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FL DOEA Approval: This course is approved by the Florida Department of Elder Affairs, curriculum approval #HH AD 8450.
Certified Trainer: The author is certified as an ADRD trainer by the Florida Department of Elder Affairs and is available via e-mail or by phone Monday–Friday (Pacific Time) from 9 a.m. to 5 p.m. at 707 459 1315.
This course provides home health staff with the skills, techniques, and strategies to care on a daily basis for clients with Alzheimer’s disease or a related dementia. It compares Alzheimer’s disease to other types of dementia, provides techniques for verbal and non-verbal communication, discusses symptoms seen at each stage of dementia, relates techniques intended to promote independence in activities of daily living, and provides information about how to work with family members and caregivers of people with dementia.
ATrain Education, Inc. is an approved provider by the American Occupational Therapy Association. The following course information applies to occupational therapy professionals:
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.
This course will be reviewed every two years. It will be updated or discontinued on May 16, 2020.
Criteria for Successful Completions
80% or higher on the post test, a completed evaluation form, and payment where required. No partial credit will be awarded.
ATrain Education, Inc. is approved provider by the Florida Board of Nursing (#50-10593).
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ATrain Education, Inc. is recognized by the New York State Education Department's State Board for Physical Therapy as an approved provider of Physical Therapy and Physical Therapy Assistant continuing education.
ATrain Education Inc. is approved as a provider of continuing education by the Florida Board of Occupational Therapy.
This course is accepted by the Georgia State Board of Physical Therapy.
ATrain Education is a Board Approved Provider by the Florida Board of Nursing Home Administrators. Provider #50-10593.
This course is approved by the Florida Department of Elder Affairs, approval #HH AD 8450. Curriculum expiration date: May 16, 2020.
When you finish this course you will be able to:
In this course we explain how dementia affects the brain and how Alzheimer’s disease differs from other types of dementia. We will review behaviors you might see in people with mild, moderate, and severe dementia and describe communication issues you will encounter at different stages. We offer techniques to address behavioral issues should they arise, and how to promote independence in all activities. Finally, we will discuss how to work with family members and caregivers who are caring for a person with dementia.
Dementia is caused by damage to a part of the brain called the cerebrum. The cerebrum fills up most of our skull and is divided into four lobes (one on each side of the head):
The four lobes of the cerebrum, plus the cerebellum and the brainstem. Alzheimer’s disease starts in the temporal lobe, an area of the brain associated with memories and emotions. Copyright, Zygote Media Group, Inc. Used with permission.
The cerebrum is what makes us human—it allows us to think, make plans, talk, and understand. It controls our memories and emotions. It helps us reason, make decisions, and tell right from wrong. It also controls our movements, vision, and hearing. Many of these areas of the cerebrum are damaged by dementia.
Dementia is a group of symptoms impacting cognitive functions such as memory, judgment, reasoning, and social skills as well as interfering with the ability to function in daily life. Dementia 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.
When someone has dementia their thinking becomes less clear. Decisions are more difficult and safety awareness declines. People also get tired more easily. Emotions are also affected—that’s why people with Alzheimer’s disease and other types of dementia sometimes have difficulty controlling their emotions.
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.
The brain is the most complex organ in the human body. This three-pound mass of gray matter contains more than 90 billion nerve cells with about 150 trillion connections. The brain is at the center of all human activity—it regulates the body’s basic functions, allows us to interpret and respond to everything we experience, and shapes our thoughts, emotions, and behaviors (NIDA, 2014).
A nerve call (neuron) has three major parts: (1) the cell body—the part of the nerve cell that contains the nucleus and other organelles, (2) the axon—an elongated process that carries the nerve impulse away from the cell body, and (3) dendrites—which receive nerve impulses from neighboring nerves and transmit them to the cell body.
Left: Illustration of a healthy neuron showing the nucleus, cell body, dendrites, and axons. Source: WPClipArt.com. Used with permission. From http://www.wpclipart.com/medical/anatomy/cells/neuron/neuron.png.html. Right: A healthy nerve cell. Source: ADEAR, 2014. Public domain.
Neurons are electrically excitable, which allows them to receive, integrate, and send information. They are also plastic—which means they have the ability to modify their function in response to changes in input. Neurons communicate by releasing substances called neurotransmitters into the space between the neurons, called synapses. Once a neurotransmitter is released, it crosses the synapse and binds to receptors on adjacent neurons.
An image from the Human Connectome Project, which shows the abundance and complexity of white matter nerve fibers in the human brain. Human Connectome Project, National Institutes of Health. Used with permission.
Most neurons in the human brain are myelinated. Myelin, also called white matter, is a fatty substance that surrounds the axon and increases the speed and efficiency of the nerve impulse. Myelin insulates the axon, preventing leakage of the electrical impulse into the surrounding fluid as well as providing structural support for the elongated axon.
In certain brain regions, the white matter covering an axon is degraded or lost. This affects the brain’s ability to send and receive nerve impulses and to interact with neurons in other parts of the brain. When axons lose their ability to efficiently transmit a nerve signal, brain function is affected. Dementia interrupts the efficient function of these networks, affecting every aspect of a person’s life. Because white matter nerve fibers connect the different regions of the brain, even a little loss or breakdown of myelin can affect cognition. Take a look at the number and complexity of nerve fibers in the picture below get an idea of the millions of nerve fibers and billions of connections within the human 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.
Dementia affects cognition—thinking, memory, judgment, learning, language comprehension, attitudes, beliefs, safety awareness, morals, and the ability to plan for the future. Dementia also affects motor and sensory functions such as balance, spatial awareness, vision, pain processing, and the ability to modulate (control) sensory input.
Dementia alters visual-spatial perception, and decreases the ability to recognize and avoid hazards (Eshkoor et al., 2014). It is also thought to impair working memory, a type of memory that promotes active short-term maintenance of information for later access and use. The decline in working memory also affects language comprehension and visuospatial reasoning (Kirova et al., 2015).
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.
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.
People experiencing 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 and know how to take care of themselves. Even though they might not think or move as easily or quickly as when they were young, their thinking is normal—they do not have dementia.
