Going to the ER with Someone Living with Dementia

Categories: Ask an Expert, Care Partners, Featured Article, Need to Know|By |Published On: March 1, 2023|

10 expert tips to make an ER visit less stressful.

This article was written by a guest contributor, and the views, thoughts and opinions expressed in this article belong solely to the author.

Tip #1: Have a goal or reason for coming to the ER

When you come to the ER, please tell us the reason you are there. We need to understand the goal you have in mind for coming to see us. I understand often this goal is going to be obvious, but the ER is a chaotic, fast-paced environment. We are there to triage and stabilize people.

To help you know what to do next, to address your fears, concerns and answer your questions, communicate openly with us.

Tip #2: Be available to ER staff caring for your person

After years spent working in the ER, I know the value of having the person there with me who knows the patient living with dementia I am caring for. When they cannot speak for themselves, I need your help. You are the medical care teams’ advisor as far as what is best for your person. You know what is happening for them day to day. You will have a better understanding and be able to guide me about whether what is going on now is safe to manage where they are currently living.

I cannot stress enough how important it is to have you there physically present or at least available by phone to help me make decisions.

Dr. Brittany Lamb

Tip #3: Have identified and communicate your person’s goals of care

When we make medical decisions on someone’s behalf we should always consider their overall goals of care. Identifying your person’s goals of care is foundational work as a medical decision maker for any person, especially for someone living with dementia. It will almost certainly improve communication with your person’s care team allowing you to be an even better advocate.

If you are hearing this concept “goals of care” now for the first time, please read my other posts to learn more.

Tip #4: Keep a “To Go” kit ready and easy to grab

Your To Go kit should include two main groups of things.

Photo courtesy of Pexels.

One group will include paperwork, such as:

  • Advance health-care directives such as a Living Will and copies of the medical order forms
  • Common medical orders forms such as the DNR (Do-Not-Resuscitate) and POLST (Physician Orders for Life Sustaining Treatment)
  • A medication list
  • A copy of your medical power of attorney form
  • It’s never a bad idea to have a copy of their ID card and insurance card as well

The other main group of things to put inside of your To Go bag are items that will make the ER visit less boring for you and for your person — things that might make you both more comfortable. For you, items like a phone charger, book, snacks and water — maybe a small travel blanket or neck pillow. Also pack a pen or pencil and pad of paper to take notes and document important things. For your person, take something that makes them comfortable or reminds them of home — a blanket, stuffed animal, something to fidget with or a pillow perhaps. You may also want to consider a pair of glasses, a cheap watch or assistive hearing devices.

Store your To Go bag in your car or right by your front door. You want it to be in a place where you can easily grab it. Anyone who cares for your person should know where the To Go kit is stored.

Tip #5: Boring is good

I say this to a lot of my patients after we discuss our plan for care in the ER: When people are not in and out of your room, this is usually a good sign. If you are constantly surrounded by medical staff and needing frequent reassessments, there is often something bad happening. It is a good thing to be bored in an ER.

Photo courtesy of Getty Images.

Expect to have your entire day taken up while there. You can also expect to feel frustrated, like nothing is happening and everything is moving too slowly.

We don’t want to waste your time, but care in the ER is unplanned. We need to be immediately available to anyone who is very sick. Care of people who are very sick is more time consuming. We can’t leave their rooms as often. They require more team members to help. Sometimes we have five to 10 staff members in a room with a critical patient. Everyone else then has to wait. This creates backlogs of tasks we need to get done. It then re-prioritizes everything we do after we are able to move on from the sickest patient.

If you are in an ER and bored, try to feel grateful rather than frustrated. Do not worry. We will not forget about you. We likely need the room you and your person are in to care for the next patient.

Tip #6: Tell us your person has dementia

I know this may seem unnecessary. You might be thinking, but it’s in the record. You might be right. It could be listed there and should be listed there. If your person is like many of my patients, dementia may be listed along with 10 or 12 additional diagnoses. It’s easy to miss. Even if it is listed there, I still want you to tell us. That verbal cue helps us remember that your person will likely need a bit of extra support or attention. It also tells us they may not be able to choose for themselves. Knowing they have dementia can tip us off that you, their caregiver, need to be involved.

Even if your person is making their own decisions currently, they may turn to you to help them remember what decisions were made and what the plan was after the ER. I see a lot of joint decisions between a family caregiver and their person in the earlier stages of the disease. We need to know because it can change everything from a treatment or care standpoint. We may need to provide more resources to be able to make a plan for home work. I recommend you have a strategy for telling us that is not upsetting to you or your person.

A card you can flash, or a note written on your phone to show us. Maybe something written on a medication list you carry to show staff. Do double check and make sure the diagnosis is documented in your person’s medical record. It needs to be there, but we also need to be reminded verbally.

