenefits.pdf
TS-0040 | Updated July 2020
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COMMUNICATION
TIPS FOR SUCCESSFUL COMMUNICATION DURING ALL
STAGES OF ALZHEIMER’S DISEASE
COMMUNICATION IS:
» How we express our needs, desires, perceptions, knowledge and feelings.
» A combination of attitude, tone of voice, facial expressions and body language.
» An important part of our relationships because it’s how we relate to one another.
» More about listening than talking.
COMMUNICATION AND DEMENTIA

The communication skills of a person living with Alzheimer’s or another dementia will
gradually decline as the disease progresses. Eventually, he or she will have more difficulty
expressing thoughts and emotions.
Challenges associated with communication can lead to frustration. However, by

understanding what changes may occur, you can prepare, make adjustments and know how
to respond, helping to improve communication.
CHANGES IN COMMUNICATION
For individuals living with Alzheimer’s, changes in communication vary and are based on
the person and how far along he or she has progressed in the disease. Issues you can expect
to see throughout the disease progression include:
» Difficulty finding the right words.
» Using familiar words repeatedly.
» Describing familiar objects rather than calling them by name.
» Easily losing a train of thought.
» Difficulty organizing words logically.
» Reverting to speaking a native language.
» Speaking less often.
» Relying on gestures more than speaking.
COMMUNICATION IN THE EARLY STAGE

In the early stage of Alzheimer’s disease, which is sometimes referred to as mild
Alzheimer’s in a medical context, an individual is still able to participate in meaningful
conversation and engage in social activities. However, he or she may repeat stories, feel
overwhelmed by excessive stimulation or have difficulty finding the right word.
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Tips for successful communication:
» Don’t make assumptions about a person’s ability to communicate because of an
Alzheimer’s diagnosis. The disease affects each person differently.
» Don’t exclude the person with the disease from conversations.
» Speak directly to the person rather than to his or her care partner or companion.
» Take time to listen to the person express his or her thoughts, feelings and needs.
» Give the person time to respond. Don’t interrupt unless help is requested.
» Ask what the person is still comfortable doing and what he or she may need help with.
» Discuss which method of communication is most comfortable. This could include face-
to-face conversation, email or phone calls.
» It’s OK to laugh. Sometimes humor lightens the mood and makes communication easier.
» Don’t pull away; your honesty, friendship and support are important to the person.
COMMUNICATION IN THE MIDDLE STAGE

The middle stage of Alzheimer’s, sometimes referred to as moderate Alzheimer’s, is
typically the longest and can last for many years. As the disease progresses, the person will
have greater difficulty communicating and require more direct care.

» Engage the person in one-on-one conversation in a quiet space with minimal distractions.
» Speak slowly and clearly.
» Maintain eye contact. It shows you care about what he or she is saying.
» Give the person plenty of time to respond so he or she can think about what to say.
» Be patient and offer reassurance. It may encourage the person to explain his or her
thoughts.
» Ask one question at a time.
» Ask yes or no questions. For example, “Would you like some coffee?” rather than “What
would you like to drink?”
» Avoid criticizing or correcting. Instead, listen and try to find the meaning in what the
person says. Repeat what was said to clarify.
» Avoid arguing. If the person says something you don’t agree with, let it be.
» Offer clear, step-by-step instructions for tasks. Lengthy requests may be overwhelming.
» Give visual cues. Demonstrate a task to encourage participation.
» Written notes can be helpful when spoken words seem confusing.
COMMUNICATION IN THE LATE STAGE

The late stage of Alzheimer’s disease, sometimes referred to as severe Alzheimer’s, may
last from several weeks to several years. As the disease advances, the person in the late
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stage may rely on nonverbal communication, such as facial expressions or vocal sounds.
Around-the-clock care is usually required in this stage.

