Understanding How can behaviors be an indicator of unmet needs in people living with dementia?

Approximately 60% of people with dementia will wander at some point, a behavior often stemming from an unmet need. Understanding how can behaviors be an indicator of unmet needs in people living with dementia is crucial for providing person-centered, effective care and support.

Quick Summary

The behaviors of people with dementia often function as a primary form of communication, signaling underlying physical or emotional needs they can no longer express verbally. Recognizing these cues, such as pacing, agitation, or hoarding, enables caregivers to address the root cause, leading to better outcomes and reduced distress for both parties.

Key Points

• Behavior as Communication: For those with dementia, actions and emotional outbursts are often their primary way of communicating unmet needs when words fail.

• Detective Work is Key: Caregivers must become observant detectives, using tools like a daily journal to uncover patterns, triggers, and the underlying causes of challenging behaviors.

• Focus on Feelings, Not Facts: Arguing or correcting someone with dementia is ineffective. Instead, validate the emotion behind the behavior to build trust and de-escalate situations.

• Address Physical Discomfort: Behaviors like fidgeting, groaning, or restlessness can signal physical pain, hunger, thirst, or the need to use the bathroom.

• Acknowledge Emotional Needs: Agitation, searching, or repetitive actions may point toward loneliness, boredom, fear, or a desire for control and meaningful activity.

• Optimize the Environment: Overstimulation, noise, or unfamiliar surroundings can trigger behaviors. Modifying the environment can reduce confusion and anxiety.

• Embrace Person-Centered Care: Understanding an individual's history and preferences helps tailor care strategies to their unique needs, promoting dignity and connection.

Deciphering the Language of Dementia

For individuals experiencing cognitive decline, the ability to articulate needs, feelings, and frustrations is often compromised. As a result, actions and behaviors become the most powerful form of communication. What may seem like a "difficult" or "erratic" behavior is, in fact, a clear message that a need is not being met. These unmet needs can be physical, emotional, social, or environmental, and a thoughtful, patient approach is required to act as a detective and uncover the message behind the behavior.

The Importance of a Non-Verbal Shift

As dementia progresses, verbal communication skills often decline, pushing non-verbal cues to the forefront. This shift means that caregivers must adapt their perspective, viewing behaviors not as a problem to be corrected but as a symptom revealing a hidden issue. The goal is to move beyond reacting to the behavior and instead to understand the underlying reason for it.

Types of Unmet Needs Expressed Through Behavior

Unmet needs in people with dementia can be categorized into several key areas:

Physical Needs

• Pain and discomfort: An individual who is fidgeting, groaning, or guarding a body part might be in pain. Since they can't describe where it hurts, their body language and restlessness are the only indicators. This also includes basic needs like hunger or thirst.
• Fatigue or overstimulation: Increased agitation or withdrawal, especially later in the day, can be a sign of being overtired or overwhelmed by a noisy or chaotic environment.
• Bowel or bladder issues: Restlessness, pulling at clothes, or pacing might indicate the need to use the bathroom.

Emotional Needs

• Loneliness and boredom: Repetitive questions, pacing, or searching behavior can signal a desire for company or meaningful activity. The person may feel isolated and disconnected.
• Fear and anxiety: Sundowning, where confusion and agitation worsen in the evening, can be caused by fear of the dark or misinterpreting shadows. Suspiciousness or paranoia may also stem from confusion.
• Need for control: A person who is resisting care or refusing to cooperate may be trying to exert some control over their life in a world that feels increasingly out of their hands.

Environmental Needs

• Disorientation: Wandering can be a sign that the individual is looking for something familiar, like a previous home or a person from their past. Changes in routine or environment can trigger this behavior.
• Sensory sensitivity: Overstimulation from loud noises, bright lights, or excessive clutter can cause irritability and agitation. Conversely, a lack of stimulation can lead to boredom.

Observing and Investigating the Behavior

Becoming a good observer is the most critical skill for a dementia caregiver. A systematic approach can help in identifying patterns and triggers.

The Detective's Journal

Keeping a journal to track behaviors can provide invaluable clues. Log the following details:

1. Time of day: Does the behavior happen at a specific time? For example, is it more frequent in the evening (sundowning)?
2. Activity: What was happening just before the behavior started? Were you trying to help with dressing or bathing?
3. Environment: Where did the behavior occur? Was the room noisy or crowded? Was the lighting low?
4. Cues: What did the person's body language or non-verbal cues communicate?
5. Response: How did you respond? What was the outcome?

