ATrain Education

 

Continuing Education for Health Professionals

Course Modules

  • Course Introduction
  1. Understanding Alzheimer’s Disease and Related Disorders (ADRD)
  2. What Are Some Other Kinds of Dementia?
  3. Characteristics of Alzheimer’s Disease and Related Dementias
  4. Challenges for Caregivers of Patients with ADRD
  5. Communicating with Residents
  6. Conclusion
  7. Resources and References
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FL: ADRD for Nursing Homes, Adult Day Care, and Hospice, 1 unit

Florida DOEA Approval: This course has been approved by the Florida Department of Elder Affairs for Nursing Homes (NH AD 8437), Hospice (HSP AD 8441), and Adult Day Care (ADC AD 8439). Approval through May 10, 2020.

Certified Trainer: The author is certified as an ADRD trainer by the Florida Department of Elder Affairs and is available via e-mail at Lauren@ATrainCeu.com or by phone Monday-Friday from 9 a.m. to 5 p.m. (Pacific Time) at 707 459 1315.

  • Author:
    • Lauren Robertson, BA, MPT

      Lauren Robertson earned a BA in Biology from Mills College in Oakland, California, and a Master's degree in Physical Therapy from the University of California at San Francisco.

      Lauren is the founder and co-owner of ATrain Education (atrainceu.com) and she has written or co-written more than two hundred courses on a wide range of topics for her continuing education website. She is certified as a trainer on Alzheimer's disease and related dementias by the Florida Department of Elder Affairs.

  • Contact hours: 1
  • Pharmacotherapy hours: 0
  • Expiration date: September 1, 2019
  • Course price: $19

Course Summary

This training is for those who have direct contact with patients in nursing homes, adult day care, or hospice. It is designed to increase your awareness and understanding of Alzheimer’s disease and related disorders.

The first section defines dementia, describes how dementia affects the brain, and discusses how the symptoms of dementia differ from normal age-related changes. The second section discusses the stages of dementia along with symptoms and behaviors you might see during the different stages. The last section discusses communication challenges at the different stages of dementia and provides tips for communicating with people at those different stages.

The following information applies to occupational therapy professionals:

  • Target Audience: Occupational Therapists, OTAs
  • Instructional Level: Introductory
  • Content Focus: Category 1—Domain of OT, Client Factors

Criteria for Successful Completion

80% or higher on the post test, a completed evaluation form, and payment where required. No partial credit will be awarded.

Conflict of Interest/Commercial Support

Conflict of Interest/Commercial Support

Accredited status does not imply endorsement by ATrain Education Inc. or by the American Nurses Credentialing Center or any other accrediting agency of any products discussed or displayed in this course. The planners and authors of this course have declared no conflict of interest and all information is provided fairly and without bias. No commercial support was received for this activity.

Accreditation Information

Objectives: When you finish this course you will be able to:

  • Name 3 properties of dementia.
  • Name 3 differences between normal, age-related changes and the changes seen in dementia.
  • Describe the first symptom you are likely to notice in someone in the early stage of Alzheimer’s disease.
  • Give one characteristic each for Alzheimer’s, frontal-temporal, vascular, and Lewy body dementia.
  • Relate 1 symptom and behavioral change at each stage of Alzheimer’s disease.
  • Describe 2 challenges facing caregivers at each stage of dementia.
  • Outline 3 strategies for communicating with residents at each stage of dementia.

Understanding Alzheimer’s Disease and Related Disorders (ADRD)

In this course we will discuss dementia. We will explain how dementia affects the brain. We will discuss how Alzheimer’s disease differs from other types of dementia. We will go over behaviors you will see in people with mild, moderate, and severe dementia. Finally, we will discuss communication issues you might see at different stages of dementia.

Alzheimer’s disease and other types of dementia are caused by damage to the brain. The part of the brain that is damaged in dementia is called the cerebrum. The cerebrum fills up most of our skull and is divided into four lobes:

  • Frontal lobes
  • Temporal lobes
  • Parietal lobes
  • Occipital lobes

The cerebrum is what makes us human—it does our thinking, remembering, talking, and understanding. It controls our emotions. It helps us reason and make decisions and helps us tell right from wrong. It also controls our movements, vision, and hearing. Many of these areas of the cerebrum are damaged by dementia.

 

The Human Brain

image: brain anatomy

The four lobes of the cerebrum, plus the cerebellum and the brainstem. Alzheimer’s disease starts in the temporal lobe. Copyright, Zygote Media Group, Inc. Used with permission.

