How to Prepare for an ER Trip With Someone Who Has Alzheimer's

Dementia Can Complicate Already-Stressful ER Treatment
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Preparing ahead of time

  • Prepare contacts. Make a written list of contacts, including the primary caregiver and other family members or friends who help with care, who should be notified in an emergency. Keep a copy with you in case you get a call about the patient's condition and can't come to his side yourself; share copies with other caregivers and facilities he frequents, such as an adult day care center or church program. Note which people have legal permission to be present when physicians and other staff discuss his medical issues.
  • Prepare records. Anyone who accompanies the patient in the emergency room should bring along a copy of his medical records and relevant legal documents. These include:
  • A clear summary of his medical condition (including the Alzheimer's disease and any other health problems)
  • A list of all the medications, vitamins, and supplements he takes, including dosages
  • A list of any allergies
  • Contact information for his primary care physician and any specialists he sees
  • Prepare for medical access. A companion who has the patient's verbal permission to stay by his side should have no problem gaining access. But you can't count on a verbal okay in a crisis or if he's already in mid- to late-stage Alzheimer's. If he's confused or agitated or unable to grant permission, the hospital staff may require that you present a legal document (such as a health care proxy) that allows you to stay with him -- another important reason to obtain this authority soon after his diagnosis. It's best not to count solely the patient's spouse for this role, as she or he may be too upset in a crisis (or, in the event of a car accident, for example, also indisposed).

Hospital policies vary. Make sure you let staff know the patient has Alzheimer's disease and that you are a caregiver (or a son or daughter there in that capacity).

First reactions and dealing with an emergency room

Reacting when an emergency happens

  • Consult if you can. If possible, call the patient's doctor about a medical problem before going to the emergency room. Depending on the circumstances, a physician may be able to see an urgent case in the office on short notice. Or she may have advice on how to deal with the situation or the ER specifically.
  • Don't drive to the ER. Calling an ambulance is considered safest for someone with Alzheimer's. Confusion or agitation, which may worsen under stress, can make the ride to the hospital challenging and dangerous (especially if you're alone with the patient). Note: His insurance may cover some ambulance service providers and not others; it's useful to check what's covered now, before a crisis happens.
  • Bring essentials. Take the essential health and legal records with you, as well as change in case you're in a hospital area where you can't use a cell phone. (You don't want to leave him alone while you step outside.) If you have time and it's appropriate, bring a comfort item (such as a family photo) along with his medications, a change of clothes, and personal hygiene items (including adult diapers, if used), in case the visit drags on or he needs to be hospitalized.

Navigating the emergency room

  • What happens first: Triage will likely be the patient's first stop in the ER. A staff member will record vital signs and a summary of his current medical issue and medical history. Make certain this person notes that the person you're caring for has Alzheimer's disease -- in fact, tell this to every new medical staffer you encounter. Explain what stage he's in and that you're his caregiver (or his son or daughter, there to support and help him). The staff will likely do a brief mental exam and then make a decision about the urgency of his situation. This will determine how quickly he will receive medical care. A frail elderly person with dementia is rated more urgent than a younger person with the same condition, or than a peer without dementia with the same condition.

Once you've left triage, if the issue is not life-threatening and you aren't seen immediately, you'll register him, which creates a hospital record and involves the presentation of insurance and Medicare/Medicaid information. (In some cases this step may be completed at his bedside.) Then try to find a relatively peaceful, quiet spot in the waiting area where you can sit down.

