A dementia emergency contact sheet is a one-page or digital document that consolidates critical information about a person with dementia, including medical history, emergency contacts, behavioral patterns, medication allergies, and special instructions for first responders. Creating one takes 30 to 60 minutes but can mean the difference between appropriate care and a distressing, dangerous situation when a loved one is injured, lost, or in crisis outside the home. Many families discover its value only after an emergency. Consider Sarah, whose father with moderate Alzheimer’s disease wandered from a store in his neighborhood.
When police arrived and tried to question him, he became agitated and combative—not because he was violent, but because he no longer understood authority figures or why strangers were talking to him. His emergency contact sheet, kept in his wallet, immediately told officers about his cognitive decline, his sundowning behavior, and the phone number for his daughter. Without it, he might have been arrested or unnecessarily sedated at an emergency room. An emergency contact sheet is not a legal document and does not replace a healthcare power of attorney or living will. Rather, it is a practical communication tool designed specifically for the moments when a person with dementia cannot advocate for themselves and their caregivers are not present.
Table of Contents
- What Information Must Go on a Dementia Emergency Contact Sheet?
- Documenting Medical History and Current Diagnoses
- Behavioral Patterns, Communication Needs, and Triggers
- Formatting, Storage, and Accessibility for Emergency Use
- Updating Information and Managing Multiple Versions
- Involving the Person with Dementia in the Process
- Creating a Dementia-Specific Emergency Action Plan Beyond the Contact Sheet
What Information Must Go on a Dementia Emergency Contact Sheet?
The sheet should start with the person’s full name, date of birth, and a recent photograph. emergency responders need to verify identity quickly, and a photo is far more reliable than description in chaotic situations. Include the primary caregiver’s name, phone number, and relationship. Add a secondary contact as a backup—a sibling, adult child, or trusted neighbor who can be reached if the primary contact is unreachable. List the person’s primary care physician, neurologist or geriatrician, and any other specialist currently managing their care. Include phone numbers, clinic addresses, and the patient ID or chart number if the facility uses one.
Many emergency rooms do not have access to a patient’s medical records during the initial assessment; your sheet bridges that gap. For medications, write the full name of each drug (not abbreviations), the dosage, and the time of day it is taken. Include over-the-counter medications and supplements—some can interact dangerously with emergency medications. Flag any allergies to medications, foods, or materials (such as latex), and describe the reaction that occurs (rash, anaphylaxis, severe nausea). Add the patient’s insurance information, including the policy number and group number. Hospitals will ask for this immediately, and a lost wallet or purse means you cannot provide it from memory. Include the patient’s Social Security number if you are comfortable doing so, as it may be required for hospital admission and identity verification.
Documenting Medical History and Current Diagnoses
The sheet should list the date of dementia diagnosis, the type of dementia if known (Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia), and the current stage—mild, moderate, or advanced. Include any other significant medical conditions: heart disease, diabetes, hypertension, stroke history, hearing or vision loss, Parkinson’s disease, or seizure disorder. These conditions change how emergency responders approach treatment. A person with advanced dementia and severe heart disease, for example, may not be a candidate for aggressive resuscitation during cardiac arrest—a fact that emergency personnel need to know immediately. One critical warning: do not assume your dementia diagnosis is in the medical system’s computer.
Many patients have records scattered across multiple clinics, hospitals, and specialists’ offices that do not communicate electronically. A person transported to an unfamiliar emergency room may have no accessible medical history beyond what you provide on your sheet. If the patient has advance directives (a do-not-resuscitate order, healthcare power of attorney, or POLST form), write “See attached” on the sheet and ensure copies are actually attached. Many patients and families store these documents in a safe deposit box or file at home, where emergency responders cannot access them. Keep a copy with your sheet and another in your wallet.
Behavioral Patterns, Communication Needs, and Triggers
Write a short description of how the person communicates—can they speak in full sentences, single words, or non-verbal sounds? Do they understand complex instructions, or do they respond better to simple, repeated words? Does sundowning (increased agitation, confusion, or anxiety in late afternoon or evening) occur? Note the time it typically begins and any behaviors that follow: restlessness, verbal aggression, attempts to leave the house, or tearfulness. Include triggers that escalate behavior or confusion. For example: “Becomes extremely agitated if approached by multiple people at once; calm, slow approach by one person works better.” Or: “Does not recognize mirrors and thinks there is a stranger in the room; remove mirrors when helping with hygiene.” These details are invisible to anyone who has not spent daily time with the person. An ER nurse who does not know that shouting increases the patient’s fear may unintentionally cause a psychiatric crisis that requires sedation and restraint.
