It’s extremely traumatic when an elderly family member goes missing, especially if they are living with dementia. If you dial 999 – understandably in a bit of a panic – it can then be hard to think of important information to provide the police to help them with their search. This is where the Herbert Protocol comes in.
It is a form to be completed by family members made available to police forces around the country to help to find someone who may have gone missing.
Collating the information required to complete the form will save precious time and saves you from the frustration of being asked questions when all you want the police to do is be out looking for your mum or dad.
What is the Herbert Protocol?
The Herbert Protocol is an early intervention and risk reduction scheme to help find vulnerable people who are at risk of going missing.
The protocol is named after a war veteran of the Normandy landings named George Herbert, who lived with dementia in a care home. Mr Herbert went missing and sadly died while searching for his childhood home.
The protocol was initially designed to help Norfolk Police find people, such as Mr Herbert, by encouraging family members and carers to compile useful information which could be used in the event of a person going missing.
The protocol was first implemented to help those living with dementia who live in care homes. 18 months after this initiative was launched, the protocol was broadened for those with dementia who live independently in their own homes.
The scheme also allows the police to offer a variety of safeguarding advice to vulnerable people and their families or carers.
The Herbert Protocol is now widely used by police forces across the UK and several organisations such as Dementia Action Alliance are working in partnership to raise the profile of this scheme.
What does the Herbert Protocol Involve?
The simple idea is for carers, family members and friends to complete a form which records vital information on the vulnerable person.
If the person goes missing, sharing the information with professionals, including the police, to protect and safeguard the person, will be used only for the search efforts. The police will only ever ask for the form if the person is reported missing.
How to obtain a copy of the Herbert Protocol Form
All police forces involved in this protocol have slightly different versions of the form which is available to download from their website as a word document.
To obtain a form from your local police force type into Google search the name of your county’s police force together with the words ‘Herbert Protocol’, for example ‘Cheshire Police Herbert Protocol’.
The form has been designed so you can fill it in on the computer to save you time and easier to share with the police if needed.
What information should be recorded on the form?
You, and if possible, with your parent, try to think of every location that has been important to them – think back to when they were young and the places they loved to visit. Detail all their places of work; even if a company they used to work for doesn’t exist anymore, provide the location.
Gather historic information from other members of the family too because people with dementia often revisit periods of time in their long-term memory, especially to places which have an emotional attachment to them.
This checklist will help:
- Name, and preferred nickname if any
- Description: weight, height, hair colour etc
- Any distinguishing features: birthmarks, tattoos, scars etc
- Daily routine with locations
- Any weekly or monthly appointments
- Hobbies and interests
- Do they carry money with them, can they access money?
- Previous addresses
- Date of birth
- Mobile phone numbers
- Any previous locations they have been found if they have gone missing previously. Give details of the route they took.
- Schools, colleges and universities attended
- Where they grew up
- Where they enjoyed going on holiday
- Where they got married
- Any location you believe has an emotional attachment
- Any risk factors. Is your parent suicidal, depressed, confused, violent, use alcohol etc.
- Point of contact when they are found
- Any other information that will help locate, protect or help communicate with your parent
These checklists prompt you to answer as many questions as you can, but don’t worry if you cannot answer all of them, as some may not be relevant to your parent. Keep several copies of up to date photographs with the forms.
Who should provide the information?
It’s best practice to fill out the form with your parent. Ask the questions calmly and gently and if they can’t remember any of the facts don’t push them for it. You can always revisit the questions another time.
*Ask your parent’s friends, other family members and their carers if they can fill in any gaps.
*Some questions on the Herbert Protocol form may be directed to professionals so you’ll need to ask them for some information too.
It should take approximately one hour to complete all sections.
What to do with the form when it has been complete
Once the form has been completed, you should keep it electronically (if possible) and in a place where you can easily locate it as you may have to find it quickly. It’s a good idea to make several copies and give them to relatives, neighbours and carers.