  • Stay close. It's important that you or another trusted helper stay at the patient's side at all times in the hospital. Any hospital setting, but especially an emergency room, can be intimidating and disorienting to him, and his response can interfere with his care. An ER visit can involve a lot of waiting (often several hours), many questions that require remembering medical history and other facts, and interacting with various strangers -- three situations that are stressful to someone with Alzheimer's.
  • What to say: When he's called to be examined, reintroduce yourself and, if necessary, briefly explain again why you need to accompany him: "I'm Mr. Smith's daughter and I have the legal okay to stay with him, because he has stage 2 Alzheimer's disease ." He may be examined more than once (for example, first by a resident and then by an attending physician). Be patient and don't assume that each new face knows about his Alzheimer's.
  • What to do: One of your most important contributions will be to listen to the physician's discharge instructions. The patient is liable to forget or misunderstand them. You'll likely receive a document describing them; you should read and be sure you understand them before you leave the hospital.
  • Your role in the ER:

    • To calm and reassure the person in your care
    • To help answer questions from physicians and other staff
    • To ask for assistance if there's a problem
    • To get attention if things seem to reach a standstill
    • To listen to the diagnosis and discharge instructions
    • To ask questions as needed for clarification
    • Where to find help: Depending on the patient's condition and the nature of the discharge instructions, you may want to inquire about discharge planning services. This hospital service, usually pro vided by a social worker, helps you learn how best to help the patient carry out discharge instructions and handle follow-up care. You will also receive information about other resources, such as visiting-nurse or home-health-aide services.

    You should feel free to ask for help from the hospital social worker (or geriatric case manager) if, at any point during the emergency-room treatment, the situation becomes overwhelming, or you need assistance advocating for the patient, or if he must be hospitalized and you need help and advice.

Paula Spencer Scott

Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers and much of the Alzheimer's and caregiving content on Caring. See full bio

about 1 year, said...

Thanks for the article and additional suggestion about having something written down when going to the ER. I carry a small card in my wallet which says, "The person with me has Alzheimers; please be patient." I use this at check out counters and at airline security stations. The response has been very positive. I will make a new one which also says he is unable to communicate verbally due to his late-stage Alzheimers.

about 1 year, said...

Yes to all of this. Expect that none of the staff will be trained to deal with dementia patients, which is sad since the ER should be trained to expect anything. If your parent like mine, does not know that he/she is ill and gets upset when anyone implies this is so, you need a card or something to hand each person who walks in the room or you will have to deal with employees that will repeatedly say things like " so she has Alzheimer's" which will cause much distress on the patient. The staff will also not understand that people with dementia cannot speak for themselves. They typically think that there has been a stroke. I find it very difficult to make them understand that at her stage we cannot discuss her condition in front of her as it makes her more agitated and that is something the caregivers don't want to have to deal with.

almost 3 years, said...

Great information. I just read a post on about the caregiver being prepared with things for themselves to make er visits less taxing. Thank you for sharing this vital information.

about 5 years, said...

I wish I had seen this article sooner since my father was in this situation and we did not know of all the medical questions that we were asked to answer about his health when going to the hospital and then being transferred into a rehab facitlity and nursing home. Thank-you for this article and now I will for sure know what we should have if there were ever an emergency again.

over 5 years, said...

The step by step procedures including intake and discharge. Also to be reminded that I need to tell every individual who sees the patient that he in fact has Alzheimer's.

over 6 years, said...

I do all of these except stay with her constantly. The ER visits have been anywhere from 6-12 hours. I would go crazy if I didn't take a break. This was a good reminder that on the rare occassion I'm out of town I should have EVERYTHING in order for the caregiver there. I have also found when I tell the ER staff about my mom's dementia they still repeatedly throw questions at her, which she can't answer. It's gotten to the point that I wait until they specifically ask me...sometimes after my mom has rambled on to them and they look at me with questioning eyes. Did they think I would lie about a thing like that!

about 7 years, said...

My mother, who has Alzheimer's and lives in an Assisted Living facility with an Alzheimer's unit, recently had to make an ER visit to have three stitches in her finger. The facility called me, but when I arrived my mother was all by herself. I could not believe she was sent up there by herself in the ambulance. She could not answer any of the questions the hospital staff asked. I am printing out this article and taking it to the director of the Assisted Living facility that my mother lives in. Thanks!

over 8 years, said...

We typed current rx. and other pertinent data on the back of a favorite photo. That way she keeps it with her in her purse.