HOSPITALIZATION HAPPENS

A Guide to Hospital Visits 

for Individuals with Memory Loss
For more information about 

Alzheimer’s disease, contact:

Alzheimer’s Disease Education 

and Referral (ADEAR) Center

P.O. Box 8250

Silver Spring, MD 20907-8250

800-438-4380 (toll-free)

www.nia.nih.gov/Alzheimers

A service of the National Institute 

on Aging, the ADEAR Center offers 

information and publications for 

families, caregivers, and professionals 

on diagnosis, treatment, patient care, 

caregiver needs, long-term care, 

education and training, and research 

related to AD. Staff members answer 

telephone, email, and written requests 

and make referrals to local and national 

resources. The ADEAR website offers 

free, online publications in English 

and Spanish; email alert and online 

Connections newsletter subscriptions; 

an AD clinical trials database; the AD 

Library database; and more.
Contents

Introduction 1

Hospital Emergencies: 

What You Can Do Now 2

At the Emergency Room 7

Before a Hospital Stay 8

Working with Hospital Staff 14

Make Contact with 

Helpful Resources 17

Additional Resources 18

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HOSPITALIZATION HAPPENS: A Guide to 

Hospital Visits for Individuals with Memory Loss

Introduction

A trip to the hospital 

with a person who 

has memory loss 

or dementia can be 

stressful for both 

of you. This brochure can relieve 

some of that stress by helping you 

prepare for both unexpected and 

planned hospital visits. 

Inside, you will find: steps you can 

take now to make hospital visits 

less traumatic; tips on making 

your relative or care partner more 

comfortable once you arrive at the 

hospital; and suggestions on how to 

work with hospital staff and doctors.

Share this information with family 

and friends; keep this brochure 

in a convenient location; and begin 

preparing now for what will happen 

in the future. 
Hospital Emergencies: 

What You Can Do Now 

Planning ahead is key to making an 

unexpected or planned trip to the 

hospital easier for you and your care 

partner. Here is what you should do 

now:

■ Think about and discuss 

hospitalization before it happens 

and as the disease and associated 

memory loss progresses. 

Hospitalization is a choice.

Talk about when Hospice may be 

a better and more appropriate 

alternative.

■ Know who you can depend on.

You need a family member or 

trusted friend to stay with your 

care partner when he or she is 

admitted to the emergency room 

or hospital. Arrange to have 

■ Register your relative for a 

MedicAlert® + Alzheimer’s 

Association Safe Return® bracelet

through your local Alzheimer’s 

Association Chapter. People who are 

lost may be taken to an emergency 

room. This bracelet will speed up 

the process of reconnecting you with 

your care partner. Learn more about 

safety-related programs such as 

Project Lifesaver International

(www.projectlifesaverinternational.com). 
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HOSPITALIZATION HAPPENS: A Guide to 

Hospital Visits for Individuals with Memory Loss

at least two 

dependable 

family members, 

neighbors, or friends 

you can call on to 

go with you or meet 

you at the hospital 

at a moment’s notice so that one 

person can take care of the 

paperwork and the other can 

stay with your care partner.

Pack an “Emergency Bag” 

containing the following:

Personal Information Sheet

Create a document that includes the 

following information on your care 

partner:

 Preferred name and language 

(some people may revert to 

native languages in late stage 

Alzheimer’s disease)

 Contact information for doctors,

key family members, minister 

and helpful friends (also program 

into cell phone, if applicable) 

 Illness or medical conditions

 All current medicines and dosage 

instructions; update whenever 

there is a change
 Any medicines that have ever 

caused a bad reaction 

 Any allergies to medicines or 

foods; special diets

 Need for glasses, dentures 

or hearing aid

 Degree of impairment and 

amount of assistance needed 

for activities

 Family information, living 

situation, major life events

 Work, leisure and spiritual history

 Daily schedule and patterns, 

self-care preferences

 Favorite foods and music; touch 

and visual resources

 Highlight behaviors of concern; 

how your relative communicates 

needs and expresses emotions

Paperwork:

Include copies of important 

documents such as:

 Insurance cards (include policy 

numbers and pre-authorization 

phone numbers)

 Medicaid and/or Medicare cards
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HOSPITALIZATION HAPPENS: A Guide to 

Hospital Visits for Individuals with Memory Loss

 Durable Power 

of Attorney, 

Health Care 

Power of 

Attorney, Living 

Will and/or an 

original DNR (do 

not resuscitate) 

order

Supplies for the Care Partner: 

 A change of clothing, toiletries 

and personal medications

 Extra adult briefs (e.g., Depends), 

if usually worn. These may not be 

available in the emergency room 

if needed

 Moist hand wipes such as Wet 

Ones. Plastic bags for soiled 

clothing and/or adult briefs

 Reassuring or comforting 

objects

 An iPod, MP3 or CD player; 

earphones or speakers

Supplies for the Caregiver:

 A change of clothing, toiletries 

and personal medications.