As the form contains a lot of personal information, it’s important that the form is kept somewhere safe to ensure their privacy is protected. Do not give it to anyone you do not know or trust.
Keep a note of who has the form as you will need to provide them with further copies should you need to update the form. Be mindful that you will need to update the form if your parent moves out of their present address or changes their appearance, for example they get new glasses.
Understanding why people may wander
While the act of walking is good for them, the worry that that they could become disorientated and lost is very real. If you are able to, accompany your parent on their walks and try to establish what the purpose of the walk is. Possible reasons for leaving the house include:
- They may wish to continue a routine they once had
- They walk to occupy themselves and it can give them a sense of purpose
- They feel the need to use up energy
- Walking may bring them pain relief
- If they have recently moved, they may feel uncertain about their new immediate surroundings
- Walking may relieve anxiety
- They may be searching for something or someone from the past
- They may seek fulfilment by acting out a chore from the past, for example picking up a child from school or going to work
- They may be confused about the time of day
- They may have got confused looking for a toilet and accidently left the house without meaning to
What actions to take if your parent with dementia goes missing:
- Call 999.
- Tell the police that your parent has dementia and the location where they went missing from including the time.
- Tell them you have a completed Herbert Protocol form.
- Inform the police what your parent was last seen wearing. This is especially important if they are not dressed for the weather conditions.
- If known, tell the police what your parent’s emotional state was prior to them going missing.
- If they have been missing before, state where they were found and the route they took.
If you are concerned that your parent is of high risk of going missing try to identify what your parent is trying to achieve when they go walking, and perhaps keep a diary of where they walk to.
MedicAlert. This is a non-profit membership organisation providing life-saving services, supported with an internationally recognised medical ID. Their membership offers peace of mind to thousands of people. In an emergency, first responders will have secure access to the wearer’s vital medical details from anywhere in the world.
The Alzheimer’s Society. This charity provides useful information about dementia, offers advice and encourages people to get involved to join the fight against dementia.Dementia Action Alliance. This is the alliance for organisations across England to connect, share best practices and take action on dementia.
Expert advice on Dementia
If you want to listen to more information about Dementia, an episode of the Age Space Podcast on Dementia is now available. In it, we talk to Dementia expert Dr Alex Bailey about services and support available for carers.
Herbert Protocol Questions and Answers
[question]Why do people with dementia get lost and wander?[/question]
[answer]Your parent may feel compelled to walk and to leave the safety of their home or care home. It is often necessary to find a solution to help them maintain their independence.[/answer]
[question]My dad has been found after going missing. We were so worried and didn’t know what to do or say when he returned. If this happens again, what is the best approach to take when he returns?[/question]
[answer]Try not to show him that you were worried as he will already be feeling anxious Gently ask questions about where he was going or who he was going to see. Talk about this to make your dad feel more settled. Do not disregard what he says and show interest as the place he was going to or the person he wanted to see is important to him. Identify this as a trigger and update your Herbert Protocol form and redistribute.
Reassure him that he is safe and get him back into his usual routine as soon as possible.
We also understand how hard it can be when you take the role as carer for your parent, our blog may help inspire you to take time to care for yourself too.[/answer]
[question]Can you prevent someone with dementia getting lost?[/question]
[answer]We want to share with you a blog which demonstrates the difficulties of trying to stop someone from getting lost, or even leaving the house. It also beautifully highlights what can happen when you take a Person-Centred Approach to dementia where you assume they can still do things until it has been proved that they can’t.[/answer]
[question]I’ve completed the Herbert Protocol form and hope I never have to use it. But if my parent does go missing and I provide the police with all their information, what do they do with this information once my parent is found?[/question]
[answer]In the first instance the information will be used to help find your parent quickly and safely. Once your parent is found, the police will store the information securely and will only share this confidential information will their trusted partner agencies if there is a need to safeguard your parent.[/answer]
You can download our guide to ways to prevent people from going missing here.