Managing Challenging Behaviors¶

Summary¶

This chapter addresses the challenging behaviors commonly associated with dementia and provides strategies for understanding and managing them. You will learn about sundowning (increased confusion in late afternoon/evening), wandering, agitation, aggression, hallucinations, delusions, and repetitive behaviors. The chapter also covers sleep disturbances and catastrophic reactions (sudden emotional outbursts). Each behavior is explained in context of the underlying brain changes, helping caregivers respond with compassion and effective strategies rather than frustration. Understanding that these behaviors are symptoms of the disease, not intentional actions, is crucial for providing quality care.

Concepts Covered¶

This chapter covers the following 9 concepts from the learning graph:

Sundowning
Wandering
Agitation
Aggression
Hallucinations
Delusions
Repetitive Behaviors
Sleep Disturbances
Catastrophic Reactions

Prerequisites¶

This chapter builds on concepts from:

Understanding Challenging Behaviors: Symptoms, Not Choices¶

Perhaps no aspect of dementia caregiving is more stressful than managing challenging behaviors. When someone with dementia becomes agitated, aggressive, or experiences hallucinations, family members often feel bewildered, frustrated, and even frightened. The person they love may seem transformed into someone unrecognizable—shouting at imagined threats, wandering away from home, or becoming combative during routine care.

The single most important principle to understand is this: Challenging behaviors are symptoms of brain disease, not character flaws or intentional actions. The person with dementia is not "being difficult," "manipulating you," or "doing this on purpose." Their damaged brain is producing these behaviors, just as a damaged liver produces jaundice or damaged lungs produce shortness of breath. This neurological understanding transforms how we respond—from frustration and blame to compassion and problem-solving.

The ABCs of Behavior Analysis¶

Understanding challenging behaviors requires detective work. Each behavior has a context and often a trigger. Behavior specialists use a simple framework called the ABCs:

Antecedent - What happened immediately before the behavior? What triggered it?
Behavior - What exactly did the person do? Describe it objectively.
Consequence - What happened afterward? How did caregivers respond?

For example: - Antecedent: Caregiver approaches with washcloth to give a bath - Behavior: Person pushes caregiver away and shouts "Get away from me!" - Consequence: Caregiver backs away; bath is postponed

This ABC framework helps identify patterns. Perhaps this person always becomes agitated during bathing but not other activities. The antecedent (approaching with bathing equipment) triggers the behavior (aggression), which successfully achieves the consequence (avoiding the bath). Understanding this pattern allows caregivers to modify the approach—perhaps explaining what's happening, offering choices, playing favorite music, or adjusting water temperature.

Why These Behaviors Occur¶

Challenging behaviors in dementia have multiple underlying causes:

Neurological damage - Brain regions controlling impulse control, emotion regulation, and reality testing are impaired
Communication difficulties - The person cannot express needs, discomfort, or fears verbally
Sensory misperceptions - Damaged sensory processing creates false perceptions (hallucinations) or misinterpretations
Environmental triggers - Overstimulation, unfamiliar settings, or lack of structure triggers confusion
Unmet needs - Pain, hunger, thirst, need for bathroom, boredom, or loneliness
Medical problems - Infections, medication side effects, constipation, or other physical issues
Emotional reactions - Fear, anxiety, frustration, or sadness about cognitive losses

Effective management requires identifying which factors are contributing and addressing them systematically. This chapter will explore nine specific challenging behaviors, providing both understanding and practical strategies for each.

Sundowning: Late-Day Confusion and Agitation¶

Sundowning (also called late-day confusion or sundown syndrome) refers to increased confusion, agitation, anxiety, and restlessness that occurs in the late afternoon or evening. The term comes from the observation that symptoms often worsen as the sun goes down.

Characteristics of Sundowning¶

Sundowning typically includes:

Increased confusion - Disorientation worsens; the person may not recognize familiar surroundings
Agitation and restlessness - Pacing, fidgeting, inability to settle
Anxiety and suspiciousness - Increased worry, fear, or paranoid thoughts
Mood changes - Irritability, anger, or sudden sadness
Demanding behavior - Repeatedly asking questions, insisting on leaving, or demanding attention
Hallucinations or delusions - Seeing or believing things that aren't real, especially in dim lighting

Not everyone with dementia experiences sundowning, and severity varies widely. For some, it's mild increased confusion; for others, it's severe agitation lasting several hours each evening.

Why Sundowning Occurs¶

The exact mechanisms of sundowning aren't fully understood, but several factors likely contribute:

Circadian rhythm disruption - The brain's "internal clock" (located in the suprachiasmatic nucleus) regulates sleep-wake cycles. Dementia damages this clock, disrupting normal daily rhythms. As daylight fades, the disrupted circadian system may trigger alertness when the body should be preparing for sleep.

Accumulated fatigue - By late afternoon, mental and physical fatigue accumulates from the day's activities and cognitive effort. Fatigue reduces the person's ability to cope with confusion and stress.

Diminished lighting - As natural light decreases, shadows lengthen and visibility decreases. Poor lighting makes it harder to interpret the environment correctly, increasing confusion and potentially triggering misperceptions.

End-of-day activity changes - Evening often brings changes in household activity—family members returning home, dinner preparation, increased noise. This environmental stimulation may overwhelm someone with limited cognitive resources.

Low blood sugar - If the person hasn't eaten adequately during the day, low blood sugar in late afternoon can worsen confusion and irritability.

Medication timing - Some medications wear off by evening, or late-afternoon doses may cause side effects that worsen behavior.

