143. CCA Study Notes: Managing Responsive Behaviours in Dementia

The Big Picture

A person living with dementia may sometimes shout, wander, become upset, or resist care. These behaviours can be difficult to understand, especially when the person cannot explain what is wrong.

But there is often a reason behind the behaviour. The person might be uncomfortable, frightened, confused, or trying to communicate a need.

As a support worker, your job is to look for what the behaviour might mean. You also need to stay calm, protect everyone’s safety, respect the person’s dignity, and follow the care plan.

Look for Nova Scotia CCA Notes throughout this page for current provincial guidance.

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Course Notes: Key Ideas You Need to Know

1. Understanding Responsive Behaviours

What are responsive behaviours?

Responsive behaviours are actions, words, gestures, or other behaviours that often happen because a person is responding to something affecting them.

For someone living with dementia, possible reasons include:

• Illness or infection
• Pain or physical discomfort
• Hunger, thirst, or other unmet needs
• Fear, anxiety, or confusion
• Something happening in the person’s surroundings

The important idea is that all behaviour has meaning.

A person may be trying to communicate something they cannot explain in words.

Why dementia can cause these behaviours

Dementia changes how the brain processes information.

A person living with dementia may have difficulty:

1. Sorting through the many messages the brain receives.
2. Sending the correct messages between parts of the brain.
3. Understanding the meaning of certain situations or actions.

For example, a person might feel cold or hungry but be unable to recognize what that feeling means.

Instead of explaining the problem, the person might become upset, refuse care, shout, or strike out.

Key fact: The person cannot control these actions because of dementia.

Do not blame the person, take the behaviour personally, or become angry with them. Do not blame yourself for the behaviour either.

What the support worker should remember

When someone behaves in a challenging way, try to understand what the person may be communicating.

Your observations can help identify possible reasons for the behaviour.

You must also:

• Protect your safety and the safety of others.
• Report unusual or increased responsive behaviours.
• Respect the person’s rights and preferences.
• Provide care according to the care plan.

2. Remember DIPPS When Providing Care

DIPPS is a group of principles that helps support workers provide respectful, person-centred care.

Principle	What it means
Dignity	Treat the person with respect and recognize their value.
Independence	Support the person’s ability to do things for themselves.
Individualized care	Recognize the person’s individual needs.
Privacy	Respect the person’s personal space and privacy.
Preferences	Respect the person’s choices and likes.
Safety	Protect the person and others from harm.

DIPPS still applies when a person becomes confused, upset, or aggressive.

A challenging behaviour does not take away the person’s right to respectful care.

3. The ABCDs of Managing Responsive Behaviours

The ABCDs provide a way to understand a behaviour and decide how to support the person.

Remember these four parts:

1. A = Activating Event: What happened before the behaviour?
2. B = Behaviour: What did the person do?
3. C = Consequences: What happened after the behaviour?
4. D = Decide and Debrief: How can you support the person, reduce responsive behaviours, and discuss the situation with the care team?

A: Activating Event

An activating event is something that happened before the responsive behaviour.

Start by asking:

• When and where did the behaviour happen?
• What was the person doing immediately beforehand?
• What was happening around the person?

Look for possible environmental, physical, and emotional factors.

Environmental factors

In consultation with your supervisor or nurse, consider:

• Noise from televisions, music, meals, or shift changes
• Clutter, furniture, or crowded areas
• Bright lights, glare, or mirrors
• A room that is too hot or too cold
• Changes involving staff, other clients, or renovations

Also consider whether the environment provides safe walking space, encourages independence and movement, and respects the person’s cultural and lifestyle habits.

A recent medication change may also be relevant.

Physical factors

With your supervisor or nurse, consider whether the person may be affected by:

• Poor vision or hearing
• An acute illness, such as pneumonia or a urinary tract infection
• A chronic illness, such as diabetes or angina
• Long-term pain, such as arthritis, ulcers, or headaches
• Dehydration
• Constipation
• Fatigue or other physical discomfort

Psychological factors

Emotional experiences may also influence behaviour.

In consultation with your supervisor or nurse, observe or consider:

• A history of psychiatric illness
• A recent loss or several losses
• Signs of sadness, such as crying or withdrawal
• Earlier experiences involving abuse or post-traumatic stress disorder (PTSD)
• Responses to hallucinations

Do not assume you know the cause. Your observations help the care team understand what may be happening.

