If you’ve ever taken your loved one with dementia to the hospital, then you know exactly what I’m talking about. Just bringing them to a simple doctor’s appointment can be difficult enough. It is important for caregivers to remember that their loved ones deserve to be in a dementia-friendly environment, but until more doctors and medical staff are trained on how to interact with those who have dementia, caregivers should try to be with their loved one at all times during his or her hospital stay.
Gary Joseph LeBlanc is a certified dementia communication specialist who was a caregiver for nearly 20 years for his mother and father who had dementia. He has written several books and hundreds of articles on dementia and caregiving. He also founded the Alzheimer’s/Dementia Hospital Wristband Project and is the co-founder of Dementia Mentors, a website that features videos from people living with dementia.
Both of my parents had dementia. After being a caregiver for nearly 20 years, I learned that doctors and hospital staff often have difficulty handling dementia patients. Doctors and nurses ask dementia patients questions like, “Are you allergic to medication?” or “How many kidneys do you have?” They write everything down because they’re speaking to adults, but they don’t realize that they’re treating adults with dementia. I went through multiple hospital stays with both my parents and every stay was a nightmare. Now, I tell every caregiver that if his or her loved one is in the hospital with dementia, a family member or close friend needs to be there with the patient 24/7.
My first experience taking my dad to the hospital taught me that it’s important to remind doctors that your loved one may not answer his or her questions correctly and the first step doctors should take is getting your loved one the treatment he or she needs. At 1:30 in the morning, my dad was trying to walk out of the house with nothing on but his boxers. I blocked the front door to prevent him from going outside and when I put my hand on his shoulder, I realized that he was on fire; he had a 104° F fever. After driving him to the hospital, I explained to the emergency room doctor that my father was in the later stages of Alzheimer’s. My dad started asking why there was green smoke pouring out of the ceiling tiles in the hospital (there was no green smoke). The doctor asked questions like, “Do you know how old you are?” and “Do you know who the president is?” but my dad said nothing. When the doctor walked out of the room, my dad looked at me and said, “This guy thinks he’s a doctor? He doesn’t even know who the president is.” The doctor didn’t realize that dementia patients are easily overwhelmed in hospital settings and that rather than asking my dad multiple questions that he couldn’t answer, he needed to treat his fever.
Something else caregivers should remember is that when you take your loved one into the emergency room, you shouldn’t let him or her go into the triage alone. Often, family members start filling out paperwork in a front room, while dementia patients are taken into a back room. Instead, take the papers with you so that you don’t leave your loved one alone. This way, if the doctor starts asking your loved one questions that he or she cannot answer, the doctor doesn’t get misinformation; if the information a doctor gets is incorrect in the beginning, your loved one’s entire stay may not go well. During another hospital visit with my dad, I had been staying with him for 24 hours each day, but told the nurse I was going to get 10 minutes of fresh air. When I walked back in the door, I noticed that the same nurse was standing over my father with a clipboard asking for his prescription history, but my dad couldn’t tell you if he took a pill two minutes ago. My dad looked confused and irritated. He was frightened because a hospital stay was not part of his normal routine and he was being asked a number of questions that he did not know how to answer.
After having similar experiences in the hospital several times, I founded the Dementia/Alzheimer’s Hospital Wristband Program. Part of the program includes finding someone who can stay with your loved one at the hospital, keep them occupied and help them answer questions about their medical history if you cannot be there. The program has several other components as well: 1). having patients wear a Purple Angel logo on their hospital wristband 2). placing the logo on their door so that doctors know they are at risk for cognitive impairment 3). extensively training doctors and hospital staff in dementia care. So far, I have introduced the program to about 15 hospitals. The Bayfront Brooksville Hospital in Florida became the first hospital in the United States to implement the program.
Hospital settings are often scary for dementia patients. The IV pumps beep every 45 minutes because the bag’s empty and the closed curtains disorient dementia patients. I advise hospitals that it’s beneficial to leave the curtains open when treating dementia patients. A doctor may tell a patient’s roommate that he’s having surgery in the morning. When the doctor walks out that door, the man with dementia sitting on the other side of the curtain may think he has surgery in the morning because no one took two seconds to put his or her head around the curtain to reassure the person with dementia that he or she isn’t the one getting surgery. All the dementia patient hears is a voice on the other side of the curtain. If you’re a caregiver, ask the doctor or hospital staff if it’s possible to leave your loved one’s curtain open.
Caregivers should also make sure that doctors are not over-medicating their loved ones. Often, doctors do not know how to handle behaviors and the first thing they do is restrain or medicate them, but communication skills are vital. People with Lewy body dementia are extremely sensitive to medications, so medication can do more harm than good. Because of the strange smells, new faces and chaos that often takes place in hospitals, a hospital stay can do a lot of damage. Emphasize to doctors that you do not want your loved one over-medicated, especially when the doctors can try communicating with your loved one first.
If you’ve ever taken your loved one with dementia to the hospital, then you know exactly what I’m talking about. Just bringing them to a simple doctor’s appointment can be difficult enough. It is important for caregivers to remember that their loved ones deserve to be in a dementia-friendly environment, but until more doctors and medical staff are trained on how to interact with those who have dementia, caregivers should try to be with their loved one at all times during his or her hospital stay. Caring for parents with dementia and seeing what they had to go through was difficult, but at least they’re not suffering anymore.