Management Strategies for Sundowning¶

1. Maximize daytime light exposure - Open curtains during the day; spend time outdoors in natural light - Natural light helps maintain circadian rhythms - Consider light therapy (10,000 lux light box) in the morning for severe cases

2. Maintain consistent daily routines - Regular wake time, meals, activities, and bedtime - Predictability reduces anxiety and supports circadian rhythms - Schedule challenging activities in the morning when cognition is best

3. Minimize late-afternoon stimulation - Reduce noise, activity, and visitors in late afternoon - Create a calm, quiet environment as evening approaches - Avoid television programs with violence or intense content

4. Ensure adequate nutrition and hydration - Regular meals and snacks throughout the day - Adequate protein and complex carbohydrates - Limit caffeine, especially after noon - Ensure sufficient fluid intake

5. Provide reassurance and calm presence - Don't argue or try to reorient forcefully - Use calm voice, gentle touch, soothing music - Validate feelings: "I can see you're feeling worried" - Redirect attention to calming activities

6. Optimize evening lighting - Turn lights on before daylight fades - Avoid stark contrasts between bright and dark areas - Use nightlights in hallways and bathrooms - Close curtains to prevent disturbing reflections in windows

7. Establish calming evening rituals - Quiet activities: gentle music, hand massage, looking at photos - Avoid stimulating activities in evening - Create predictable pre-bedtime routine

8. Address potential medical causes - Check for pain, constipation, or urinary tract infection - Review medications with healthcare provider - Ensure adequate treatment of sleep disturbances

Example: Margaret experiences sundowning every evening around 5 PM, becoming convinced she needs to "go home" (despite being in her home of 40 years) and becoming increasingly agitated. Her daughter implements several strategies: afternoon snack at 3:30 PM, turning on all lights by 4 PM, closing curtains to prevent disturbing window reflections, and playing Margaret's favorite big band music at 5 PM while looking through photo albums together. The combination significantly reduces the severity and duration of evening agitation.

Wandering: When Walking Becomes a Risk¶

Wandering refers to aimless or purposeless walking, often with increased risk of becoming lost or endangered. It's one of the most dangerous behaviors in dementia, as people who wander may leave safe environments, become lost, experience injury, or suffer exposure to extreme temperatures.

Types and Patterns of Wandering¶

Wandering takes several forms:

Aimless wandering - Walking without apparent purpose or destination, often in circles or repetitive routes

Goal-directed wandering - Walking with an apparent purpose (often related to past roles or routines), such as "going to work," "picking up children from school," or "going home"

Exit-seeking - Repeatedly attempting to leave a building or area, trying doors and windows

Night wandering - Getting up during the night and walking around, often when sleep-wake cycles are disrupted

Searching behavior - Looking for something specific (often something from the past) or someone

Why Wandering Occurs¶

Wandering has multiple potential causes:

Past habits and routines - The person may be enacting deeply ingrained routines from earlier life—leaving for work at a certain time, walking to meet children after school, or taking an evening walk

Spatial disorientation - Damage to brain regions processing spatial information (especially the hippocampus and parietal lobes) causes the person to become lost even in familiar environments. They may not recognize they're already home and search for "home"

Restlessness and excess energy - Some people with dementia remain physically active and need to move. Without appropriate outlets for this energy, they wander

Medication side effects - Some medications (especially certain antipsychotics, antidepressants, or stimulants) can cause akathisia—an inner sense of restlessness that compels movement

Unmet needs - The person may be looking for a bathroom, searching for food or water, feeling too hot or cold, or experiencing pain

Searching for security - Anxiety, fear, or confusion may drive searching for something or someone familiar and safe

Boredom or lack of stimulation - Without meaningful activity, the person wanders to occupy themselves

Risks of Wandering¶

Wandering poses serious safety risks:

Getting lost, even in previously familiar neighborhoods
Exposure to extreme heat or cold
Dehydration or exhaustion
Traffic accidents
Falls or injuries
Becoming victims of crime
Entering unsafe areas (construction sites, bodies of water)

Statistics indicate that people with dementia who wander are at significant risk—many who become lost and are not found within 24 hours suffer serious injury or death from exposure or accidents.

Prevention and Management Strategies¶

1. Ensure safety first - Install locks that are difficult to operate (high or low on doors, requiring keys) - Use door alarms that alert when doors are opened - Camouflage doors with curtains or paint matching walls - Place "STOP" signs or mirrors on doors (some people stop when they see themselves) - Secure or fence outdoor areas - Remove car keys and disable vehicle if person still tries to drive

2. Provide identification - MedicAlert + Safe Return bracelet or necklace with ID information - GPS tracking devices (watches, shoe inserts, clothing tags) - ID in pockets with current contact information - Recent photograph readily available for search efforts

3. Inform neighbors and local police - Notify neighbors about the diagnosis and wandering risk - File information with local police department's vulnerable person registry - Provide recent photo and description to police - Consider community alert systems

4. Address underlying causes - Establish regular bathroom schedule - Ensure adequate food, water, and comfort - Provide appropriate physical activity and exercise - Review medications for side effects causing restlessness - Address pain, constipation, or other discomfort

5. Provide structured activity and exercise - Regular daily walks with caregiver (satisfy need to move safely) - Meaningful activities aligned with past interests and roles - Exercise programs appropriate to ability level - Folding towels, sorting items, sweeping—activities that allow movement

6. Redirect when wandering begins - Walk with the person, then gradually redirect back - Don't restrain or argue - Use favorite activities, snacks, or music to redirect - Validate the feeling: "You feel you need to go somewhere. Let's have some tea first"

7. Create safe wandering spaces - Clear, circular paths allowing safe walking - Interesting things along the path (pictures, textures, objects to handle) - Safe outdoor areas with secure fencing - Supervised wandering in protected environments

Example: Robert, who worked in retail management for 40 years, tries to leave home every morning at 8:30 AM, stating he "needs to go to work." His wife implements a comprehensive plan: She enrolled Robert in an adult day program where he arrives at 8:30 AM (satisfying his routine). She placed locks high and low on exterior doors and installed door alarms. She filed information with the Safe Return program and gave recent photos to neighbors. When Robert becomes restless in the evening, she takes him for a walk around the block, which satisfies his need to move and often leads to calm afterward.

Agitation: When Restlessness Becomes Distress¶

Agitation refers to a state of heightened emotional arousal characterized by restlessness, anxiety, irritability, and sometimes aggression. It's one of the most common behavioral symptoms in dementia, occurring in 60-70% of people with moderate to severe dementia.