» Approach the person from the front and identify yourself.
» Encourage nonverbal communication. If you don’t understand what the person is trying to
say, ask him or her to point or gesture.
» Use touch, sights, sounds, smells and tastes as a form of communication with the person.
» Consider the feelings behind words or sounds. Sometimes the emotions being expressed
are more important than what’s being said.
» Treat the person with dignity and respect. Avoid talking down to the person or as if he or
she isn’t there.
» It’s OK if you don’t know what to say; your presence and friendship are most important.
FIND MORE COMMUNICATION TIPS

Visit alz.org/commtips.
800.272.3900 | alz.org®
38
Preparing for your doctor’s visit
Fill out the information below to the best of your ability and share it with your doctor.
Be open and honest in answering any questions your doctor may ask you about the changes
you’ve been experiencing
Has your health, memory or mood changed?
How did it change?
When did you first notice the change?
How often does it happen?
When does it happen? Is it always a certain time of day?
800.272.3900 | alz.org®
39
What do you do when it happens?
Do you have problems with any of the following?

Please check the answer.
Repeating or asking the same thing over and over?
__ Not at all __ Sometimes __ Frequently __ Does not apply
Remembering appointments, family occasions, holidays?
Writing checks, paying bills, balancing the checkbook?
Shopping independently (e.g., for clothing or groceries)?
Taking medications according to the instructions?
Getting lost while walking or driving in familiar places?
800.272.3900 | alz.org®
40
Medications and medical history
List all medications (dosage, frequency), including over-the-counter and prescription:
List vitamins and herbal supplements:
List current medical conditions:
List past medical conditions:
Questions to ask the doctor about memory concerns
Which tests will I need to take and how long does it take to get a diagnosis?
Will you refer me to a specialist?
Could the medicines I’m taking be causing my symptoms?
Do I have any other conditions that could be causing my symptoms or make them worse?
What should I expect if it is Alzheimer’s?
Which treatments are available for Alzheimer’s? What are the risks, benefits and possible
side effects?
800.272.3900 | alz.org®
41
What about participating in a clinical study? What are the risks and benefits?
Is there anything else I should know?
When should I come back for another visit?
Some information in this tool was developed for the Chronic Care Networks for
Alzheimer’s Disease (CCN/AD) project and is the joint property of the Alzheimer’s
Association® and the Chronic Care Consortium.
TS-0020 | Updated July 2018
800.272.3900 | alz.org®
42
PRINCIPLES FOR A DIGNIFIED DIAGNOSIS
The first statement of its kind written by people living with dementia on the subject of
the Alzheimer’s disease diagnosis experience.
Talk to me, the person living with dementia, directly.

I am the person living with the disease, and though those close to me will also be affected, I
am the person who needs to know first.
Tell the truth.

Even if you don’t have all of the answers, be honest about what you do know and why you
believe it to be so.
Test early.
Helping me get an accurate diagnosis as soon as possible gives me more time to cope, live
to my fullest potential and access information and resources.
Take my memory concerns seriously, regardless of my age.

Age may be the biggest risk factor for Alzheimer’s, but Alzheimer’s is not a normal part of
aging. Don’t discount my concerns because of my age. At the same time, don’t forget that
the disease can also affect people in their 40s, 50s and 60s.
Deliver the diagnosis in plain but sensitive language.

My diagnosis may be one of the most important things I ever hear. Please use language that
I can understand and be sensitive to how this may make me feel.
Coordinate with other care providers.

I may be seeing more than one doctor. It’s important that you talk to my other care
providers to ensure everyone has the information so that changes can be identified early and
I won’t have to unnecessarily repeat tests.
Explain the purpose of different tests and what you hope to learn.
Testing can be very physically and emotionally challenging. It would help me to know the
purpose of the test, how long it will take and what you expect to learn from the process. I
would also appreciate the option of breaks during longer tests and an opportunity to ask
questions.
Give me tools for living with this disease.