B: Behaviour

This step focuses on what the person did.

Observe the behaviour rather than immediately judging it.

Possible behaviours include:

• Physical aggression
• Screaming, swearing, or constant questioning
• Restlessness or agitation
• Wandering
• Hoarding
• Behaviours that are culturally inappropriate
• Reduced sexual inhibitions ⓘ
• Shadowing, which means following someone and often copying their actions

Also consider psychological symptoms that others have described, such as anxiety, depression, paranoia, hallucinations, or delusions.

These observations are considered in consultation with the supervisor or nurse.

C: Consequences

A consequence is what happens after the behaviour.

Ask yourself:

• What happened to the person?
• How did the behaviour affect staff?
• How did it affect other clients?
• How did caregivers respond?

For example, was the person ignored, scolded, restrained, sedated, or guided back to where they had been?

The caregiver’s interpretation and response can affect what happens next.

Communication is especially important.

Communication includes more than spoken words.

The ABCDs identify three parts of communication:

• Body language: 55%
• Tone and pitch of voice: 38%
• Words used: 7%

A person with cognitive impairment, meaning reduced ability to remember, think, reason, understand, or live independently, may be especially sensitive to nonverbal communication.

This means the person may respond to your facial expression, movements, and tone of voice.

Your words may sound reassuring, but your tense or angry body language can send a different message.

A patient, calm, and gentle approach can have a positive effect.

D: Decide How to Support the Person and Debrief

After considering what happened, decide how to respond safely and respectfully.

Before approaching

• Stop and think about what you are going to do.
• Plan how to approach the person.
• Explain who you are, what you want to do, and why.
• Never assume the person cannot understand you.

During care

• Smile and use relaxed, positive body language.
• Move slowly and give the person time.
• Respect their personal space.
• Approach and provide care from the side, within their view, rather than directly in front.
• Use distraction when helpful. Talk about familiar interests or offer something to hold during care.
• Reduce upsetting noise, including television or radio sounds.
• Do not argue with the person.

When the person resists care

If the person becomes resistant or aggressive but is not harming themselves or others, leave them alone when necessary.

Give the person time to settle before approaching again.

If aggression threatens safety, protecting yourself and others remains essential.

Afterward

• Discuss the situation with the care team to identify ways to meet the person’s physical, environmental, and psychological needs.
• Follow the care plan.
• Report and record what caused the behaviour, the behaviours observed, and what you did to support the person.

Remember: The ABCDs help you look at the full situation rather than focusing only on the behaviour itself.

4. Validation Therapy: Respecting the Person’s Reality

Validation therapy is an approach for people living with dementia that focuses on empathy ⓘ and accepting how the person understands reality.

It was developed by Naomi Feil.

The goal is to help the person feel respected, understood, and supported.

How validation therapy works

A person living with dementia may believe something that does not match the present situation.

Instead of correcting the person’s belief, validation therapy encourages caregivers to listen without arguing or disagreeing.

For example, a person may believe their grown children are still young and will soon return from school.

Rather than correcting the person, the caregiver can allow them to talk about their experience.

The caregiver might gently encourage the person to describe what they see, hear, feel, smell, or touch.

Key fact: Validation therapy focuses on acknowledging the person’s experience rather than forcing them to accept someone else’s understanding of reality.

The 10 principles of validation therapy

These principles explain the thinking behind validation therapy.

1. Every person is unique. Care should recognize individual differences.
2. Every person has value. Confusion or disorientation does not reduce a person’s worth.
3. Behaviour has a reason. Try to understand what may be behind the person’s actions.
4. Behaviour reflects more than brain changes. Physical, social, and psychological experiences throughout life can influence behaviour.
5. Behaviour cannot be changed by force. A person must want to change their behaviour.
6. Acceptance matters. Treat the person without judging them.
7. Life stages involve important tasks. Unfinished tasks from earlier stages of life may contribute to psychological difficulties.
8. Earlier experiences may become important again. When recent memory fails, the person may turn to older memories to restore a sense of balance. They may picture things from memory when eyesight fails or listen to remembered sounds when hearing fails.
9. Acknowledging painful feelings can help. Feelings that someone listens to and accepts may become less intense. Ignoring or suppressing them can make them stronger.
10. Empathy supports the person. An understanding approach helps build trust, reduce anxiety, and restore dignity.

