Caregiver guide
Dementia patient in hospital: how to prepare, what to ask and what to expect
A hospital stay is hard on a person living with dementia. The noise, strangers and changes in routine can bring on sudden confusion, called delirium, and raise the risk of falls. A packed bag, a clear "about me" sheet and a familiar face at the bedside make a real difference.
Do dementia patients know they are in a hospital?
Often, not fully. Your person may not remember why they're there, may think it's a hotel or an office, or may keep trying to go home. They may not be able to explain pain or answer the doctor's questions correctly.
That's why you matter so much. You know your person's normal. You can tell staff what's new, what calms them and what upsets them.
Hospitals aren't usually designed with dementia in mind. A little planning before an emergency or a scheduled stay can ease the stress for both of you.
Do dementia patients get worse in hospital?
Many do, at least for a while. Families often say their person came home "worse than before." The most common reason is delirium: a sudden state of extreme confusion.
Delirium can be caused by illness, infection, pain, dehydration, surgery, new medicines, poor sleep or simply being in a strange place. Signs come on quickly, over hours or days:
- Much more confused than usual, or confused in a new way
- Very sleepy, or very restless and agitated
- Seeing or hearing things that aren't there
- Trouble paying attention or following a conversation
Tell the nurse or doctor right away if your person suddenly seems worse or different. Delirium is a medical problem that needs attention. It is not just "the dementia."
How long does hospital delirium last?
It varies. Delirium often improves over days to weeks once the cause is treated, but it can last longer. Some people don't fully return to how they were before.
You can help by keeping things familiar: glasses and hearing aids on, a clock and calendar in view, lights on in the day and off at night, and familiar voices nearby. Ask the doctor what to expect for your person and when to follow up after discharge.
Going to the emergency room with someone who has dementia
An ER visit can be tiring and scary. These steps can help.
Bring a helper
Ask a friend or family member to meet you. One of you can stay with your person while the other talks with staff.
Say it up front
Tell every staff member your person has dementia, and share the best way to talk with them.
Explain what happened
Be ready to describe the symptoms and events that led to the visit, more than once.
Stay calm and patient
Waits can be long. Speak softly, hold their hand and offer a snack or music.
Don't leave without a plan
If you're sent home, make sure you understand the follow-up care and medicine changes.
What to pack in a hospital bag
Pack it ahead of time and keep it by the door. It's also useful for a hurricane evacuation.
Cards and papers
Insurance cards, ID, and copies of advance directives like a health care power of attorney.
Health lists
Current medical conditions, allergies, doctors' names and numbers, and a complete medication list.
An 'about me' sheet
Preferred name and language, family contacts, glasses, dentures or hearing aids, how your person shows pain or needs the bathroom, what calms them and what upsets them, and their living situation.
Comfort items
A favorite blanket, photo, music with headphones or something to hold.
Practical supplies
Snacks, water, incontinence products, wipes, plastic bags, a phone charger and a change of clothes.
Before a planned hospital stay
Build a care team
Line up family, friends or paid helpers to take turns at the bedside. Don't try to do it all alone.
Ask about outpatient options
Can the procedure be done without an overnight stay, or can tests be done ahead of time to shorten it?
Ask about anesthesia
General anesthesia can affect thinking. Ask if a local option is safe.
Ask about regular medicines
Find out which medicines will continue in the hospital and which will change.
Ask for a quiet room
A private room is calmer, if available. Check whether insurance covers it.
Keep the warning short
Tell your person shortly before you leave, in simple words, that you're going to the hospital together for a short time.
Supporting a dementia patient in hospital: what to tell the staff
Good nursing care for dementia patients in hospital starts with good information. Share your "about me" sheet, and ask the team to:
- Talk with you in private about your person's history, rather than asking your person questions they can't answer.
- Avoid restraints and medicines to control behavior where possible. Ask what they'll try first.
- Help prevent falls with a low bed, a bed alarm, non-slip socks and regular trips to the bathroom.
- Keep glasses, hearing aids and dentures in place.
- Call you if your person becomes upset, so you can help calm them.
If your person has a health care surrogate or power of attorney, make sure the hospital has a copy. Our guide to legal and financial planning explains these documents.
Ideas for dementia patients in hospital
Boredom and fear can lead to restlessness. Simple, familiar activities help pass the time:
- Play favorite music softly through headphones.
- Look through a photo album and talk about the people in it.
- Fold a small towel, sort cards or hold a soft object.
- Read aloud from a favorite book or the newspaper.
- Take a short walk, if the nurse says it's safe.
- Keep visits small and calm. One or two people at a time is often best.
Can a hospital kick out a dementia patient?
A hospital will discharge your person once they no longer need hospital-level care, even if they aren't back to normal. But the hospital must plan for a safe discharge.
- Ask early to meet the case manager or discharge planner.
- Be honest about what you can and can't handle at home.
- Ask about rehab, home health care or short-term placement if needed.
- If your person has Medicare and you think the discharge is too soon, ask the hospital how to appeal.
Going home after a hospital stay often means a period of extra confusion and weakness. Before you leave, check the home for new fall risks using our dementia safety at home checklist, and get a written list of every medicine change.
Questions caregivers ask about a dementia patient in hospital
When should someone with dementia go into a care home?
There's no set point. Families often decide when care needs are more than one person can safely give, when the caregiver's own health is suffering, or after a hospital stay shows how much help is needed. It's not a failure. ADRC's Information & Referral service can help you find communities with dementia care, and a free Care Navigation session can help you think it through.
Should I stay overnight with my person?
If you can, it helps. Nights in hospital are often the most confusing time. If you can't stay, ask a family member or friend to take turns, and get some rest yourself. You'll be needed when your person comes home.
What if my person becomes aggressive in the hospital?
Aggression is usually a sign of fear, pain or confusion. Tell the nurse what usually helps, such as a calm voice, music or a familiar person. Ask the team to check for pain, infection and delirium, and to tell you before using medicines or restraints.
Will the hospital use restraints?
Hospitals try to avoid them, but they may be used if staff believe someone is at risk of harm. Ask what the team will try first, such as a sitter, a bed alarm or a family member at the bedside. Restraints can increase agitation and the risk of injury.
What if my person falls in the hospital?
Tell the nurse right away, even if they seem fine. Ask that the fall be checked and that steps be taken to prevent another one. Falls are a real risk in unfamiliar rooms, especially at night.
Should I tell my person ahead of time that they're going to the hospital?
For a planned stay, tell them shortly before you leave, in simple, calm words. Telling them days in advance can lead to worry and repeated questions.
How do I keep family updated?
Choose one person to share news by group text, email or an online update page. That saves your energy for your person and the care team.
Who can I call for help?
Call ADRC at (407) 436-7750, Monday to Friday, 8:30 AM to 4:30 PM. Our services are free. You can also find people who've been through hospital stays in our support groups. In an emergency, call 911. The Alzheimer's Association 24/7 Helpline is 800-272-3900.
Download the free guide (PDF)
Print the National Institute on Aging tip sheet on going to the hospital and keep it in your hospital bag. It's also in our Caregiver Resource Library, along with our guide to hurricane preparedness. Based in part on National Institute on Aging guidance.
Talk with someone who understands
Alzheimer's & Dementia Resource Center (ADRC)
1470 Gene Street, Winter Park, FL 32789
- Monday to Friday: 8:30 AM to 4:30 PM
The Alzheimer's & Dementia Resource Center (ADRC) in Winter Park, Florida, offers free help for caregivers in Orange and Seminole counties; call (407) 436-7750. In an emergency, call 911. The Alzheimer's Association 24/7 Helpline is 800-272-3900.