 

Our brain has two other important parts: the cerebellum and the brainstem. Touch the back of your head just above your neck. The cerebellum is right there. It controls coordination and balance.

 

image: cerebrum, cerebellum, and brainstem

The cerebellum and brainstem are at the back of your head below the cerebrum.

 

Now move your hand a little down and stop before your get to your spine. The brainstem is right there—at the back of the head, above your spine. It connects the brain to the spinal cord. The brainstem oversees automatic things like breathing, digestion, heart rate, and blood pressure. The cerebellum and the brainstem are not affected by dementia.

What Is Dementia?

Dementia is a brain disease. It is progressive, meaning it gets worse over time. It is a terminal illness, meaning it will eventually lead to death. Alzheimer’s disease (AD) is the most common kind of dementia.

AD begins in the area of the brain that makes new memories. That’s why someone with AD forgets something that happened just a moment ago.

Other types of dementia begin in areas of the brain involved with thinking and reasoning. Although dementia can start in one part of the brain, eventually it will affect the entire brain.

Emotions are also affected when someone gets dementia. That’s why someone with Alzheimer’s disease and other types of dementia sometimes has difficulty controlling their emotions.

When someone has dementia their thinking becomes less clear. Decisions are more difficult and safety awareness declines. People also get tired more easily. Eventually, people with dementia lose the ability to take care of themselves.

For people between the ages of 65 and 75, only about 5% will get any sort of dementia. For people over the age of 85, about 40% will experience some form of dementia. Even so, dementia is not considered a normal part of aging.

How Does Dementia Affect the Brain?

Dementia changes the entire brain. In Alzheimer’s disease, nerve cells in the brain die and are replaced by something called plaques and tangles. As the nerve cells die, the brain gets smaller. Over time, the brain shrinks, affecting nearly all its functions.

 

Normal Brain Contrasted with AD Brain

image: comparison of normal brain and AD brain

A view of how Alzheimer’s disease changes the whole brain. Left side: normal brain; right side, a brain damaged by advanced AD. Source: Courtesy of The Alzheimer’s Association. Used with permission.

 

Normal Age-Related Changes

We all experience changes as we age. Some people become forgetful when they get older. They may forget where they left their keys. They may also take longer to do certain mental tasks. They may not think as quickly as they did when they were younger. These are called age-related changes. This is a normal part of aging—it not dementia.

Age-related changes don’t affect a person’s life very much. Someone with age-related changes can easily do everything in their daily lives—they can prepare their own meals, manage their finances, safely drive a car, go shopping, and use a computer. They understand when they are in danger. They know how to take care of themselves. Even though they might not think or move as fast as when they were young, their thinking is normal—they do not have dementia.

The table below describes some of the differences between someone who is aging normally and someone who has ADRD.

 

Normal Aging vs. ADRD

Normal aging

AD or other dementia

Occasionally loses keys

Cannot remember what a key does

May not remember names of people they meet

Cannot remember names of spouse and children—don’t remember meeting new people

May get lost driving in a new city

Get lost in own home, forget where they live

Can use logic (for example, if it is dark outside it is night time)

Is not logical (if it is dark outside it could be morning or evening)

Dresses, bathes, feeds self

Cannot remember how to fasten a button, operate appliances, or cook meals

Participates in community activities such as driving, shopping, exercising, and traveling

Cannot independently participate in community activities, shop, or drive

 

In some older adults, memory problems are a little bit worse than normal age-related changes. This is known as mild cognitive impairment, also called MCI.

Mild cognitive impairment isn’t dementia. You won’t generally see personality changes, just a little more difficulty than is normal with thinking and memory. For some people, mild cognitive impairment gets worse and develops into dementia, but this doesn’t happen with everyone.

What Is Alzheimer’s Disease?

Alzheimer’s disease (AD) is the most common cause of dementia. More than 5 million people in the United States suffer from Alzheimer’s. It is the sixth leading cause of death in the United States and affects women more than men. About two-thirds of Americans caring for someone with Alzheimer’s disease are women (Alzheimer’s Association, 2017).

The first thing you will notice in someone with Alzheimer’s disease is that they have trouble making new memories. This is called short-term memory loss. This happens because the part of the brain where new memories are formed becomes damaged by dementia.

Long-ago memories are stored in a part of the brain that is not affected by Alzheimer’s dementia. Especially at first, people can remember and talk about events from earlier times in their lives. As the dementia gets worse and more of the brain is affected, long ago memories might also start to fade.