Manifestations of Agitation¶

Agitation can include:

Physical agitation - Pacing, fidgeting, wringing hands - Inability to sit still or relax - Repetitive movements (rocking, tapping) - Trying to get out of chairs or bed

Verbal agitation - Excessive talking, shouting, or screaming - Verbal aggression or cursing - Repetitive questioning or complaints - Moaning or making distressed sounds

Emotional agitation - Visible anxiety or distress - Tearfulness or crying - Panic or fear responses - Irritability and quick anger

Causes and Triggers of Agitation¶

Agitation always has causes, though they're not always immediately obvious:

Physical discomfort - Pain (from arthritis, injuries, infections, constipation) - Hunger, thirst, or need for bathroom - Too hot or too cold - Uncomfortable clothing or positioning - Fatigue or poor sleep

Environmental factors - Overstimulation (too much noise, activity, or people) - Understimulation (boredom, lack of meaningful activity) - Unfamiliar or changed environment - Disturbing sounds (alarms, sirens, loud television) - Uncomfortable temperature or lighting

Communication difficulties - Inability to express needs or understand what's happening - Frustration at not being understood - Fear when unable to comprehend the situation

Psychological factors - Fear or anxiety about perceived threats - Loneliness or feeling abandoned - Grief or sadness - Loss of control or autonomy

Medical issues - Infections (especially urinary tract infections) - Medication side effects or interactions - Constipation or urinary retention - Dehydration - Progression of dementia affecting emotional regulation

The PIECES Framework for Agitation¶

The PIECES acronym helps caregivers systematically assess agitation causes:

Physical: Is the person in pain? Hungry? Need bathroom? Too hot/cold?
Intellectual: Are cognitive limitations being exceeded? Too confusing?
Emotional: Is the person fearful, sad, anxious, or grieving?
Capabilities: Is the person being asked to do something beyond current abilities?
Environmental: Is the environment too stimulating, confusing, or uncomfortable?
Social: Is the person lonely, bored, or overwhelmed by social demands?

Working through PIECES often reveals the cause of agitation.

Management Strategies for Agitation¶

1. Prevent agitation by addressing common causes - Regular pain assessment and treatment - Consistent toileting schedule - Adequate food, fluids, and rest - Comfortable clothing and environment - Meaningful activity and social contact

2. Modify the environment - Reduce noise and confusion - Provide calm, predictable routines - Optimize lighting (bright enough to see clearly, but not harsh) - Create quiet spaces for rest when needed - Remove or minimize disturbing stimuli

3. Use calming approaches - Speak calmly and softly - Slow movements; avoid sudden approaches - Use gentle touch (if welcomed) - Play familiar, soothing music - Offer favorite foods or beverages - Redirect to calming activities

4. Validate feelings and avoid arguing - Acknowledge emotions: "I can see you're upset" - Don't argue with confused statements - Don't try to use logic to convince - Accept their reality rather than correcting

5. Provide physical activity - Regular walks or exercise - Activities involving movement (folding, sweeping, dancing) - Physical activity reduces tension and improves sleep

6. Use distraction and redirection - Redirect attention to pleasant topics or activities - Offer a task aligned with past roles - Change the setting (go to different room, outside) - Provide something to hold or manipulate

7. Consider medical evaluation - If agitation is new or suddenly worse, evaluate for medical causes - Review all medications - Check for infection, constipation, or other treatable conditions

Example: Helen becomes increasingly agitated every afternoon around 2 PM, pacing and wringing her hands while crying out repeatedly. Her caregivers use the PIECES framework and discover she's been skipping lunch (P-Physical: hunger), is bored in the understimulating afternoon environment (E-Environmental), and feels lonely (S-Social). They implement a comprehensive plan: ensuring she eats lunch, providing an engaging afternoon activity (folding towels, which Helen did for years in her work), and arranging for a volunteer to visit at 2 PM for conversation and a walk. The agitation resolves almost completely.

Aggression: Understanding and Managing Hostile Behavior¶

Aggression in dementia refers to hostile or violent behavior, which can be verbal (threats, cursing, shouting) or physical (hitting, pushing, biting, throwing objects). Aggression is frightening and distressing for caregivers and often triggers crises in caregiving arrangements.

Types of Aggression¶

Verbal aggression - Shouting, screaming, or yelling - Threatening language - Cursing or using offensive language - Hostile or accusatory statements

Physical aggression - Hitting, slapping, or punching - Kicking or pushing - Biting or scratching - Grabbing or pulling - Throwing objects - Spitting

Importantly, aggression in dementia is almost never planned or intentional violence. Instead, it's typically a reflexive reaction to fear, pain, frustration, or misunderstanding.

Why Aggression Occurs¶

Understanding the context helps caregivers avoid personalizing aggression and respond effectively:

Reflexive self-defense - The person with dementia misinterprets a caregiver's approach as threatening. For example, someone approaching from behind during bathing may trigger a defensive reaction—the damaged brain perceives this as an attack

Catastrophic reaction - Overwhelming stimulation or demands exceed the person's cognitive capacity, triggering a "fight or flight" response. Unable to flee, they fight

Communication of "NO" - The person cannot verbally express refusal, so physical aggression communicates "I don't want this" or "Stop"

Frustration - Inability to perform tasks or make oneself understood leads to explosive frustration

Pain or physical discomfort - Unrecognized pain (from arthritis, injury, or illness) may cause aggressive reactions when the painful area is touched or the person is moved

Frontal lobe disinhibition - Damage to frontal lobes removes the normal inhibition of aggressive impulses. The person may act on fleeting angry feelings that they previously would have controlled

Misidentification - The person doesn't recognize the caregiver and perceives them as a threatening stranger

Territorial defense - The person perceives someone as invading their personal space or threatening their possessions

Triggers for Aggression¶

Common triggers include:

Personal care activities (bathing, dressing, toileting)
Being approached from behind or from the blind side
Being rushed or pressured
Being moved or transferred
Invasion of personal space
Taking away items the person is holding
Loud or sudden noises
Presence of unfamiliar people
Being restrained or prevented from movement

