Dementia and The Herbert Protocol | Home Instead Cleveland

What is the Herbert Protocol?

A vital tool for missing persons with dementia

The Herbert Protocol is a vital tool designed to assist in locating missing persons with dementia. It provides a structured way for caregivers and family members to compile essential information that can be used by first responders in the event that an individual with dementia is reported missing. This protocol is a collaborative effort aimed at ensuring the safe and swift return of those who have wandered away from their homes or care facilities.

A collaborative effort between caregivers and first responders

The Herbert Protocol involves a collaborative effort where caregivers and family members provide critical information about the individual with dementia. This includes details about their medical history, daily habits, and favorite places to visit. When a person goes missing, this information is shared with first responders, such as police officers and search teams, to aid in the search and rescue efforts. By having this information readily available, the search can be more focused and efficient, increasing the chances of a quick and safe return.

A proactive approach to preventing wandering

The Herbert Protocol also serves as a proactive measure to prevent wandering. By encouraging caregivers and family members to gather and update critical information, it helps in taking preventive steps to reduce the risk of an individual with dementia leaving their home or care facility. This proactive approach not only aids in the quick location of missing persons but also provides peace of mind to caregivers and family members, knowing that they have taken steps to ensure the safety of their loved ones.

Understanding Dementia and Wandering

Symptoms and signs of cognitive impairment and dementia

Dementia is a progressive condition that affects memory, thinking, and behavior. One of the common symptoms of dementia is wandering, which can be caused by a variety of factors, including disorientation, confusion, and restlessness. Understanding the symptoms and signs of cognitive impairment and dementia is crucial for caregivers and family members to provide the necessary support and care for their loved ones.

Individuals with dementia may exhibit symptoms such as:

• Disorientation and confusion

• Memory loss and difficulty with communication
• Restlessness and agitation
• Difficulty with problem-solving and judgment

• Changes in mood and behavior

By recognizing these symptoms and signs, caregivers and family members can take steps to prevent wandering and ensure the safe return of their loved ones. The Herbert Protocol is an essential tool in this effort, providing a collaborative approach to locating missing persons with dementia and ensuring their safe return.

The Herbert Protocol – Safe and Found

The Herbert Protocol is a form that carers, family or friends of a vulnerable person, or the person themselves can fill in to help in cases of missing persons.

Do you care for someone who has dementia or is becoming more forgetful or confused?

The Herbert Protocol is here to help!

Nothing is more worrying or distressing than when a loved one or friend goes missing or doesn’t return home when expected.

For people living with, or caring for someone with Dementia, this may be quite common. The Herbert Protocol is a national scheme adopted by Cleveland Police and other police services across the country. The Herbert Protocol also extends its support to young people with dementia, ensuring that they receive the necessary care and attention.

It encourages carers, families, friends or neighbours, to hold information about the person who may be vulnerable or with Dementia that can help the police find them if they do go missing. The first hour is the best time to help locate any missing person and the sooner the police have vital information, as well as a photograph, the more effective immediate searches can be. The Herbert Protocol captures this information.

The basis of the scheme is for vital information about the person such as photograph, description, significant places in the person’s life and their daily routines, including medication to be recorded on a form.

The form should then be stored safely – either in electronic format on a computer or mobile phone (best), or a printed version. It may need to be located quickly, at any time of day or night, by the person who needs the information to begin the initial searches. When the form is complete, it will contain confidential information about a person so it should be stored securely. Places like care folders used by support agencies or in electronic form are good examples. It is a good idea to have copies with family or friends.

The information will help the police and other agencies locate the missing person as quickly as possible and return them to safety.

The police DO NOT store the form. The police will only ask for the form, or the information on the form, if the person it refers to has been reported missing. The form and guidance notes on what information to put on the form can be downloaded via the link below; printed from the Cleveland Police website or picked up from your local police station.

What if the person goes missing?

If you discover a person is missing, conduct a brief ‘open door’ search of the address, grounds and outbuildings, to see if you can find them.

If they’re still missing, call 999 immediately. Don’t worry – you won’t be criticised for calling the police if you are worried about a person’s safety. The sooner the police know someone is missing, the sooner a police search can be initiated to locate the individual.

When you ring the police, tell them you have the Herbert Protocol profile available. If you have an electronic version of the form, the police will tell you where to email the document so that the information can be shared with the searching officers. If you have a paper copy, have it ready for the attending officer when they arrive.

Guidance notes to help you complete The Herbert Protocol Form

The Herbert Protocol form should be completed by the individual(s) who know(s) the person named in this document best. It can be completed in slow-time, and should be updated as necessary on a regular basis, so that the information is as current as possible.  There is a lot of information suggested below which could be completed on the form but do not worry if all the information cannot be provided. As much information as possible is always better than nothing in ‘missing person’ circumstances. Many missing people are found within the all-important first hour by having recorded this information below and searchers having access to it. The form is expandable in its electronic format and can then be printed as many times as desired to be kept at the persons home, with (trustworthy) neighbours, friends, Carers or family as appropriate – whoever is likely to be in a position to notice, or be a key contact if someone does go missing and can quickly be in a position to pass this information to Police.

Please attach a photo to the form as attending officers will be able to photograph this and send it to all front line officers. It would also be helpful to have an electronic photo which could be emailed to the Police for the same reasoning

The ‘Missing Now’ section should be completed by you, at the time when the person that you care for in this document goes missing.  Without delay you should call 999 to report the person missing then complete the “missing now” section as best you can.

Information to include – General Knowledge

Background

First and Last name – Their full name as in official documents, birth certificate or passport.

Current Address

Known as/Nickname – The name that they are usually known as, or the name that they usually like to be called.

