Dementia and missing people
This guidance is for police officers and search and rescue professionals responding when a person with dementia is missing.
It is estimated that 70% of people living with dementia will go missing at least once – and when this happens, every minute counts.
The Herbert Protocol is a national scheme to help find a person with dementia who goes missing. Our dementia specialist Admiral Nurses explain what is involved.
If the person is missing now
Call 999 if the person may be vulnerable to harm or in immediate
danger. Otherwise, call 101 or use your local police force’s online
reporting service where available.
You do not need to wait 24 hours. Do not delay contacting the police while you search.
Tell the police that the person has dementia and share:
- their completed Herbert Protocol form, if they have one
- a recent photograph and what they are wearing, if known
- where and when they were last seen
- any medication, health conditions or mobility needs
- places that are important to them and routes they often use
- information from a phone, smartwatch or location device, if available
What is the Herbert Protocol?
When a person with dementia goes missing, it is vital that they are found and returned to their normal place of residence as quickly as possible. The longer they are missing, the greater the risk of them coming to harm – whether through accident, illness or dangers from other people.
The Herbert Protocol is a UK-wide scheme that helps the police and other emergency services find a person living with dementia who goes missing. It involves filling in a form with essential information about the person that can be used to help locate them.
The form is completed in advance and a copy kept safely online and/or at the person’s home or care home. If the person goes missing, the form can be handed to the police, giving them the information they need to start searching straight away – rather than family and friends having to remember details in a stressful situation.
The form records important details about the person, including:
- their physical description and a recent photograph
- medical information and details of any medication the person needs
- any communication needs
- places that are significant to the person
- their daily routine and frequent walking routes
- previous addresses and other meaningful places the person might visit, for example former workplaces
- contact details for family and friends
- information that may help someone approach, reassure and communicate with the person
Where can I get the Herbert Protocol form?
The Herbert Protocol can be completed online via MedicAlert and Safe and Found Online.
Paper forms are also available from many local police forces and health professionals.
How to complete a Herbert Protocol form
Filling in the Herbert Protocol form is a straightforward process:
- We recommend creating a Herbert Protocol account with MedicAlert and filling in the form online. If you would prefer not to register an account or fill the form in digitally, you can ask your local police force or a health professional for a paper copy.
- Fill in the form before any incident occurs. It can be filled in by a family member, friend or carer. Ideally, involve the person with dementia in completing the form. If this isn’t possible, it can be filled in on their behalf, in their best interests.
- Fill in all sections in as much detail as possible.
- Include a recent photograph of the person and update this regularly.
- If you complete the form online, it will automatically be saved securely in the Herbert Protocol database. You will receive an email confirmation with a link to the form so you can update it as necessary. There is no need to keep a printed copy, but you can if you wish.
- If you fill in the form on paper, keep it in a safe place in the person’s usual place of residence, and keep a copy yourself. You could also give copies to other family members, friends, neighbours and carers.
- If the person with dementia goes missing and you have completed and saved their Herbert Protocol form online, the police will be able to search the national database for the person’s details using their unique reference number, which you will receive on registering the form.
- If you have not registered the form online, you will need to give a copy to the police yourself.
- The police will use this information to direct their search efforts. The details will help them focus on places that are meaningful to the person.
Top tips
- Review the Herbert Protocol form every six months, or after any significant changes, for example if the person has a change of address or new medical needs
- You will also be sent an email reminder every three months to check that the information is still up to date
- Keep the form somewhere obvious and accessible if you are using a paper version, and tell others where it is
- Consider providing the person with dementia with additional identification, such as a MedicAlert bracelet or ID card
Why might a person living with dementia become lost or missing?
There are many reasons why a person with dementia may go missing, including:
- Changes in memory and orientation: the person may not recognise familiar places, remember the way home or be able to retrace their steps
- Difficulty judging time: a short wait may feel much longer, leading the person to believe they have been forgotten or need to move on
- Changes in vision and perception: shadows, changes in flooring, poor contrast or busy surroundings may be misinterpreted and affect the route the person takes
- Difficulty filtering sound: traffic, crowds or several people talking at once may feel overwhelming, prompting the person to seek somewhere quieter
- Changes in spatial awareness and decision-making: the person may struggle to judge slopes, steps, roads or water, or to choose between different routes
- Unmet physical or emotional needs: the person may be looking for a toilet, food, comfort, company or relief from pain, cold, heat, fear or boredom
- Changes in routine or surroundings: moving home, a hospital admission, being visited by unfamiliar carers or disruption to usual routines can increase confusion and distress
Planning ahead and reducing the risk of someone going missing
Walking is important for a person’s health, wellbeing and independence, so the aim should not be to stop the person with dementia going out, but to understand what may increase the risk of them going missing and find the best way to support them. It is not possible to remove every risk, and being overly restrictive can impact the person’s independence and quality of life.
Involve the person as fully as possible in planning how they can go out safely. Talk about what helps them feel safe, where they like to go and what they would want others to do if they became lost.
