What to do when a dementia patient wants to leave?

According to the Alzheimer's Association, wandering is a common behavior among people with dementia, affecting 6 out of 10 individuals. If you're wondering what to do when a dementia patient wants to leave, understanding the emotion behind the request is the first step toward effective and compassionate care.

Quick Summary

When a dementia patient wants to leave, caregivers should avoid arguing or reasoning, and instead use compassionate redirection, distraction, and reassurance to address the underlying emotion of insecurity or anxiety.

Key Points

• Validate feelings, don't argue: Instead of correcting them, acknowledge their feelings of wanting to leave by saying, "It sounds like you really want to go home. We'll make sure you're safe here."

• Redirection and distraction are key: Shift their focus to a pleasant, familiar activity immediately after validating their feelings. Examples include looking at old photos or listening to music.

• Address underlying needs: The plea to "go home" may be masking a physical need like hunger, thirst, or discomfort. Check if they might need a snack, drink, or have pain.

• Create a safe environment: Use high-mounted locks, door alarms, and other safety measures to prevent wandering, and inform trusted neighbors of the situation.

• Use sensory comforts: Engage their senses with familiar music, comforting items like a soft blanket, or pleasant aromas to provide reassurance and calm.

• Establish a routine: A predictable daily schedule can reduce anxiety and the triggers for wanting to leave, as a consistent routine provides a sense of security.

• Have an emergency plan: If wandering occurs, act quickly. Call 911 after 15 minutes of searching and consider using GPS tracking devices and registry programs like Safe Return.

Understanding the Psychology of 'Wanting to Go Home'

When a person with dementia expresses a desire to leave, they are often not referring to their current physical location. Instead, "home" represents a sense of safety, comfort, and familiarity from an earlier, clearer period of their life. This plea is an expression of deep-seated anxiety, fear, or confusion caused by their changing brain chemistry. Understanding this emotional root is crucial for a compassionate response, as logical explanations will only increase their frustration.

Why a Dementia Patient Might Want to Leave

Several factors can trigger the desire to leave, and identifying these can help you address the root cause:

• Disorientation: They may not recognize their current surroundings, believing they are in an unfamiliar place like a hotel or a stranger's house.
• Emotional Need: The plea might signal a need for comfort, reassurance, or a longing for a person or time from their past that made them feel secure.
• Physical Discomfort: The person may be hungry, thirsty, in pain, or need to use the restroom but lacks the words to express their needs directly. The desire to leave is a simplified way to seek relief.
• Sundowning: Agitation and confusion often increase in the late afternoon and evening, a phenomenon known as sundowning. This can trigger a stronger urge to go home.
• Boredom or Restlessness: A lack of stimulating activity can lead to restlessness. For a person who was always active, the feeling of being confined can lead to an urge to escape.

Practical Strategies for Compassionate Redirection

Attempting to correct a person with dementia is counterproductive and can lead to increased agitation. Instead, caregivers should focus on validating feelings and redirecting attention.

Validate and Reassure

The most important initial step is to respond with empathy. Try saying phrases like: "It sounds like you really want to go home. We'll make sure you're safe here until then." This acknowledges their feeling without confirming or denying the request. A gentle touch, a hug (if appropriate), or a soothing tone of voice can provide immense comfort.

Distract with a Purposeful Activity

Once their feelings are validated, redirecting their attention to a pleasant or familiar activity can help. The key is to find something that engages them and fits their interests. This could be:

• Looking at old photo albums and reminiscing about happy memories.
• Listening to their favorite music from their youth.
• Engaging in a simple task like folding laundry or watering plants.
• Preparing a favorite snack or drink together in the kitchen.

Engage the Senses

Sensory stimulation can be a powerful tool for calming agitation. You can try incorporating sensory elements into your distraction plan:

• Sound: Play familiar, calming music.
• Sight: Look at photo albums or watch a favorite movie.
• Smell: Use aromatherapy with a soothing scent like lavender, or bake cookies to fill the air with a pleasant, nostalgic aroma.
• Touch: Offer a soft blanket, a stuffed animal, or a therapy doll for comfort.

Creating a Safe and Soothing Environment

Prevention is often the best strategy. Modifying the living environment can minimize triggers and reduce the risk of wandering.

Environmental Modifications

• Locks: Install high-mounted locks or keypad locks that are out of sight or difficult for the person to operate independently. Doors can also be disguised with curtains or wallpaper to blend in with the surrounding walls.
• Alarms: Use pressure-sensitive mats or door/window alarms that notify you if the person attempts to exit. Some smart home devices can also be configured to alert caregivers.
• Sensory Cues: Place a dark-colored mat in front of an exit door. To a person with dementia, the dark mat may look like a hole, making them less likely to step on it.

Daily Routine and Triggers

• Establish a Routine: A predictable daily schedule can reduce anxiety. Consistency in mealtimes, wake-up times, and bedtime can provide a sense of stability.
• Identify Triggers: Keep a journal to track when the desire to leave occurs. Noticing a pattern—for example, every day around 4 p.m.—allows you to proactively introduce a distracting activity before the agitation begins.

