10.1. INTRODUCTION TO PROVIDE CARE FOR CLIENTS EXPERIENCING ACUTE AND CHRONIC CONDITIONS

Many nursing assistants work in long-term care settings where residents live for assistance with chronic medical conditions. Chronic health conditions are health issues lasting more than six months and often require specialized interventions to maintain the individual’s highest possible level of health and functioning. Acute health conditions in long-term care settings are typically related to the resident’s rehabilitation process, an infection, or an injury.

Nursing assistants also work in hospital settings where patients with acute health conditions can experience rapid changes in their condition. These changes must be promptly communicated to the nurse so they can be addressed quickly. In this chapter you will learn how to meet the needs of residents with chronic conditions related to developmental disabilities, mental health disorders, and dementia. You will also be introduced to providing care for patients with acute conditions that require additional safety or behavioral interventions.

10.2. HISTORY OF CARE FOR INDIVIDUALS WITH MENTAL HEALTH DISORDERS AND DEVELOPMENTAL DISORDERS

In the past, individuals living with mental health disorders or developmental disorders were viewed as unable to be a part of general society and were often placed in large institutions with little to no access to the outside environment or the community. This unfortunate stigma was due to a vast misunderstanding of these diagnoses. We now know this misconception is detrimental to individuals, and legislative and societal changes have been made to better meet the needs of these individuals. As a health care professional, it is important to understand how you can continue to improve the quality of life in individuals with these diagnoses through your communication, awareness, and approach.

Historically, facilities for institutionalized individuals looked like the Willowbrook State School pictured in Figure 10.1.[1] Residents were typically cared for in large spaces and group settings and eating at long tables with little space for comfort. Often, residents slept in large rooms with several beds in close proximity to each other with no accommodations for privacy or noise reduction. This care environment often caused overstimulation, resulting in sleep disturbances and client behaviors that were difficult to manage. In contrast to current health care practices, individual preferences were not prioritized.

Figure 10.1

Willowbrook State School

These institutions lacked funding, professional caregivers, and basic knowledge of what residents needed to successfully function to the best of their ability. Because of these conditions, individuals with developmental or behavioral health disorders were often looked down upon, shunned, stigmatized, vilified, criminalized, and, in some cases, imprisoned or tortured. This type of inhumane treatment has been documented as far back as the Middle Ages in Europe and up until the mid-1900s in the United States.[2]

In the United States, this type of care environment continued until 1963 when President John F. Kennedy signed the Community Mental Health Act (as seen in Figure 10.2[3]). President Kennedy described this act as “a bold new approach” and provided federal grants to states to construct community mental health centers (CMHC). This act aimed to improve the diagnosis, treatment, and delivery of mental health services to individuals and prevent acute episodes that could impact their safety. In 1965 federal funding was allocated by the Medicaid Act to statewide institutions to improve conditions, staff education, and treatment of residents.[4]

Figure 10.2

President John F. Kennedy Signing the Community Mental Health Act

The Community Mental Health Act resulted in a mass “deinstitutionalization” across the country, and by 1980 the population of psychiatric hospitals had decreased by nearly 75%. Deinstitutionalization meant that individuals with behavioral and developmental disorders were cared for in group home settings that allowed for community involvement rather than being isolated in a facility with little or no interaction with general society. By 2009 less than 2% of individuals with mental health disorders lived in a large institution, thus greatly increasing their quality of life, attention to their individualized needs and preferences, and their ability to be active in the community.[5]

Additional consideration has also been given to school-aged children and adolescents with developmental disorders and disabilities to be educated in a mainstream environment. In 1975 the Education of Handicapped Children Act was passed to support special education and related service programming for children and youth with disabilities in public schools. This act mandated that everyone with an intellectual disability was granted equal access to a free education. It was renamed the Individuals with Disabilities Education Act (IDEA) in 1990. In 2010 President Barack Obama signed “Rosa’s Law,” which eliminated the term “mental retardation” and replaced it with “intellectual disability.” Deleting this term from legislation helped to change the negative stigma associated with disabilities.

Read the following PDF about Rosa’s Law.

The remaining sections of this chapter will describe common developmental disorders, mental health disorders, and dementias you may encounter as a caregiver.[6]

10.3. CARING FOR CLIENTS WITH DEVELOPMENTAL DISORDERS

Developmental disorders, also referred to as “intellectual disabilities,” are caused by impairments in the brain or central nervous system. These impairments result from problems that occurred during fetal development or injuries sustained during birth or early infancy, such as cerebral palsy and autism. Other disorders, such as Down syndrome, have a genetic cause.[1]

These impairments can impact mobility, problem-solving, planning, abstract thinking, judgment, academic learning, and learning from experience. Individuals with developmental disorders often function at a lower developmental stage than the average person of the same chronological age.[2]

Refer to the Chapter 1.4, “Human Needs and Developmental Stages” section to review “Erikson’s Stages of Development” and what is expected at each stage.

Intellectual disabilities are diagnosed by health care providers based on two major criteria[3]:

• The ability to learn, think, solve problems, and make sense of the world, referred to as intellectual functioning or Intelligence Quotient (IQ).
• The skills and abilities to live independently, referred to as adaptive behavior or adaptive functioning.

Intellectual functioning is typically measured by a standardized IQ test. The average score of an IQ test is 100. People scoring below 70 to 75 are thought to have an intellectual disability.