In some older adults, memory problems are a little bit worse than normal age-related changes. This is known as mild cognitive disorder. Mild cognitive disorder 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.
The table below describes some of the differences between someone who is aging normally and someone who is experiencing the effects of dementia.
Normal Again vs. ADRD
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|
Alzheimer’s disease typically starts by damaging an area of the brain called the hippocampus—the part of the brain responsible for new, short-term memories. This can cause a person with dementia, particularly someone with Alzheimer’s disease to forget something that happened just a moment ago. Although most types of dementia start in one part of the brain, eventually the entire brain will be affected.
It is common to describe Alzheimer’s disease, as well as other dementias, as progressing in “stages”. The stages are usually described as mild, moderate, and severe or early, middle, and late. Even though disease progression differs from person to person and varies depending on the type of dementia, we nevertheless associate certain symptoms and behaviors with these stages. The type of dementia, along with a person’s underlying medical condition, general health, family support, and co-morbid conditions affect how fast and how far the dementia progresses.
In the earliest stages of Alzheimer’s disease, before symptoms can be detected, plaques and tangles form in and around the hippocampus, an area of the brain responsible for the formation of new memories (shaded in blue). Source: The Alzheimer’s Association. Used with permission.
In the early, mild stage of dementia due to Alzheimer’s disease, plaques and tangles begin to cause damage within the temporal lobes, in and around the hippocampus. The hippocampus is part of the brain’s limbic system and is responsible for the formation of new memories, spatial memories and navigation, and is also involved with emotions.
Mild cognitive changes, which have likely been developing for several years begin to affect memory, decision-making, and complex planning. A person with mild dementia can still perform all or most activities of daily living such as shopping, cooking, yardwork, dressing, bathing, and reading and may even continue to work but will likely begin to need help with complex tasks such as balancing a checkbook and planning for the future.
Did You Know. . .
In a study by the National Institutes on Aging involving 62 participants, researchers used neuroimaging to assess changes in brain volume and cerebrospinal fluid amyloid levels.
This finding suggests that tests of immediate recall may be more useful for detecting Alzheimer’s during early stages of the disease, while tests of delayed recall may be better suited to tracking it at later stages (NIA, 2015).
In mild to moderate stages, plaques and tangles (shaded in blue) spread from the hippocampus forward to the frontal lobes. Source: The Alzheimer’s Association. Used with permission.
As Alzheimer’s disease progresses from the mild to moderate stage, plaques and tangles spread forward to the areas of the brain involved with language, judgment, and learning. Work and social life become more difficult as confusion increases. Speaking and understanding speech, the sense of where your body is in space, executive functions such as planning, logical thinking, safety awareness, and ethical thinking are affected. Many people are first diagnosed with Alzheimer’s disease in this stage.
In advanced Alzheimer’s, plaques and tangles (shaded in blue) have spread throughout the cerebral cortex. Source: The Alzheimer’s Association. Used with permission.
In the later or severe stage, damage is spread throughout the brain. Because so many areas of the brain are affected, individuals may lose their ability to communicate clearly, to recognize family and loved ones, and to care for themselves.
People with severe dementia can lose all memory of recent events although they often still remember events from the past. They are easily confused, unable to make decisions, and cannot think logically. Speech, communication, and judgment are severely affected. Sleep disturbances and emotional outbursts are very common.
Stages of Other Types of Dementia
Although Alzheimer’s dementia worsens over time, other types of dementia may progress differently.
Because vascular dementia is caused by a stroke or series of small strokes, dementia may worsen suddenly and then stay steady for a long period of time—especially if the underlying cardiovascular causes are addressed.
In Lewy body dementia, which is often associated with Parkinson’s disease, symptoms—including cognitive abilities—can fluctuate drastically, even throughout the course of a day. Nevertheless, the dementia is progressive and worsens over time. In the later stages, progression is similar to that of Alzheimer’s disease.
Frontal-temporal dementia generally starts at an earlier age than Alzheimer’s disease. In the early stage—depending on which lobe of the brain is affected there are changes in personality, behavior, emotions, and judgment. There may also be early changes in language ability, including speaking, understanding, reading, and writing. Motor decline can also occur as the disease progresses. This is characterized by difficulties with movement, including the use of one or more limbs, shaking, difficulty walking, frequent falls, and poor coordination (NIH, 2014).
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 the election—this is a new article about the weather back east.”
Think about the last conversation you had with a conversation with friend or family member. You said what you wanted to say. You remembered 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 even if there was a lot of noise in the background.
People with dementia have difficulty initiating and understanding communication. They have to work hard to say what they want to say. Depending on the severity of the dementia, they might not remember what was said a few moments ago. They will often have trouble carrying on a conversation and doing something else at the same time. Background noise is often confusing and irritating.
My mom has pretty bad dementia but still listens intently to our conversations. She followed the 2016 election with a great deal of interest even though when asked, she couldn’t remember the names of the presidential candidates. When we said to her “are you are Democrat or a Republican” she responds immediately and fiercely “I’m a Democrat!”
Family Caregiver, California
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. General conversations usually begin with a greeting or a comment, suggestion or explanation.
A general conversation can be about yourself, your hobbies, your workday, your commute, or your family. It can include positive comments about other people you work with or other residents. General conversations usually include other people who are close by.
A general conversation with a person with dementia is no different than a conversation you would have with a friend or coworker. 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? How many children do they have? Where did they work? Where did they travel? What were their interests and hobbies?
A person with 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.
Dementia affects goal-directed conversations just as much as it affects general conversations. However, when trying to complete a specific task, communication must be more direct. Conversations about a specific task are more successful when “closed questions” are used. A closed question shows interest and invites a person to respond. For example, “Are you hungry?” or “Are you ready to get dressed?” limits the scope of the conversation and keeps the person with dementia focused on the task at hand.
