Anticipating What’s Ahead with Compassion and Clarity

As dementia progresses, changes in behaviour are common — and they can be distressing for both the individual and their carers. From agitation and aggression to withdrawal, wandering, and sleep disturbances, these behaviours are often the result of unmet needs or confusion, not deliberate acts.

While behavioural changes can’t always be prevented, proactive planning can help families respond with understanding, empathy, and structure. Creating a behavioural support plan ensures that everyone — carers, power of attorneys, medical teams, and family members — are equipped to manage challenges calmly and consistently.

With tools like Evaheld, families can document strategies, triggers, preferences, and routines, making it easier to support the individual through every stage with dignity and connection.

Understanding the Why Behind Behaviour

Behaviours in dementia are rarely random. They are often attempts to communicate discomfort, frustration, boredom, fear, or pain.

Common triggers include:

• Physical discomfort (e.g., pain, hunger, infection)
• Environmental changes or overstimulation
• Misunderstood instructions or situations
• Social isolation or lack of routine
• Emotional stress or trauma
• Reactions to medication or unmet sensory needs

According to Dementia Australia, the most effective way to address behavioural changes is to look beyond the behaviour itself — and focus on what the person is trying to express.

The Benefits of Proactive Behavioural Planning

When families and carers plan ahead, they are better able to:

• Reduce crisis responses
• Prevent escalation of behaviours
• Protect the individual’s dignity
• Create a calm, consistent environment
• Share best practices across care settings
• Empower carers with confidence and clarity

This is especially important for the sandwich generation, who are often balancing care responsibilities with children, careers, and other commitments. A written plan reduces decision fatigue and helps all family members respond consistently.

Key Elements of a Behavioural Support Plan

An effective plan should include:

1. Known Triggers

List specific situations, sounds, routines, or environments that are known to cause stress. For example: loud noises, unexpected visitors, unfamiliar care workers.

2. Soothing Strategies

Detail what calms the person when they are distressed. This might include soft music, a particular blanket, walking in the garden, or simply holding hands.

3. Daily Routines

Predictability is important. Outline a preferred structure for meals, hygiene, rest, and activities — even small disruptions can cause confusion.

4. Preferred Communication Styles

List strategies that work best: using short sentences, maintaining eye contact, or using gestures. Include what not to do, such as arguing or rushing.

5. Medical Considerations

Note any medications known to cause side effects, and include protocols for sudden changes or agitation.

You can store and update this plan in the Evaheld Legacy Vault, where carers, clinicians, and authorised family members can access it securely at any time.

Creating the Plan: Step-by-Step

Step 1: Observe and Record

Notice when and where behaviours occur. What happens before and after? Are there any physical or environmental cues?

Step 2: Involve the Person (if possible)

In early stages of dementia, include the person in planning. Ask what makes them feel safe, calm, or overwhelmed. This empowers them and strengthens their voice in their own care.

Step 3: Involve the Care Team

Consult GPs, nurses, therapists, and aged care workers. Their input can provide clinical context, especially if behaviours may be linked to medication or health changes.

Step 4: Review Regularly

As the condition progresses, the plan will need updating. Revisit the strategy every 3–6 months or after a hospital visit, health event, or care transition.

Step 5: Store Digitally for Easy Sharing

Using Evaheld, you can update the plan, add notes, or upload videos and voice messages to help future carers understand the person behind the behaviour.

Supporting Carers with Knowledge and Tools

Carers often feel overwhelmed when faced with sudden changes in behaviour. Proactive planning not only supports the person living with dementia but also protects carers’ mental health and wellbeing.

Resources like Nurse Info offer helpful tips and training for understanding responsive behaviours and promoting calm environments.

Families can also use legacy prompts from the Family Legacy Series to document past interests, hobbies, or routines that may offer comfort and familiarity.

Integrating Behavioural Strategies into Advance Care Planning

Behavioural preferences and calming routines should be included in the person’s advance care plan and advance care directive. These documents aren’t only for medical decisions — they should reflect how the person wants to be treated, what matters most to them, and what brings them peace.

For example, someone might include:

• A preference for non-pharmacological interventions first
• Instructions about specific music or sensory activities
• A request for particular people to visit when distressed
• A note on legacy items or smells that bring comfort

Storing this in the Evaheld Legacy Vault ensures these preferences are preserved and respected.

Common Myths About Behavioural Changes in Dementia

Let’s clarify a few misconceptions:

• Myth: Behavioural changes are intentional.
• Truth: They are almost always expressions of need or confusion.

• Myth: Medication is the best solution.
• Truth: Non-medical strategies are often more effective and safer long term.

• Myth: It’s just part of ageing.
• Truth: Behavioural changes are specific to dementia and should be addressed with tailored care.

According to Advance Care Planning Australia, early conversations about behavioural expectations can reduce family conflict and improve care outcomes.

When Professional Help Is Needed

Seek clinical advice if behaviours:

• Cause harm to the individual or others
• Disrupt sleep or nutrition consistently
• Are linked to sudden cognitive or physical changes
• Do not respond to calming strategies

GPs, dementia specialists, and palliative care teams can assess whether new medical interventions or environmental changes are required.

The Evaheld Blog provides additional tools and articles to help families navigate challenging behavioural transitions with insight and confidence.