What Are Some Other Kinds of Dementia?

Alzheimer’s disease isn’t the only cause of dementia. Unfortunately, there is no way to know for sure what type of dementia a person has. There is no blood test or x-ray that can diagnose Alzheimer’s or other types of dementia. The only sure way to know if someone had Alzheimer’s disease is to examine their brain after they die.

The symptoms are a little different in each type of dementia. It’s good to know the difference to help you understand why someone is acting the way they are.

Frontal-Temporal Dementia

Look at the picture of the brain below. Put your hand on your forehead. The part of your brain just behind your forehead is called the frontal lobe. Now slide your fingers from the front to the side of your head (your temple). This part of the brain is called the temporal lobe.

There is a type of dementia that affects this part of the brain. It is called frontal-temporal dementia. It is the most common type of dementia in people under the age of 60. It’s not nearly as common as Alzheimer’s and it starts at a much younger age.

 

image: brain anatomy

Copyright, Zygote Media Group, Inc. Used with permission.

 

We use this part of our brain to make decisions, to tell right from wrong, and to control our emotions. We use this part of the brain to plan for the future. People with dementia in this part of the brain have poor judgment and lose the ability to tell right from wrong. They also have less control over their behavior.

So instead of losing short-term memory like people with Alzheimer’s disease, a person with frontal-temporal dementia might start doing things that are confusing to their friends and family. They might steal, even though they have never stolen in the past. They might make inappropriate sexual remarks or engage in inappropriate sexual behaviors, even though they’ve never done these things in the past.

Vascular Dementia

Vascular dementia is caused by lots of small strokes. This can happen when people don’t control their high blood pressure. Generally, vascular dementia doesn’t affect memory as much as Alzheimer’s. This is because the damage is spread throughout the brain.

Vascular dementia causes mood changes that are stronger than the mood changes you might see in someone with Alzheimer’s. It can also affect judgment—but not as strongly as in someone with frontal-temporal dementia.

You might have cared for more than one patient with vascular dementia because many older adults have high blood pressure that isn’t under good control. You may also see vascular dementia in someone who has had a stroke.

Lewy Body Dementia

Lewy body dementia is less common than Alzheimer’s dementia, frontal-temporal dementia, or vascular dementia. It is responsible for a little less than 5% of all cases of dementia. People with Parkinson’s disease can have this type of dementia.

Lewy body dementia happens when tiny unwanted molecules form in the brain. These unwanted molecules (Lewy bodies) become scattered throughout the brain.

People with Lewy body dementia usually don’t have problems with memory, at least at first. But they can have visual hallucinations, mental changes, and sudden confusion. These symptoms can come and go throughout the day.

Lewy body dementia can also affect a person’s sleep and cause a person to suddenly faint or pass out. This means a person with Lewy Body dementia is at high risk for unexpected falls.

 

Type of dementia

Characteristics and symptoms

Alzheimer’s disease (AD)

  • Loss of short-term memory
  • Behavioral changes
  • Personality changes
  • Mood swings

Frontal-temporal dementia

  • Changes in behavior
  • Poor judgment
  • Loss of moral reasoning
  • Loss of inhibition

Vascular dementia

  • Memory affected but less than in AD
  • Poor judgment
  • Mood changes—more than in AD

Dementia with Lewy bodies

  • Visual hallucinations
  • Sleep disturbance
  • Motor control problems
  • Mental changes

Characteristics of Alzheimer’s Disease and Related Dementias

In the previous section, we talked about different kinds of dementia. Each one has its own set of characteristics. A characteristic is a feature or quality you would expect to see in a disease. You now know that one characteristic of frontal-temporal dementia is that it starts at an earlier age than Alzheimer’s.

Symptoms and Behavior Changes by Stages

A symptom is a change in the body or the mind. Behavior is how we act, move, and react to our environment. Anger and happiness are behaviors.

Loss of memory is a symptom of dementia. Changes in judgment and logical thinking are also symptoms of dementia. Judgment is the ability to make a decision or form an opinion after thinking about something for a while. Logic is the ability to do something step-by-step or to understand the sequence of a task.

Symptoms and behaviors change as dementia gets worse. For some people symptoms can get worse really fast. For others symptoms may get worse gradually—over 10 to 20 years. A good way to understand symptoms and behaviors is to look at how things change in the early, middle, and late stages of dementia.