To measure adaptive behavior, professionals look at what an individual can do in comparison to other individuals their age. Skills important for adaptive behavior include the following[4]:

• Daily living skills, such as getting dressed, going to the bathroom, and feeding oneself
• Communication skills, such as understanding what is said and being able to answer
• Social skills with peers, family members, adults, and others

Adaptive behavior is much more about how a person manages in daily life and their ability to do the things that are expected of their age within their culture. Without ongoing support, deficits in adaptive behavior limit an individual’s functioning in many areas such as communication, social participation, and independent living at home, school, work, or in the community. A person without adequate adaptive behaviors requires caregivers and other types of resources depending on their level of impairment. As a nursing assistant, you may be providing most of their needed support.

Levels of severity of intellectual disability and associated care needs can be categorized into mild, moderate, severe, and profound. It is important for nursing assistants to know what can be expected and how to care for individuals with these levels of disabilities[5]:

• Mild Intellectual Disabilities: In very young children with mild intellectual disabilities, there may be no obvious problems, but as they enter school, they often demonstrate difficulties in academic skills. As they become adults, abstract thinking and short-term memory are reduced, and communication is more immature than expected for their age. They may have difficulties regulating their emotions or have impaired social judgment, which puts them at risk of being manipulated by others. The individual may be independent with their activities of daily living (ADLs) and personal hygiene needs but requires support with shopping, cooking, housekeeping, and managing money. They may require assistance in finding appropriate leisure activities, as well as making health care decisions and legal decisions. Individuals with mild disabilities may be employed in jobs that don’t require much decision-making.[6]
• Moderate Intellectual Disabilities: The conceptual skills of individuals with moderate intellectual disability can be observed because they are behind in development compared to their peers. For school-aged children, their academic achievement is limited, and their learning progress is slow in all areas compared to their peers. As they become adults, their academic skills typically remain at a primary school level. They rely on spoken words for communication and are often unable to understand written instructions. They develop personal relationships, although they may not perceive or interpret social cues accurately. Social judgment and decision-making abilities are limited, and appointed caregivers must assist them with important life decisions. An individual with moderate intellectual disabilities can achieve most of their ADLs if given appropriate time, verbal cues, and supervision to ensure they complete all personal hygiene needs. Similar guidance is needed for other household and life skills. Employment requires considerable support from coworkers and supervisors. Disruptive behaviors may be present that cause socialization problems.[7]
• Severe Intellectual Disabilities: Individuals with severe intellectual disabilities typically have little understanding of written language or concepts involving numbers, quantities, time, and money. Caregivers must plan extensive support for problem-solving throughout the individual’s life because they are unable to make decisions regarding their well-being. Spoken language is limited in vocabulary and may be single words or phrases possibly supplemented by gestures, signs, or pictures. Communication tends to be focused on the here and now within everyday events. Relationships with family members, friends, and familiar others (like caregivers) are a great source of pleasure and help. Individuals require support for all ADLs and supervision at all times. Some individuals may demonstrate disruptive behaviors that are challenging for family members to manage.[8]
• Profound Intellectual Disabilities: Individuals with profound intellectual disabilities have very limited conceptual skills and at best can understand concrete objects but not symbols such as pictures or words. They can learn skills such as matching and sorting based on physical characteristics and may use objects for specific purposes such as self-care and recreation. They may understand some simple instructions with gestures and often express their desires and emotions through nonverbal, nonsymbolic communication. They enjoy relationships with well-known family members, caregivers, and familiar others and can initiate and respond to social interactions through gestural and emotional cues. However, sensory and physical impairments limit the amount and quality of social interaction, so extensive support may be required to ensure that social interaction occurs. They are dependent on others for all aspects of their care, health, and safety. If there are no physical impairments, they can assist with simple chores around the home such as putting dishes away. With support, it is possible to engage them in vocational tasks that depend on simple actions with objects. Recreational activities may involve listening to music, watching movies, going for walks, or water activities, all with the support of others. Without support, they often spend a lot of time just watching others. They may demonstrate disruptive behaviors.[9]

Individuals with developmental disabilities generally have few physical limitations. The majority of their care needs are based on supervised decision-making and ensuring safety needs are met. Because these impairments begin at a young age, caregivers must provide opportunities for individuals with developmental disabilities to be as independent as possible and integrated into everyday life. This philosophy is reflected in the legislative acts previously discussed in the “History of Care for Individuals With Mental Health Disorders and Developmental Disorders” section, with individuals having developmental disorders placed in small, community-based group homes if their care is unable to be managed by family members in their homes.

Down Syndrome

Nursing assistants may help support individuals with a common developmental disorder called Down syndrome. People with Down syndrome typically experience mild to moderate severity levels of intellectual disability with associated adaptive behaviors regarding daily life activities as previously described. Individuals with Down syndrome also have common physical characteristics based on its genetic cause related to an excess 21st chromosome.

