Emergency Room Checklist for a Parent With Dementia

Short answer: bring a concise description of what is normal for your parent, what changed, how they communicate, current medications and allergies, and the everyday aids or routines that help them function. Keep observations separate from diagnoses and never delay urgent care to complete paperwork.

1. Start with what is normal for your parent

The word “dementia” does not explain how your parent normally thinks, communicates or moves. A short functional baseline gives the care team a comparison point for what you saw today. Use respectful, observable facts.

• Recognition and orientationWho they usually recognize and what they normally understand about place and routine.
• CommunicationHow they express pain, needs or agreement; preferred name and language; words or gestures they commonly use.
• MobilityWhether they normally walk independently or use a cane, walker, wheelchair or hands-on support.
• Daily supportUsual help with eating, dressing, toileting, medicines or other activities.
• Sensory needsGlasses, hearing aids, dentures and how well they normally see or hear with them.

“Usually walks from the bedroom to the kitchen with a walker and one reminder” is more useful than “mobility is poor.” Our guide to writing an aging parent’s baseline includes more examples.

2. Write down what changed and when

The current event deserves its own page. Record the first time someone noticed the change, who saw it and how it differs from the baseline. If the time is uncertain, state that rather than choosing an exact time.

• Specific observationFor example, newly unable to stand with the usual support or not responding in the usual way.
• TimingWhen last seen at the usual baseline and when the change was first noticed.
• Recent known eventsFalls, illness, procedures, medication starts or stops, missed doses, or changes already documented by a clinician.
• Witness and callback numberName the person who directly observed the change if they cannot travel to the hospital.

3. Give a short communication and comfort note

An unfamiliar, noisy setting can make communication harder. NIA guidance for hospital visits recommends telling staff about the person’s dementia and sharing information that helps staff understand the person’s needs. Keep the note brief enough to use.

• Best approachPreferred name, whether one question at a time helps, and how much time they normally need to answer.
• Signs of pain or distressDescribe familiar words, facial expressions or behaviors without assuming their cause.
• Known triggersRecord specific situations that commonly increase distress and what normally helps.
• Decision-support contactIdentify the relevant person and the location of the current signed document, if one exists.

4. Put the essentials where they can be handed over first

Bring a current medication and allergy list, a concise medical snapshot, the baseline and current-event note, working family contact numbers, and copies or locations of relevant current signed documents. If safe and practical, also bring the aids your parent normally relies on.

• Medication listInclude prescriptions, nonprescription products, vitamins and supplements with exact known details and a verification date.
• Everyday aidsGlasses, hearing aids, dentures, labeled cases, mobility or communication aids as appropriate.
• Familiar essentialsA small familiar item or brief personal-information page when it is safe and permitted.
• Current documentsBring only the useful current copies; an organizer is not itself a proxy, directive or medical order.

Use the free emergency information sheet for a quick handoff, or see the fuller guide to what to bring to the Emergency Room for an aging parent.

5. Help staff hear your parent and understand the baseline

Address your parent directly and give them time to respond when they can. Add facts they cannot provide, correct important misunderstandings respectfully and show the written baseline. Avoid answering every question automatically when your parent can still participate.

If different relatives hold different information, choose one current spokesperson and one written master rather than giving staff several conflicting lists. Before leaving, record new instructions, medication changes, pending results and follow-up contacts exactly as provided by the care team.