 Pain medicine such as Advil, 

Tylenol or aspirin. A trip to the 
emergency room may take 

longer than you think. Stress 

can lead to a headache or other 

symptoms.

 A pad of paper and pen to write 

down information and directions 

given to you by hospital staff. 

Keep a log on your care partner’s 

symptoms and problems. 

You may be asked the same 

questions by many people. 

Show them what you have 

written instead of repeating 

your answers. 

 A sealed snack such as a pack 

of crackers and a bottle of water 

or juice for you and your care 

partner. You may have to wait 

for quite awhile. 

 A small amount of cash. 

 Put a note on the outside of the 

“Emergency Bag” to take a cell 

phone with you. 

By taking these steps in advance, 

you can reduce the stress and 

confusion that often accompanies 

a hospital visit, particularly if the 

visit is an unplanned trip to the 

emergency room.
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HOSPITALIZATION HAPPENS: A Guide to 

Hospital Visits for Individuals with Memory Loss

At the 

Emergency 

Room

A trip to the 

emergency room 

may fatigue or even 

frighten your care 

partner. There are 

some important 

things to remember:

■ Be patient. It 

could be a long 

wait if the reason 

for your visit 

is not lifethreatening. 

■ Recognize that results from lab 

tests take time. 

■ Offer physical and emotional 

comfort and verbal reassurance 

to your relative. Stay calm and 

positive. How you are feeling will 

get absorbed by others.

■ Realize that just because you do 

not see staff at work, does not 

mean they are not working.

■ Be aware that emergency room 

staff often have limited training in Alzheimer’s disease and 

related dementias so try to help 

them better understand your 

care partner.

Have an emergency 

bag prepared for 

your trip to the 

hospital that 

includes items like 

over-the-counter 

pain medication, 

sealed snacks and 

bottled water.
■ Encourage hospital staff to see 

your relative as an individual and 

not just another patient with 

dementia who is confused and 

disoriented from the disease.

■ Do not assume your care partner 

will be admitted to the hospital.

Do not leave the emergency room 

to go home without a follow-up 

plan. If you are sent home, make 

sure you have all instructions for 

follow-up care.

Before a Hospital Stay

If your relative is going to the 

hospital for a planned stay, you 

have time to prepare and get more 

information from your doctor. Ask 

your doctor if the procedure can be 

done as an outpatient visit. If not, 

ask if tests can be done before going 

to the hospital to shorten the 

hospital stay. Ask if your doctor 

plans to talk with other doctors. 

If so, find out if your care partner 

can see these specialists before 

going into the hospital. 

You should also ask questions about 

anesthesia, catheters, and IV’s. 

General anesthesia can have side 

effects. Ask if local anesthesia is an 

option and ask to be allowed in the 

recovery room. Insist that regular 

Alzheimer’s medications be 
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HOSPITALIZATION HAPPENS: A Guide to 

Hospital Visits for Individuals with Memory Loss

continued throughout the hospital 

stay unless 

contraindicated. 

Discourage stopping 

cholinesterase 

inhibitors (Aricept, 

Exelon, Razadyne).

With Alzheimer’s 

disease and related 

dementias, it is wise 

to accept that 

hospitalization is a “when” and not 

an “if” event. Due to the nature of 

the disease, it is very probable that, 

at some point, the person you are 

caring for will be hospitalized. 

Medical facilities are not typically 

well designed for those with 

dementia and advance planning 

and preparation can make all 

the difference.

Build a “team” for care and 

support during a hospital stay. 

Develop roles for each person 

(spokesperson, hands-on caregivers, 

comfort people, home and personal 

affairs manager, communication 

center person). Do not try to do 

it alone. Now may be the time 

to have 1:1 caregivers on site if 

money or resources permit to help 

make sure medications and/or 

physical restraints are not used 

to control behaviors that can 

Before your hospital 

visit, prepare a list 

of questions and 

concerns for your 

doctor.
be managed with redirection 

or distraction.