Symptoms and Behaviors in Mild Dementia

The early or mild stage of ADRD begins with mild forgetfulness, especially memories of recent events. Forgetfulness might be the most obvious symptom at this stage, especially in Alzheimer’s disease.

Logical thinking and judgment are mildly affected, especially in frontal-temporal dementia. At this stage, you might notice a little confusion with complex tasks that take many steps to complete. People try to cover up mild confusion so friends, coworkers, and family might not notice that something is wrong.

Even when symptoms are mild, people’s behavior begins to change, especially in Alzheimer’s disease. People with mild dementia know something is wrong. They may begin to worry about the future or feel stress and anxiety. They may get depressed as they struggle with changes in their thinking. Mood changes might be most obvious in a person with vascular dementia.

People with mild dementia may occasionally become angry or aggressive. They might have difficulty making decisions. They will ask for help more often. They still might be able to work, drive, and live independently, but they will begin to need more help from family or coworkers.

 

Changes in the Brain During Mild Dementia



In the earliest stages of Alzheimer’s disease, before symptoms can be detected with current tests, damage (shaded in blue) begins in the areas of the brain involved in:

  • Learning and memory
  • Thinking and planning
brain changes in mild dementia

Source: Courtesy of The Alzheimer’s Association. Used with permission.

 

Symptoms and Behaviors in Moderate Dementia

In the moderate stage of dementia, people are more forgetful. Confusion also gets worse. Speech and communication are obviously affected. Judgment and logical thinking are much worse than in the early or mild stage.

Because of memory problems and confusion, caregivers must take over tasks that the person with dementia was able to do in the past. In this stage, travel, work, and keeping track of personal finances are probably no longer possible.

In the moderate stage, behavior changes are much more obvious. Inappropriate behaviors such as cursing, kicking, hitting, and biting are not uncommon. Some people may repeat questions over and over, call out, or demand your attention. Sleep problems, anxiety, agitation, and suspicion can develop.

A person with moderate dementia is often still able to walk. This is because the part of the brain that controls movement is not damaged. If a person can still walk or if they can get around easily in a wheelchair, they might begin to wander. More direct monitoring is needed than during the early stage of dementia.

During this stage, people are no longer safe on their own. Caregiver responsibilities increase. This causes stress, anxiety, and worry among family members and caregivers. Surprisingly, many people with dementia may not be diagnosed until they reach this stage.

 

Changes in the Brain During Mild to Moderate Dementia

 

In mild to moderate stages, the parts of the brain involved with memory, thinking, and planning become more affected (shaded in blue).

Work or social life becomes more difficult. Confusion increases, and many people with Alzheimer’s are first diagnosed in this stage.

Damage spreads to the areas of the brain involved with:

  • Speaking and understanding speech
  • Logical thinking
  • Safety awareness
brain changes in mild to moderate dementia

Source: Courtesy of The Alzheimer’s Association. Used with permission.

 

Symptoms and Behaviors in Severe Dementia

 

My mom is 96 years old and has pretty severe dementia. She still lives at home because we provide 24/7 care. If we put her in a nursing home I think she would go down pretty fast. Loud noises, too many people around, people that don’t know her needs and habits, boredom, loneliness—all those things would drive her crazy. At this stage I think she’d be really hard to handle in a nursing home. She’s kind of stubborn and independent and I’m sure she’d wander, yell, swear, shout, hit, and cry. At home she doesn’t do any of these things (well, a little now and then) but we work pretty hard to keep things quiet, warm, and steady for her.

Family Caregiver, Fremont, CA

 

People with severe dementia lose all memory of recent events although they may still remember events from long ago. They are easily confused and are unable to make decisions. Speech, communication, and judgment are severely affected. They cannot think logically. Sleep disturbances are very common.

All sorts of challenging behaviors occur in people with severe dementia. Screaming, swearing, crying, shouting, loud demands for attention, negative remarks to others, and self-talk are common. Outbursts can be triggered by boredom, loneliness, depression, cold or heat, loud noises, and pain.

Wandering, rummaging, or hoarding can occur. A person may become paranoid or have delusions or hallucinations.

In the severe stage, independence is lost. Around-the-clock care is needed. People at this stage need assistance with eating, bathing, walking, dressing, and all other daily living activities (ADLs).