Task-related conversations involve gentle persuasion and positive feedback. Speak in a slow, clear voice, be respectful and relaxed, and explain to goal of the task at hand. The person you are caring for may not share your goal or agree with what you are asking. Or, more likely, 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 and lives at home with his daughter and a caregiver. 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 new caregiver, 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 kitchen for breakfast.” 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 kind of busy! I have to do the laundry and make your bed.” 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, warm, 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—and then 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 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 a new caregiver and needs to get George up and fed before his daughter gets back from shopping. The regular home health aide called in sick and Ann is covering for her today. She wants to get George to the kitchen 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 tries to help 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 beside him, offering her hand, 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.
When communicating with a person with dementia, there are several things to keep in mind. What is the level of the person’s dementia? Is there a hearing loss? Are you having a general, social conversation or do you have a specific goal or task in mind?
Verbal communication is communication with words. It is an important part of daily life, 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 person who has dementia begins with eye contact and an introduction. Starting with something light and conversational such as the weather or what’s happening in the news will put the person at ease. Nonverbal gestures such as head nods, a light touch on the arm, and a warm expression create trust.
When communication with a person with dementia, practice these habits:
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.
Appropriate 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 reveals calmness or impatience, affection or disapproval, confidence or fear. The loudness of your voice and its tone and rhythm communicate 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 powerful 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. Studies have shown that people say they don’t like people when they see them in unattractive rooms.
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.
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. It does not mean they don’t feel or understand what is happening around them, at least on some level.
Communicating with a person who is unresponsive can be a challenge for family members and caregivers. It is 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.
When working with a person who us unresponsive, practice these habits:
It is important to recognize when a person who is non-responsive is experiencing pain. There is good agreement in both large and small studies that about 50% of the people with dementia regularly experience pain (van Kooten et al., 2015).
Healthcare providers may feel uncertain about pain in clients with dementia, especially if the client is unable to communicate when they are in pain. Clients, especially those with advanced dementia are less able to respond to pain scales, necessitating the use of observational scales in up to about half of clients. Unfortunately, more than half of clients with advanced dementia experience pain in the last week of life that is not satisfactorily managed (Volicer and van der Steen, 2014).
Both physiologic and behavioral responses can indicate the presence of pain. Physiologic responses include tachycardia, increased respiratory rate, and hypertension. Behavioral responses include splinting, grimacing, moaning or grunting, distorted posture, and reluctance to move. A lack of physiologic responses or an absence of behaviors indicating pain does not mean there is an absence of pain.
The most structured observational pain assessment tools have been published by the American Geriatrics Society, which describe six domains for pain assessment in older adults:
For non-communicative patients, the Pain Assessment in Advanced Dementia (PAINAD) is a commonly used observational scale. It is able to distinguish the effect of analgesics and difference between various severities of pain (Volicer and van der Steen, 2014). This tool, developed by a team of clinicians at the E.N. Rogers Memorial VA Hospital in Bedford, Massachusetts, assesses breathing, negative vocalization, facial expression, body language, and consolability.
Pain Assessment in Advanced Dementia (PAINAD)
Smiling or inexpressive
No need to console
Distracted or reassured by voice or touch
Unable to console,
distract, or reassure
PAINAD Scoring: 1-3 = Mild; 4-6 = Moderate; 7-10 = Severe
Behavior is how we act, move, and react to our environment. Behaviors tend to change as dementia progresses. Some are related to changes in the brain, some to personality, and some to physiological symptoms. Memory loss and changes in the ability to think logically as well as loss of judgment certainly affect behavior.
Symptoms and behaviors are related but different. A symptom is a change in the body or the mind. Loss of memory is a symptom of dementia. Changes in judgment and logical thinking are also symptoms of dementia. Anger and happiness are examples of behaviors.
Depending on the type of dementia and underlying medical issues, symptoms generally worsen gradually—over 10 to 20 years. Behaviors can change gradually or suddenly, depending on the type of dementia, environmental factors, caregiver competence, medical issues, and the overall quality of care.
In the early or mild stage of dementia, particularly Alzheimer’s dementia, forgetfulness and mild emotional changes are the most common symptoms. Although less obvious, logical thinking and judgment are also mildly affected.
At this stage, you will notice a little confusion with complex, multi-step tasks, increased frustration, and a loss of interest in usual activities. People with mild dementia understandably try to hide their confusion from friends, coworkers, and family.
Even when symptoms are mild, behavior begins to change, especially with Alzheimer’s disease. People with mild dementia know something is wrong. They begin to feel stress and anxiety and worry about the future. Depression may become an issue as they struggle with changes in their thinking.
People with mild dementia can occasionally become angry or aggressive. They often have increased 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.
In the moderate stage of dementia, behavioral changes are more obvious to family members and caregivers. Increased forgetfulness and confusion, difficulty with communication, and impaired judgment and logical thinking are common symptoms. Cursing, arguing, yelling, or hitting can develop at this stage. Some people may repeat questions over and over, call out, or continually demand attention. Sleep problems, anxiety, agitation, and suspicion can develop.
Because the part of the brain that controls movement is not damaged, some people with moderate dementia might wander. More direct monitoring is needed than during the early stage of dementia and people at this stage may no longer be safe on their own. Caregiver responsibilities increase causing stress, anxiety, and worry among family members and caregivers. Surprisingly, many people with dementia may not be diagnosed until they reach this stage.
My mom is 96 years old and has pretty severe dementia. She still lives at home with 24/7 care. She would never survive in a nursing home. Loud noises, too many people around, people that don’t know her needs and habits, boredom, loneliness—all those things would drive stark-raving crazy. I’m sure she’d wander, yell, swear, shout, hit, and cry. At home she doesn’t do any of these things but we work pretty hard to keep things quiet, warm, and consistent for her.
Family Caregiver, Fremont, CA
People with severe dementia lose all memory of recent events. 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 at this stage. Screaming, swearing, crying, shouting, loud demands for attention, negative remarks to others, and self-talk are common. These types of behaviors can be triggered by boredom, loneliness, depression, cold or heat, loud noises, and pain and should not be shrugged off by caregivers as they are likely related to unmet needs.