Before Going to the 

Hospital:

■ If your insurance allows, ask if a 

private room is available. It will 

be more quiet and calm. Request 

a reclining chair or bed for you 

or a companion/respite provider.

■ Shortly before going to the 

hospital, decide the best way 

to tell your care partner that the 

two of you are going to spend a 

short time in the hospital.

■ Involve your care partner in the 

planning process as much as 

possible.

■ Do not talk about the hospital 

stay in front of your care partner 

as if he or she is not there. 

This can be upsetting and 

embarrassing to your relative.

■ Plan ahead. Make a schedule 

with family, friends and/or a 

professional respite care provider 

to take turns staying with your 

care partner while in the 

hospital. This is particularly 

important if your relative 

needs continuous supervision.
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HOSPITALIZATION HAPPENS: A Guide to 

Hospital Visits for Individuals with Memory Loss

Pack comfort items

– things to help your 

care partner feel 

safe and secure such 

as favorite clothes, 

blankets and/or 

photos.

During the Hospital Stay:

■ Ask the hospital staff to avoid 

using physical restraints.

■ Have a family member, trusted 

friend, or hired caregiver with 

your care partner at all times if 

possible – even during medical 

tests. This may be hard to do, 

but it will help keep your care 

partner calm and less frightened, 

making the hospital stay easier.

■ Use a “telephone tree” to keep 

others posted of progress. This 

can greatly reduce stress and 

make sure that you do not 

receive calls just as you get your 

care partner settled down. You 

may need to turn the “ringer” 

on the phone down or off during 

rest times. 

■ Ask doctors to limit the 

questions directed to your 

relative who may not be able 

to answer accurately. Instead, 

arrange to answer questions 
from the doctor in private, 

outside your care partner’s room.

■ Modify the hospital room 

for best performance.

■ Help your relative fill out menu 

requests. Open food containers 

and remove trays. Assist with 

eating as needed.

■ Remind your care partner 

to drink fluids. Offer fluids 

regularly and have him or her 

make frequent trips to the 

bathroom.

■ Assume your care partner will 

experience difficulty finding the 

bathroom and/or using a call 

button, bed adjustment buttons 

or the phone.

■ Communicate with your care 

partner in the way he or she will 

best understand or respond.

■ Recognize that an unfamiliar 

place, medicines, invasive tests 

and surgery will make a person 

with dementia more confused. 

Your relative will likely need 

more assistance with personal 

care activities.

■ Take deep breaths and scheduled 

breaks for yourself!
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HOSPITALIZATION HAPPENS: A Guide to 

Hospital Visits for Individuals with Memory Loss

Be aware of acute or 

sudden confusion or 

delirium which can 

be caused by serious 

medical problems 

such as fever, infection, medications 

and/or dehydration. 

Inform the doctor 

as soon as possible 

if your care partner 

seems suddenly 

worse or different. Make sure you 

advocate for the person you are 

caring for... others may not 

recognize the difference in your 

relative’s condition.

If Anxiety or Agitation 

Occurs:

Try some of the following:

■ Remove personal clothes 

from sight. 

■ Post reminders or cues if this 

comforts your care partner. 

■ Turn off the television, telephone 

ringer and intercom. Minimize 

background noise to prevent 

overstimulation.

■ Talk in a calm voice and offer 

reassurance. Repeat answers to 

questions when needed.

Give your care 

partner something to 

hold such as a book, 

photos or a favorite 

comfort item.
■ Provide a comforting touch or 

distract your care partner with 

offers of snacks and beverages.

■ Consider “unexpressed pain” 

(i.e., furrowed brow, clenched 

teeth or fists, kicking). Assume 

your relative has pain if the 

condition or procedure is 

normally associated with pain. 

Ask for pain evaluation and 

treatment every four hours 

without your care partner having 

to ask for it— especially if he or 

she has labored breathing, loud 

moaning, crying or grimacing or 

if you are unable to console or 

distract your care partner.

■ Listen to soothing music or try 

comforting rituals such as 

reading, praying, singing or 

reminiscing.

■ Slow down, try not to rush your 

care partner.

■ Avoid talking about subjects 

or events that may upset your 

care partner.

Working with Hospital Staff

Remember that not everyone in the 

hospital knows the same basic facts 

about memory loss and Alzheimer’s 

disease or related dementias. You 

may need to help teach hospital 

staff what approach works best 
15

HOSPITALIZATION HAPPENS: A Guide to 

Hospital Visits for Individuals with Memory Loss

with your care partner; what 

distresses or upsets him or her; 

and ways to reduce this distress. 