Describe any special routines or objects that calm the person. If they have a favorite stuffed animal, blanket, or person’s photo that soothes them, note that. If they have a specific word or phrase associated with their caregiver, include it. If they respond to music, mention the artist or genre. If they have a habit of asking for someone who has passed away, explain this gently so responders understand it is not a sign of psychosis but a common aspect of their cognitive decline.
Formatting, Storage, and Accessibility for Emergency Use
Print the sheet in large, readable font (14 point or larger) on white or cream paper; avoid colored backgrounds, which reduce readability under poor lighting. Consider laminating a copy so it can withstand water and rough handling. Keep one copy in the patient’s wallet or purse, another on the refrigerator at home (many responders check the fridge), and a third in the bedside nightstand. If the patient is at high risk for wandering, consider giving copies to neighbors, local police, nearby businesses (coffee shop, pharmacy), and the patient’s workplace if applicable.
Some families attach a copy to the person’s keychain in a waterproof card holder. The Alzheimer’s Association’s Safe Return program includes an emergency wallet card; combining that with your contact sheet provides multiple layers of backup. A comparison: keeping an emergency contact sheet on your phone is convenient for you, but responders may not be able to access your phone in an emergency. A person who is alone when they fall or wander has no phone, so the sheet must be on their person. A paper sheet in a wallet is more reliable than an app in this context, though a digital copy (emailed to emergency services or stored in an ICE app) works as a supplement.
Updating Information and Managing Multiple Versions
Dementia changes quickly. A sheet that was accurate six months ago may be outdated now. Review and update the sheet every three months, or immediately after any change: a new medication, a hospitalization, a new diagnosis, a change in cognitive or physical ability, or a change in emergency contacts. When you update it, print new copies and replace the old ones in all locations where you have stored them.
Many families create a “version date” in the corner of the sheet (for example, “Updated July 15, 2026”) so responders and family members know they are looking at current information. One limitation of a paper sheet: it can be lost, damaged, or misplaced. A person who is hospitalized may have their wallet placed in a hospital safe, and the sheet ends up separated from the patient. Keep a digital backup (a photo of the sheet, a PDF, or a document) in your email or cloud storage so you can retrieve and print it quickly if needed. However, do not rely only on digital copies for the patient’s person; paper is the most foolproof for emergency scenarios.
Involving the Person with Dementia in the Process
If the person still has the cognitive capacity to participate, involve them in creating the sheet. Explain that it helps people take care of them if they get hurt or lost. Many people feel reassured by knowing the information exists.
Read it to them once or twice so they become familiar with it. If they have advance preferences about medical treatment—for example, they have expressed fear of certain procedures or strong wishes about end-of-life care—note those on the sheet in their own words if possible: “Says he never wants to be on life support” or “Very afraid of needles and blood draws.” As dementia advances and they can no longer participate in conversation, the sheet becomes entirely the caregiver’s responsibility to maintain. Some families add a photo of the caregiver on the sheet too, so responders can show it to the patient and say, “Your daughter is on the way to get you.” This single step can prevent panic and dangerous behavior in the moments before the caregiver arrives.
Creating a Dementia-Specific Emergency Action Plan Beyond the Contact Sheet
The emergency contact sheet is most effective when paired with a broader emergency plan. Identify which hospitals are within 10 minutes of the home (responders will typically transport to the nearest facility unless you specify otherwise). Call ahead to let those hospitals know that the patient has dementia and may be transported to them; some hospitals have geriatric or dementia-specialist programs that can accommodate special needs. Consider enrolling the patient in the Alzheimer’s Association’s Safe Return program, which maintains a national registry and provides identification items with a 24-hour toll-free number.
If the patient is prone to wandering, alert neighbors, local postal carriers, and nearby business owners. Leave a written description and photo with local police. Some communities have silver alert systems (similar to amber alerts for missing children) that notify the public when an elder with dementia goes missing. Know whether your community has this resource and how to activate it.