Management Strategies for Aggression¶

1. Prevent aggression by avoiding triggers - Identify patterns: When does aggression occur? What preceded it? - Modify approaches that trigger aggression - Allow adequate time; don't rush - Approach from the front where the person can see you - Explain what you're doing in simple, reassuring terms

2. During aggressive episodes: Ensure safety first - Back away; give the person physical space - Remove others from the area if needed - Remain calm; don't raise your voice or show fear - Don't restrain unless absolutely necessary to prevent injury - Remove any objects that could be used as weapons

3. Use calm, non-threatening communication - Lower voice volume and pitch - Speak slowly and simply - Use reassuring tone - Apologize even if you did nothing wrong: "I'm sorry I upset you" - Avoid arguing, explaining, or defending yourself

4. Modify personal care approaches - Break tasks into small steps with breaks between - Offer choices and control where possible - Use distractio techniques (singing, talking about pleasant topics) - Consider whether the task is truly necessary right now - Try again later if the person is resistant

5. Address underlying physical causes - Treat pain systematically - Check for constipation, urinary retention, or infection - Review medications for side effects - Ensure adequate food, water, and rest

6. Optimize the environment - Reduce stimulation and confusion - Provide adequate but not harsh lighting - Minimize noise and activity during care tasks - Create predictable routines

7. Train all caregivers in aggression management - Consistent approaches by all caregivers - Understanding of triggers and prevention - De-escalation techniques - Physical safety techniques

8. Consider medical consultation - If aggression is frequent, severe, or dangerous - Medication may be necessary in severe cases - But always try environmental and behavioral interventions first - Medications have significant risks and limited benefits

Example: Thomas strikes out at caregivers every morning during bathing, hitting and pushing them away. His care team analyzes the pattern and implements changes: warming the bathroom and water to comfortable temperatures, playing Thomas's favorite country music, offering a washcloth to hold (giving his hands something to do), breaking the bath into smaller segments with breaks, and having his favorite caregiver do the task while maintaining conversation about Thomas's former farm. The modifications allow bathing to occur without aggression most days.

When to Seek Help¶

Seek immediate medical evaluation if: - Aggression is new or suddenly worse - Aggression causes or risks serious injury - Aggression is accompanied by fever, confusion, or changes in consciousness - You feel unsafe or unable to provide care

Aggression may indicate a medical emergency (infection, stroke, medication reaction) requiring urgent treatment.

Hallucinations: Seeing, Hearing, or Feeling Things That Aren't There¶

Hallucinations are false sensory perceptions—experiencing things through the senses (sight, sound, touch, smell, or taste) that are not actually present. In dementia, visual hallucinations (seeing things that aren't there) are most common, followed by auditory hallucinations (hearing things that aren't there).

Types of Hallucinations¶

Visual hallucinations - Seeing people who aren't present (often deceased relatives or children) - Seeing animals (cats, dogs, insects) - Seeing objects or shapes that aren't there - Seeing people or figures in shadows or patterns

Auditory hallucinations - Hearing voices talking or calling their name - Hearing music or sounds - Hearing conversations from empty rooms

Tactile hallucinations - Feeling bugs crawling on skin - Feeling someone touching them - Feeling unusual textures or sensations

Olfactory hallucinations - Smelling odors that aren't present (burning, gas, decay)

Why Hallucinations Occur¶

Hallucinations in dementia result from the brain's deteriorating ability to process and interpret sensory information:

Misinterpretation of actual stimuli - The damaged brain misinterprets real sensory input. Shadows become people, patterns in wallpaper become faces, sounds from outside become voices. This is technically an illusion rather than a hallucination, but the distinction matters little to the person experiencing it.

Lewy body dementia - Visual hallucinations are especially characteristic of Lewy body dementia (LBD), occurring in up to 80% of people with this condition. In LBD, alpha-synuclein protein deposits damage brain regions processing visual information, causing vivid, detailed hallucinations.

Sensory deficits - Poor vision or hearing increases hallucination risk. When the brain receives inadequate sensory input (due to cataracts, macular degeneration, or hearing loss), it may "fill in" missing information with hallucinations.

Medication side effects - Many medications can cause hallucinations, especially in elderly people with dementia. Common culprits include anticholinergics, dopamine agonists, corticosteroids, and certain pain medications.

Medical conditions - Infections (especially urinary tract infections and pneumonia), dehydration, electrolyte imbalances, and fever can trigger hallucinations.

Sleep deprivation - Insufficient or fragmented sleep increases hallucination risk.

Responding to Hallucinations¶

1. Assess whether intervention is needed

Not all hallucinations require intervention. If the hallucination is pleasant or neutral and not causing distress, it may be best to simply go along with it.

Pleasant hallucinations: "The children are playing in the garden" → If this brings comfort, no need to correct
Neutral hallucinations: Seeing a cat that isn't there → If not distressing, can acknowledge it
Distressing hallucinations: Seeing intruders or threatening figures → Requires intervention

2. Don't argue or insist it's not real

The hallucination is real to the person experiencing it. Arguing that "there's nobody there" is ineffective and may cause distress, making the person feel dismissed or think you can't see the "obvious" threat.

3. Validate the emotion, gently redirect the perception

"I can see this is frightening for you. You're safe here with me."
"I don't see anyone there, but I'm here with you and you're safe."
Redirect attention: "Let's go to the kitchen for some tea."

4. Check for medical causes

New or suddenly worsening hallucinations may indicate: - Urinary tract infection or other infection - Medication changes or interactions - Dehydration - Pain or discomfort - Progression of dementia

5. Optimize sensory input

Ensure glasses and hearing aids are worn and functioning
Improve lighting (dim lighting increases visual misperceptions)
Reduce confusing stimuli (busy wallpaper patterns, mirrors, television)
Minimize shadows that might be misinterpreted

6. Modify the environment to reduce triggers

Cover or remove mirrors (reflections may be misinterpreted as other people)
Close curtains at night (window reflections can be disturbing)
Simplify décor (reduce patterns that might be misinterpreted)
Adjust lighting to eliminate shadows

7. Provide reassurance and safety

Physical presence and calm demeanor
Gentle touch (if welcomed)
Reassuring statements
Turn attention to something pleasant and concrete

8. Consider medication only if necessary

Antipsychotic medications can reduce hallucinations but carry significant risks (increased stroke risk, falls, faster cognitive decline, even death). Use only when: - Hallucinations cause severe, persistent distress - Behavioral interventions have failed - Benefits clearly outweigh risks - Used at lowest effective dose for shortest necessary time

Example: Dorothy sees children playing in her living room and becomes distressed that they might break her belongings. Her daughter validates the concern ("You're worried about your things, I understand"), checks for medical causes (recent urinary tract infection is treated), improves lighting in the room, covers a large mirror that creates confusing reflections, and redirects Dorothy's attention ("Let's go look at your photo albums in the other room"). The combination reduces the frequency and distress of the hallucinations significantly.