You do not have to memorize these as ten unrelated statements. They share a central idea: understand the person, accept their experience, and respond with respect.

5. Gentle Persuasive Approaches (GPA)

Gentle Persuasive Approaches (GPA) is a training program that helps direct care workers respond to responsive behaviours safely and respectfully.

It was originally designed for long-term care staff in 2004 and has been used by agencies across Canada and in parts of the United States.

The training addresses situations involving behaviours such as:

• Grabbing
• Biting
• Hitting

These behaviours may occur in people living with dementia, including Alzheimer’s disease.

GPA teaches caregivers to use approaches that are:

• Self-protective: Workers take steps to protect themselves.
• Respectful: Workers continue to treat the person with dignity.
• Nonviolent: Workers use approaches that avoid violence.

The program also aims to reduce the risk of workplace injuries during difficult care situations.

Remember the difference: Validation therapy focuses on understanding and accepting the person’s experience. GPA focuses on training caregivers to handle responsive behaviours respectfully and safely.

6. Wandering: Understanding the Risks and Preventing Injury

What is wandering?

Wandering happens when a person moves around or leaves an area and may be unable to find their way back.

People living with dementia may experience disorientation, which means confusion about people, time, or places.

Because of this confusion, a person may leave unexpectedly.

They might travel on foot, by bicycle, in a car, or another way. They may disappear from sight quickly.

Why wandering is dangerous

Dementia can affect a person’s judgment about what is safe.

Someone who wanders may:

• Enter a busy road.
• Walk toward a lake or river.
• Become lost in a wooded area.
• Experience dangerous heat or cold if dressed improperly.

These situations can cause life-threatening accidents.

Why someone might wander

Wandering does not always have an identifiable cause.

Sometimes the person is trying to meet a need but cannot explain it.

Possible reasons include:

• Looking for a bathroom or bedroom
• Searching for a child or partner
• Pain
• Adverse medication effects
• Stress
• Restlessness
• Anxiety

Do not assume the person is wandering without a reason simply because they cannot tell you where they want to go.

Ways to help prevent wandering injuries

Doors and building safety

• Follow facility policies for locking doors and windows.
• Keep required door alarms and electronic doors operating. Alarms should sound when doors open.
• Follow the facility’s fire-exit rules. Everyone must be able to leave the building during a fire.
• Ensure the person wears the required facility identification bracelet or registry identification.
• Some agencies disguise exits or hazardous equipment that cannot be removed to reduce injury and wandering risks.

In community settings, locks may be installed near the upper or lower parts of doors because a person with dementia may not think to look there.

Fire safety requirements still matter.

Activities and movement

• Support exercise when it has been ordered. Adequate activity can reduce wandering.
• Offer simple, familiar activities that help keep the person occupied.

Activities may include folding napkins, sorting socks, dusting, rolling yarn, sweeping, sanding wooden blocks, or watering plants.

When the person wants to leave

• Do not argue with the person.
• Do not use restraints to manage wandering.
• If the person insists on going outdoors, accompany them and ensure they are properly dressed.
• After a few minutes outside, guide the person back indoors.

While walking together, pointing out things to look at may sometimes bring back older memories.

Safety: Restraints can increase disorientation and agitation. They also require a physician’s order ⓘ.

MedicAlert Safety Home

MedicAlert Safety Home is described as a nationwide identification and return service for people who may wander or become lost.

The service is available for a small fee.

The process involves:

1. A family member completing a form and supplying a recent photograph.
2. The person’s information being entered into a national database.
3. The person receiving identification, including a card and bracelet.
4. Someone who finds the missing person contacting police.
5. Police contacting the family member or caregiver.

The purpose is to help identify and safely return someone who becomes lost.

7. Secured Units in Long-Term Care

A secured unit is an area of a long-term care facility with locked entrances and exits.

It allows residents who are at risk of wandering away to move within a protected area.

Why secured units are used

Some residents repeatedly move around the facility or try to leave the building.