Chromosomes can be thought of as small packages of genes in the body that determine how a baby forms as it develops during pregnancy and functions after birth. Typically, a baby is born with 46 chromosomes. However, babies with Down syndrome have an extra copy of Chromosome 21. The medical term for having an extra copy of a chromosome is trisomy, so Down syndrome is also referred to as “Trisomy 21.” This extra 21st chromosome causes common physical features for individuals with Down syndrome as seen in Figures 10.3[10] and 10.4.[11]

Figure 10.3

Infant With Down Syndrome

Figure 10.4

School-Aged Child With Down Syndrome

Common physical features of individuals with Down syndrome include the following[12]:

• A flattened face, especially the bridge of the nose
• Almond-shaped eyes that slant up
• A short neck
• Small ears
• A tongue that tends to stick out of the mouth
• Tiny white spots on the iris (colored part) of the eye
• Small hands and feet
• A single line across the palm of the hand (palmar crease)
• Small fifth fingers that sometimes curve toward the thumb
• Poor muscle tone or loose joints
• Shorter height as children and adults

Most people with Down syndrome have common facial features but no other major birth defects. However, some people with Down syndrome have other major birth defects and an increased risk of medical problems such as heart or thyroid disease. Common health problems associated with Down syndrome are as follows[13]:

• Hearing loss
• Obstructive sleep apnea (breathing temporarily stops while asleep)
• Ear infections
• Eye diseases
• Heart defects present at birth

Individuals with Down syndrome typically enjoy socialization and being part of a group, and finding ways to give them recognition for their achievements is important. For example, during school years, activities like helping with athletic teams are often enjoyable. After high school, employment provides feelings of self-esteem and achievement. Because these individuals thrive on encouragement, allowing them the opportunity to be as independent as possible and achieve their personal goals greatly increases their quality of life. Independence can range from completing ADLs independently, completing school coursework, or gaining skills from a job.

Autism Spectrum Disorders (ASD)

Nursing assistants may help care for individuals with an autism spectrum disorder (ASD). As the word spectrum infers, there is a wide range of potential behavioral patterns associated with autism. In contrast with other developmental disorders, individuals with autism can be extremely intelligent. Autism causes individuals to process environmental stimuli and social interactions in a different way. Sensory stimulation such as lights, sounds, odors, or crowds can cause individuals with ASD to fidget, call out, or repeat movements that can be perceived by others as outside the social norm. The media often portrays individuals with autism as having altered social awareness or the inability to show emotion or empathy. Actual behaviors associated with ASD are outlined in the following subsections.

Social Communication

Individuals with autism often have altered social communication with others that becomes apparent early in childhood. Infants with ASD show less attention to social stimuli, smile and look at others less frequently, and have a decreased response to their name. Toddlers with ASD may demonstrate less eye contact and taking turns with others and may not have the ability to use simple movements to express themselves. Individuals with severe forms of ASD do not develop enough speech ability to meet their daily communication needs with others.[14]

Restricted and Repetitive Behaviors

Children with ASD may exhibit repetitive or restricted behaviors, including the following[15]:

• Stereotypic: Repetitive movements, such as hand flapping, head rolling, or body rocking.
• Compulsive behavior: Repetitive acts characterized by the feeling that one “has to” perform them, such as arranging objects in stacks or parallel lines.
• Resistance to change: Preference for an unvarying pattern of daily activities, such as insisting that the furniture not be moved.
• Restricted behavior: Limited focus, interest, or activities, such as preoccupation with a single television program, toy, or game.
• Self-injury: Movements that can cause the person to hurt themselves, such as eye poking, skin picking, hand biting, and head banging.

Figure 10.5[16] further explains three functional levels of ASD from the perspective of someone with autism.

Figure 10.5

Three Functional Levels of Autism

View the following YouTube video to learn more about how individuals with autism experience daily life:[17]: What It’s Really Like to Have Autism | Ethan Lisi.

10.4. CARING FOR CLIENTS WITH MENTAL HEALTH OR SUBSTANCE USE DISORDERS

Nursing assistants provide care for individuals with mental health disorders in many settings. According to the National Alliance on Mental Illness (NAMI), approximately 1 in 5 adults in the United States experiences some type of mental health disorder. In the United States, this means that over 43 million people experience a mental health disorder within any given year. Among individuals who experience a mental health disorder, 9.8 million experience a severe mental health disorder, meaning it dramatically interferes or limits their ability to function in everyday life. However, of all the adults in the United States with a mental health disorder, research shows that only 41% received mental health services in the past year, and for those diagnosed with a severe mental health disorder, only 63% received treatment or services. These numbers demonstrate the need to identify and provide effective treatment to individuals living with these disorders.[1]

Just as there are various physical illnesses with varying degrees of severity, there are also various mental health illnesses with varying degrees of severity. Symptoms of mental health disorders can often be managed with medications, in a similar way that physical illnesses like diabetes are managed with insulin and other medications. By helping individuals with mental health disorders manage their medications and attend psychotherapy and/or counseling sessions, caregivers can help individuals with mental health disorders stabilize their emotions and behaviors and reach their greatest potential in their life.