Delusions: Fixed False Beliefs¶

Delusions are fixed false beliefs that persist despite evidence to the contrary. Unlike hallucinations (which involve false perceptions), delusions involve false interpretations or beliefs about reality. In dementia, delusions often relate to theft, infidelity, abandonment, or persecution.

Common Delusions in Dementia¶

Theft or stealing - "Someone stole my purse/wallet/keys" - "The caregivers are stealing from me" - Accusatory beliefs about family members taking possessions

Infidelity - Believing a spouse is having an affair (Capgras delusion when combined with misidentification) - Suspicion and accusations about faithfulness

Abandonment - "My family has abandoned me" - "Nobody cares about me" - Belief that loved ones don't visit (even when they visit regularly)

Misidentification delusions - Capgras syndrome: Believing a familiar person has been replaced by an imposter - Believing home is not their home - Not recognizing oneself in mirror

Persecution - "People are trying to harm me" - "Someone is poisoning my food" - "They're plotting against me"

Other delusions - Believing they need to work (despite being retired for years) - Believing deceased persons are still alive - Believing they have important responsibilities to attend to

Why Delusions Occur¶

Delusions in dementia arise from the brain's attempts to make sense of confusing, fragmented experiences:

Memory impairment creates gaps - Unable to remember where they put items, the person concludes someone must have taken them. This "explanation" makes more sense than accepting memory failure.

Temporal disorientation - Confusion about time leads to beliefs from past eras. Someone might believe they need to go to work (retired 20 years ago) or care for children (now adults) because they're mentally living in an earlier time period.

Loss of recognition abilities - Prosopagnosia (inability to recognize faces) combined with reasoning impairment leads to misidentification. Unable to recognize a spouse's face but knowing they should know this person, the brain concludes this must be an imposter.

Attempt to maintain self-esteem - Admitting memory failure or incapacity threatens self-esteem. Believing items were stolen preserves the self-concept as competent (not forgetful).

Neurological damage - Damage to frontal lobes and temporal lobes impairs reality testing and reasoning abilities needed to evaluate beliefs logically.

Sensory deficits and misperceptions - Poor vision or hearing combined with cognitive impairment leads to misinterpretation of sensory information, which then becomes elaborated into delusional beliefs.

Responding to Delusions¶

1. Don't argue or try to use logic

You cannot reason someone out of a delusion using logic. Arguing that "nobody stole your purse" is ineffective and may: - Increase agitation and distress - Damage the relationship - Make the person feel dismissed or think you're part of the "conspiracy"

The delusion is the person's truth—their brain's best explanation for confusing experiences.

2. Validate the underlying feeling

Address the emotion beneath the delusion: - If they believe items were stolen: "You're upset because you can't find your purse. That's frustrating." - If they believe they're abandoned: "You're feeling lonely. I'm here with you now." - If they believe they need to go to work: "You're feeling you have responsibilities. You always worked so hard."

3. Redirect and offer to help

"Let's look for your purse together"
Quietly "find" the item and return it
Redirect to a pleasant activity
Change the subject to something comforting

4. Modify the environment to reduce triggers

For theft delusions: - Designate a specific place for important items - Have duplicates of frequently "lost" items (extra wallets, purses) - Label drawers and containers - Simplify the environment (fewer places to lose things)

For misidentification: - Ensure adequate lighting - Approach from the front where person can see you - Identify yourself by name and relationship - Avoid mirrors if they cause distress

5. Assess for medical causes

New or worsening delusions may indicate: - Infections - Medication changes - Pain or discomfort - Sensory deficits (worsening vision/hearing)

6. Provide reassurance without confirming the delusion

Walk a middle ground: - Don't agree with the delusion ("Yes, someone stole it") - Don't argue with the delusion ("No, nobody stole anything") - Instead: "I can see you're worried about your purse. Let's look for it together. You're safe here with me."

7. Consider medication cautiously

Antipsychotic medications can reduce delusions but carry risks. Reserve for: - Severe, persistent delusions causing significant distress - Delusions leading to dangerous behaviors - After behavioral interventions have failed - When benefits clearly outweigh substantial risks

Example: George repeatedly accuses his wife of 40 years of having an affair, checking her belongings and becoming agitated when she leaves the house. His wife initially tried to reason with him, which escalated his suspicions. After consultation with his doctor (who ruled out infection and medication causes), she changes her approach: validating his underlying fear of loss ("You're worried about our relationship. I love you and I'm not going anywhere"), providing reassurance, redirecting his attention to looking at their wedding photos together, and ensuring he has meaningful activity when she needs to leave the house. The delusion persists but with much less distress and agitation.

Repetitive Behaviors: When Actions and Questions Loop¶

Repetitive behaviors involve repeating the same action, question, or statement over and over, often within short time periods. This is one of the most common and frustrating behaviors for caregivers, as the person may ask the same question dozens or even hundreds of times per day.

Types of Repetitive Behaviors¶

Repetitive questioning - Asking the same question repeatedly ("What time is it?" "When is dinner?" "Where are we going?") - Often asked within minutes of receiving an answer

Repetitive statements - Repeating the same phrase or statement over and over - Telling the same story repeatedly

Repetitive actions - Pacing the same route repeatedly - Opening and closing drawers or doors - Rearranging items - Folding and refolding items - Repetitive hand movements or gestures

Shadowing - Following a caregiver constantly - Becoming distressed when the caregiver is out of sight - Repeatedly checking on the caregiver's whereabouts

Why Repetition Occurs¶

Repetitive behaviors have multiple underlying causes:

Short-term memory impairment - The person cannot remember asking the question or performing the action moments ago. Each time feels like the first time to them.