The following steps may help:
- Support safe walking, for example with a family member, friend, walking group or paid carer
- Identify familiar routes or places the person may go
- If the person has a mobile phone, try to ensure it is kept fully charged and save a clearly identifiable emergency contact
- If they don’t have a mobile phone, consider providing them with an easy-to-use model with an emergency contact saved, and demonstrate how to use it
- With the person’s agreement, if possible, make sure trusted neighbours or local contacts know how to reach you
- Look for patterns in when and why the person goes out, including what happens beforehand and where they may be trying to go
- Ask the person’s GP, Memory Service, Social Care Team or occupational therapist for advice if the risk is increasing
Assistive technology and identification
Assistive technology may help a person living with dementia stay safe if they continue to go out independently. It should be part of a wider safety plan.
Options include:
- a mobile phone or smartwatch with location sharing
- an ID bracelet, pendant, card or tag with an emergency contact number
- a GPS tracker worn or carried by the person
- a device that sends an alert if the person leaves an agreed area, known as a geofence
- a door sensor or telecare alert system
Choosing a GPS tracker
No GPS tracker is completely reliable in every location.
In towns and cities, mobile coverage may be strong, but tall buildings can interfere with the GPS signal. In rural areas, weaker mobile coverage can delay location updates.
Before choosing a device:
- check mobile coverage in the places the person usually visits
- check its battery life, charging needs and water resistance
- consider whether the person will remember to wear or carry it
Talking about location tracking
Where possible, discuss the possibility of tracking with the person with dementia before it becomes urgently needed. Choose a calm time and explain:
- what the device does
- who can see the person’s location
- when their location will be checked
- what will happen if an alert is received
- whether they can pause or stop the tracking
Offer choices, such as wearing a watch or carrying a device in a bag. You could also agree that the location will only be checked if the person is late home or there is a specific concern, rather than continuously.
If, together, you decide to use a tracker, test it on familiar routes and in both indoor and outdoor locations before the person with dementia starts using it.
If the person cannot consent to tracking
‘Mental capacity’ is a term that relates to the ability to make an informed decision. Many people will lose mental capacity as dementia progresses. However, it cannot be assumed that a person with dementia automatically lacks capacity, and with support, they may be able to make their own decision about whether to use a tracker.
If the person with dementia lacks capacity to make a decision about using a tracker, someone else can decide for them. The decision should be made with their best interests in mind, weighing up the potential benefits and risk of harm.
If there is uncertainty about the person’s capacity or disagreement within the family about whether to track the person without their knowledge or consent, seek advice from a GP, social worker or occupational therapist. You can also contact our Helpline to speak to an Admiral Nurse for guidance, although we cannot carry out Mental Capacity Assessments.
What to do if a person living with dementia goes missing
Act quickly. The longer the person is missing, the greater the potential risk, particularly in severe weather.
“My advice to anyone when they discover their loved one missing is call the police. I did the cursory search and got lots of friends involved, and even my 12-year-old daughter. I don’t know why I delayed calling; I think I was embarrassed and ashamed that I’d ‘lost’ my husband and felt I was a bad carer. I couldn’t even describe what he was wearing. But I didn’t feel judged by the police that attended and I’d never have found him without them.”
Hannah, carer
- Contact the police. You do not need to wait 24 hours.
- Explain the risk clearly. Tell the police that the person has dementia and describe anything that may increase their risk, such as frailty, limited mobility, missed medication or previous incidents.
- Share the Herbert Protocol form.
- Give meaningful information. Mention former homes and workplaces, family addresses, favourite walks, places of worship, transport routes and locations the person often talks about or may try to get to.
- Share available information. Tell the police if the person has a mobile phone, smartwatch, GPS device or other information that may assist their enquiries. Keep a record of places that have been checked and keep your phone available.
Should I search for the person myself?
You may be able to check the person’s home, garden, outbuildings, immediate area and nearby familiar places, but only if it is safe. Do not put yourself at risk by trying to follow the person alone.
Do not delay reporting them missing while you search. Follow any advice the police give you about wider searches and social media appeals.
When a person with dementia is found
A person with dementia who has gone missing may have the overwhelming sense of wanting to feel safe. They may be looking for someone or somewhere familiar that gives them a feeling of safety.
When the person is found, make sure they are given personal space. Do not crowd them or make sudden movements.
Communicate with the person in a calm, concise and reassuring way. They will need kindness and patience at a time when they are likely to feel stressed, lost and vulnerable.
How the Herbert Protocol can help
For the person with dementia and their family:
- It provides peace of mind in knowing there is a plan in place
- It can reduce stress during an emergency
- It enables a faster response, as searches can begin immediately
- It makes searches more effective, targeting likely locations first
- There is a greater chance of finding the person quickly and safely
- For the emergency services and healthcare professionals:
- Important information is available immediately
- Resources can be used efficiently, focusing on the most relevant areas
- There is a consistent approach across different agencies
- Outcomes are better for people with dementia who go missing
Sources of support
- Advance care planning
- Caring from a distance
- Creating a life story for a person with dementia
- Living aids and assistive technology
- Making the home safe and comfortable for a person with dementia
- Mental capacity and decision-making
- Dementia and missing people: information for police and search and rescue professionals