Keep a dementia contact card useful by limiting it to the information needed to reach trusted help, such as names and phone numbers. Do not place a diagnosis, home address, medication list, or full care history on a card that strangers may see. The evidence supports separating a minimal carried card from a confidential emergency record. This approach protects privacy while preserving details that may help police during a missing-person search.
Medical information disclaimer: This article is for general educational purposes only and does not provide medical advice, diagnosis, or treatment. Always consult a physician or other qualified health professional about symptoms, medications, tests, or treatment decisions.
Table of Contents
- What belongs on a public-facing card?
- Can an identifier provide help without revealing a diagnosis?
- Why keep a separate emergency record?
- How should the information be stored and reviewed?
- Frequently Asked Questions
What belongs on a public-facing card?
A dementia contact card is a small card or identifier that helps another person contact support. Its purpose is to provide a safe route to assistance, not to display a complete medical or personal profile. Wakefield Council's Safe Places Card lists the names and phone numbers of up to three trusted carers.
It does not need to display a diagnosis, home address, medication, or full care history. Wakefield Council's Safe Places guidance A public-facing card might therefore include: Avoid adding information simply because it might be useful in some situation. The more personal information a card carries, the more it can reveal if lost, copied, or seen by someone without permission.
- The person's name, if they want it shown
- One to three trusted contacts
- Clear instructions to call a named contact
- A brief safety message, if useful and agreed
Can an identifier provide help without revealing a diagnosis?
Yes. A public identifier can provide a contact route without naming a health condition. Ards and North Down Borough Council describes dementia wristbands and hang tags using NFC, a technology that lets a smartphone read stored information when tapped. The identifier provides a next-of-kin emergency contact.
Ards and North Down Borough Council's safeguarding scheme announcement This model limits what appears directly on the person. However, families should still decide what the linked information contains and who can access it. The supplied evidence shows that such an identifier can be limited to a contact route; it does not establish that every NFC scheme has the same settings or safeguards. A card or tag should also reflect the person's preferences. Someone may accept a contact name and telephone number but not want a diagnosis, photograph, address, or other identifying detail displayed publicly.
Why keep a separate emergency record?
A detailed record serves a different purpose from a contact card. The Herbert Protocol records information such as medication, physical description, photograph, significant places, and daily routine because those details may help police locate a person with dementia who has gone missing. North East Lincolnshire Council and Humberside Police's Herbert Protocol leaflet That information should not automatically travel on the person's everyday card.
It belongs in a confidential record that remains quickly available to authorised people during a search emergency. Suffolk County Council advises carers to seek the person's permission and agree a safe storage place. If the person cannot consent, it directs carers to involve the next of kin in completing and consenting to collection and storage. Suffolk County Council's Herbert Protocol guidance.
How should the information be stored and reviewed?
The Information Commissioner's Office says personal data should be sufficient and relevant for its purpose, but limited to what is necessary. It specifically highlights the need to minimise sensitive special-category data, including health information. ICO guidance on data minimisation For practical purposes, use two levels of information: The ICO also says security should match the risk and prevent unauthorised access or disclosure.
A fuller record therefore needs secure physical or digital storage, while remaining accessible quickly to the people who may need it. ICO guidance on data security Review both items when contact details, medication, appearance, routine, or consent changes. The exact storage method depends on the person's circumstances and the local emergency scheme; the evidence does not establish one universal card design.
- Carried card: trusted contacts and only essential instructions
- Restricted record: medical, descriptive, routine, and search-related details
Frequently Asked Questions
Should a dementia contact card include the person's diagnosis?
Not necessarily. A card can provide trusted contact details without displaying a diagnosis.
Should medication details go on the card?
Usually, keep them in a restricted emergency record when they are needed for a search response, rather than on a publicly visible card.
Who should help decide what information to collect?
Seek the person's permission. If they cannot consent, involve the next of kin and agree how the information will be stored.
Do police keep Herbert Protocol forms after finding someone?
The Metropolitan Police and Alzheimer's Society leaflet says the submitted form and photograph are returned after the person is found, but this applies to that local scheme, not every contact card. Newham Council-hosted Herbert Protocol leaflet