The Power of Validation

Rather than correcting or confronting a person with dementia, validating their feelings can de-escalate a difficult situation. For example, if they are anxious about going "home" even though they are home, acknowledging their distress by saying, "You feel like you need to go home, I understand," is more effective than arguing with them. Distraction or redirecting can then be used after the feeling has been acknowledged.

Behavioral Indicators vs. Underlying Needs

Behavioral Indicator	Potential Unmet Need	Caregiver Strategy
Wandering/Pacing	Boredom, discomfort, searching for something or someone, disorientation.	Redirect with a purpose, suggest a safe walk, check for pain or toileting needs.
Repetitive Questions/Actions	Anxiety, need for reassurance, memory loss, boredom.	Provide a calm, reassuring answer; use distraction with a simple activity.
Agitation/Aggression	Pain, fear, overstimulation, unmet physical need (e.g., hunger).	Reduce environmental stimuli, check for pain, speak calmly, back away to de-escalate.
Hiding/Hoarding Objects	Need for security, feeling of loss, trying to protect possessions.	Create a "rummaging drawer" with safe, familiar items; avoid scolding.
Resistance to Care (Bathing/Dressing)	Loss of control, sensory issues (water temperature), pain, fear.	Offer simple choices, explain steps clearly, make the environment calm and warm.

Person-Centered Care as a Framework

At the core of understanding and responding to these behaviors is person-centered care. This approach focuses on the individual's history, preferences, and remaining abilities, rather than just their diagnosis. The goal is to build a meaningful relationship and create a supportive environment. The Alzheimer's Association provides excellent resources on this topic. [https://www.alz.org/help-support/caregiving/stages-behaviors/challenging-behaviors]

Conclusion: The Goal is Connection, Not Control

Navigating the behavioral expressions of unmet needs in people with dementia requires a fundamental shift in perspective. Instead of focusing on controlling or stopping the behavior, the focus should be on understanding and addressing the root cause. This patient, compassionate, and investigative approach not only reduces distressing behaviors but also strengthens the connection and improves the quality of life for the person living with dementia. The care journey becomes one of discovery, not just management, fostering dignity and respect every step of the way.

Frequently Asked Questions

Why do people with dementia exhibit challenging behaviors like wandering or aggression?

Challenging behaviors are often not intentional but a way for the person to communicate an unmet need, such as pain, fear, hunger, or disorientation. They may also be reacting to environmental factors like noise or unfamiliarity.

How can I tell if a behavior is caused by pain?

Look for non-verbal signs of pain, such as facial grimacing, groaning, guarding a body part, or increased restlessness and agitation. Since they may not be able to articulate their pain, observing these physical cues is critical.

What should I do if a person with dementia is constantly repeating the same question?

Repeating questions often stems from anxiety or memory loss. Provide a calm, reassuring answer, and then try distracting them with a different, engaging activity. Avoid showing frustration, as this can heighten their anxiety.

Why does a person with dementia resist help with personal care like bathing?

Resistance to care can indicate a loss of control, fear, or discomfort. The water temperature might be too hot or cold, or they may feel anxious about the process. Approach slowly, explain each step simply, and offer choices to restore some control.

How can I manage "sundowning" behaviors in a person with dementia?

Sundowning—increased agitation in the evening—can be managed by maintaining a consistent daily routine, ensuring adequate light exposure during the day, and minimizing stimulation in the evening. Check for hunger, thirst, or pain before dusk.

Are hiding or hoarding behaviors indicators of unmet needs?

Yes, these behaviors can stem from a need for security or a feeling of loss. Creating a designated drawer or box with safe, familiar items can provide a sense of purpose and control.

Is it normal for a person with dementia to lash out or use inappropriate language?

Inappropriate language or aggression is not a personal attack but a symptom of the disease, often triggered by frustration, fear, or an inability to communicate. Responding calmly and redirecting their attention is more effective than engaging in an argument.

What is the best way to respond to a person with dementia's emotions?

Focus on their feelings rather than the factual details. Acknowledging their emotion with a simple, reassuring statement like, 'I can see that you're upset,' and offering comfort, can help them feel heard and understood.