Please don’t give me my diagnosis and then leave me alone to confront it. I need to know
what will happen to me, what medical treatments are available, and what support and
resources are offered through the Alzheimer’s Association® and my community.
800.272.3900 | alz.org®
43
Work with me on a plan for living a quality life.
Medication may help modify some of my neurological symptoms, but I am also interested
in recommendations for keeping myself as healthy as possible through diet, exercise and
social engagement.
Recognize that I am an individual and the way I experience this disease is unique.
This disease affects each person in different ways and at a different pace. Please be sure to
couch your explanation of how this disease may change my life with this in mind.
Alzheimer’s is a journey, not a destination.

Treatment doesn’t end with the writing of a prescription. Please continue to be an advocate
— not just for my medical care but for my quality of life as I continue to live with
Alzheimer’s disease.
800.272.3900 | alz.org®
44

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Page 1 : From Northern California/Northern Nevada Chapter

Page 2 : 10 Warning Signs of Alzheimer's: How to identify and address concerns

Page 6 : Understanding Alzheimer's and dementia

Page 13 : Principles for a dignified diagnosis

Page 25 : Behaviors: How to respond when dementia causes unpredictable behaviors

Page 33 : Care options

Page 39 : Preparing for your doctor’s visit

Page 43 : Principles for a dignified diagnosis

Your local chapter

Generated: 3/31/2021 12:30:02 PM

Updated November 2018

UNDERSTANDING ALZHEIMER’S AND DEMENTIA

10 WARNING SIGNS OF ALZHEIMER’S

1. MEMORY LOSS THAT DISRUPTS DAILY LIFE

What’s a typical age-related change?

2. CHALLENGES IN PLANNING OR SOLVING PROBLEMS

3. DIFFICULTY COMPLETING FAMILIAR TASKS

What’s a typical age-related change?

4. CONFUSION WITH TIME OR PLACE

What’s a typical age-related change?

5. TROUBLE UNDERSTANDING VISUAL IMAGES AND SPATIAL

What’s a typical age-related change?

6. NEW PROBLEMS WITH WORDS IN SPEAKING OR WRITING

What’s a typical age-related change?

7. MISPLACING THINGS AND LOSING THE ABILITY TO RETRACE STEPS

8. DECREASED OR POOR JUDGMENT

What’s a typical age-related change?

9. WITHDRAWAL FROM WORK OR SOCIAL ACTIVITIES

What’s a typical age-related change?

10. CHANGES IN MOOD AND PERSONALITY

What’s a typical age-related change?

WHAT TO DO IF YOU NOTICE A SIGN

Visit alz.org/memoryconcerns for tips on approaching memory concerns.

TS-0063 | Updated June 2019

ALZHEIMER’S AND DEMENTIA

Other common dementias

 Dementia with Lewy bodies is a type of progressive dementia related to buildup of

 Frontotemporal dementia (FTD) is a group of disorders. Progressive cell

Visit alz.org/dementia to learn about other types of dementia.

ALZHEIMER’S IN THE BRAIN

What goes wrong in the brain

Hispanics, African Americans and women

Lowering the risk of cognitive decline

STAGES OF ALZHEIMER’S DISEASE

 Problems coming up with the right word or name for something.

 Lose awareness of recent experiences as well as of their surroundings.

FDA-APPROVED TREATMENTS FOR SYMPTOMS

Tips for coping with symptoms include:

The third type of drug is a combination of a cholinesterase inhibitor and a glutamate

 Donepezil and memantine (Namzaric®)

Clinical studies drive progress

Visit alz.org/TrialMatch to learn more about Alzheimer’s Association TrialMatch ®, a free,

TS-0069 | Updated June 2019

Talk to me, the person living with dementia, directly.

Tell the truth.

Take my memory concerns seriously, regardless of my age.

Deliver the diagnosis in plain but sensitive language.

Coordinate with other care providers.

Give me tools for living with this disease.

Alzheimer’s is a journey, not a destination.

TS-0060 | Updated April 2018

Alzheimer’s is the most common form of dementia, which leads to changes in