Anxiety and need for reassurance - The repetitive question often relates to anxiety (about time, upcoming events, safety). Even though answered, the underlying anxiety persists, prompting the question again.

Difficulty processing and retaining information - Even if the person hears the answer, damaged brain regions cannot process and store it, so it doesn't register.

Routine and ritual - Repetitive actions may represent fragments of former routines or attempts to create order and control in a confusing world.

Boredom and lack of stimulation - Without meaningful activity, the person fills time with repetitive behaviors.

Sensory seeking - Some repetitive movements (rocking, tapping) may provide soothing sensory stimulation.

Why Repetition is Distressing for Caregivers¶

For caregivers, repetitive behaviors are exhausting because: - The behavior persists no matter how many times they respond - It requires continual attention and interruption - It feels like the person isn't listening or doesn't care about the answer - It can continue for hours without relief

Understanding that the person truly cannot remember asking before helps caregivers avoid taking it personally, though this doesn't make it less exhausting.

Management Strategies for Repetitive Behaviors¶

1. Understand it's not intentional

The person is not trying to annoy you. They genuinely don't remember asking before. Each time they ask, it's the first time in their awareness.

2. Look for underlying needs or anxiety

Repetitive questions often signal underlying concerns: - "What time is it?" may mean "I'm anxious about upcoming events" - "Where's my mother?" may mean "I'm feeling alone and need comfort" - "When are we leaving?" may mean "I feel uncertain and need structure"

Address the underlying need rather than just answering the surface question.

3. Provide memory aids and environmental cues

Large clocks and calendars in visible locations
Written schedules of daily events
Signs and labels for rooms and drawers
Activity boards showing the day's schedule
Photo boards with names of family members

The person may not remember to check these aids, but they can redirect attention to them: "Let's look at the clock together."

4. Distract and redirect

When repetitive questioning or behavior begins: - Redirect to a pleasant activity - Engage in conversation about favorite topics - Offer a snack or beverage - Suggest a walk or different activity - Look at photo albums

5. Give the person meaningful activity

Boredom exacerbates repetition. Provide: - Tasks aligned with past roles (folding laundry, sorting items, sweeping) - Sensory activities (music, textures, aromatherapy) - Simple crafts or activities - Social interaction

6. Answer calmly each time

Even if you've answered 100 times: - Respond patiently as if it's the first time - Use the same short, simple answer - Speak in a calm, reassuring tone - Don't show frustration or say "I just told you"

7. Consider a written or recorded answer

For frequently repeated questions: - Write the answer on a card the person can refer to - Record your voice answering the question so they can replay it - Create a sign with the information (though effectiveness varies)

8. Take breaks for caregiver wellbeing

The exhaustion of repetitive behaviors requires caregiver support: - Respite care to give caregivers breaks - Support groups to share strategies and vent frustration - Realistic expectations (the behavior likely won't stop completely)

Example: Maria asks "When is lunch?" every 5-10 minutes from 10 AM onward, creating exhaustion for her caregiver. Her daughter implements several strategies: creating a large visual schedule showing meals and activities, providing a meaningful mid-morning activity (folding dish towels, which Maria did for years), redirecting to looking at family photos when questioning intensifies, and calmly answering each time without showing frustration. She also arranges for respite care three afternoons per week so she can recharge. While Maria still asks repeatedly, the frequency decreases somewhat and the caregiver copes better.

Sleep Disturbances: When Night and Day Reverse¶

Sleep disturbances in dementia include difficulty falling asleep, frequent nighttime wakening, sleeping excessively during the day, and reversal of sleep-wake patterns. Poor sleep affects both the person with dementia and their caregivers, as nighttime wakefulness often means caregivers get inadequate rest.

Types of Sleep Disturbances¶

Insomnia - Difficulty falling asleep at bedtime - Taking hours to fall asleep - Anxiety or agitation at bedtime

Nighttime wakefulness - Waking multiple times during the night - Staying awake for hours during the night - Getting up and wandering at night

Day-night reversal - Sleeping most of the day - Being awake and active at night - Completely reversed circadian rhythm

Early morning awakening - Waking at 2-4 AM and being unable to return to sleep - Being ready to "start the day" in the middle of the night

Excessive daytime sleepiness - Sleeping many hours during the day - Frequent, long naps - Falling asleep during activities or meals

Why Sleep Disturbances Occur¶

Multiple factors contribute to sleep problems in dementia:

Circadian rhythm disruption - The suprachiasmatic nucleus (brain's internal clock) is damaged, disrupting the normal sleep-wake cycle. The person loses the ability to maintain a consolidated sleep period at night.

Reduced exposure to light - People with dementia often spend more time indoors with inadequate light exposure. Light is the primary cue for circadian rhythms, so insufficient bright light leads to circadian drift and sleep disruption.

Decreased physical activity - Reduced daytime activity decreases sleep drive. Without adequate physical and mental activity, the person doesn't build up sufficient sleep pressure to sleep well at night.

Napping - Excessive daytime napping reduces nighttime sleep need, creating a vicious cycle of daytime sleeping and nighttime wakefulness.

Medical conditions - Sleep apnea, restless leg syndrome, pain, nocturia (frequent nighttime urination), and other medical conditions disrupt sleep.

Medications - Some medications interfere with sleep, while others cause excessive daytime drowsiness.

REM sleep behavior disorder - Especially common in Lewy body dementia, this involves acting out dreams during REM sleep, sometimes violently.

Anxiety and agitation - Anxiety about nighttime, fear of the dark, or sundowning patterns may prevent falling asleep or cause nighttime wakening.