You can help the staff by providing 

them with a personal information 

sheet that includes your care 

partner’s normal routine; how he 

or she prefers to be addressed 

(e.g., Miss Minnie, Dr. James, Jane, 

Mr. Miller, etc.); personal habits; 

likes and dislikes; possible behaviors 

(what might trigger them and how 

best to respond); and nonverbal 

signs of pain or discomfort.

Help staff understand what your 

care partner’s “baseline” is (prior 

level of functioning) to help 

differentiate between dementia 

and acute confusion or delirium.

You should:

■ Make the personal information 

sheet easy to read with headings 

and short, simple statements. 

Place a copy with the chart, 

in the hospital room and at the 

nurse’s station.

■ With the hospital staff, decide 

who will do what for your care 

partner. For example, you may 

want to be the one who provides 

assistance with bathing, eating 

or using the bathroom.
■ Inform the staff about any 

hearing difficulties and/or other 

communication problems your 

relative may experience and 

offer ideas for what works best 

in those instances.

■ Make sure your care partner 

is safe. Tell the staff about any 

previous issues with wandering, 

getting lost, falls, suspiciousness 

and/or delusional behavior.

■ Not assume the staff knows your 

care partner’s needs. Inform 

them in a polite, calm manner. 

■ Ask questions when you do not 

understand certain hospital 

procedures and tests or when 

you have any concerns. Do not 

be afraid to be an advocate for 

your relative.

■ Plan early for discharge. Ask the 

hospital discharge planner about 

eligibility for home health 

services, equipment or other 

long term care options. Prepare 

for an increased level of 

caregiving.

Realize that hospital staff are 

providing care for many people. 

Practice the art of patience.

What is possible and reasonable are 

two different things... which would 

your care partner want?
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HOSPITALIZATION HAPPENS: A Guide to 

Hospital Visits for Individuals with Memory Loss

Make Contact 

with Helpful

Resources

The following 

agencies can 

provide you with 

information about Alzheimer’s 

disease and related disorders and 

connect you with community 

programs and services such as 

support groups and respite care:

■ Alzheimer’s Disease 

Education and Referral 

(ADEAR) Center

800-438-4380 (toll-free)

www.nia.nih.gov/Alzheimers

■ Alzheimer’s Association

800-272-3900 (toll-free)

www.alz.org

■ Eldercare Locator

800-677-1116 (toll-free)

www.eldercare.gov

■ Family Caregiver Alliance 

800-445-8106 (toll-free)

www.caregiver.org

■ National Family Caregivers 

Association

800-896-3650 (toll-free)

www.thefamilycaregiver.org
Additional Resources

The Alzheimer’s Health Care Handbook: How 

to Get the Best Medical Care for Your Relative 

with Alzheimer’s Disease in and out of the 

Hospital (2003) by Mary Mittelman and Cynthia 

Epstein. 

“Working with Families of Hospitalized Older 

Adults with Dementia” (2007) by Geri R. Hall 

and Katie Maslow in “Try This” Issue #D10. 

Download publication at www.hartfordign.org 

(includes “Information for the Hospital Team 

about a Patient with Memory Problems” form).

_______________________________

This brochure was originally designed and 

produced by the North Carolina Division 

of Aging and Adult Services (NCDAAS) in 

conjunction with the Joseph and Kathleen Bryan 

Alzheimer’s Disease Research Center through 

the U.S. Administration on Aging grant 

#90AZ2246. It was revised in August 2008 

by NCDAAS through grant #90AZ2782 in 

conjunction with the Joseph and Kathleen 

Bryan Alzheimer’s Disease Research Center, 

Alzheimer’s Association – Eastern NC Chapter, 

Duke Aging Center Family Support Program and 

Positive Approach, LLC. Grantees undertaking 

projects under government sponsorship are 

encouraged to express freely their findings 

and conclusions. Points of view or opinions do 

not, therefore, necessarily represent official 

Administration on Aging policy.

Distributed by:

Alzheimer’s Disease Education and 

Referral Center

www.nia.nih.gov/Alzheimers

P.O. Box 8250 

Silver Spring, MD 20907-8250

800-438-4380

adear@nia.nih.gov

December 2008

A Service of:

National Institute on Aging

National Institutes of Health

U.S. Department of Health and Human Services