A secured unit may reduce the risk of injury while allowing movement within the unit.

But a secured unit is also considered an environmental restraint because the environment limits where the resident can go.

Rules and resident rights

A secured unit must protect the person’s rights.

Important requirements include:

• The person must have a dementia diagnosis.
• A physician’s order is required for placement.
• The facility must use the least restrictive approach ⓘ.
• The health care team should regularly review whether the placement remains necessary.
• Staff must receive specialized training in dementia care.
• The unit must have programs that promote dignity, personal freedom, and safety.

Standards governing secured care units are established through legislation ⓘ.

What happens as dementia progresses?

In advanced dementia, a person may become unable to sit or walk and may be bedridden.

At that stage, wandering is no longer a risk.

The person usually moves to another unit because secured placement is no longer necessary for wandering prevention.

Important difference: A secured unit is not simply an ordinary living area with extra safety measures. Its locked exits make it a form of environmental restraint, with specific placement requirements and ongoing review.

8. Sundowning: Behaviour Changes Later in the Day

What is sundowning?

Sundowning happens when dementia symptoms and behaviours increase later in the day or during darkness.

Changes may begin in the late afternoon or evening and continue into the night.

A person may experience increasing:

• Disorientation
• Restlessness
• Anxiety
• Agitation
• Other dementia-related symptoms

The person may be frightened by darkness or misunderstand shadows and objects in a poorly lit room.

What can make sundowning worse?

The person may be:

• Hungry
• Tired
• Needing the bathroom
• Unsure where they are
• Frightened by shadows or darkness

These needs and experiences can increase restlessness.

How to support someone experiencing sundowning

Create a calmer environment

• Keep the setting quiet during the later part of the day.
• Consider soft music.
• Provide adequate lighting.
• Remove objects creating frightening shadows.

Support comfort and safety

• Make sure the person is clean and dry.
• Protect against falling from a bed or chair.
• Promote regular elimination ⓘ.
• Encourage exercise and activities earlier in the day.
• Avoid restraints.

Treatments should be completed earlier in the day if doing so will reduce the person’s agitation.

Communicate calmly

Do not attempt to reason the person out of their confusion.

Dementia may make it difficult for them to understand or respond clearly.

For example, if someone believes a stranger is in the room, do not ignore their fear.

Turn on the light, check for disturbing shadows, remove what is causing the problem when possible, and offer verbal reassurance.

Key fact: Sundowning is associated with worsening symptoms during the late afternoon, evening, or darkness. A calm environment, suitable lighting, and attention to basic needs may help.

9. Hallucinations and Delusions

These terms sound similar, but they describe different experiences.

Hallucinations

A hallucination occurs when someone sees, hears, or feels something that is not present.

Examples include:

• Seeing people, animals, or insects that are not there
• Hearing voices when nobody is speaking
• Feeling insects crawling on the skin
• Feeling as though someone is touching them

Hallucinations can be frightening for the person experiencing them.

Delusions

A delusion is a false belief.

A person living with dementia might believe:

• A doll is a real baby.
• Their spouse has been unfaithful.
• Someone is holding them captive.
• Someone intends to harm or kill them.
• A caregiver is actually another person.

These beliefs can cause strong feelings, including fear.

Hallucinations versus delusions

Hallucination	Delusion
The person experiences a sight, sound, or feeling that is not real.	The person holds a belief that is false.
Example: Hearing a voice that is not present.	Example: Believing someone is holding them captive.

How to respond

Communication and reassurance

• Do not argue about the experience or belief.
• Calmly reassure the person.
• Offer reassurance that you will help protect them from harm.
• Redirect attention toward a suitable activity or object.
• A walk may provide a helpful distraction.

Check the surroundings

• Reduce noises the person might misunderstand, including televisions, radios, appliances, and heating or cooling equipment.
• Look for disturbing glare, shadows, or reflections.
• Cover or remove mirrors when the person’s reflection causes fear.

Support the senses

• Make sure the person uses prescribed glasses or hearing aids.
• Follow the care plan.
• Use touch to offer comfort when appropriate.

When touching the person, approach from the side and remain within their line of sight.

Remember: The goal is to reduce distress and provide reassurance, not to win an argument about what the person believes or experiences.

