by Vicky Ruppert & Ann Henderberg
The Emergency Departments of today are scary places for caregivers and those with dementia. A person with dementia is essentially experiencing slow and steady brain death in various but relatively predictable areas of the brain. As the disease progresses, the person will have all of their senses affected in some way: sight (narrowing of the field of vision), sound (loud noises hurt and are scary, constant noise causing sensory overload), taste ( changes of likes and dislikes), smell (loss of detection of smoke, gas, chemicals, body odor, spoiled food, urine or feces) and touch (more sensitive). Because of these sensory changes, the caregiver constantly adjusts the environment at home to reduce anxiety and have a more predictable (routine) and successful day.
By contrast, the Emergency Department is an unfamiliar, chaotic, noisy place where strangers rapidly come in and out collecting information and taking tests. Compounded by their inability to remember why they are there and how long they have to stay, the person with dementia experiences a heightened state of anxiety. This can lead to all sorts of negative behaviors ( “fight or flight” mechanisms) to escape the perceived “danger”.
By making changes in approach, the triage, and the environment of the Emergency Department, the increase in anxiety and negative behavior can be kept to a minimum. The caregiver walks in already emotionally overloaded and shouldering a tremendous amount of stress. Their fears include whether the person with dementia will improve and will they be able to come back home. Will negative behaviors lead to documentation in their chart that prevent them from being accepted by nursing homes? This is a very troubling outcome of many Emergency Department visits. When agitation and violence issues surface and are documented, the only placements available to the dementia patient are the behavioral facilities of which there are three in New York State. They are The Highlands at Brighton (Rochester), Demay’s Moore’s Place (Newark/Wayne Hospital), and Soldiers and Sailors Memorial Hospital (Penn Yan). Frequently there are no openings in any of the facilities and the patient must wait for a bed. When there is an opening it may be in an institution far away from the caregiver! The outcome of these behavioral problems is a tremendous rise in the cost of placement. In 2011 an average nursing home fee was $12,500 per month. That same year the fee for Moore’s Place was $24,500 per month. Will this bankrupt the family?
With the swell of baby-boomers reaching 65 in the next few years, and the majority of dementia diseases diagnosed in the 65 and older population, we need to make all staff aware of how to approach and communicate with someone who has dementia. It would also be prudent to look for signs in the yet-undiagnosed patient and treat them accordingly for a more successful ER visit. The approach can be quite different from that of a person whose brain is uncompromised. We also need to make physical changes in the Emergency Room environment to better accommodate this population. Perhaps the ideal solution is to have one local hospital designated as dementia-friendly with a separate unit for dementia patients. That way not every hospital needs to make the physical changes necessary. It is a win-win situation that will make staff/patient interaction better and less eventful.
Staff Related Points of Interest:
Some hospitals in Canada and the United Kingdom have already instituted a dementia screening tool given to all incoming patients. This allows the patient to be treated using the dementia protocol from the start.
Have all staff members watch compulsory training videos given by Teepa Snow, a dementia authority, trainer, and licensed occupational therapist on YouTube. She conveys great insight as to why your approach with a dementia patient needs to be different.
Have all possible dementia candidates marked in some way so all staff know they should be treated by a different protocol (perhaps a purple name band instead of a white one). The purple name band has been instituted in a number of Florida hospitals and works well. It doesn’t infringe on the patient’s privacy rights.
Put the person with dementia and their caregiver in a single room, not with another patient.
As part of a dementia protocol, have a higher priority for discharge in a timely manner where appropriate so that the patient doesn’t have to wait 6 hours for the release signatures by doctors. The act of waiting alone raises anxiety.
- Approach from the front, stop about 4-6 feet in front of them and introduce yourself, then come closer. Speak to both of them, not just the caregiver.
- Make sentences as simple, clear, and short as you can.
- Don’t stand directly in front of them. They will feel trapped (confrontational).
- Stand with your body slightly oblique to them (shoulders cocked to the side) so that they feel they have an avenue of escape.
- If you are going to lead them somewhere, use the Teepa Snow “flying dove” handhold ( palms together, other hand over the grasp). It allows less stress on arthritic fingers and a proven anxiety- lessening hold.
- Minimize the use of cardiac monitors (noise), IV’s, and urinary catheters unless absolutely necessary.
- Allow dementia patients to wear their own pajamas. They will be warmer and will be familiar with how to toilet themselves with their own PJ’s on. Most dementia patients are more sensitive to cold and hospital gowns are cold.
- Make sure they have water available so they stay hydrated.
- Provide meals in a timely manner, unless contraindicated.
- Offer frequent trips to the bathroom.
- Allow patients to be mobile. Walking helps reduce anxiety as long as they are stable and their caregiver is with them.
- Provide a 1:1 aide if the caregiver cannot be with them so that they stay oriented to the situation.
- Make sure they wear their glasses and hearing aides. These will help to keep the person calmer because they have less chance of misinterpreting their surroundings.
- Treat pain promptly.
- Look to discover what has changed in behavior today, vs. yesterday that brings them here.
- Minimize the use of psychotropic drugs such as Haldol in Lewy-body diagnosed patients to help prevent neuroleptic malignant syndrome, which can be deadly!
Physical Changes To The Hospital Setting For Dementia Patient’s:
- Make sure floors are light colored and all one color to the wall edge. You can have dark tile at the edge to define where the floor ends and the wall begins. A pattern, especially a dark one will appear to the person with dementia as a hole they have to avoid. Make railings a different color so that they can be seen.
- Color bathroom doors a different color than the walls so they stand out, and have signage (written words & symbols) low enough and big enough that the sign can be seen.
- Use fixtures (toilet paper rolls, soap, faucets) that are user friendly and familiar.
- Have available single rooms for the dementia patient and caregiver. Provide a lounge chair for the caregiver to rest/sleep in, encouraging them to stay with the patient as long as they can.
- Increase the lighting in the room you assign. They see better in brightly lit rooms.
- Have the availability of soft music to soothe them.
- Availability of adjustment of room temperature to keep the patient warm.
- You have to act as the patient’s advocate at all times.
- Bring all medications in their original bottles. Make the nursing staff aware that you have them with you, but don’t administer them unless you have permission by the nursing staff.
- Bring hearing aids and glasses (have your loved-one wear them).
- Bring pajamas, bathrobe, toothbrush, and toothpaste for the care-partner as well as a change of underwear.
- Make sure they eat and drink in a timely manner.
- Bring any papers that will be needed: DNR, Molst Form, Health Care Proxy, Health Care Cards, and copy of their diagnosis.
- You can help the staff by providing them with a personal information sheet that includes the person’s normal routine, how he or she prefers to be addressed (e.g., Miss May, Dr. May, Susan, etc.), personal habits, likes and dislikes, possible behaviors (what might trigger them and how best to respond), and nonverbal signs of pain or discomfort. This will especially become useful if they are admitted.
- Do not leave the person with dementia alone. Ask for a 1:1 aide to keep the patient oriented if you need to go home to rest, or have another relative who knows the patient well come and stay while you go home.
- If you end up in a situation where your loved-one has to be admitted to a behavioral facility, visit each facility even if no beds are available. Having a face to attach to a name increases your odds of getting a bed if one suddenly becomes available.