Impact of Sleep Disturbances¶

Poor sleep creates cascading problems:

For the person with dementia: - Worsened confusion and cognitive function - Increased behavioral problems - Higher fall risk - Increased depression and anxiety - Faster disease progression

For caregivers: - Sleep deprivation and exhaustion - Increased stress and burnout - Health problems from chronic sleep disruption - Higher rates of placing person in residential care

Management Strategies for Sleep Disturbances¶

1. Optimize circadian rhythms with light exposure

Bright light in the morning - Get outside or sit by a bright window for 30-60 minutes each morning
Light therapy - Consider a 10,000 lux light box for 30 minutes each morning
Adequate daytime light - Keep environment bright during the day
Darkness at night - Dark, quiet bedroom at night; minimize nightlights (or use dim red lights)

2. Increase daytime activity

Regular physical exercise (walks, chair exercises, dancing)
Mental stimulation and engagement
Social interaction
Meaningful activities
Structure and routine throughout the day

3. Manage daytime napping

Limit daytime naps to 30 minutes
Avoid late afternoon napping
If excessive daytime sleepiness persists, evaluate for medical causes (sleep apnea, medication effects)

4. Establish consistent sleep schedule

Same bedtime and wake time every day
Regular daily routines for meals and activities
Predictability helps maintain circadian rhythms

5. Create good sleep environment

Comfortable temperature (slightly cool)
Quiet bedroom (white noise if helpful)
Comfortable bedding
Dark room at night
Safe environment for nighttime wandering (if occurs)

6. Develop calming bedtime routine

Same routine each night signals bedtime
Quiet, calming activities (soft music, gentle massage, warm bath)
Avoid stimulating activities in evening
Avoid screens (television, tablets) close to bedtime

7. Address physical comfort

Ensure adequate pain management
Regular toileting before bed
Limit evening fluids (to reduce nighttime urination)
Treat constipation
Comfortable clothing for sleeping

8. Review medications

Some medications interfere with sleep
Others cause excessive daytime drowsiness
Review all medications with healthcare provider
Adjust timing of medications if possible

9. Avoid sleep-disrupting substances

Limit caffeine (none after noon)
Avoid alcohol (disrupts sleep quality)
Avoid large meals close to bedtime
Limit evening fluids

10. Use sleep medications cautiously

Behavioral interventions should be tried first
Sleep medications in elderly people carry risks (falls, confusion, dependence)
If necessary, use lowest effective dose for shortest time
Melatonin (3-5 mg at bedtime) may help with fewer risks than other sleep medications

11. Consider medical evaluation

If sleep disturbances are severe or sudden: - Evaluate for sleep apnea - Check for restless leg syndrome - Rule out infections or other medical causes - Assess for depression or anxiety - Review for medication side effects

Example: William sleeps most of the day and is awake and active from 11 PM to 5 AM, exhausting his wife. His doctor recommends a comprehensive approach: No napping during the day (keeping William engaged with activities), sitting outside in bright sunlight for 45 minutes each morning, a daily 30-minute walk, a consistent bedtime routine starting at 9 PM (warm bath, soft music, gentle hand massage), and making the bedroom as dark and quiet as possible. If William does wake at night, his wife has set up a safe area where he can move around without danger. After three weeks of consistency with this routine, William's sleep-wake pattern gradually improves, though complete normalization doesn't occur.

Catastrophic Reactions: When Emotions Overwhelm¶

Catastrophic reactions are sudden, extreme emotional outbursts that seem disproportionate to the triggering situation. The person may suddenly become intensely agitated, upset, tearful, angry, or panicked in response to what appears to be a minor trigger or no apparent trigger at all.

Characteristics of Catastrophic Reactions¶

During a catastrophic reaction, the person may:

Become suddenly and intensely agitated or upset
Cry uncontrollably or show extreme distress
Shout, scream, or become verbally aggressive
Become physically aggressive
Panic or show intense fear
Refuse all assistance or interaction
Become completely inconsolable for a period of time

Catastrophic reactions typically: - Come on suddenly with little warning - Seem excessive compared to the apparent cause - Are intense and difficult to stop once started - Eventually subside (usually within 15-30 minutes) - Leave the person exhausted afterward

Why Catastrophic Reactions Occur¶

The term "catastrophic reaction" comes from the observation that the person reacts as if something catastrophic has occurred, even when the trigger seems minor. This happens because:

Cognitive overload - The damaged brain has limited capacity to process information and handle stress. What seems like a small demand to a healthy person may completely overwhelm someone with dementia, triggering a "system overload" response.

Loss of coping mechanisms - Healthy adults manage stress using various cognitive strategies (perspective-taking, problem-solving, emotion regulation). Brain damage removes these coping tools, leaving only primitive stress responses (fight or flight).

Inability to express or understand - Frustration at not being able to communicate needs or understand what's happening builds until it erupts explosively.

Accumulation of stressors - Multiple small stressors throughout the day accumulate, and one final trigger causes the system to collapse.

Frontal lobe damage - The frontal lobes normally inhibit emotional outbursts and regulate responses. Damage to these regions removes this inhibition.

Common Triggers¶

Catastrophic reactions are often triggered by:

Being asked to do something too complex for current abilities
Being rushed or pressured
Too much stimulation (noise, people, activity)
Being corrected or contradicted
Personal care tasks (bathing, dressing, toileting)
Frustration at not being able to communicate
Changes in routine or environment
Fatigue or physical discomfort

Prevention Strategies¶

1. Avoid triggers

Don't push the person beyond their abilities
Break tasks into very simple steps
Allow plenty of time; don't rush
Reduce environmental stimulation
Avoid arguing or correcting
Maintain consistent routines

2. Monitor for early warning signs

Catch escalation early before it reaches catastrophic levels: - Increasing restlessness or agitation - Facial expressions showing distress - Changes in breathing (faster, shallow) - Increased pacing or hand movements - Rising voice volume or tone

3. Simplify and reduce demands

Keep activities simple and achievable
Provide one instruction at a time
Reduce choices and decisions required
Avoid multiple simultaneous demands

4. Ensure physical comfort

Adequate food, water, and rest
Regular toileting
Comfortable temperature
Pain management
Appropriate clothing

5. Maintain calm environment

Quiet, peaceful setting
Reduce noise and commotion
Limit number of people present
Predictable daily structure

