Do people with dementia stalk? Understanding the Behavior Behind Suspicion

According to the Alzheimer's Society, dementia-related behaviors that may seem like 'stalking' are actually often caused by fear, anxiety, and confusion in the person with dementia. It's crucial for caregivers to understand the underlying reasons for these behaviors, not take them personally, and learn effective coping strategies.

Quick Summary

Behaviors that appear like stalking, such as shadowing or constant checking, are common symptoms of dementia. They are not intentional but rather stem from feelings of confusion, fear, and a need for reassurance due to memory loss and brain changes. Understanding the root cause is key to a compassionate response.

Key Points

• Behavior is a Symptom: People with dementia who exhibit trailing or suspicious behaviors are not intentionally stalking; it is a symptom of their disease, driven by confusion and anxiety.

• Understand the Root Cause: Underlying issues like memory loss, disorientation, fear of being alone (shadowing), and paranoid delusions are the real drivers of these behaviors.

• Be Aware of FTD Nuance: While less common, Frontotemporal Dementia (FTD) can sometimes lead to more intentional and socially inappropriate behaviors, a key distinction for medical professionals.

• Use Compassionate Management Strategies: Instead of arguing or taking it personally, caregivers should use validation, distraction, routine, and calming environmental techniques.

• Recognize Delirium: A sudden increase or change in suspicious behavior could indicate an underlying medical issue, such as an infection (delirium), and warrants a doctor's consultation.

• Prioritize Caregiver Support: Coping with these difficult behaviors can be emotionally draining. Caregivers must seek support and remember that the accusations and fear are a product of the disease.

Distinguishing Dementia Symptoms from Intentional Behavior

The word "stalking" implies a malicious, intentional act, which is not the case for individuals living with dementia. A person with a neurocognitive disorder like dementia is experiencing changes in their brain that affect their memory, reasoning, and emotions. As a result, they may exhibit repetitive or trailing behaviors, but these are symptoms of the disease, not a purposeful attempt to harm or harass. For caregivers, recognizing this fundamental difference is the first step toward a more compassionate and effective approach.

Common Dementia Behaviors That May Seem Like Stalking

Several specific behaviors can be misinterpreted as stalking. Knowing what these actions are and what triggers them can help caregivers respond with patience and understanding.

Shadowing and Trailing

This behavior involves the person with dementia constantly following their caregiver. It often arises from anxiety and the fear of being left alone. The caregiver becomes a source of comfort and security in a confusing and unpredictable world. When the caregiver is out of sight, the person with dementia may feel lost and frightened, prompting them to search for their "safety net."

Repetitive Checking

Individuals may repeatedly check on a loved one, calling their name or asking where they are, even if they were just with them. This is a direct result of short-term memory loss and disorientation. The person doesn't remember having just seen the caregiver and is driven by an underlying need for security.

Paranoid Delusions

Some people with dementia, especially in middle to late stages, may develop paranoid delusions, which are false beliefs not based in reality. They might believe family members are stealing their possessions, that people are watching them, or that a spouse is unfaithful. These untrue beliefs can cause the person to closely monitor or trail a loved one, convinced they are uncovering a plot against them. From their perspective, the delusion is very real.

The Role of Fear and Confusion

Fear and confusion are central to many dementia-related behaviors. The disease damages parts of the brain, making it difficult for a person to process information and make sense of their surroundings. This decline can trigger a deep-seated fear of being alone, abandoned, or unsafe. The world becomes a frightening place, and the person with dementia instinctively seeks out what is familiar and comforting.

Key triggers for these behaviors include:

• Changes in routine or environment: A new environment or unexpected change can be disorienting and increase anxiety.
• Unmet needs: The person may be hungry, thirsty, in pain, or needing to use the restroom but cannot communicate it effectively. Wandering or following may be their way of signaling an unmet need.
• Overstimulation: Too much noise, activity, or a cluttered environment can overwhelm the senses and trigger confusion and restlessness.

The Nuance of Frontotemporal Dementia

While most cases of trailing and suspicion stem from anxiety and memory loss, one specific type of dementia warrants a special mention: Frontotemporal Dementia (FTD). FTD affects the frontal and temporal lobes of the brain, which control behavior and personality. A study published in JAMA Network Open found that patients with FTD showed higher instances of socially inappropriate and criminal behavior, including threats and actual stalking, compared to those with Alzheimer's disease. This is because the brain areas governing inhibition and social conduct are compromised. It is a distinct and rare aspect of dementia behavior but an important distinction for professionals and families to understand.