 

Changes in the Brain During Severe Dementia



In advanced Alzheimer’s disease, most of the surface of the brain is severely damaged (shaded in blue). Individuals lose their ability to communicate, to recognize family and loved ones, and to care for themselves.

brain changes in severe dementia

Source: Courtesy of The Alzheimer’s Association. Used with permission.

 

Symptoms and Behaviors at the End of Life

As people with dementia approach the end of life they may lose all memory—not just memory of recent events. The damage to their brains is so severe that they are in a constant state of confusion. They are startled by loud noises and quick movements. They can no longer communicate their needs and desires using speech.

At this stage, people can develop other illnesses and infections. They may experience agitation, psychosis*, delirium**, restlessness, and depression.

*Psychosis: loss of contact with reality.

**Delirium: a sudden, severe confusion that can be caused by infections, a reaction to medications, surgery, or illness.

At the end of life, people are completely dependent on caregivers. They may be unable to eat, swallow fluids, or move without help. Dementia becomes so severe that people may become bedridden.

Most commonly, people with Alzheimer’s disease die of pneumonia or from complications of fractures, especially hip fractures.

Challenges for Caregivers of Patients with ADRD

 

I’ve been hired to help care for a woman with mild dementia. She has five kids—they have always come to their mother to discuss their personal problems. When they visit I noticed the mom always agrees with them but when they leave she turns around and says “I can’t stand to hear all their complaints.”

 

She gets really agitated after they visit. Sometimes she sits and cries for the rest of the day and into the evening. I can’t snap her out of it. She didn’t used to be like this. I get so tired it almost isn’t worth it—I never get any sleep when I’m there. I finally had to cut back from 7 to 4 days—it was really difficult dealing with the family and caring for this woman.

 

Professional Caregiver, Los Altos, CA

 

A caregiver is someone who provides assistance to a person in need. Care can be physical, financial, or emotional. Each year, nearly 16 million family members and friends provide over 18 billion hours of unpaid care to those with Alzheimer’s and other dementias (Alzheimer’s Association, 2017).

Caregivers help with basic activities of daily living (ADLs) such as bathing, dressing, walking, and cooking. They also help with more complex tasks such as managing medications and taking care of the home. Caregivers can provide direct care or manage care from a distance. They can be a family member, a neighbor, a friend, or a medical professional.

The responsibilities of caregiving can be overwhelming. More than half of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial and physical difficulties (Alzheimer’s Association, 2017).

Caregiver Challenges in Mild Dementia

In the early stage of dementia, family caregivers may not know much about dementia and may not seek help. They may be confused and frustrated when their family member “acts funny.”

In the early stages, caregiving responsibilities can usually be handled by family members. In this stage, caregivers can often handle light caregiving duties. The person with dementia may only need help with complex activities such as banking, bill paying, medical appointments, and medications.

People with mild dementia may still live alone, drive, and even have a job. They can usually handle activities of daily living such as bathing, eating, and cooking.

Caregiver Challenges in Moderate Dementia

In the moderate stage, the stress of caring for a previously independent person can take a great deal of time. It can cause anxiety, sleep disruption, anger, and depression.

In this stage, more time is needed for caregiver duties. Loss of free time, work conflicts, and family issues may seem impossible to resolve. Often the responsibility of caregiving falls mostly on one person—often a woman—leading to anger and frustration with other family members.

Caregiver Challenges in Severe Dementia

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.

Family Caregiver, 2017

In the later stages of dementia, when fulltime care is needed, family members face difficult decisions. Should the person with dementia move in with a family member? Should a full-time caregiver be hired? Should their loved one be admitted to a long-term care facility?

Behaviors such as agitation, irritability, obscene language, tantrums, and yelling are embarrassing, tiring, and frustrating for caregivers. Caregivers can be injured if a person throw things, strike out, or bites. Caregivers may react out of fear and strike back or yell to stop these behaviors, creating guilt and more frustration.

In this stage, safety is a challenge for caregivers. A one-on-one caregiver may be needed during the day. Caregivers become exhausted tending to a person who needs constant supervision. Jobs, hobbies, friendships, travel, and exercise fall to the side. Caregivers often neglect their own health, causing more stress.

If the person with dementia is still living at home, caregivers must provide more support. Family members may find it impossible to continue to provide care and may have to move their loved one to an assisted living or skilled nursing facility.

At the end of life, care is usually carried out by a group of people who work together to care for and comfort a person prior to death. Hospice care is available under Medicare, most state Medicaid programs, and some private insurance plans. Hospice provides care for those believed to have less than six months to live.