Being aware of common mental health disorders will allow you, as a caregiver, to understand what the person is experiencing and how to help them meet their needs in the best possible way. While every case is different, it is important to be aware of how individuals with mental health disorders may present themselves and start thinking about how you will help manage related symptoms and behaviors.[2]

There are several categories of mental health disorders diagnosed by mental health providers such as a psychiatrist, psychologist, or advanced practice nurse practitioner. This section will further describe these common mental health disorders:

• Anxiety Disorders
• Psychotic Disorders
• Bipolar Disorder
• Depressive Disorders
• Trauma Disorders
• Personality Disorders
• Substance Use Disorder

10.5. CARING FOR CLIENTS WITH DEMENTIA

Dementia is a general term for loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life. Disorders grouped under the general term “dementia” are caused by abnormal brain changes. These changes in brain cells affect their communication with each other, affecting a person’s thinking (i.e., cognitive abilities), behaviors, and feelings. There are many types of dementia. Alzheimer’s disease is the most common type of dementia. Vascular dementia is the second most common cause of dementia, followed by frontal-temporal dementia and Lewy body disease. While there are various causes of dementia, the observable characteristics are similar.[1]

Signs and symptoms of dementia include forgetfulness, impaired decision-making, and decreased thinking abilities that interfere with daily living. It is gradual and progressive, meaning the signs of dementia start out slowly and gradually get worse over time. Some examples of decreased thinking include changes in the ability to perform the following actions[2]:

• Recalling things from short-term memory
• Keeping track of a purse or wallet
• Paying bills
• Planning and preparing meals
• Remembering appointments
• Traveling out of the neighborhood

Dementia typically starts later in life, but it can begin as early as the mid-40s. It is not an expected part of aging. There is no cure for dementia, and the effects are irreversible. However, appropriate care improves the safety and the quality of life for individuals affected by dementia and their loved ones.[3]

Types of Dementia

Various types of dementia are further described in the following subsections.

Alzheimer’s Disease

About 10% of people older than 65 are affected by Alzheimer’s disease (AD). AD is the most common type of dementia and accounts for 60-80% of cases. Changes in the brain may begin a decade or more before impaired short-term memory and other cognitive problems appear, and the brain’s functioning continues to decline over time.

Scientists continue to unravel the complex brain changes involved in the onset and progression of AD. Abnormal deposits of proteins occur throughout the brain and form structures called amyloid plaques and tau tangles, causing previously healthy nerve cells (neurons) to stop functioning, lose connections with other neurons, and die. The damage initially appears to take place in the hippocampus and the cortex, the parts of the brain that are essential for forming memories. As additional neurons die, more parts of the brain are affected and begin to shrink. By the final stage of AD, damage is widespread, and brain tissue has shrunk significantly.[4] See Figure 10.6[5] for images comparing a healthy brain to the changes that occur during AD.

Figure 10.6

Changes in Neurons and the Brain Caused by Alzheimer’s Disease

There is no single diagnostic test that can determine if a person has AD. Health care providers use a patient’s medical history, mental status tests, physical and neurological exams, and diagnostic tests to diagnose AD and other types of dementia. During the neurological exam, reflexes, coordination, muscle tone and strength, eye movement, speech, and sensation are tested. While there is no cure for AD, there are medications to reduce progression of the symptoms of memory loss and confusion, as well as interventions to manage common symptomatic behaviors.[6]

Vascular Dementia

Vascular dementia occurs at a younger age than Alzheimer’s disease with most symptoms starting around age 60. Vascular dementia is the second most common type of dementia worldwide and affects about 10-20% of patients with dementia. It is caused by microscopic bleeding and blood vessel blockage in the brain and is also called multi-infarct dementia. High blood pressure and strokes are common causes of vascular dementia.

The onset of vascular dementia is typically abrupt and followed by a rapid decline in functioning, in comparison to the slow progression of Alzheimer’s disease. Common symptoms in vascular dementia include apraxia and agnosia. Apraxia is the impaired ability to carry out motor activities despite intact motor function. This means the person can understand instructions and has the ability to complete an action but cannot process the cue to actually perform the task. Agnosia is the failure to recognize or identify objects despite intact sensory function.[7]

Lewy Body Dementia

Lewy body dementia (LBD) affects approximately 10 to 20% of patients with dementia. Like Alzheimer’s disease, LBD causes a progressive decline in cognition, leading to a functional impairment in daily activities. This type of dementia typically appears around age 70, and Parkinson’s disease and sleep disorders are often precursors to being diagnosed with LBD.

Significant features of LBD are fluctuating cognition, visual hallucinations, and sleep disturbances that affect motor and psychiatric functioning. These factors increase the risk of falls, infection, and malnutrition. Individuals with LBD frequently have aggressive behaviors. Medications used for treating dementia are less effective for LBD and often result in more adverse side effects than with other types of dementia.[8]

Frontotemporal Dementia

Frontotemporal dementia (FTD) is caused by degeneration of neurons in the frontal and anterior temporal lobes of the brain. In patients older than 65 years, it is the third most common cause of dementia. For individuals younger than 65 years, it is the second most common cause of early-onset dementia and commonly affects patients ranging from 45 to 65 years of age.

Genetics plays a key role in the development of FTD with approximately 40% of cases familial in origin. Head trauma and thyroid disease have also been linked to the development of FTD. Individuals who have experienced head trauma are three times more likely to develop FTD, and individuals with thyroid disease are over twice as likely to develop this type of dementia.