Behaviors seen in the moderate stage will likely persist and worsen in the severe stage of dementia—especially if caregivers fail to determine the cause of the unwanted behavior. Wandering, rummaging, and hoarding are common behavioral issues. Some people, particularly those with Lewy body dementia may become paranoid or experience delusions or hallucinations.
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. At this stage, people can develop other illnesses and infections.
At the end of lie, a person with dementia may experience agitation, psychosis*, delirium**, restlessness, and depression. Because of hearing and visual deficits, they are startled by loud noises and quick movements. They are often unable to communicate their needs and desires using speech. Communication may be entirely nonverbal—moaning, calling out, hitting, biting, and grabbing.
*Psychosis: loss of contact with reality.
**Delirium: a sudden, severe confusion that can be caused by infections, a reaction to medications, surgery, or illness.
The problem-solving approach encourages caregivers and family members to understand and address challenging behaviors by looking for the root cause of a behavior and treating it—usually with environmental modification, medication management, and caregiver training. The problem-solving approach identifies critical points for intervention based on observing the antecedent, behavior, and consequence (A, B, C) of a challenging behavior.
The ABC approach is very effective when successful strategies are shared by staff, caregivers, and family members. It helps caregivers understand when and how often a behavior occurs and offers the opportunity for discussion and planning.
The problem-solving approach is also invaluable for examining your own behaviors and responses to dementia. How you react and interact with a person with dementia can have a profound effect on a person’s behavior. Understanding your own biases, frustrations, and triggers will help you approach a person struggling with dementia with patience and compassion.
As a caregiver, family member, or healthcare provider, how you interact with a person with dementia requires different strategies and techniques depending on the stage of a person’s dementia. Family caregivers, interacting with only one or two people may still find it difficult to identify when a new strategy or technique is needed. Healthcare providers, because they interact with many different people in varying stages of dementia must have strategies and techniques that they can call on throughout the day.
Nevertheless, there are certain foundational strategies and techniques that are useful when interacting with someone with dementia, no matter the type or stage. Using a technique such as the problem-solving approach is recommended anytime you encounter an unwanted behavior.
Agitation refers to observable, non-specific, restless behaviors that are excessive, inappropriate, and repetitive. Aggression is characterized by physically or verbally threatening behaviors directed at people, objects, or self. This can include verbal, vocal, or motor activity (Burns et al., 2012).
Aggressive behaviors can be a threat to the safety of those with dementia and to those around them. These behaviors can be particularly difficult to manage because they can negatively affect the caregiver’s state of mind.
Agitated and aggressive behaviors can include:
Agitation and aggression occur in about 50% to 80% of nursing home residents with dementia (Ahn & Horgas, 2013). These behaviors can be related to loss of control, discomfort, fear, or be a response to a perceived threat or violation of personal space. Agitation and aggression often occur during personal care tasks involving close caregiver-resident contact (Burns et al., 2012). Pain is also associated with agitated and aggressive behaviors and nursing home residents with severe pain are more likely to display these behaviors (Ahn & Horgas, 2013).
Psychosocial and environmental interventions can reduce or eliminate agitated or aggressive behaviors. Appropriate touch and music therapy, massage, craniosacral therapy,* therapeutic touch, acupressure, and tactile massage have been shown to be successful for treating aggression. In addition, individual behavioral therapy, bright light therapy, and Montessori activities, and individualized, person-centered care based on psychosocial management is recommended (Burns et al., 2012).
*Craniosacral therapy: a hands-on technique that uses soft touch to release restrictions in the soft tissue surrounding the central nervous system.
For people with dementia, antipsychotics may reduce aggression and psychosis, particularly among those most severely agitated. However, in older people, antipsychotics are associated with increased overall mortality, worsening cognitive impairment, hip fracture, diabetes, and stroke (Jordan et al., 2014).
Wandering is a broad term associated with a diverse set of behaviors. It can include aimless locomotion with a repetitive pattern, hyperactivity, and excessive walking, as well as leaving a safe environment and becoming lost alone in the community (Rowe et al., 2011). Wandering can cause harm if a person with dementia exits the home or facility, elopes,* or becomes lost (Burns et al., 2012).
*Elopement: When a patient or resident who is cognitively, physically, mentally, emotionally, or chemically impaired wanders away, walks away, runs away, escapes, or otherwise leaves a caregiving facility or environment unsupervised, unnoticed, or prior to their scheduled discharge (The National Institute for Elopement Prevention and Resolution).
The Alzheimer’s Association estimates that up to 60% of persons with dementia will “wander” into the community at some point during the course of their disease (Rowe et al., 2011). In nursing homes, wandering occurs in approximately 40% to 60% of residents with dementia (Ahn & Horgas, 2013).
Wandering patterns can include moving to a specific location, lapping or circling along a path, pacing back and forth, or wandering at random. Wandering can be related to boredom, pain and discomfort, disorientation, and memory problems. People may wander out of habit or because they think something from their past needs to be done, such as going home after work, walking the dog, getting exercise, or searching for something they think they have lost.
People with Alzheimer’s disease are more likely to wander randomly than those diagnosed with other types of dementias. People with frontal-temporal dementia have a tendency to engage in pacing and lapping behaviors. Restlessness, with a compelling need for movement or pacing, has been linked to side effects of psychotropic medications, particularly antipsychotics (Burns et al., 2012).
Wandering can be a beneficial activity if there are safe places to wander. The most important goal is to prevent a person from wandering into unsafe areas, other resident’s rooms, or eloping from the facility. Wandering can be addressed or even encouraged by providing safe, looping wandering paths with interesting rest areas and providing regular exercise.
A person’s pre-dementia lifestyle may be a factor in whether they are likely to wander. Studies have indicated that people with the following characteristics are more likely than others to wander:
Did you Know. . .
Florida has a Silver Alert program, which provides immediate broadcast of information to the public when a cognitively impaired person becomes lost while driving or while walking. It allows local and state law enforcement to broadcast information to citizens so they can assist law enforcement in the rescue of the endangered person and notify law enforcement with helpful information. For more information, contact the Silver Alert information line, local law enforcement, or the Florida Department of Law Enforcement either online or by phone at 888 356 4774.