Tip #7: Ask questions

I like to say, “what questions do you have?” instead of “do you have any questions?”. I see it as my job to make you comfortable with the situation you and your person are in while in the ER. Some days I do this better than others. There are a lot of pressures on us, and we do not always have time for long discussions.

Photo courtesy of Getty Images.

A good day at work for me is when I can explain the WHY behind what we are doing and the decisions that are being made. I find when I have the time to do this there are naturally less questions because I am anticipating them and addressing them in my explanations. I do believe that most of us providing care in the ER feel similarly and want patients and their family members to feel reassured by what we are doing and the plan going forward.

Do not be afraid to ask if you do not understand something. In your To Go kit have a pen and paper. Think to yourself, “questions, comments, concerns.” While you are sitting there waiting, write down your questions. You might want to know what is happening now, what the next steps are or what the plan is going forward. Consider what you are concerned about as well. Your concerns can be turned into questions. Sometimes relaying your question to the physician through another staff member is the fastest way to get it answered.

I am happy to answer questions because I want you to know what is going on. When we are on the same page and your worries, concerns and questions are addressed, you will be happier with the care you or your person receives.

Tip #8: Be kind

Again, this may seem like common sense, but “do unto others …” is the golden rule for a reason. It 100 per cent goes both ways. When we (the ER staff) get stressed, super busy and run down, we also have to remind ourselves that you all are having your worst day, week, month or year. You don’t want to be there in the ER. When someone gets angry or complains about an issue out of our control, I often say to the staff, “Don’t take it personally. They are having their worst day.”

On the flipside, I tell my clients to “kill the staff with kindness.” I mean it. A simple, “Thank you for what you are doing,” or “It’s OK, I understand you are busy,” means so much to me. I feel my blood pressure go down when people are nice during a stressful shift. Honestly, it makes me want to stay and chat longer or come back to their room sooner. Please keep in mind sometimes our top priority is not providing comfort, it is saving a life. Be kind to us.

Tip #9: Ask for help

We need to know what your limitations are. Oftentimes what you need help with is the reason why you are in the ER in the first place.

Social workers are more and more present these days in the hospital and in many ERs as well. They are invaluable in connecting families to services. They are experts when it comes to coverage of hospital, rehab stays and home health services. Ask to speak to one.

Photo courtesy of Canva.

Ask for help if you are going home and think you might need a nurse to come in for wound care or wonder if your person could use physical or occupational therapy at home. Some ERs can get home health services set up at time of discharge. If you are confused about your person’s medications, ask if there is an ER pharmacist who could talk with you. Not every ER staffs a pharmacist, but many do. They are an invaluable resource.

One final point: we 100 per cent need to know if you need help because you do not feel your person can stay where they are currently living.

Let us know as soon as possible if this is why you have come to the ER. It could change the tests that we order and what we do to evaluate your person. Your explanation may help us get you the support you need and change the way you feel. In some cases, we may be able to look for another living situation right from the ER. If there is a need for care that you are struggling, with just ask us.

Tip #10: Know your person’s medical history

This is a tip which requires action on your part, but it is worth the effort.

I believe people living with dementia deserve a plan for their medical care now, and into the future. Allow me to be direct with you.

As someone’s medical decision maker it is your job to fill in your knowledge gaps so you can speak on their behalf. You don’t know what you don’t know. You may have an idea of treatments you would choose now and going forward, but only if you know all of their history, and how it could affect their future, will you be able to create a complete medical care plan.

Gathering their entire medical history, including the disease(s) causing their dementia, is the first step. Next, you’ll need to learn what these conditions look like as they worsen. This will bring to light what your person is likely to face; what they are at risk for in the future.

Then you can focus on learning how these conditions are treated. The treatment options are the choices you will have to make on your person’s behalf. These steps are how you create a medical care and treatment plan for your person.

Keep these tips in mind and hopefully your next ER visit will be better than the last.

GET MORE INFORMATION

This article is based on two longer blog posts by Dr. Lamb that are full of additional tips and examples. For more, read: Going to the ER with Someone Living with Dementia? 10 Tips for less stress — Part 1 and Part 2.

Dr. Lamb has also put together a free one-hour audio training for people who will be, or already are, making medical decisions for someone living with dementia. She teaches five key steps to take to feel more prepared and confident in this role. You can find the training on her website BLambMD.com.

ABOUT THE AUTHOR

Dr. Brittany Lamb graduated from medical school at the Florida State University College of Medicine and was residency trained at The University of Alabama at Birmingham. She is a board-certified emergency medicine attending physician with over 12 years of health care experience, more than eight years in the ER.

Dr. Lamb supports care partners to become confident medical decision makers through her free Facebook Community and offers one-to-one coaching by phone. Learn about her services at BLambMD.com.

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