DEMENTIA AND MISSING 

My mother, who had Alzheimer's, went missing 12 years ago, she was never found. 

Both in the UK and France, dementia-related wandering is increasingly recognized as a critical safety issue. The Alzheimer’s Society UK reports that around 850,000 people live with dementia, many of whom are at risk of going missing. In France, similar numbers are seen, with Alzheimer’s and related dementias affecting over 1.2 million people.

While exact figures for missing persons with dementia in these countries are not readily available, we know that such incidents are increasing. In the UK, dementia represents 5.5% of the causes of missing persons; this represents over 2000 people per year.  In Ontario, Canada, for example, missing person calls involving individuals with dementia have risen by 10-50% across all regions over the last five years.

Wandering behaviour is thought to affect up to 60% of people with Alzheimer’s at some point. Going missing can lead to severe consequences, including physical harm and trauma, if not found quickly.

When we look at the problem of missing people with dementia, we can see

It requires different search strategies because of the Missing behaviour will differ, as neurodegenerative disorders involve visual-spatial problems

Also, research showed that there is a lack of awareness from carers of the possibility and impact of missing, which means not all incidents are reported to the police. This results in increased risk of harm for the person missing but also to a lack of statistics on the real number of people with dementia missing.

Families might also find it difficult to have discussions within families and be afraid to

Erode the trust between the caregiver and the person receiving care by calling the police.

Best Practices for Prevention and Response

If we look at the UK and France, the best practices to prevent and respond to these cases revolve around a balance of proactive support and effective crisis response. However, it is difficult to see their impact, as initiatives are rarely evaluated.

1. Proactive Support Systems

• Caregiver Training: Training caregivers on recognizing early signs of wandering and implementing preventive steps is crucial. Caregivers can adopt “safe walking spaces” at home or in communities and leverage reminder systems that reduce confusion.

2. Community and Police Involvement

The Herbert Protocol in the UK similar to the Amber Alert for children, quickly broadcast information about missing individuals with dementia to the public. In the UK, the “Herbert Protocol” encourages families to prepare a profile of their loved one’s routine and details. Police can then rapidly access this information if someone goes missing, reducing the time to find the missing person

2. French Initiatives with GPS Tracking

• Technology for Monitoring: GPS devices, wearable trackers, and even door sensors can alert caregivers if a person with dementia leaves a designated area. In France, the Association France Alzheimer has piloted programs using GPS devices with promising results.

• GPS tracking pilot programs are increasingly accepted, especially in rural areas where immediate assistance may be harder to access.

• By involving the person with dementia in early discussions, families can implement this solution respectfully.

While these practices are effective, several ethical issues arise, mainly around autonomy, privacy, and consent.

1. Autonomy vs. Safety

• Many people with dementia may want to retain some level of independence. Limiting their movement, especially through surveillance, can feel restrictive and lead to a loss of dignity.

2. Privacy Concerns

• It is essential to consider the individual’s past wishes and balance this with the family’s need to prevent harm.

3. Consent in Cognitive Decline

• As dementia progresses, the affected person may lose the ability to understand or consent to safety measures, creating a moral dilemma for families and caregivers. When is it ethical to override their wishes?

Ethical Solutions

Addressing these ethical concerns involves balancing safety with respect for dignity.

1. Person-Centered Care

• Solution: Person-centered care respects each individual’s preferences, routines, and personality. For instance, designing personalised “safe zones” within one’s home can encourage autonomy while ensuring safety.

2. Informed Consent with Advanced Directives

• Solution: Encouraging families to create an advance directive can help define safety protocols, tracking permissions, and autonomy preferences while the person can still consent. This preemptive approach respects future autonomy and helps families make tough decisions later.

3. Ethical Use of Technology

• Solution: Use tracking technology only when truly necessary, with regular checks and input from family members to ensure it’s respectful and minimally intrusive.

Collaboration and Community Awareness

Collaboration among healthcare providers, law enforcement, and community members is essential.

  1. Educating the Public

• Educate communities on dementia symptoms, including wandering. Neighbours, shop owners, and transit operators can play a key role by recognizing signs and contacting authorities.

2. Training Law Enforcement

• Provide specialized training for police and search teams on interacting with individuals with dementia.

• Cross-border cooperation: Enhance collaboration between the UK and France in sharing best practices and resources, as exemplified by France's commitment to participating in the European Group of Governmental Experts on Dementia

Addressing the issue of missing persons with Alzheimer's and dementia requires a multifaceted approach. By implementing best practices, addressing ethical concerns, and adopting innovative solutions, we can significantly improve the safety and quality of life for those affected by these conditions.