From 2008 to 2013 there were nearly 650 Silver Alerts enacted in Florida. The highest number was issued in Palm Beach County (14%). During this period more than three-quarters of the reports were issued for men. A little more than half of the reports were issued for people between 80 and 89 years of age (SASC, 2014).
Rummaging and hoarding refer to behaviors in which a person gathers, hides, or puts away items in a secretive and guarded manner. These actions are considered a type of obsessive-compulsive behavior. Rummaging and hoarding are not necessarily dangerous or unsafe but they can be frustrating for caregivers and other residents.
Hoarding can arise in those with dementia due to fear of losing money or possessions, due to lack of control, need to “save for a rainy day”, or simply out of confusion. Hoarding is associated with insecurity and anger and may be an attempt to hold onto possessions and memories from the past.
Cognitive changes such as memory loss, poor judgment, and confusion can contribute to the impulse to rummage and hoard. People may rummage out of boredom or to find something they think has been misplaced. They may have a fear of being robbed or feel a need to protect their possessions. Rummaging through familiar items may create a sense of safety and security. Confusion can lead to rummaging through another person’s belongings, which can be particularly frustrating for neighboring residents.
To address rummaging and hoarding behaviors, try to determine what triggers or causes the behavior and look at the consequences, if any. The reason for rummaging and hoarding may not be clear to you but there may be a perfectly good reason why someone with dementia is rummaging.
Rummaging through another person’s belongings can be prevented by installing locks on drawers and closets. The rummaging impulse might be satisfied by creating a rummaging room or a bag or drawer of items that the person can pick through. Restricting all rummaging and hoarding can be frustrating for a person who enjoys these activities.
In a home setting, place important items such as credit cards or keys out of reach or in a locked cabinet. Consider having mail delivered to a post office box and check wastepaper baskets before disposing of trash. Other recommendations:
Psychosis is a disturbance in the perception or appreciation of objective reality (Burns et al., 2012). Symptoms can include delusions, hallucinations, and paranoia. A delusion is a false idea or belief or a misinterpretation of a situation. Hallucinations are sensory events in which a person hears, tastes, smells, sees, or feels something that is not there.
People suffering from paranoia can become suspicious of caregivers or friends; they may feel these people are stealing from them or planning them harm. Sensory deficits can contribute to delusions, and particularly hallucinations, because of the distortion of sound or sight.
Delusions and hallucinations can be caused by health factors such as urinary tract infections or environmental factors such as poor lighting or sensory overload. Changes in the brain can also contribute to these behaviors, especially changes related to sensory awareness, memory, and decreased ability to communicate or be understood.
Visual hallucinations can occur in the moderate to severe stages of dementia and are particularly common in those with Lewy body dementia. While atypical antipsychotics are sometimes used off-label to manage hallucinations, in a person with Lewy body dementia, antipsychotic medications can make hallucinations worse. In a person with new onset of visual hallucinations, the number one cause is medication side effects. For this reason, all medications the person is receiving should be carefully reviewed. This includes prescription and over-the-counter medications, as well as herbal supplements.
The first step in the management of delusions and hallucinations is to rule out delirium as a cause. Another important factor is to determine if the claims by the person with dementia actually did occur (Burns et al., 2012).
Observe the behavior and listen to what the person experiencing the paranoia or delusion has to say. Is the feeling pleasant or frightening? If the hallucination elicits a fearful or negative response, address the person’s need to regain comfort. For example, you may ask “What will make you feel safe or comfortable?”
When communicating with someone who is expressing paranoia or delusions, realize that even if their complaint is not true, it is very real for that person. Do not to argue; simply explaining the truth of the situation will not work. Do not agree with the person or further validate the paranoia or delusion, but respond to the person’s emotion.
To manage hallucinations, decrease auditory and visual stimuli and evaluate for visual or hearing impairment. Delusions and hallucinations can be addressed using behavioral interventions or, in some cases, antipsychotic medication. Atypical antipsychotics have largely replaced typical or traditional antipsychotics as the main treatment for psychosis, hallucinations, and delusions in those with dementia (Burns et al., 2012).
Sleep disturbances are very common among older adults and are of particular concern in people with dementia. Sleep disturbances probably contribute to the onset and severity of some behavioral problems, particularly anxiety, increased confusion, wandering, and sundowning.*
*Sundowning: increased confusion and restlessness in the late afternoon and early evening, possibly due to damage to the part of the brain that regulates sleep patterns.
The symptoms of sleep disruption vary according to the type of dementia and may present with the following features:
Studies have suggested that approximately one-quarter to one-third of those with Alzheimer’s disease have problems with sleep, partly due to the degeneration of neurons in the part of the brain that controls circadian rhythms. Sleep apnea, restless leg syndrome, medical and psychiatric issues, and environmental and behavioral factors often predate the onset of dementia. Chronic pain also interferes with sleep and disturbed sleep reduces the pain threshold (Deschenes & McCurry, 2009).
Medications used to treat the psychological and behavioral symptoms of dementia, as well as those used to slow the progression of dementia, can cause daytime sleepiness and lead to sleep disturbances. Short-term sleep disturbances in people with dementia are often treated with antidepressants, benzodiazepines, or non-benzodiazepines although there is limited evidence to support their long-term safety in cognitively impaired older adults (Deschenes & McCurry, 2009).
Before treating sleep disturbances look for potentially treatable causes, which can include pain, hunger and thirst, the need to urinate, infections, adverse drug reactions, and even noise. Some non-pharmacologic treatments that have been used to treat sleep disorders include:
The “small things” of care are particularly important in ensuring that care is genuinely supportive of the individual, and enhances that person’s autonomy and well-being. The humanity with which assistance for everyday living is offered, especially help with eating and intimate care, is crucial in helping the person retain their self-esteem and dignity, as are the manner and tone in which a person is addressed; the care taken to ensure that they participate as much as they can or wish in any decision about their day-to-day life; the trouble taken about appropriate and attractive food and environments; and access to meaningful activity.