Comparison of Caregiving Strategies

Strategy	What it Involves	Pros	Cons
Logical Reasoning	Explaining that they are already home.	Requires no preparation.	Almost always fails, increases agitation and frustration for both parties.
Validation & Reassurance	Acknowledging their feelings calmly and reassuring them of their safety.	Builds trust, calms the person, and meets their emotional needs.	May not immediately resolve the situation, requires patience.
Distraction & Redirection	Shifting their focus to a pleasant activity after validating their feelings.	Highly effective for many, turns a negative moment into a positive one.	Requires creativity and knowing the person's interests; may not always work.
Environmental Modification	Securing doors and creating a safe space.	Prevents potential danger from wandering, offers peace of mind.	Can feel restrictive; must balance safety with independence.
Seeking Professional Help	Consulting doctors or joining support groups.	Provides expert guidance and new strategies; offers caregiver support.	Requires time and potentially resources.

What to Do During an Actual Wandering Incident

If your loved one does manage to leave, immediate action is critical. Have a plan in place before it happens.

Immediate Steps

• Search Immediately: Start searching the immediate vicinity first. Wandering patterns can sometimes be predictable (e.g., following a specific path they always took).
• Call for Help: If you can't find them within 15 minutes, call 911. Provide a recent photo and a description of what they are wearing.
• Utilize a Registry: Enroll your loved one in programs like the MedicAlert® + Alzheimer's Association Safe Return®, which provides a 24/7 emergency service for wanderers.

Community Support and Technology

• Inform Neighbors: Discreetly inform trusted neighbors about your loved one's condition and ask them to call you if they see them alone.
• GPS Tracking: Consider a GPS tracking device. These can be worn as a bracelet, pendant, or placed in a shoe, providing real-time location tracking for peace of mind. The Alzheimer's Association offers resources and guidance on such technologies.
• Create a Wandering Packet: Keep an emergency packet ready with a recent photo, a list of frequent destinations (former home, workplace), and relevant medical information to give to emergency responders.

The Importance of Caregiver Self-Care

Dealing with a dementia patient who wants to leave is emotionally draining. It is vital for caregivers to prioritize their own well-being to avoid burnout.

• Take a Break: Use respite care services to give yourself time off. Even a short break can help you reset and return with renewed patience.
• Join a Support Group: Sharing experiences with other caregivers can provide valuable emotional support and new strategies. The Alzheimer's Association has a helpline and online community for support.
• Manage Stress: Engage in activities that help you relax, such as hobbies, meditation, or light exercise. Recognize that it is a disease causing the behavior, not a personal failing.

In conclusion, responding to a dementia patient who wants to leave requires a compassionate, patient, and multi-faceted approach. By understanding the underlying emotional needs, using effective redirection techniques, and implementing safety precautions, caregivers can provide comfort while minimizing risk. Remembering that you are not alone in this journey and utilizing available support systems is key to sustainable, loving care. For more guidance and resources, you can always turn to the Alzheimer's Association at https://www.alz.org/.

Frequently Asked Questions

Why does a dementia patient keep asking to go home, even when they are home?

For a person with dementia, "home" often represents a nostalgic feeling of safety and security, not their current physical residence. Their memory loss may prevent them from recognizing their current location as home, so they are really expressing an underlying anxiety or discomfort.

Is it okay to lie to a dementia patient by saying, 'We'll go later'?

This is a common and compassionate strategy known as therapeutic lying. Saying, "We'll go later, after we have some tea" can provide immediate comfort and validation without creating conflict. It's often more effective than attempting to use logic, which will likely cause frustration.

How can I prevent a dementia patient from wandering and leaving the house?

You can use several safety measures, such as installing high-mounted locks out of their sightline, using door alarms, or placing a dark-colored rug in front of an exit door, which can appear as a barrier to someone with dementia. Proactively engaging them with activities during high-risk times, like late afternoons, can also help.

What should I do if a dementia patient becomes agitated when I don't let them leave?

When agitation occurs, avoid arguing. Respond calmly with reassurance and validation, acknowledging their feelings. Try to de-escalate the situation by using a soothing tone of voice, making eye contact, and then shifting their attention to a comforting distraction, like music or a simple task.

Should I call the police if my loved one with dementia wanders away?

Yes, if you cannot find them within a short period (around 15 minutes), you should call 911 immediately. Have a recent photo and a list of their frequent destinations ready. Time is critical in a wandering emergency.

What is 'sundowning' and how does it relate to wanting to leave?

Sundowning is a phenomenon where people with dementia experience increased confusion, agitation, and anxiety in the late afternoon and evening. This heightened state of stress often triggers or exacerbates the urge to leave and seek a more familiar, safe place (their perception of "home").

What if the patient's desire to leave is constant and redirection doesn't work?

If consistent redirection fails, you may need to reassess the situation. Consider consulting their doctor to rule out underlying medical issues or medication side effects. Exploring professional care options, such as adult day programs or memory care facilities, might also be necessary to ensure their safety and your well-being as a caregiver.