Understanding Wandering in Autism and Dementia: Risks and Prevention

Wandering, also known as elopement, is a significant concern within the autism community and among individuals with dementia and other disabilities. This behavior involves individuals leaving a safe environment without notice, often leading to dangerous situations. Understanding the risks, reasons, and preventive measures associated with wandering can help families and caregivers manage this behavior more effectively.

Risks of Wandering

Children and adults with Autism Spectrum Disorder (ASD) and individuals with dementia who wander are at increased risk of serious harm. The primary dangers include:

• Drowning: Nearly 71% of wandering-related deaths in children with autism are due to drowning.
• Traffic Injuries: Approximately 65% of wandering incidents involve a close call with traffic.
• Exposure to Elements: Wandering can lead to dehydration, heat stroke, hypothermia, and other environmental hazards.
• Encounters with Strangers: Individuals may not recognize danger from strangers, increasing the risk of exploitation or harm.

For people with dementia, critical wandering episodes have a high mortality rate of 20%, making it one of the most dangerous behavioral manifestations of the condition.

Who is Prone to Wandering?

Wandering is particularly prevalent among individuals with autism and dementia. Studies indicate that nearly half of children with autism attempt to wander or bolt from a safe environment at least once after the age of four. The risk is higher for those with severe autism and intellectual disabilities. Similarly, six in ten people living with dementia will wander at least once, and many do so repeatedly.

Statistics on Wandering

• Prevalence: Nearly 49% of children with autism have attempted to wander off.
• Age Factor: Wandering is most common in children aged 4-7, with 46% of children with autism in this age group attempting to wander, compared to only 11% of their unaffected siblings.
• Locations: Common places from which children wander include their own home (74%), stores (40%), and schools (29%).

Reasons for Wandering

Understanding why individuals with autism or dementia wander can help in developing effective prevention strategies. Common reasons include:

• Exploration and Enjoyment: Many children with autism wander because they enjoy running or exploring new places.
• Escape from Stress: Wandering can be a way to escape from stressful or overwhelming situations, such as loud noises or crowded environments.
• Attraction to Specific Stimuli: Individuals may be drawn to specific objects or places, such as water bodies, traffic signs, or favorite locations.
• Seeking Sensory Input: Some may wander to seek out sensory stimuli that they find comforting or stimulating, like water or certain textures.

For individuals with dementia, additional reasons include:

• Confusion about Location or Time: They may not recognize their surroundings or understand the time of day.
• Attempting to Fulfill Former Obligations: They might try to go to work or return to a former home.
• Seeking Familiarity: They may wander in search of familiar people or places.

Preventive Measures

Preventing wandering requires a multifaceted approach. Here are some strategies:

• Secure the Home: Install locks, alarms, and fences to prevent unsupervised exits. Use visual prompts like stop signs on doors and windows.
• Use Identification and Tracking Devices: Equip individuals with ID bracelets or wearable tracking devices to help locate them quickly if they wander.
• Teach Safety Skills: Enroll children in swimming lessons and teach them road safety, stranger danger, and other critical safety skills.
• Behavioral Interventions: Work with professionals to develop communication and behavior strategies that address the reasons behind wandering.
• Community Awareness: Inform neighbors, schools, and local law enforcement about the individual’s tendency to wander and provide them with contact information and safety plans.

For people with dementia, additional strategies may include:

• Providing Structured Activities: Engage them in meaningful activities throughout the day.
• Planning for High-Risk Times: Be aware of times when wandering is more likely, such as during “sundowning” in the early evening.
• Meeting Basic Needs: Ensure all basic needs are met, including toileting and nutrition.

Where to Go for Help

Several organizations and resources are available to assist families dealing with wandering:

• National Autism Association: Offers resources like the Big Red Safety Box, which includes tools to prevent wandering.
• The Autism Society: Safety programs and up to date information about wandering and tips to prevent it.
• Autism Speaks: Provides safety kits and tips for preventing wandering.
• Alzheimer’s Association: Provides safety kits and tips for preventing wandering in dementia patients.
• Project Lifesaver: Helps track individuals who wander using radio frequency technology.
• National Center for Missing & Exploited Children: Provides training and resources to support families and first responders in managing wandering incidents.
• AngelSense: Offers GPS tracking devices specifically designed for individuals with autism. Their technology includes features like real-time tracking, geofencing alerts, and two-way voice communication, which can be crucial in preventing and managing wandering incidents.

These resources can provide valuable support, information, and tools to help families prevent wandering and respond effectively if it occurs. It’s important to explore multiple options and find the solutions that work best for your specific situation.

Wandering is Not a Sign of Bad Parenting

It’s crucial to emphasize that wandering in children with autism or individuals with dementia is not a reflection of poor parenting or caregiving. Even the most vigilant and attentive parents and caregivers can experience this challenging situation. Here’s why:

• Prevalence: Studies show that nearly half of children with autism attempt to wander or bolt from safe environments. This high frequency indicates that wandering is a common behavior associated with autism, rather than a result of negligent care. Similarly, six in ten people living with dementia will wander at least once.
• Autism-specific behavior: Wandering in autism is often driven by factors related to the condition itself, such as:
• Seeking out objects or places of interest
• Escaping overwhelming sensory stimuli
• Pursuing special interests
• Enjoying exploration without a full understanding of danger
• Dementia-specific behavior: Wandering in dementia can be driven by confusion, attempts to fulfill former obligations, or seeking familiar people or places.
• Unpredictability: Individuals may suddenly bolt or wander without warning, even when closely supervised. This impulsivity can catch even the most attentive caregivers off guard.
• Skill at elopement: Many individuals develop impressive abilities to overcome safety measures, such as unlocking doors, climbing fences, or finding alternative exits.
• Expert acknowledgment: Researchers and specialists recognize that wandering is not linked to caregiving style but is instead associated with the nature of the underlying condition.
• Sibling comparison: Studies show a stark contrast in wandering behavior between children with autism and their neurotypical siblings, further supporting that it’s related to autism rather than parenting.

Parents and caregivers should focus on developing comprehensive safety plans and seeking guidance from professionals rather than feeling guilty about these incidents. Experiencing a wandering incident does not make them bad caregivers. Instead, it highlights the unique challenges associated with autism and dementia and the need for specialized safety strategies and community support.

Conclusion

Wandering is a serious and common issue in the autism community and among individuals with dementia, posing significant risks to those affected. By understanding the reasons behind wandering and implementing comprehensive preventive measures, families and caregivers can help keep their loved ones safe. Engaging with community resources and educating those around you can further enhance safety and provide peace of mind.

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