Practical Strategies for Managing the Behavior

Effectively managing these behaviors requires patience, empathy, and creative problem-solving. Here are some non-pharmacological techniques:

• Create a Consistent Routine: A predictable daily schedule can help the person feel safe and more in control, reducing anxiety.
• Provide Reassurance and Validation: Instead of arguing or correcting them, reassure the person that they are safe and you are there for them. If they repeatedly ask a question, answer calmly and patiently each time.
• Redirection and Distraction: Gently shift their focus to another activity. Look at a photo album, offer a favorite snack, or put on some familiar music.
• Address Unmet Needs: Look for underlying causes. Are they hungry? Tired? In pain? Sometimes the behavior is a way of communicating a basic need.
• Maintain a Calm Environment: Reduce clutter, noise, and other sensory overload that can trigger agitation.

A Caregiver's Guide to Perspective

It's easy for caregivers to feel hurt or frustrated by persistent shadowing or accusations. It's vital to remember that it's the disease, not the person, speaking. Here is a comparison to help reframe the perspective.

Person with Dementia's Reality	Caregiver's Perception
Feels scared and insecure.	Feels followed and overwhelmed.
Has forgotten they just saw you.	Thinks they are being checked up on excessively.
Believes a delusion is real.	Feels unfairly accused and mistrusted.
Is communicating an unmet need.	Perceives the behavior as clingy or demanding.

Remember, your emotional experience is valid, but the behavior is a symptom. Caregivers need a strong support system to cope. The Alzheimer's Association offers resources to help with difficult behaviors, including suspicion and delusions. Visit the Alzheimer's Association website for guidance.

Conclusion: The Importance of Understanding

In summary, the unsettling behaviors that can be mistaken for stalking in people with dementia are a direct result of brain changes caused by the disease. They are expressions of fear, anxiety, and confusion, not malice. Understanding the root causes—whether general dementia symptoms, paranoid delusions, or a specific type like FTD—allows caregivers to respond with empathy rather than frustration. Implementing strategies like maintaining routine, providing reassurance, and addressing unmet needs can significantly improve the situation for both the person with dementia and their caregiver. By reframing the behavior, we can move from feelings of being victimized to an informed and supportive approach to care.

Frequently Asked Questions

Is it normal for a person with dementia to follow me everywhere?

Yes, it is a very common behavior often called 'shadowing.' It is typically caused by fear and anxiety, as the person sees you as their source of comfort and security in a confusing world. They are afraid of being alone and losing sight of you.

Why does my mom with dementia accuse me of stealing her things?

Memory loss and confusion can cause your mom to misplace items and then forget where she put them. Because her brain is unable to recall the correct information, it fills in the blanks with false beliefs, or paranoid delusions, such as someone stealing her belongings. These accusations are not a reflection of you but a symptom of the disease.

How should I respond when a person with dementia is being paranoid?

Do not argue or try to reason with them, as this will only increase their distress. Instead, offer calm reassurance and validation of their feelings. Acknowledge that they feel upset or afraid, and then try to distract them with a new activity or a change of scenery.

Could my loved one's suspicious behavior be caused by something else?

Yes. While a hallmark of dementia, a sudden onset or worsening of paranoid behavior could be a sign of delirium, which is often caused by an underlying medical issue like a urinary tract infection (UTI) or other illness. You should consult a doctor to rule out other causes.

What is the difference between dementia paranoia and intentional malice?

Dementia paranoia is a symptom of brain changes, where the person genuinely believes a false reality. Intentional malice comes from a sound mind with the intent to cause harm. With dementia, the person lacks the capacity for the intentional harm associated with true malice.

How can I reduce the shadowing behavior in my loved one?

Try creating a predictable daily routine to provide a sense of stability. Engage them in purposeful activities, like folding laundry or looking at a photo album, to provide a sense of purpose. A calm, quiet environment can also reduce anxiety that triggers the behavior.

Is it different if the person has Frontotemporal Dementia (FTD)?

Yes, it can be. While less common, FTD can cause damage to the parts of the brain that control social behavior and inhibition. This may lead to a higher likelihood of genuinely inappropriate or socially unacceptable actions compared to Alzheimer's, so a correct diagnosis is crucial.