Going to Hospital with Dementia

A hospital visit can disrupt familiar routines and be hard to understand. A person living with dementia may need more time, explanation and help with everyday tasks while they are there. Planning what to share with staff can support the person and the people helping them.

The Alzheimer’s Association hospital and discharge guide and Dementia Australia’s guide to going to hospital recommend preparing useful information, familiar items and follow-up questions. Hospital staff’s instructions take priority over this general guide.

How can I prepare for a planned hospital visit?

If the visit is planned, ask the person what they understand about it and what they would like to know. Involve them in decisions as much as they want. Some people prefer to hear about the visit well in advance; others may feel less anxious with a short, calm explanation closer to the time. Follow the person’s preference when possible.

Ask the hospital what information and belongings to bring. A current list of medications, allergies if known and the names and numbers of regular health professionals may help staff. Bring glasses, hearing aids, familiar clothes, toiletries and a comfort item if the hospital allows them. Keep legal or advance-care documents with the person only if they are relevant and the person or authorized decision-maker chooses to bring them.

Plan who can accompany the person and how family or trusted helpers will share updates. If one person cannot stay, ask another trusted person to take a turn. The person may want company during some parts of the visit and privacy at other times.

What information should I share with hospital staff?

Share details that help staff communicate with and care for this person. With the person’s agreement, write a short note that includes their preferred name, how they communicate, what helps them understand, and any routines or comfort items that matter. You can also mention how they show pain or distress if they may not use words for it.

Keep the note brief and private. Share it with the care team members who need it. Ask staff how they prefer to receive this information and where they want it kept. Do not put sensitive details on a public board or share them with visitors who do not need them.

The person should be part of conversations whenever possible. Ask staff to speak to them directly, use plain words and allow time for an answer. If you need to add something the person may not remember, explain what you observed without guessing at the cause.

How can I help during an emergency room visit?

If the trip is unexpected, describe what happened, when it started and what changed from the person’s usual behavior. Staff may ask the same question more than once. A short written note can help you give the same clear account to different people.

Let the staff know the person has dementia and what support usually helps. Ask who will be the main contact for updates. If the person is waiting, a familiar voice, a quiet item to look at or their glasses or hearing aids may help, if staff say these are safe to use.

Follow instructions from the clinical team. Before helping with food, drink, medicine, walking or personal care, check with staff about what is safe at that time. Hospital tests or treatment can change what the person can do for a while.

What should I do if the person seems suddenly different?

Tell the nurse or doctor promptly if the person becomes suddenly more confused or behaves very differently from usual. Do not assume this is only dementia. The NHS guidance on sudden confusion says sudden confusion needs immediate medical attention.

Share when the change began and what you have noticed. A person may show discomfort by changes in expression, movement, sleep or eating even if they cannot explain it. Ask the care team to assess the change rather than trying to diagnose it yourself.

How can I support the person during a hospital stay?

Keep familiar routines when staff say they are safe. Bring a familiar photo or other comfort item, reduce extra noise if possible, and explain one step at a time. Let the person do what they can and want to do. Ask staff before moving equipment, changing the room or helping with food and personal care.

The person may need help to use a call button, find the bathroom or understand a new schedule. Tell staff what support they usually need, and ask how to request help between visits. If the person wants someone to stay with them, ask what visiting or overnight support the hospital can allow.

Hospital stays can tire caregivers too. Arrange another trusted person to take a shift if the person agrees. Ask the hospital contact or social worker about support for the person and family while the stay continues.

What should I check before the person leaves?

Ask for a written discharge plan. Check that it explains follow-up appointments, care tasks, any medication changes and who to contact if a problem comes up. If instructions are unclear, ask the discharge team to explain them before leaving.

Discuss what support will be needed at home. Consider who will help with meals, movement, washing, appointments and any new equipment or home services. Be honest about what family and friends can provide. Ask the hospital discharge planner about other local services if the plan feels hard to manage.

After returning home, allow time to rest and settle back into familiar routines. Share the written plan only with the people the person has agreed to involve. If the person becomes suddenly confused or seriously unwell, seek urgent medical help rather than waiting for a routine follow-up.

A calm visit is not always possible, especially in an emergency. Preparation, clear communication and a written discharge plan can still help everyone know what happens next.