FTD targets brain areas that are responsible for personality, behavior, language learning, motivation, abstract thinking, and executive function. Behavior changes and/or language difficulties are common symptoms, followed by loss of cognitive abilities and executive functioning like planning, organizing, and self-control.[9]

Caring for Individuals With Dementia

As dementia progresses and cognition continues to deteriorate, care must be individualized to meet the needs of the patient and family. Providing patient safety and maintaining quality of life while meeting physical and psychosocial needs are important aspects of nursing care. Unsafe behaviors put individuals with dementia at increased risk for injury.[14]

Similar to those with intellectual disabilities, individuals with dementia can be very physically mobile. Their decreased awareness of safety paired with good physical mobility means they require constant oversight as the disease progresses. Disruptive behaviors often occur due to the patient having a need or emotion without the ability to express it due to the changes in their brain. These needs may be untreated pain, hunger, anxiety, or the need to use the bathroom. Without the ability to communicate these needs, the individual may display agitation, aggression, shouting, combativeness, and many other behaviors that can be distressing for all involved. The patient’s family members and caregivers require education and support to recognize that behaviors are a symptom of dementia and/or a communication of their needs rather than being upset with the caregiver. As a nursing assistant, the more familiar you are with a client, the easier it becomes to understand their behaviors and provide activities to keep their emotions stable while proactively meeting their care needs.[15]

Providing Validation Therapy

Caring for individuals with dementia can be difficult, especially for family members who have trouble understanding what is happening to their loved one. They may try to reorient the person to the present time and situation, which can be frustrating for a person with dementia because they are unable to process these cues.

One of the most effective methods used to assist people with dementia is called validation therapy, meaning you support the reality the person with dementia is experiencing and do not attempt to reorient them. Begin by determining what the person is perseverating on and figure out a way to satisfy their need or respond to their emotion. For example, if a person with dementia is perseverating on the need to catch an imagined bus, you can sit with them by a window and tell them you will have a conversation until the bus arrives. If they are looking for a child they recall from their past experiences, allow them to hold a doll or call the “child” they are looking for on the phone. After they feel their concerns are validated, it will be easier to redirect them to another activity and reduce their emotional response.

Remember that individuals with dementia still retain long-term memories, and these memories often provide comfort and ease anxiety. It is helpful to provide activities similar to those they formerly enjoyed or simulate situations that resemble their prior work or home environment. For example, if a person was a homemaker, allow them to fold laundry or towels. If they enjoyed working with their hands, provide nuts and bolts to put together and take apart. If they worked in an office, folding letters and placing them in envelopes may be helpful. Activities like sorting cards, doing simple crafts, or baking may also be enjoyable. In the early to moderate stages of dementia, ambulation, chair exercises, or range of motion exercises can help to utilize pent-up energy that can otherwise lead to agitation.

Keeping the environment similar to their previous home can also be a calming factor by helping them recognize where their room is and reducing wandering or the risk of entering a room that does not belong to them. Some care facilities paint the doorframe like the resident’s home, use plates and utensils from the resident’s kitchen, and bring furniture from their home as well.

The “Dementia Village” is an entire neighborhood in Holland, complete with movie theater, restaurants, and stores and all staffed with specialized dementia caregivers. The neighborhood is enclosed, allowing residents to walk on their own without the risk of wandering and getting lost or risking safety. View the following YouTube video about how this community is set up[16]: CNN’s World’s Untold Stories: Dementia Village.

Managing Sundowning

Sundowning refers to restlessness, agitation, irritability, or confusion that typically begins or worsens as daylight begins to fade and can continue into the night, making it difficult for patients with dementia to sleep. Being overtired can increase late-afternoon and early-evening restlessness. Tips to manage sundowning are as follows[17]:

• Take the resident outside or expose them to bright light in the morning to reset their circadian rhythm.
• Do not plan too many activities during the day. A full schedule can be overtiring.
• Make early evening a quiet time of day. Play soothing music or ask a family member or friend to call during this time.
• Close the curtains or blinds at dusk to minimize shadows and the confusion they may cause.
• Reduce noise, clutter, or the number of people in the room.
• Do not serve coffee, cola, or other drinks with caffeine late in the day.

Managing Aggressive Behaviors

Aggressive behaviors may be verbal or physical. They can occur suddenly, with no apparent reason, or result from a frustrating situation. While aggression can be hard to cope with, understanding this is a symptom of dementia and the person with dementia is not acting this way on purpose can help caregivers respond.[18] See Figure 10.7[19] for an image of a resident with dementia demonstrating aggressive verbal behavior.

Figure 10.7

A Resident Displaying Aggressive Verbal Behavior

There are many therapeutic methods for a nurse or caregiver to initially respond to aggressive behaviors displayed by a person with dementia as previously described in the “Caring for Clients With Mental Health or Substance Use Disorders” section:

• Communication
• Routine
• Empathy
• Redirect or reapproach

Aggression can be caused by many factors including physical discomfort, environmental factors, and poor communication. If a person with dementia becomes aggressive, consider what might be contributing to the change in behavior and address it.[20]

PHYSICAL DISCOMFORT

• Is the person able to let you know that they are experiencing physical pain? It is not uncommon for people with dementia to have urinary tract or other infections. Due to their loss of cognitive function, they are unable to articulate or identify the cause of physical discomfort and, therefore, may express it through physical aggression.
• Is the person tired because of inadequate rest or sleep?
• Is the person hungry or thirsty?
• Are medications causing side effects? Side effects are especially likely to occur when individuals are taking multiple medications for several health conditions.[21]