Nuffield Council on Bioethics
Activities of daily living (ADLs) are the tasks we do during our daily lives. Because ADL skills decline as dementia progresses, caregiver involvement naturally changes over time. Caregivers often help more than is needed and research suggests that people with dementia—even those with advanced dementia—can do more than caregivers allow them to do.
Promoting independence requires good communication, patience, and the ability to understand and accept that dementia changes how a person approaches an activity. Many caregivers assume someone with dementia is no longer capable of understanding how to complete an activity and take over the task. This not only robs people of independence, it also affects their self-worth.
ADLs are generally divided into basic ADLs and instrumental or functional ADLs. Basics ADLs are the skills needed to take care of personal needs such as:
Instrumental ADLs (IADLs) are the skills needed to function within society and within the community. As with basic ADLs, these skills decrease as dementia progresses. For example, when a person is no longer able to perform basic math calculations, a caregiver or financial advisor must oversee finances. When insight becomes limited and memory compromised, medical decision-making and medication management will also shift to the hands of a caregiver. Guardianship and capacity evaluations are often needed, especially when estate and legal issues need to be addressed (DeFina et al., 2013). IADLs include:
Even with proper training and mentoring, it’s nearly impossible to be a great caregiver all of the time. It’s no fun getting up in the middle of the night to clean up after an incontinent family member. It’s almost impossible to be patient when your mom swears at you, screams, hits, bites, collapses during a transfer, or refuses to eat. But the training I found online and the support from hospice helped a lot—it gave me strategies and techniques to use when all seemed lost and when nothing was working.
Family Caregiver, California
Good communication starts with patience and thoughtfulness. Good communication builds trust, encourages independence, and leads to better outcomes. Caregivers must learn and believe that consistently trying to understand the needs of the person they are caring for will make their job easier. Good communication takes into account a person’s ability to comprehend, their sensory abilities, and their culture.
In the home setting, communication may be easier because the environment is familiar with fewer distractions although caregivers are often alone and cannot turn to a co-worker for help. No matter what setting, a calm tone, short direct sentences, a slow rate of speech, and patience encourages independence in people with dementia.
Clara is a 96-year old, Caucasian woman with severe macular degeneration, significant hearing loss, and moderate to severe dementia. Her caregiver has a thick accent and doesn’t understand that Clara can’t hear her and often can’t understand what she’s trying to say. The caregiver sometimes forgets to give Clara her hearing aids, sometimes puts the hearing aids in with dead batteries, leaves the TV on when trying to talk to Clara, and speaks in long, complicated, thickly accented sentences. She uses phrases and words that are completely unfamiliar to Clara. For example, when the caregiver wanted Clara to wipe herself after she finished urinating she asked Clara to “wipe her jewel.” Clara had no idea what she was talking about. Clara always tries to respond to her caregiver, even when it’s clear she has no idea what she’s being asked to do. Because Clara responds, the caregiver swears Clara understands her and is just being stubborn when Clara doesn’t do what’s asked.
ADL “skills training” is recommended for all caregivers—both family and professional. Emphasis is on encouraging independence in all activities while providing appropriate assistance when needed. ADL skills training promotes involvement in self-care, minimizes caregiver stress, and reduces the amount of physical labor required of a caregiver.
A skilled caregiver learns to continually assess the strengths, comprehension, and capabilities of the person they are caring for. More or less assistance may be needed depending on the task, the time of day, co-morbidities, and level and type of dementia. For example, a person who is otherwise capable of independent self-care tasks but has poor balance might need help setting up a place to safely brush her teeth and do other grooming. If forced to stand during these activities, the person will likely need more help from the caregiver than is needed if a suitable sitting area is arranged.
Caregiver skill training provides caregivers with information, strategies, and tools to develop an individualized program that provides just the right amount of assistance. This might involve gestures, verbal and visual cues, assistive devices, planning and problem solving, and physical assistance.
Planning an activity for someone with dementia must take into account their abilities and interests, which promotes success and leads to a wider range of activities. Well-planned activities will naturally arise from a careful assessment of a person’s lifestyle, occupation, interests, and preferences. For example, a person who loved to go for hikes but can no longer walk will still enjoy going for a drive or visiting a park with paths that accommodate wheelchairs. That same person may not enjoy sitting in front of a television tuned to a game show.
Assistive technologies—devices designed to enable people with a disability to function more independently—have been developed to support people with dementia and their caregivers. Assistive technologies focus on safety and social participation. They are different than assistive devices, which aid with mobility and physical activities of daily living.
Examples of assistive technologies include:
Assistive technologies can reduce the cost of care, decrease caregiver burden, promote independence and autonomy, and increase quality life for people with dementia. They may also promote aging in place, delay transfer into a care facility, and help people with dementia maintain independence (Czarnuch et al., 2016).
Adaptive aids are devices and equipment designed to assist a person with daily activities such as mobility, transfers, dressing and grooming, bathing, and eating. They can help individuals with disabilities compensate for lost functions, increase their independence, and develop their potential (Yeung et al., 2016). The selection of an adaptive aid or device depends on the person’s level of dementia, preferences and lifestyle, and physical abilities.
Adaptive aids include:
Conventional exercise programs such as walking, resistance training, and seated exercises that focus on improving aerobic endurance, strength, balance, and flexibility have beneficial effects on physical function in individuals with cognitive impairment and dementia. Exercise improves the ability to perform basic activities of daily living such as eating, dressing, bathing, using the toilet, and transferring from bed to chair (Barnes et al., 2015).
Environments that are dementia friendly and safe promote independence and physical activity. This can include developing environments that are safe to walk around and navigate, environments that are not confusing, and policies that limit unneeded moves from one facility or area to another (Handley et al., 2015).
Care techniques are the skills needed by the caregiver for monitoring, assisting, and providing total care in dressing, grooming, eating, bathing, or toileting and incontinence.
As with other activities of daily living, people with dementia often need time to dress and groom. The caregiver must assess the person they are caring for to determine the amount of help needed, must be patient, and must resist jumping in to help if no help is needed. Depending on the severity of the dementia and co-morbidities such as visual and perceptual changes, balance, and strength—even the time of day—caregivers must train themselves to encourage as much independence as possible.