Response During a Catastrophic Reaction¶

When a catastrophic reaction occurs:

1. Ensure safety first

Remove potential hazards
Give the person space
Don't restrain unless absolutely necessary to prevent injury

2. Reduce stimulation immediately

Lower your voice
Minimize movement around the person
Reduce noise and activity
Dim harsh lighting if possible
Clear others from the area

3. Don't try to reason or argue

Logic won't work during the crisis
Don't try to explain or convince
Don't ask questions requiring complex answers

4. Use calming presence and voice

Speak softly and slowly
Use simple, reassuring phrases: "You're safe" "I'm here" "It's okay"
Avoid sudden movements
Offer gentle touch if it helps (back away if it worsens distress)

5. Redirect after the peak passes

Once intensity begins to decrease, gently redirect
Offer something comforting (beverage, favorite music, looking at photos)
Change the environment (move to different room)

6. Allow recovery time

Don't immediately resume the triggering activity
Give the person time to calm fully
Expect fatigue after the reaction
Provide quiet, comforting environment

7. Analyze and learn

After the person has recovered, caregivers should: - Review what triggered the reaction - Identify early warning signs that were missed - Plan how to avoid the trigger in the future - Consider whether the triggering activity is truly necessary

Long-term Management¶

Document patterns - Keep a log of catastrophic reactions - Note triggers, time of day, antecedents - Identify patterns to predict and prevent

Adjust care approaches - Modify tasks that consistently trigger reactions - Consider whether certain activities are essential - Find alternative ways to accomplish necessary tasks - Accept that some things may need to be eliminated

Educate all caregivers - Ensure everyone knows triggers and prevention strategies - Train in de-escalation techniques - Discuss consistent approaches

Support for caregivers - Catastrophic reactions are frightening and exhausting - Caregivers need support and respite - Consider professional help if reactions are frequent and severe

Example: Susan experiences catastrophic reactions during evening bathing—becoming intensely distressed, screaming, crying, and striking out. Her care team analyzes the pattern and discovers multiple triggers occurring simultaneously: fatigue from the day, cold bathroom, being rushed, and feeling vulnerable while undressed. They completely restructure the bathing routine: moving baths to mid-morning when Susan is rested, warming the bathroom thoroughly, allowing 45 minutes for the entire process, breaking it into small steps with breaks, maintaining conversation about pleasant topics, and keeping Susan covered with towels except for the specific area being washed. The catastrophic reactions during bathing cease almost completely.

Conclusion: Compassionate, Informed Caregiving¶

Challenging behaviors in dementia are among the most difficult aspects of caregiving, but understanding transforms these experiences from battles into opportunities for compassionate problem-solving. Every behavior has meaning—it represents the person's attempt to communicate, to cope, or to make sense of a confusing world.

Key principles to remember:

Behaviors are symptoms, not choices - The person is not being difficult intentionally; their damaged brain produces these behaviors
Every behavior has triggers and causes - Detective work to identify and modify triggers prevents many problems
Focus on prevention, not just reaction - Understanding patterns allows prevention rather than repeated crisis management
The person's reality is their truth - Don't argue with hallucinations, delusions, or confused statements; validate emotions and gently redirect
Self-care enables caregiving - You cannot provide compassionate care when exhausted and overwhelmed; respite and support are essential, not optional
Medications are last resort - Behavioral interventions should always be tried first; medications carry significant risks and limited benefits
Safety first, always - When behaviors risk harm, safety takes precedence; seek professional help when needed

The behaviors described in this chapter—sundowning, wandering, agitation, aggression, hallucinations, delusions, repetitive behaviors, sleep disturbances, and catastrophic reactions—affect most people with dementia at some point. With understanding, patience, environmental modifications, and evidence-based strategies, many of these behaviors can be reduced or managed effectively.

Remember that you are not alone. Healthcare professionals, support groups, respite programs, and educational resources exist to support families navigating these challenges. Seeking help is a sign of strength and wisdom, not weakness or failure.

Key Takeaways¶

Challenging behaviors are symptoms of brain disease, not intentional actions or character flaws
The ABC framework (Antecedent-Behavior-Consequence) helps identify triggers and patterns
Sundowning involves late-day confusion and agitation, often managed through light exposure, routine, and environmental modification
Wandering poses safety risks; prevention through environmental modification and GPS tracking is essential
Agitation signals unmet needs; the PIECES framework helps identify physical, intellectual, emotional, capabilities, environmental, and social causes
Aggression is typically defensive or reactive; calm, non-threatening approaches and identifying triggers reduce incidents
Hallucinations and delusions reflect the brain's misinterpretation of sensory information; validate emotions without confirming false beliefs
Repetitive behaviors result from memory impairment and anxiety; patient responses and meaningful activity help
Sleep disturbances respond to circadian rhythm support through light exposure, activity, and consistent routines
Catastrophic reactions represent cognitive overload; reduce demands, monitor for early signs, and respond with calm presence
Behavioral interventions should always precede medication; medications carry risks and have limited effectiveness
Caregiver self-care and respite are essential—you cannot provide compassionate care when depleted

Review Questions¶

Why is it important to understand that challenging behaviors are symptoms of brain disease rather than intentional actions?
Explain the ABC framework for analyzing behaviors. How can it help caregivers respond more effectively?
What is sundowning, and what strategies can help manage late-day confusion and agitation?
Describe three safety measures to prevent wandering and three strategies to address the underlying causes of wandering.
What is the PIECES framework, and how does it help identify causes of agitation?
Why is arguing with hallucinations or delusions ineffective? What approach is more helpful?
Explain why repetitive questioning occurs and how caregivers can respond in ways that address underlying anxiety.
How does bright light exposure in the morning help manage sleep disturbances? What other interventions support better sleep?
What is a catastrophic reaction, and what should caregivers do during an episode?
Why are behavioral interventions preferred over medications for managing challenging behaviors?

Additional Resources¶

Next: Chapter 8: Diagnosis and Assessment explores how dementia is diagnosed through clinical evaluation, cognitive testing, brain imaging, and biomarker assessment.