Advance directives such as a living will and a durable power of attorney should be on file. These legal documents allow a person to communicate wishes about end-of-life care while they are still able to make these decisions.

Communicating with Residents

 

My mom gets pretty confused—especially in the early morning and late evening. She struggles for words—often trying to explain something by saying “you know—that thing” and then gets frustrated because I don’t understand. When I read the newspaper to her, all the articles get jumbled up in her head and she doesn’t know when one article ends and another starts. So I just read short articles, Miss Manners, that sort of thing. I tell her “that’s the end of the article about former President Obama—this is a new article about the weather back east.”

Caregiver, 2017

 

Think about the last conversation you had with a friend or family member. You said what you wanted to say. You remember what was said and understood the conversation. You probably had the conversation while doing something else—fixing breakfast or getting ready for work. You have no trouble talking when there is a lot of noise in the background.

A person with dementia has trouble with these communication skills. They have to work hard to say what they want to say. They might not remember what was said a few moments ago. They have trouble talking and doing something else at the same time. Background noise is confusing and irritating.

Improving Verbal Communication

Verbal communication is communication with words. It is an important part of daily life. Verbal communication creates positive relationships and lets us know that someone cares. It allows us to express our feelings and gives the caregiver an opportunity to assess the well-being of the person they are caring for.

A successful conversation with a resident who has dementia begins with eye contact and an introduction. You can put a person at ease by starting with something light and conversational such as the weather or what’s happening in the news. Nonverbal gestures such as head nods, a light touch on the arm, and a warm expression create trust.

No matter how severe the dementia, effective communication is very important. Practice these habits:

  • Approach from the front, slowly. Avoid standing to the front or crowding the person, which may appear threatening.
  • Move to the side and crouch down.
  • Take a deep breath and relax.
  • Greet the person by name, then introduce yourself.
  • Use short, 1- or 2-part questions and wait for a reply.
  • Use a clam voice, be attentive and sympathetic.
  • Continue the conversation by asking a follow-up question.

General Conversations

General conversations are friendly and informal. They are not usually related to a specific task or goal. General conversations are social, a way to greet people and find out how they are doing. You can begin a general conversation by asking for an opinion or giving an opinion. You can make a suggestion or ask for an explanation.

You can connect with people by learning about what they liked when they were younger. What music was popular? Who was president? What major events happened in their younger years? Did they serve in the military? Where did they work? Where did they travel? What were their interests and hobbies?

Nonverbal communication using hand gestures and unhurried movement reinforces your words. If the person does not answer right away, be patient and wait a bit. It’s okay to be silent, which is calming and reassuring—especially in social conversations.

A general conversation can be about yourself, about your workday, your commute, or your family. It can include positive comments about other people you work with or other residents. If someone else is in the room include that person in the conversation.

People with dementia—especially moderate or severe dementia—may not remember what you talked about yesterday but they still want to hear what you have to say, even if you are repeating something said earlier.

Conversations Related to a Task or Goal

When you want to complete a specific task, use what is called a “closed question.” This shows interest and invites a person to respond. Say, for example, “Are you hungry?” or “Are you ready to get dressed?” Closed questions limit the conversation and keep the conversation focused on the task at hand.

Talk slowly and don’t argue. Use gentle persuasion and be positive when giving directions. Share your goals with the resident. Be respectful and relaxed. Keep in mind that the person you are caring for may not share your goal. Or they may not understand what you want. The following story featuring George and Ann illustrates this point. Think about what you would do in this situation.

 

George in the Morning

George has moderate dementia. He is a resident in a nursing home. He can still get up and dress himself without help. This morning George got dressed and is resting in a chair next to his bed. Ann, a nursing aide, enters his room and calls out to him, “Come on George. Are you hungry? Did you sleep well? Time for breakfast! Stand up. Let’s get you to the dining room.” George doesn’t move, so Ann tries again, “Come on, George, get up! You don’t want your breakfast to get cold, do you? I don’t think so. Come on George, I’m really busy!” Ann takes his arm and helps him stand up. George pulls away and sits back in his chair.

 

What Is George Thinking?

George is comfortable and a little sleepy. He’s not sure what time of day it is. He isn’t hungry. A young woman he doesn’t know has barged into his room and is saying something to him in a loud voice. He is trying to figure out what she is saying—when she says something else. Her voice is loud and he grimaces a little. He is not sure what she wants. She grabs his arm and he supposes he should go with her but she is being too pushy and this makes him mad. So he pulls away from the young woman and sits back in his chair. He turns his head and tries to ignore her, hoping she will go away.