For example, Clara, mentioned in the case example earlier in this section has severe macular degeneration and fairly severe dementia. But she is very flexible and fairly strong. When she’s sitting in a chair with proper back support she can easily bring her knee up to her chest. However, she can’t see where to place her leg when she tries to put on her pants. It’s tempting to do everything for her but this increases caregiver burden and fails to promote Clara’s independence. In this case, the caregiver must be patient—help Clara lay out her clothes and provide verbal and appropriate touch cues to direct the activity.
The same is true for grooming. For mouth care and other grooming tasks, go step-by-step, providing a safe and comfortable place for grooming. For men, encourage the use of an electric razor and for both men and women, encourage regular visits to the beauty or barber shop.
Interventions to support older people around eating and drinking vary: changing the color of a plate, increasing exercise, altering the environment or changing knowledge or attitudes. Some interventions alter food and drink directly via oral nutrition supplementation, food modification, dysphagia management, eating assistance or supporting the social element of eating and drinking. Other interventions such as altering the dining environment, providing education and training for people with dementia and their caregivers, behavioral interventions, and exercise programs affect food and drink intake or experience indirectly (Bunn et al, 2016).
Assistive or adaptive tableware have been a mainstay in nursing homes and assisted living facilities for many years. Unfortunately, most assistive tableware lacks aesthetic appeal. Since people have different needs and abilities, and assistive tableware stands out from standard items, users of assistive table settings may feel stigmatized.
A common strategy as dementia advances and feeding difficulties develop is to simplify eating by providing just a plate and spoon with pureed or diced food that can be eaten without needing to be cut up by the resident. The plate should have a high lip that helps to push the food onto the spoon as a person tries to scoop it up.
The slanted bottom hip lip of the plate can help users to gather food on one side without scooping. Spoon heads are designed to match the curvature of the bowls to pick up the food easier. Designed by Sha Yao, Eatwell.com. Used with permission.
Well-designed assistive tableware can be used by people of all abilities and should resemble standard domestic tableware. Color contrasts should feature prominently—for example royal blue plates provide a contrast both with a white table covering and food on a plate. The same approach can be used with cups; for example, royal blue and white can be used to help those with low visual acuity or agnosia locate the handle and rim. The sides of the cup should be angled to reduce the need to tip the cup, a large handle will assure a good grip, and the top should be wide enough to allow a person’s nose to fit inside the cup when tipped.
A cup with a weighted bottom is shown on the left. A cup with an easy-to-grip handle is shown on the right. Designed by Sha Yao, Eatwell.com. Used with permission.
Interventions that have shown particular promise include: eating meals with caregivers, family style meals, soothing mealtime music, constantly accessible snacks, longer mealtimes, education and support for formal and informal caregivers, Montessori activities, facilitated breakfast clubs, and multisensory exercise. More research is needed to help understand what types of interventions are effective in supporting adults with dementia to eat and drink well, and to remain actively engaged with food and drink (Bunn et al, 2016).
Throughout our lives, bathing is a private, independent, and personal experience. For someone with dementia, having another person help with bathing can be uncomfortable and even threatening. Success depends on a caregiver’s ability to help the person they are caring for feel a sense of control and independence. This is accomplished by including the person is the bathing decision, encouraging independence, protecting the person’s privacy and dignity, and practicing flexibility.
Prepare for bathing by making sure the environment is safe and comfortable. Bathing supplies should be within reach and the water pre-heated to the proper temperature. Grab bars should be available as well as non-skid mats.
During bathing, techniques that comfort and reassure a person with dementia include:
Incontinence is the involuntary leaking of urine or feces or both. For people with dementia living at home, incontinence can be embarrassing and stigmatizing. Incontinence adds to caregiver stress and depression and is a factor in the decision to admit a family member to a care home.
A number of issues are related to toileting and incontinence in people with dementia. Some are the result of the loss of cognition and memory, some from behavioral and psychological symptoms and some from the interplay of these with other comorbidities. Over-medicating with laxatives (sometimes without the knowledge of the caregiver) can be a problem. Toileting and incontinence issues can include:
Techniques and strategies used by caregivers to manage toileting and incontinence in a person with dementia typically start with reminders to go to the toilet on a regular basis. As dementia progresses, other techniques are needed such as adult diapers, bedside commodes, and direct help from the caregiver.
To make it easier for a person with dementia to find and use the toilet:
Keep in mind that incontinence can be related to a medical problem such as urinary tract infection, constipation or prostate problems. Incontinence is also associated with diabetes, stroke, Parkinson’s disease and physical disabilities that prevent the person from reaching the bathroom in time. Medications and diuretics (drugs that increase urination) can also cause incontinence. This includes sleeping pills, anxiety-reducing drugs that may relax the bladder muscles, and drinks such as cola, coffee and tea (Alzheimer’s Association, 2016c).
Family caregivers of people with dementia are often called the invisible second patients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship.
Henry Brodaty and Marika Donkin
Prince of Wales Hospital, Sydney, Australia
All over the world, the family is the cornerstone of care for older people who have lost the capacity for independent living. In four of the most populous states alone (Florida, California, New York, and Texas), unpaid caregivers annually provide care valued at more than $14 billion (Alzheimer’s Association, 2016a).
In many developed countries, the vital caring role of families and their need for support is often overlooked. In developing countries, the reliability and universality of the family care system is often overestimated. Family caregivers are often cast into the role of caregiver unexpectedly and are largely unpaid or “nearly” unpaid. Currently, about half of people who need help with personal care have dementia (ADI, 2013).
For me, taking care of my own health and well-being took a nose dive as my mom’s dementia got worse. As we near the end of her life my sister and I are drained emotionally and financially, hobbies are a distant memory, friends have been neglected, and some family relationships have been damaged beyond repair. Until we have a national program to provide training, oversight, and money for caregivers, I don’t see things changing very much.