ENVIRONMENTAL FACTORS

• Is the person overstimulated by loud noises, an overactive environment, or physical clutter? Large crowds or being surrounded by unfamiliar people – even within one’s own home – can be overstimulating for a person with dementia.
• Does the person feel lost?
• What time of day is the person most alert? Most people function better during a certain time of day; typically, mornings are best. Consider the time of day when making appointments or scheduling activities. Choose a time when you know the person is most alert and best able to process new information or surroundings.[22]

POOR COMMUNICATION

• Are your instructions simple and easy to understand?
  • Use simple language.
  • Limit choices to one or two options. (Example: “Do you want to wear the blue shirt or the black shirt?”)
  • Be sure communication techniques take sensory deficits into consideration.
  • Try physically demonstrating instead of verbally instructing; use pictures or gestures.
• Are you asking too many questions or making too many statements at once? Give ample time to process and respond.
• Is the person picking up on your own stress or irritability? Take a moment for deep breathing or ask another caregiver to assist if available.[23]

OTHER TECHNIQUES

The following techniques are additional strategies that can be used with aggressive behavior[24]:

• Begin by trying to identify the immediate cause of the behavior. Think about what happened right before the reaction that may have triggered the behavior. Rule out pain as the cause of the behavior. Pain can trigger aggressive behavior for a person with dementia.
• Focus on the person’s feelings, not the facts. Look for the feelings behind the specific words or actions.
• Try not to get upset. Be positive and reassuring and speak slowly in a soft tone and seek help from another caregiver if needed.
• Limit distractions. Examine the person’s surroundings and adapt them to avoid future triggers.
• Implement a relaxing activity. Try music, massage, or exercise to help soothe the person.
• Shift the focus to another activity (redirect). The immediate situation or activity may have unintentionally caused the aggressive response, so try a different approach.
• Take a break if needed. If the person is in a safe environment and you are able, walk away and take a moment for emotions to cool.
• Ensure safety! Make sure you and the patient are safe. Be aware of movement of the patient’s hands and feet and protect yourself from being hit or kicked. Avoid potential strangulation hazards like retractable lanyards. If interventions do not successfully calm down an aggressive patient, seek assistance from other staff members. If it is an emergency situation, call 911 and be sure to tell the responders the person has dementia that is causing them to act aggressively.

Responding to a Person Having Hallucinations

When responding to a person experiencing hallucinations, be cautious. First, assess the situation and determine whether the hallucination is a problem for the person or for you. Is the hallucination upsetting? Is it leading the person to do something dangerous? Is the sight of an unfamiliar face causing the person to become frightened? If so, react calmly and quickly with reassuring words and a comforting touch. Do not argue with the person about what they see or hear. If the behavior is not dangerous, there may not be a need to intervene. Utilize aspects of validation therapy by doing the following[25]:

• Offer reassurance. Respond in a calm, supportive manner. You may want to respond with, “Don’t worry. I’m here. I’ll protect you. I’ll take care of you.” Gentle patting may turn the person’s attention toward you and reduce the hallucination.
• Acknowledge the feelings behind the hallucination and try to find out what the hallucination means to the individual. You might want to say, “It sounds as if you’re worried,” or “This must be frightening for you.”
• Use distractions. Suggest a walk or move to another room. Frightening hallucinations often subside in well-lit areas where other people are present. Try to turn the person’s attention to music, conversation, or activities they enjoy.
• Respond honestly. If the person asks you about a hallucination or delusion, be honest. For example, if they ask, “Do you see the spider on the wall?,” you can respond, “I know you see something, but I don’t see it.” This way you’re not denying what the person sees or hears and avoiding escalating their agitation.
• Modify the environment. Check for sounds that might be misinterpreted, such as noise from a television or an air conditioner. Look for lighting that casts shadows, reflections, or distortions on the surfaces of floors, walls, and furniture. Turn on lights to reduce shadows. Cover mirrors with a cloth or remove them if the person thinks they are looking at a stranger.

Managing Wandering

Wandering is the simple act of a person walking around with no purpose due to confusion regarding their location or environment. It can occur in any stage of dementia. Wandering can be unsafe if the person should not be ambulating independently or if they are attempting to leave home or a facility resulting in them becoming lost without supervision. It is especially risky during cold winter months when there is the potential for hypothermia because the person won’t realize their need for warm clothing or to return indoors.

Offering opportunities for exercise or other physical movement (like range of motion exercises) several times throughout the day can reduce the urgency for people to move about unsafely. If the person does not want to participate in physical movement, any engaging experiences such as sorting items, arts and crafts, baking, or folding clothes can help to keep residents safe.

A possible intervention for wandering is a device called a wanderguard. This device is a bracelet that has a tracking device. The wanderguard can be worn on the wrist or ankle. Some facilities place the wanderguard on a resident’s walker or wheelchair; however, by choosing either of these locations, the wanderguard is only effective when the resident is using that particular device. The wanderguard allows the location of the person wearing it to be monitored via an app on a phone or other device such as a tablet or laptop. Multiple wanderguards can be activated and monitored at the same time on one device. The wanderguard sounds an alarm when the wearer comes into close proximity with any exits such as elevators, doors, and windows. It may also initiate locking of doors and disabling of elevator buttons to assist in keeping residents safe. See Figure 10.8[26] for an image of a wanderguard placed on a resident’s wrist.

Figure 10.8

Wanderguard Bracelet. This image is included on the basis of Fair Use.