Description – Personal information to be completed in ‘Any Other Information’ Section. Information such as:

• Build – Slim, large, athletic, stocky etc.
• Race/Ethnicity/Complexion – British, Irish, Caribbean etc.
• Height – Approximate height.
• Weight – Approximate weight.
• Marks/Scars/Tattoos – Location/description/photo
• Hair colour/Cut – How is the person’s hair styled, curly straight, long, thinning, bald etc.
• Eye colour/glasses – Do they wear glasses or usually need any other vision aid? Do they have limited visibility?
• Other distinctive feature (e.g. facial hair) – Anything that is not listed above that you can think will assist us in finding the person.

Medical Information

Please note, this is not a medical document, but will provide pertinent information about the person at the time that the document is completed.

Medical conditions – Do they have any other/additional long-term health conditions, and how are these conditions usually managed?

Communication difficulties – Do they usually communicate verbally, or by using gestures, pointing or a mixture? How would they usually communicate pain, discomfort, thirst or hunger?  Do they have a hearing impairment?

Physical impairments – How easily can the person walk? – Are they fully mobile, or do they usually need help in getting around? If walking, how far – Can they usually walk/what length of time can they usually walk for, before becoming tired or short of breath? Do they use a stick or other walking aid; can they use the stairs?

Vital medication – Name of medication(s), do they need help in taking their medication, do they prefer liquid medication?

Frequency – If they take medication, what dosage is prescribed, how often should they take it, and at what regular/usual time(s) would they take it?

Symptoms if medication missed – What would be the immediate effects of missing a dose of medication, what are the longer term effects of missing a dose?

Places or Addresses of note:

People with dementia can have much stronger recollection of earlier memories than more recent times and can quite often believe they are living in earlier stages in their life. Therefore having as much information about their younger years or times in their life where, in their minds, they are more likely to living (in their first home for example or in the 1950’s perhaps or going back to their last place of work) is very useful to know where it may be likely they will be living their current life in past times. Understanding the dynamics of why individuals, including missing children, go missing can provide valuable insights for locating them.

Previous addresses – Approximate dates

Previous work/school names and addresses – Approximate dates

Houses/friends who they visit? Are there any people/places that they usually visit, or have previously visited on semi-regular occasions now or in the past?

All Occupation/Hobbies/Passions/Interests/Volunteer work – Include career history, voluntary experience, clubs and memberships, hobbies, sports or cultural interests.

Family or friends living nearby – Do they have any other close family or friends living locally?

If missing previously, where found? – Give details of the area/location where previously found – was it a previous home address/work address/address of friends, or favourite place (as listed above)?

Circumstances: How found/how far/time missing

Information to include – Places of Interest

Weekly Habits etc.

List favourite, significant places or likely destinations, including old family/friend’s homes, pubs and clubs, local shops or cafes, churches, shopping centres, leisure centres or sporting arenas

GP’s name, surgery address and telephone number. Any other medical professionals they currently or are likely to want to meet if in need, eg Chiropodist, Dentist

Transport / Tracking

Typical modes of travel (bus pass, etc.) Bus stops / number of bus normally used.  Would they use public transport / taxis (who) to travel to a possible favourite place?

All favourite footpath/track – Are there any routes/roads/walks that they would often take, or used to take on a regular basis in the past? (e.g. usual journey to old work place, or to visit an old friend)

Do they usually carry money with them? Do they routinely visit the Bank? How do they obtain cash / use cards?

Mobile phone number – Their mobile phone number (if they have one) and mobile provider. Do they have a smart phone with location settings turned on?

Do they have a GPS Tracker? Details

Does it work via GPS (satellite) and GPRS (phone) signals or Bluetooth, does the tracker have an active phone SIM card, is it managed (on a contract/pay monthly basis), or topped-up?

Does it have an SOS button, or a call monitor function? What is the approximate amount of time that the battery will work when turned on, and where will the tracker usually be kept – in a bag, or on an item of clothing?

Are they able to drive?

Do they have a car? – Give details of vehicle, including make/model, colour and licence plate

Information to include – Contact & Additional Information

Anything else? / Any other information you think searchers may need to know?
For Example:

How might they react to being upset or scared? – What would be the best way to approach them when they are found that would re-assure them that they are now safe/okay? – Would you expect them to be sad/ tearful/upset/panicky/scared/withdrawn/show a sense of helplessness/relief/be oblivious to everything? Is the use of touch appropriate; are they scared of dogs; what things could make them anxious, do they have any allergies, can they, or do they usually speak any other languages?

Are there any environmental factors that could make them feel anxious: open spaces, loud noises, large/noisy crowds, tall buildings, darkness, busy roads, traffic/vehicle sounds?

Finally

Your name:

Relationship to person named on the form – Are you a relative, or carer?

Your Address

Your Home phone number

Your Mobile phone number

Alternative contacts (guardian/social worker)

What do I do if the person goes missing?

First of all…

After you have conducted an ‘open door’ search of the address, grounds and outbuildings and you believe a person is missing, alert the police at the earliest opportunity. If you believe the person missing is at a high risk of harm, please call 999. Tell the police operator that you have the Herbert Protocol person profile.

Then take note:

Where and when did you last see them?

When did they last take their medication, and do they carry this medication with them in a bag/on their person?

Clothing – What were they wearing, anything distinctive, item of clothing that can be easily identifiable?

Car details/carrying anything/have cash or bank cards

Situation/recent discussion/recent notable date/contact with friends or family – Is there anything that you’re aware of that happened recently that could have triggered this disappearance, such as a recent conversation?

Is there an anniversary date or is there a significant date due/recent?

Any other information that you think would be useful in locating the person.