 

What Is Ann Thinking?

Ann is really busy. Two nursing aides called in sick so she was assigned six additional patients. She was way behind and needed to get George to the dining room for breakfast. When she enters his room she is relieved to see that George is already dressed and up in a chair. She tells him it’s time for breakfast, takes his arm, and helps him stand up. George seems confused and he pulls away. Ann repeats what she had just said, only more loudly. She reaches for him again but he turns away, crosses his arms, and refuses to budge.

 

What Could Ann Have Done?

Ann should enter George’s room quietly and respectfully after knocking on the door to get George’s attention. She should ask “May I come in?” and wait for George’s reply. Approaching George more slowly, squatting next to him, and introducing herself gives George a chance to understand who she is. A pause at the end of each sentence gives George time to respond. “Hi, George.” Pause. “How are you?” Pause. “It’s 9 a.m.” Pause. “Time for breakfast.” Pause. If George doesn’t respond, Ann can repeat what she just said in a calm voice or ask another short, closed question: “George, are you hungry?” Pause. Now George only has one simple statement to think about and he is more likely to understand and respond. Ann must remember that George doesn’t have to do what she asks. It’s okay for George to have his breakfast in his room or even skip breakfast and eat when he is hungry.

 

Improving Nonverbal Communication

Nonverbal communication is communication without words. Facial expressions, eye movements, hand gestures, body language, and movements of the arms and legs are examples of nonverbal communication. Tone of voice and how well you listen and pay attention are nonverbal skills that matter just as much verbal conversation.

How you dress, your posture, how you approach a person with dementia and how close you stand to a person are also examples of nonverbal communication. Even silence is a form of nonverbal communication.

Touch is a powerful form of nonverbal communication. Touch can be friendly, frightening, soothing, dominant, or supportive. Touch has different meanings depending upon your culture, gender, age, and situation.

The way you speak carries nonverbal information. Your tone can reveal calmness or impatience, affection or disapproval, confidence or fear. When you are talking, the loudness of your voice and its tone and rhythm are communicating additional information. If you are hurried, frustrated, or angry, a person will pick up on your mood and body language more quickly than your verbal communication.

How the environment looks is a form of nonverbal communication. A clean, nicely decorated room with good lighting is supportive. It encourages people to interact. A drab room with harsh lighting and little decoration has the opposite effect—it shows a lack of support and respect. Some studies have shown that people say they don’t like people when they see them in unattractive rooms.

Communicating When a Person Is Nonresponsive

People in the late stage of dementia may become unresponsive. This means they do not respond to what is happening around them. It means that they can no longer communicate their wishes.

Communicating with a person who is unresponsive can be a challenge for family and caregivers. It’s difficult to know what the person is thinking or feeling. Fortunately, many of the techniques that work in the earlier stages of dementia are useful in this stage as well.

Assume that the person can hear and possibly understand even if they don’t respond. Use gestures and facial expressions to support what you’re trying to say. Give the person time to understand why you are there. Use a calm, slow, and respectful attitude.

You can communicate concern and caring by using pillows for neck, arm, and leg support, a warm blanket, and gentle repositioning. Mild range-of-motion exercises, gentle touching, and massage are reassuring.

Keep the environment peaceful and avoid loud or sudden noises; the person has no way to tell you when a sound is annoying. Reduce discomfort and confusion by keeping the area around the bed or chair free of clutter.

No matter how unresponsive a resident is, practice these habits:

  • Approach in a calm and relaxed manner.
  • Slow your own movements.
  • Re-introduce yourself at each encounter.
  • Address the person by a preferred name or title.
  • Use short, simple sentences.
  • Use hand gestures and light touch to communicate your intentions.
  • Avoid a condescending tone.

Conclusion

Dementia is a disease of the brain that interferes with a person’s ability to think in a normal, logical manner. Although Alzheimer’s disease is the most common cause of dementia, there is more than one kind of dementia. Alzheimer’s disease and other types of dementia are diseases of the brain and not a part of normal aging.

Many people with dementia have changes in their behavior. The changes are more pronounced as the dementia progresses. Despite these changes, they continue to have many of the same likes and dislikes they had earlier in life.

Caring for a person with dementia can be time-consuming and stressful. This is especially true as the dementia gets worse and the person being cared for becomes less independent. Caregivers are at high risk for depression. Caregivers should be encouraged to use the many resources and support services available to them both in-person online.

