Patient Education for Caregivers: What to Ask and Do When Your Loved One Is Being Discharged from the Hospital

For caregivers of older adults with dementia

When a person with dementia is discharged from the hospital, caregivers play a critical role in ensuring a safe transition. Hospital discharge is a high-risk period, and clear communication with the care team can prevent medication errors, complications, and hospital readmission. This guide explains exactly who to talk to, what questions to ask, what contact information to obtain, and what steps to take next.

1. Speak to the Right People Before Discharge

Before leaving the hospital, you should speak directly with these members of the care team:

The Nurse

The nurse is often your most important point of contact on discharge day.

Ask the nurse:

• What medications were started, stopped, or changed?
• When should each medication be given?
• What side effects should I watch for?
• What symptoms are normal, and what symptoms are dangerous?
• How should I care for wounds, catheters, or medical equipment?
• Are there activity restrictions (walking, bathing, lifting)?
• Ask the nurse to review the written discharge instructions with you.

The Doctor or Nurse Practitioner

This provider oversees the medical plan.

Ask:

• Is my loved one medically stable for discharge?
• What problems should improve, and how long will recovery take?
• What warning signs mean I should call you or seek emergency care?
• What are the important changes to the medication regimen, and why were they changed?
• What are the potential side effects of the new medications?
• What follow-up testing does my loved one need? How urgent is it? Why do they need it?
• Who are all the doctors that my loved one needs to see for follow up, when should they see them, and why should they see them?
• Any other medical questions. This is your best chance to ask the “why” questions to gain an understanding of the reasoning behind the instructions on the discharge sheet.

The Case Manager or Discharge Planner

This person coordinates the transition out of the hospital.

Ask:

• Where is my loved one going next (home, rehab, skilled nursing)?
• Why is this higher level of care needed?
• What services will they receive there?
• Has the next facility received the medical records, or are they linked?
• If going home, will home health services be ordered? If so, who is the agency and what is their contact information?

Also ask:

• What medical equipment is needed (walker, wheelchair, hospital bed)?
• Who arranges this equipment? Who do I contact for it? Is it paid for by insurance?

The Pharmacist (if available)

Many hospitals provide pharmacist counseling. If not available, you can also ask the treating provider some of these questions.

Ask:

• Can you review the medication list with me?
• Which medications are new?
• Which medications were stopped?
• Which medications are higher risk and need monitoring or follow-up?
• Are the new medications expensive? What should I do if I cannot afford them?
• If trouble taking pills/swallowing/etc., can they be split, crushed, or is there a liquid form?
• Are there any common OTC medications or supplements I need to avoid because of these new medications?
• Which medications increase fall risk or confusion?
• Request a printed medication list.

2. If Your Loved One Is Going to a Rehabilitation or Skilled Nursing Facility

Before transfer, speak to both the hospital team and the receiving facility.

Ask the hospital case manager:

• What is the name of the facility?
• When will the transfer happen?
• How will transportation be arranged?
• Will this stay be covered by insurance? (Medicare usually covers within the first 20 days, then a portion for the next 80 days). 

Contact the receiving facility and ask to speak to:

• The admissions nurse
• The unit nurse
• The facility social worker
  Ask the facility:
• Who will be the primary doctor?
• Who manages medications?
• How often will therapy occur?
• How will dementia-related behaviors be managed?
• How will I receive updates?

Patients with dementia often experience increased confusion during transitions, so early communication with facility staff is critical.

3. If Your Loved One Is Going Home

Before leaving, confirm the following:

Ask the discharge planner:

• Will a home health nurse visit?
• When will the first visit occur?
• Will physical therapy or occupational therapy be provided? What other home services, if any, were ordered?
• Was any new medical equipment ordered? When can I expect it by?
• Who is paying for home services and equipment?
• Who do I call if no one contacts me?

Ask the nurse:

• Does my loved one need supervision when walking?
• Are assistive devices required?

Make sure the home is safe before arrival:

• Remove tripping hazards
• Ensure good lighting
• Prepare medications in advance

4. Get Contact Information Before Leaving the Hospital

You should leave the hospital with names and phone numbers for:

• The hospital unit or nurse’s station
• The discharging doctor or clinic
• The primary care physician
• The rehabilitation or nursing facility (if applicable)
• The home health agency (if applicable)
• The pharmacy

Ask specifically:

• Who do I call during business hours?
• Who do I call after hours?
• When should I call 911 instead?

Write this information down and keep it easily accessible.

5. Schedule and Prepare for Follow-Up Appointments

Follow-up care is essential.

Ask before discharge:

• When should the primary care doctor be seen? (Usually within 1–2 weeks, though sometimes closer follow-up is needed)
• Are specialist appointments needed? If so, who and when does the follow-up need to be?
• Does any testing need to be done prior to the follow-up visit? Is it already ordered?

Call and schedule appointments immediately.

Prepare transportation for all appointments ahead of time.

Bring to appointments:

• Discharge paperwork
• Medication list
• Notes about symptoms or concerns

6. Watch Closely During the First 2 Weeks After Discharge

Patients with dementia are at high risk for complications after hospitalization.

Call the doctor if you notice:

• Increased confusion
• Excessive sleepiness
• Refusal to eat or drink
• New weakness
• Falls
• Medication side effects

Call 911 for emergent or severe symptoms, including but not limited to:
Chest pain, Difficulty breathing, Severe weakness, Stroke symptoms, Serious falls

Early action can prevent rehospitalization.

7. Know Your Next Steps as a Caregiver

Immediately after discharge:

• Obtain and review the medication list
• Pick up medications from the pharmacy
• Confirm arrival at rehab facility or home
• Ensure follow-up appointments are scheduled, and transportation is prepared
• Monitor closely for changes

Within the first week:

• Attend follow-up appointments. Bring your discharge papers from the hospital.
• Speak to rehab staff or home health staff, get their contact information
• Watch for medication side effects
• Ensure recovery is progressing

8. Help Reduce Confusion and Stress in Patients with Dementia

Hospital discharge can worsen confusion temporarily, some degree of this is to be expected in dementia. 

You can help by:

• Keeping routines consistent
• Providing familiar objects
• Speaking calmly and clearly
• Avoiding overstimulation
• Ensuring adequate sleep

Confusion often improves once the patient is in a stable, familiar environment.

Sources

Agency for Healthcare Research and Quality (AHRQ) – Care Transitions from Hospital to Home
https://www.ahrq.gov/patient-safety/settings/hospital/resource/guide.html

Centers for Medicare & Medicaid Services (CMS) – Discharge Planning Requirements
https://www.cms.gov/medicare/provider-enrollment-and-certification/surveycertificationgeninfo/discharge-planning

National Institute on Aging – Hospitalization and Older Adults
https://www.nia.nih.gov/health/hospital-stays-and-older-adults

Alzheimer’s Association – Hospital Care and Discharge Planning for People with Dementia
https://www.alz.org/help-support/caregiving/care-options/hospitalization

Family Caregiver Alliance – Hospital Discharge Planning: A Guide for Families and Caregivers
https://www.caregiver.org/resource/hospital-discharge-planning-guide-families-and-caregivers/

Institute for Healthcare Improvement – Improving Transitions from Hospital to Home
https://www.ihi.org/resources/Pages/Tools/HowtoGuideImprovingTransitionsfromHospitaltoHome.aspx

Centers for Disease Control and Prevention (CDC) – Caregiving for Older Adults and Preventing Complications
https://www.cdc.gov/aging/caregiving/index.html