10.6. PROMOTING NUTRITIONAL INTAKE

When a client is unable to accurately process information, this can lead to problems with food and fluid intake. They may not understand the process any longer, or they may not be able to follow the commands of opening their mouth, chewing, or swallowing. General considerations for promoting food and fluid intake are discussed in the Chapter 5.7, “Assisting With Nutrition and Fluid Needs” section, and the Chapter 6.2, “Nutrition and Fluid Needs” section also discusses assisting individuals with dementia, developmental disorders, or mental health disorders. The therapeutic techniques of using good communication, displaying empathy, keeping a routine, and reapproaching can also be utilized.

Aspiration risk also increases as dementia worsens, so individuals with advanced dementia may require thickened liquids and mechanical soft or pureed texture diet orders to prevent aspiration risk. Tube feeding may be initiated according to the client’s preferences or at the discretion of their appointed power of attorney for health care.

There are several actions a nursing assistant can take to promote food intake. If the patient has difficulty with the motor skills of eating or drinking, determine if sensory deficits may be the issue. If the dining area is noisy, try moving them to a quieter area where it may be easier to hear prompts. Bringing the person near the area where food is prepared can increase their appetite by smelling the aromas of the meal. After the food is served, position the food in the client’s direct line of vision. Put a small amount of food on a spoon and hold it gently to the lips, allowing ample time for them to process the feeling and open their mouth. Multitextured foods like cereal in milk can contribute to confusion over whether to chew or swallow. It may take a long time for the person to swallow, or they may have difficulty swallowing. Remind the person to tuck their chin towards their chest to reduce aspiration risk and aid in swallowing. If the person is holding the food in their mouth, gently rub their neck over their throat because this often prompts them to swallow. People with dementia and some with developmental disabilities may “pocket” their food, meaning they keep it in their cheeks and don’t swallow it. You may have to use an oral swab after meals to be certain that there is no food left in their mouth.

It can be difficult to tell when a person is full if they have dementia or other communication deficits. When they stop taking in food during a meal and seem full, a good practice is to hold each type of food to their lips one more time to be sure they have had all they want to eat of each food choice. Do the same with fluids.

Documenting food and fluid intake is the same as is required for any resident, but if intake is very minimal, report this to the nurse. When a person exhibits changes in their appetite, is coughing or clearing their throat more frequently, or has trouble managing utensils, report these changes to the nurse so that a speech or occupational therapist can assess the resident. Check the dietary card or care plan so any assistive feeding devices can be utilized to keep the resident as independent as possible and interested in meals.

10.7. CAREGIVER ROLE STRAIN

Eighty-three percent of the assistance provided to people living with dementia in their homes in the United States comes from family members, friends, or other unpaid caregivers. Approximately one quarter of dementia caregivers are also “sandwich generation” caregivers, meaning that they are not only caring for an aging parent, but also providing care for children under age 18. Because of the 24/7 care required, caring for a loved one with dementia can take a devastating toll on caregivers. Compared with other caregivers for people without dementia, twice as many caregivers for people with dementia indicate substantial emotional, financial, and physical difficulties.[1] See Figure 10.9[2] of an image of a caregiver daughter caring for her mother with dementia.

Figure 10.9

Daughter Caregiver

Signs of caregiver role strain for family caregivers may include these behaviors or thoughts[3]:

• Denial about the disease and its effect on the person who has been diagnosed. For example, the caregiver might say, “I know Mom is going to get better.”
• Anxiety about the future and facing another day. For example, the caregiver might say, “What happens when he needs more care than I can provide?”
• Sleeplessness caused by concerns. For example, the caregiver might say, “What if she wanders out of the house or falls and hurts herself?”
• Difficulties at work especially if the need for time off impact their job duties or the stress and fatigue from caregiving compromise their performance.
• Changes in relationships and roles. Some people find it challenging to assume responsibility for a family member’s needs as a caregiver while still in the role of a spouse or a daughter/son. These feelings can cause additional feelings of stress and grief.

Signs of caregiver role strain for family or paid caregivers may include the following[4]:

• Anger at the person with dementia or frustration that they can’t do the things they used to be able to do. For example, the caregiver might say, “He knows how to get dressed; he’s just being stubborn.”
• Social withdrawal from friends and activities. For example, the caregiver may say, “I don’t care about visiting with my friends anymore.”
• Depression or decreased ability to cope. For example, the caregiver might say, “I just don’t care anymore.”
• Exhaustion that makes it difficult for them to complete necessary daily tasks. For example, the caregiver might say, “I’m too tired to prepare meals.”
• Irritability, moodiness, or negative responses.
• Lack of concentration that makes it difficult to perform familiar tasks. For example, the caregiver might say, “I was so busy; I forgot my appointment.”
• Health problems that begin to take a mental and physical toll. For example, the caregiver might say, “I can’t remember the last time I felt good.”

There are resources available to assist home caregivers with dependent family members such as adult day care, respite care, or hospice care. Adult day centers offer people with dementia, developmental disorders, and other chronic mental health illnesses the opportunity to be social and to participate in activities in a safe environment, while also giving their caregivers the opportunity to work, run errands, or take a break. Respite care can be provided at home (by a volunteer or paid service) or in a care setting, such as adult day care or residential facility, to provide the caregiver a much-needed break. If the person with Alzheimer’s or other dementia prefers a communal living environment or requires more care than can be safely provided at home, a residential facility such as assisted living or long-term care may be the best option for meeting the individual’s needs. Different types of facilities provide different levels of care, depending on the person’s needs.[5] These varying levels were presented in the Chapter 2.6, “Health Care Settings” section.