10. Catastrophic Reactions

What is a catastrophic reaction?

A catastrophic reaction is an extreme response to something the person believes is dangerous, frightening, or disastrous.

The person may:

• Scream
• Cry
• Become highly agitated
• Become physically combative

These reactions may happen when the person feels overwhelmed.

What can cause a catastrophic reaction?

Too much stimulation is a common cause.

For example, a person may be sitting in a noisy dining room while a television plays and several people ask questions.

Other possible triggers include:

• An unexpected change
• A flickering light that the person mistakes for fire
• Someone approaching too quickly
• Someone standing too close

How to approach the person safely

Never sneak up on someone living with dementia.

Instead:

1. Approach from the side, where the person can see you.
2. Calmly speak to gain their attention.
3. Avoid sudden movements that might startle them.
4. Respect their personal space.

Key fact: Something that seems ordinary to a caregiver may feel frightening or threatening to someone living with dementia.

11. Agitation and Restlessness

What do agitation and restlessness look like?

A person who is agitated or restless may:

• Fidget
• Pace
• Hit
• Yell
• Resist care

These behaviours may be connected to discomfort or unmet needs.

Possible causes

Common causes include:

• Pain or physical discomfort
• Anxiety
• Lack of sleep
• Too much stimulation
• Too little stimulation
• Hunger
• Thirst
• Needing to eliminate

How to help

Provide a calm, quiet environment and pay attention to the person’s basic needs.

When communicating:

• Use a gentle, calm voice.
• Avoid giving too many instructions at once.
• Do not overwhelm the person with choices.
• Do not rush the person.
• Remain patient.

Remember: Both too much stimulation and too little stimulation may contribute to restless or agitated behaviour.

12. Aggression and Combativeness

What are aggressive or combative behaviours?

Aggression and combativeness involve behaviours that may threaten or physically harm someone.

Examples include:

• Hitting
• Pinching
• Grabbing
• Biting
• Swearing

Some clients may also spit at others or punch them.

Why might someone become aggressive?

Possible causes include:

• Agitation or restlessness
• Pain
• Fatigue
• Too much stimulation
• Caregiver stress
• Feeling lost or abandoned
• Fear during care

Aggression may happen during personal care activities, especially bathing or dressing, when the person feels frightened or upset.

What the CCA must do

When providing care to someone showing aggression, you are responsible for three important things:

1. Follow the care plan for the care being provided.
2. Respect DIPPS, including dignity, individual preferences, and safety.
3. Protect your own safety and the safety of others.

Use the ABCDs to help understand what happened and consider how to support the person.

For example, the ABCD approach emphasizes giving personal space, approaching from the side, avoiding arguments, and allowing time to settle when the person is resisting but causing no harm.

Safety: Do not ignore aggressive behaviour or put yourself or others at risk. Report unusual or increased responsive behaviours.

13. Screaming as a Form of Communication

Why might a person scream?

In later stages of dementia, people may have severe difficulty communicating.

A person might scream a name, repeat a word, or make loud sounds because they cannot communicate in their previous way.

Possible reasons include:

• Poor hearing or vision
• Pain or discomfort
• Fear
• Fatigue
• Too much stimulation
• Too little stimulation
• Disorientation

Sometimes, the person may scream in response to a family member or caregiver.

Ways to help calm the person

The following approaches may be useful:

• Create a quiet, peaceful environment.
• Play soft music.
• Ensure prescribed hearing aids or eyeglasses are being used.
• Have a family member or familiar caregiver provide comfort.
• Consider therapeutic touch.

Therapeutic touch is described here as a noninvasive approach in which the caregiver gently places their hands on the person in a manner that does not feel threatening.

The purpose is to offer comfort and help the person settle.

Key fact: Screaming may be a person’s way of communicating when dementia makes ordinary communication difficult.

14. Sexual Behaviours and Respecting Privacy

Dementia can affect a person’s awareness of situations and ability to control behaviours.

Some people may demonstrate sexual behaviours in public or toward someone they mistake for a partner.

Caregivers must respond respectfully while protecting privacy and safety.

Behaviours that may occur

A person living with dementia might:

• Touch or fondle their genitals in public.
• Masturbate where other people are present.
• Mistake someone for their sexual partner.
• Attempt to kiss, hug, or touch that person.

