Changes in how grief, pain, anger or overwhelm might be expressed

Overview

Actions, words or gestures presented by a person living with dementia can be a way of responding to something negative, frustrating or confusing in their social and physical environment.

Examples of changes in behaviour that a person living with dementia may experience can include:

• Aggression
• Agitation
• Walking about
• Restlessness
• Hallucinations
• Paranoia
• Making unexpected noises
• Becoming more withdrawn

These can be the result of changes in the brain or a person's experience of the environment, care approach or situation.

Understanding changes in behaviour is easier when we also understand that:

1. All changes in behaviour (words, gestures, actions) have meaning.
2. Behaviour is a way of communicating meanings, needs and concerns.
3. To understand why a person's behaviour may have changed, we must consider the physical, intellectual, emotional, environmental, social  and situational factors.

When someone's behaviour changes, reflect on whether it is a problem for the person living with dementia or is it more a problem for the people around them. Will the solution cause more anxiety? If so, to whom? Will changing expectations affect the problem?

Considerations

While this page offers strategies for in the moment, think about the true meaning behind a change in behaviour. Consider these questions regarding what happened before, during and after the event:

• Physical – Are basic needs met? Is a person in discomfort or pain? What changes in their physical condition do I see (i.e. grimacing, eating patterns, energy level)?
• Intellectual – Has the person experienced recent changes in memory? Have they been showing impulsive behaviour (swearing, sexual behaviour)? Are they struggling with speech or sequenced tasks (getting dressed)?
• Emotional – Have you noticed increased tearfulness or anxiety? Does the person seem lonely? Have they exhibited any new unusual behaviour (i.e. suspicious of others)?
• Capabilities – Can a person do more than you realize? Does a person understand that he may need help?
• Environment – Is there too much noise or too large of a crowd around the person? Is the lighting poor, making it hard for them to navigate? Is there enough stimulation?
• Social – Do any childhood, early adulthood or employment experiences offer insight? What do we know about the person's religion or culture?
• Actions of Others – What am I doing or not that may contribute to changes in a person's behaviour?

Understanding specific changes in behaviour: Aggression and agitation

Aggression involves physical and emotional outbursts (i.e., shouting, hitting). Anger reflects many feelings and occurs for reasons that aren’t clear. We can try to figure out why but also we must respond to the behaviour.

Agitation may involve the person pacing nervously, drums fingers, etc. for long periods of time.

Ultimately, we can’t expect the person with dementia to change; we must do the changing. We need to understand how dementia might affect a person, be patient and accept who the person is in this moment.

It is important to note that if your personal safety is at risk, leave the room for a safer place, even the hallway. Don’t get into a position where you can’t leave the room. Once you’ve left, get help immediately.

If changes in behaviour begin to impact the quality of life of the person you are caring for or those around them, you should consult with the person's health-care team.

Possible causes

Aggression

• Fatigue or disruption of sleep pattern
• Grief as the person's world becomes less and less familiar
• Pain or physical discomfort
• Sensory overload
• Feeling lost, insecure or forgotten
• Fear of a situation or a person he finds threatening
• Dementia may lessen a person's control over emotions
• As dementia progresses, the person may struggle to express anger and will do so physically (hitting, biting, kicking) or verbally (shouting, name-calling).
• May happen suddenly without any apparent reason or after a stressful event

Agitation

• Environmental, such as changes to living arrangements or in caregivers
• Fear of bathing, unknown surroundings or having clothes changed
• Dehydration
• Fatigue
• Feeling overwhelmed or confused

Tips and strategies

Responding to aggression

• Watch for a sudden increase in movement to indicate anxiety.
• Respond in a supportive manner and reassure in a gentle voice.
• Reduce noise.
• Ensure that a consistent routine is maintained.
• Speak slowly and use repetition.
• Break activities into manageable steps.
• Distract the person.
• Approach slowly from the front at the same eye level.
• Leave the room for a “time out.” Remember it is the condition, not the person.
• Avoid arguing or expressing anger or irritation, verbally or non-verbally.

Example

You are having dinner with your parent. You watch them struggle to cut their meat and get the food to their mouth. You offer to help and begin to cut their food. They let you for a minute, but then grab your wrist and threaten to “smack you if you try that again!” Your parent has never laid a hand on you and you are horrified that this just happened.

Don’t

• Grab their hand and try to force them to let you go.
• Yell in surprise.
• Explain that you were trying to help.

Do

• Remain calm and don’t react.
• Let your arm go limp, apologize and distract them with conversation.
• Once they let go, give them space to cool down. Later on, think about what was behind their anger. Were they embarrassed? Could they have thought you were taking their food?

Responding to agitation

• Redirect person’s attention.
• Remain calm and positive
• Use visual and verbal cues (gestures)
• Simplify tasks and routines
• Whenever possible, give a person options. But offer one or two choices to avoid overwhelming them. (e.g. do you want to wear this blue shirt or this red shirt? vs. what shirt do you want to wear?)

Example

During a visit with their partner, a person fidgets, picks at their clothes and seems restless. They can’t sit still and their partner is getting upset with their behaviour.

Don’t

• Ask them to stop picking.
• Tell them to calm down
• Raise your voice

Do

• Give them something to hold.
• Distract their attention with music Talk about a happy moment in their life.
• Go for a walk.
• Consider the environment: is it too noisy or bright?
• Consider the time of day: are they tired?