Communication issues affect people with dementia. As dementia progresses, it becomes more difficult for people with dementia to communicate their needs. Good verbal and nonverbal communication skills are needed for caregivers to provide a high level of care as the dementia progresses.

Working with people who have dementia can be satisfying and rewarding. It takes patience, practice, and training to learn to understand the world from that person’s point of view. People with dementia can still enjoy life. They can enjoy memories, interactions with the people around them, and activities that are matched to their preferences and abilities. Your efforts to make the person comfortable and happy can make a big difference in their final years of life.

Resources and References

Resources

2-1-1 Information and Referral Search

For help with food, housing, employment, healthcare, counseling, and crisis intervention, and more in many counties in Florida. www.211.org, or call 211

Alzheimer’s Association

This organization provides support, education, and research throughout Florida. They have excellent educational material, a newsletter, fundraising and volunteer opportunities, and a 24/7 helpline. www.alz.org or call 800 272 3900

  • Central and North Florida Chapter: Altamonte Springs, FL
  • Florida Gulf Coast Chapter: Clearwater, FL
  • Southeast Florida Chapter: West Palm Beach, FL
  • Alabama/Florida Panhandle: Pensacola, FL
Alzheimer’s Disease Education and Referral (ADEAR) Center

ADEAR was established by an act of Congress in 1990 and is part of the National Institutes of Health. Its mandate is to compile, archive, and disseminate information about Alzheimer’s disease for health professionals, people with AD and their families, and the public. The website provides excellent educational material about Alzheimer’s disease, current research initiatives, support services, and much more. https://www.nia.nih.gov/alzheimers, or call 800 438 4380

Eldercare Locator

The Eldercare Locator, a public service of the Administration on Aging, U.S. Department of Health and Human Services, is a nationwide service that connects older Americans and their caregivers with information on senior services. www.eldercare.gov/eldercare.NET/Public/index.aspx or 800 677 1116

Family Caregiver Alliance National Center on Caregiving

FCA is a community-based nonprofit organization that addresses the needs of families and friends providing long-term care for loved ones at home. They provide assistance, education, services, research, and advocacy. www.caregiver.org, or call 800 445 8106

Florida Council on Aging

The Florida Council on Aging is a statewide association that represents aging interests through education, information-sharing, and advocacy. www.fcoa.org, or call 850 222 8877

Florida Department of Elder Affairs

The Department provides most services through its Division of Statewide Community-Based Services, which works through the state’s eleven Area Agencies on Aging and local service providers to deliver essential services to a vital segment of the population. The Department also directly administers a wide range of programs, ranging from the:

  • Long-Term Care Ombudsman Program,
  • Office of Public and Professional Guardians,
  • Communities for a Lifetime to SHINE (Serving Health Insurance Needs of Elders) and
  • CARES (Comprehensive Assessment and Review for Long-Term Care Services).

http://elderaffairs.state.fl.us/index.php, or call 850 414 2000

Florida Elder Helpline: Florida Department of Elder Affairs

Provides information regarding elder services and activities available through the Elder Helpline Information and Assistance service within each Florida County. All Elder Helplines can be accessed through the Florida Telecommunication Relay System (1-800-955-8771 for TDD or 1-800-955-8770 for Voice) which allows telephone calls to be placed between TDD users and non-users with the help of specially trained operators translating the calls. http://elderaffairs.state.fl.us/doea/elder_helpline.php

Teepa Snow, Dementia Education and Training

Teepa Snow is an advocate for those living with dementia and has made it her personal mission to help families and professionals better understand how it feels to be living with the challenges and changes that accompany various forms of the condition so that life can be lived fully and well. Her company, Positive Approach, LLC was founded in 2005 and offers education to family and professional care partners all over the world. Her training is available through video, online education, and in person trainings and consulting. http://teepasnow.com/ or call 877 877 1671

References

Alzheimer’s Association. (2017). Alzheimer’s Disease: Facts and Figures. Retrieved March 23, 2017 from http://www.alz.org/facts/overview.asp.

Alzheimer’s Disease Education and Referral Center (ADEAR). (2015). Caring for a Person with Alzheimer’s Disease. Retrieved March, 2017 from https://www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease/about-guide.

Alzheimer’s Disease International (ADI). (2013). World Alzheimer Report 2013. Journey of Caring. Retrieved March, 2017 from http://www.alz.co.uk/research/world-report-2013.