Masturbation in public is viewed as sexually aggressive behaviour, although a person living with dementia may not understand why others consider it inappropriate.

Genital touching is not always sexual

This is an important difference.

Touching, scratching, or rubbing the genital area may sometimes indicate physical discomfort rather than sexual interest.

Possible reasons include:

• Infection
• Pain or soreness
• Itching
• Other problems affecting the genitourinary system
• Poor hygiene
• Wet or soiled clothing

If the person has been incontinent or has eliminated, clean them promptly and thoroughly so they are not left wet or soiled.

Possible causes of sexually aggressive behaviours

These behaviours may be associated with:

• Disorientation
• Nervous system disorders
• Adverse medication effects
• Fever
• Dementia
• Acquired brain injury

Do not assume every behaviour has the same cause.

What the CCA should do

If the person repeatedly touches their genitals:

• Observe the behaviour and try to understand the possible cause.
• Report the repeated behaviour to your supervisor.
• Protect the person’s privacy and safety.

A health care provider may assess the person for possible health issues.

If the person masturbates in public:

• Guide the person to their room.
• Provide privacy and safety.

Respect normal expressions of affection.

Holding hands, hugging, kissing, and affectionate touching may be encouraged. Such expressions of affection may help reduce inappropriate behaviours.

A health care provider may also encourage affection from the person’s sexual partner.

Important distinction: Public sexual behaviour and genital touching caused by physical discomfort are not necessarily the same thing. Observe the situation, respect privacy, and report concerns as directed.

15. Repetitive Behaviours

What are repetitive behaviours?

Repetitive behaviours are actions or words a person repeats again and again.

Examples include:

• Asking the same question repeatedly
• Saying the same words
• Folding a napkin over and over

These behaviours may frustrate caregivers or family members, but harmless repetition does not hurt the person.

How should caregivers respond?

Allow harmless repetitive behaviour to continue.

If distraction is helpful, options include:

• Music
• Picture books
• Exercise
• Movies
• Walking

Key fact: A repeated action does not automatically need to be stopped.

16. Hoarding

What is hoarding?

Hoarding means collecting items and storing or hiding them in a guarded way.

A person living with dementia might:

• Hide objects inside drawers.
• Store items beneath the bed.
• Collect many different objects.
• Repeatedly gather one particular kind of item.

What should the support worker do?

Try to understand why the objects may be important to the person.

Ask family members about the possible personal meaning or significance of the collected items.

The important point is to look beyond the behaviour and consider why the person values what they are keeping.

17. Putting the Support Strategies Together

Although responsive behaviours can look different, several approaches are useful across many situations.

Communicate with patience

Use a gentle voice and relaxed body language.

Give the person time to understand and respond. Avoid arguments, unnecessary instructions, and rushing.

Look for possible causes

Consider the person’s physical comfort, surroundings, emotional state, and communication difficulties.

Use the ABCDs to help organize what you observe.

Protect everyone involved

Be aware of aggression, unsafe wandering, and surroundings that may frighten or overwhelm the person.

Follow the care plan and protect your own safety as well as the safety of others.

Report and record important information

Unusual or increased responsive behaviours should be reported.

Using the ABCD approach, report and record:

• What caused or may have triggered the behaviour
• The behaviours you observed
• What you did to support the person

Discuss care concerns and possible approaches with the health care team.

Common Mix-Ups

Wrong Idea	Better Idea
A hallucination and a delusion mean the same thing.	A hallucination involves a false sensory experience. A delusion involves a false belief.
Wandering always happens without a reason.	The person may be looking for someone or something or responding to an unmet need.
Sundowning happens only after sunset.	Changes may begin in the late afternoon and continue into the night.
A secured unit is not a restraint.	A secured unit is considered an environmental restraint.
Screaming always means the person is angry.	Screaming may be a way to communicate fear, discomfort, or another need.
Genital touching always indicates sexual behaviour.	It may be connected to itching, pain, infection, or poor hygiene.
Every repeated action must be stopped.	Harmless repetitive behaviours may be allowed to continue.
Validation therapy means correcting false beliefs.	Validation therapy accepts the person’s perceived reality without arguing.