Caregiver role strain can also occur when health care providers feel overwhelmed or unable to appropriately provide the care needed to manage the complex holistic needs of patients dependent upon them for their care. It can also be caused by working extended shifts, working several days in a row without time off, or from the daily repetition of managing clients with high care needs.

It may be difficult for you as a caregiver to recognize when you are feeling overwhelmed by the responsibility for providing care to many dependent people with high care needs. Although this is the foundation of being a competent and dependable caregiver, providing care when you are not at your best can be unsafe for both you and those you care for. Feelings of stress overload related to client care should be communicated with your supervisor. Working while experiencing these feelings can result in poor decision-making and possibly result in negligence in your care. Here are some things to do to help manage your work responsibilities and stay healthy:

• Get adequate sleep
• Eat a nutritious diet
• Get regular physical activity
• Rotate shifts, units, or clients as able
• Talk with a trusted support person or professional while following HIPAA guidelines
• Take time off as able
• Practice mindfulness, meditation, or yoga
• Get a massage
• Engage in enjoyable leisure activities

Just as you would report a change in behavior for a resident, you should treat yourself in the same manner. Knowing when you need a break or additional assistance is a responsible and professional action. As a coworker, recognize when other staff are experiencing caregiver role strain and offer assistance so they can take a break.

10.8. LEARNING ACTIVITIES

X. GLOSSARY

Adaptive behavior

The skills and abilities to live independently.

Agnosia

The failure to recognize or identify objects despite intact sensory function.

Anxiety

A universal human experience that includes feelings of apprehension, uneasiness, uncertainty, or dread resulting from a real or perceived threat.

Anxiety disorder

A condition diagnosed when an individual experiences more than temporary worry or fear that interferes with their daily functioning.

Apraxia

The impaired ability to carry out motor activities despite intact motor function. This means the person can understand instructions and has the ability to complete an action but cannot process the cue to actually perform the task.

Bipolar disorder

A condition that includes shifts in mood from abnormal highs (called manic episodes) to abnormal lows (i.e., depressive episodes) that cause significant impairment on the person’s functioning socially or at work.

Delirium

Psychosis caused by medical conditions or substance use that starts suddenly and is reversible by treating the cause of the delirium.

Delusions

Fixed, false beliefs held by a person even though there is concrete evidence they are not true.

Dementia

A general term for loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life. There are several types of dementia, including Alzheimer’s disease, vascular dementia, Lewy body dementia, and frontotemporal dementia.

Depressive episode

A condition where the person experiences a depressed mood (feeling sad, irritable, or empty) or a loss of pleasure or interest in activities they normally enjoy. Other symptoms may include poor concentration, feelings of excessive guilt or low self-worth, hopelessness about the future, thoughts about dying or suicide, disrupted sleep, changes in appetite or weight, and feeling especially tired.

Developmental disorders

Disorders caused by impairments in the brain or central nervous system due to problems that occurred during fetal development.

Hallucinations

A symptom of psychosis when someone perceives seeing, hearing, feeling, tasting, or smelling something that is not actually present. Some people are aware that their hallucinations are not real while others cannot separate their hallucinations from reality.

Manic episode

An elevated or irritable mood with abnormally increased energy that lasts at least one week.

Obstructive sleep apnea

A condition where one’s breathing temporarily stops while sleeping.

Panic attacks

Sudden periods of intense fear that come on quickly and reach their peak within minutes. Attacks can occur unexpectedly or can be brought on by a trigger, such as a feared object or situation. People experiencing a panic attack may exhibit symptoms such as sweating, trembling, shortness of breath, chest pain, nausea, increased heart rate, or feelings of losing control.

Perseverating

The act of repeating a task or thought over and over.

Personality disorder

A pattern of inner experiences and behaviors that deviates from the expectations of the individual’s culture.

Phobia

An intense fear of specific objects or situations (such as flying, heights, spiders, or social events).

Pocketing

The act of keeping food or medications in one’s cheeks and not swallowing it.

Psychosis

Conditions when a person experiences a loss of contact with reality and has difficulty understanding what is real and what is not real. Symptoms of psychosis include hallucinations and delusions.

Substance use disorder (SUD)

An illness caused by the repeated misuse of substances such as alcohol, caffeine, cannabis, hallucinogens, inhalants, opioids, sedatives, stimulants, or misuse of other prescription or over-the-counter medications. All these substances taken in excess have a common effect of intensely activating the reward system in the brain so much that normal life activities may be neglected.

Sundowning

Restlessness, agitation, irritability, or confusion that typically begins or worsens as daylight begins to fade and can continue into the night, making it difficult for patients with dementia to sleep.

Trauma

An event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life-threatening and can have lasting adverse effects on their functioning and mental, physical, social, emotional, or spiritual well-being.

Trisomy

A condition of having an extra copy of a chromosome.

Validation therapy

A technique used when caring with individuals with dementia that involves supporting the reality the person is experiencing.

Wandering

The simple act of a person walking around with no purpose due to their confusion regarding their location or environment.