Family Caregiver, California
Caring for a person with dementia is a huge commitment and places both financial and physical strain on family caregivers. On average, caregivers spend 14 hours per week assisting with basic ADLs and up to 43 hours per week when more complex assistance and supervision are needed (ADI, 2013). For family caregivers, good care can break down quickly if caregivers fail to get enough sleep, do not take care of their own medical needs, or do not seek out support and training.
Not surprisingly, caregivers of people with dementia provide care for a longer time, on average, than caregivers of older adults with other conditions. They are more likely than caregivers of people without dementia to provide help with self-care and mobility and health or medical care. Yet half of caregivers of people with dementia indicate they have no experience performing medical/nursing tasks (Alzheimer’s Association, 2016a).
Caring for a person with dementia also means managing symptoms that caregivers of people with other diseases may not face, such as neuropsychiatric symptoms (for example, anxiety, apathy and lack of inhibition) and severe behavioral problems. Family caregivers often lack the information or resources necessary to manage the increasingly complex medication regimens for people with dementia (Alzheimer’s Association, 2016a).
In the early stage of dementia, family members are confronted with many issues, worries, and concerns and must adjust their own behavior and manage their own frustrations as they learn about the effects of dementia. They are often unaware of available dementia-care services and may find their family member’s primary care physician is of little help.
Spouses who care for a person with dementia may not be in good health themselves and may worry about not being able to provide good care as the dementia progresses. An adult child caregiver will be concerned about having to take over the care of the parent and assume a new role in the family.
Nevertheless, caregiver burden is usually manageable in the early stages of dementia. Direct care is generally not needed and caregivers can often leave their family member alone for periods of time.
Early, specialized training is recommended for informal caregivers. This is an essential but often neglected component of dementia care. Training can prepare family caregivers for what lies ahead and allow them to more easily partner with healthcare providers to provide competent and compassionate care.
In the middle stages, behavioral and psychological problems may arise, requiring complicated decisions about behavioral interventions and, perhaps, medications. Family caregivers often have to cut back on employment as the demands of caregiving increase.
As the dementia progresses from the mild to moderate stage, caregivers begin to invest more time, energy, and money, which involve exhausting tasks leading to high levels of burnout. Depression, along with symptoms of burnout, poor self-rated health, highly perceived stress, and lower levels of life satisfaction are factors that begin to affect the caregiver’s health. Family caregivers are also less likely to engage in preventive health behaviors. As a consequence, they are at risk for serious illness, increased emergency department use and hospitalization, and increased risk of mortality (Lykens et al., 2014).
Family caregivers’ cumulative stress is also associated with increased nursing home placement, institutionalization, or hospitalization of the patient with dementia. Thus, caring for a patient with dementia can undermine the health and well-being of both the patient and the caregiver (Lykens et al., 2014).
In the late stages, as people lose the ability to talk clearly, family caregivers will struggle to find new ways to communicate as their loved one uses fewer and fewer words. Caregivers must learn to interpret facial expressions for sadness, anger, or frustration, and physical gestures such as grasping at undergarments, which may communicate the need to use the bathroom.
The demands of caregiving intensify as people with dementia approach the end of life. In the year before the person’s death, 59 percent of caregivers felt they were “on duty” 24 hours a day, and many felt that caregiving during this time was extremely stressful. One study of end-of-life care found that 72 percent of family caregivers experienced relief when the person with Alzheimer’s disease or another dementia died (Alzheimer’s Association, 2016a).
One of the most difficult issues—usually in the middle to late stages of dementia—is the decision to place a family member in residential care or skilled nursing. There are a number of reasons cited by caregivers for placement:
Relinquishing full-time care can cause feelings of loss, sadness, resignation, and depression for family caregivers. Paradoxically, placement of a loved one in a care facility may do little to alleviate the stress that caregivers experience.
Once a family member has moved to a care facility, family caregivers must begin learning to navigate a complicated healthcare system. Healthcare workers can support family members by determining the preferences, abilities, and resources of each family member. Regular face-to-face meetings with family members and facility staff will help families work through difficult conflicts.
I’m ashamed to say that before I began taking care of my own mother, I had very little understanding of the pressure and grief experienced by family members caring for someone with dementia. I only offered platitudes such as “make sure you walk with your wife every day”—this when the husband was slumped at the kitchen table, clearly overwhelmed and severely depressed. I just didn’t see it. Now I do.
Home Health Physical Therapist, California
The diagnosis of dementia may result in a personal crisis in which the person with dementia displays grief reactions related to the experience of actual or anticipated losses associated with the dementia diagnosis (Vroomen et al., 2013). Family members also experience grief associated with the onset of dementia. Good support following the initial diagnosis helps people adapt to the diagnosis and provides opportunities to develop coping responses.
Grief can manifest itself in physical symptoms such as shortness of breath, headaches, fatigue, a feeling of heaviness, and a lack of energy. Psychological symptoms associated with grief include clinical depression, hypochondria, anxiety, insomnia, and the inability to get pleasure from normal daily activities. These issues can lead to self-destructive behaviors, such as alcohol or drug abuse.
Losses for the person experiencing dementia may include:
Losses for family members can include:
In the early stage, supportive interventions to address grief should include counseling, assessment of co-morbid conditions, information about dementia, caregiver training, and development of a care plan. In later stages, a person with severe dementia may need to be moved to a care home. This is a cause of grief and loss for the person with dementia and for the caregivers. People with dementia newly admitted to an institution are often disoriented and disorganized in their new environment and feel a loss of control over their lives (Vroomen et al., 2013).
When a loved one dies, family members, and especially spouses, experience a period of acute grief that generally includes intrusive (unwanted) thoughts,* intense emotional distress, and withdrawal from normal daily activities. This period, along with the chronic grief that follows, may vary in length and intensity from individual to individual and often resembles clinical depression (Monk et al., 2013).
When a spouse dies, about 28% of surviving spouses experience major depression. This risk of depression appears to peak during the first six months of bereavement, although depressive symptoms can be present for up to two years. Even bereaved persons with minor depression may suffer, for they have a greater likelihood of functional impairment, poorer health, more physician visits and mental health counseling, and increased use of antidepressants than do non-bereaved individuals (Monk et al., 2013).
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