Five tips to ease a trip to the ER for a dementia patient

For patients with dementia, a trip to the emergency room can be not only disorienting but frightening.

“It’s really not the place for someone with dementia, but people need to be treated. And in a pinch, that’s where you go,” said Suzanne Faith, RN CDP, program manager for the Dementia and Alzheimer’s Caregiver Support Program part of Cape Cod Healthcare’s Neuroscience Institute.

However, there are things that caregivers and loved ones can do to make a trip to the ER easier for both the patient and themselves, said Faith, a registered nurse and certified dementia practitioner. That starts with caregivers being as educated as possible about the common problems that can occur in dementia before a crisis, she said. CCHC’s Dementia & Alzheimer’s Caregiver Support Program can help with educational materials, including videos, family consults and support groups. 

“We try to educate the family members through family consultations, and further support through our ongoing educational support groups, so they can learn how to manage the disease,” she said.

The hard truth for families is that dementia patients over age 65 are twice as likely as those without dementia to end up in the emergency department from a fall or health issue, according to a 2023 University of Michigan study. The study found that patients diagnosed with dementia account for nearly 7 percent of all ER visits. It is hardly an unusual problem in Barnstable County where a third of the population is over 65, according to the U.S. Census. Faith estimates 11,000 to 13,000 people on the Cape and Islands have been diagnosed with one of the 80 or so types of dementia, including Alzheimer’s, vascular, Lewy body, and frontotemporal.

Often a trip to the ER comes in the mid-stages of dementia but can push the patient further into their disease process, Faith said. For example, the patient has a fall, fractures a hip and requires surgery. Anesthesia, the change of routine and pain meds can cause an increase in disorientation, she said. “And then they get discharged to a rehab facility. The person entering the hospital and the person that is discharged is often like a shell of who they were before the onset of the injury.”

Or, a patient may have a metabolic problem, such as a urinary tract infection. A patient without dementia would likely notice symptoms, such as burning during urination. “But in dementia, they cannot verbalize their symptoms so they either get super agitated or they get very somnolent,” she said.

All this makes it important for caregivers to be prepared and educated and to take some steps before an ER trip.

“We will work with any caregiver who is the healthcare proxy and is managing any kind of dementia because they all need to learn similar strategies,” Faith said. “Our mission is to educate the family caregiver so that they're better able to manage the care needs in the home environment to understand behaviors, what they mean and in general become better communicators”.

How to Make an ER Trip Smoother

Here are Faith’s five suggestions to ease a trip the ER:

• Know where you stand with the patient’s healthcare proxy. A healthcare proxy gives another person the legal authority to make healthcare decisions for the patient. If the proxy has not been invoked by a doctor, a caregiver may not have the right to insist that a patient go to the hospital or make decisions about treatment, Faith said. “There comes a point in the disease progression where the doctor, whether it's the primary care or the neurologist, will invoke the healthcare proxy,” she said. “It says on a healthcare proxy that this individual will become your healthcare proxy when it's determined that you lack the capacity to make healthcare choices on your own behalf. So, who makes that decision? It has to be the doctor, and few people know about that.”
• Have the patient wear an ID band signifying dementia. This will make it immediately apparent to emergency personnel that there’s a cognitive problem, Faith said. Also, in most hospitals in Massachusetts, including Falmouth Hospital and Cape Cod Hospital, patients with dementia have a purple banner running across the bottom of their electronic medical records that indicates dementia, she said.
• If possible, accompany your loved one to the emergency room. “You know them best,” Faith said. Both Cape Cod and Falmouth hospitals are expert at understanding the special needs of the person with cognitive issues and the fact that a loved one needs to be at the bedside if at all possible, Faith said. “Because they're the person that's going to be able to de-escalate any situation that's going on and keep them from being anxious.” If the healthcare proxy has not been invoked, a caregiver can act as the accurate historian, helping the providers make appropriate care decisions, she said. An individual who is not a healthcare proxy can still provide information to the providers, but under HIPPA privacy laws they will not be able to receive any of patient’s medical information directly from hospital staff without the patient’s permission.
• Take a comfort item to the hospital. Keep something handy for these types of emergencies, such as a weighted blanket or a “memory box” – a shoebox or something of that size filled with sensory things that the patient can examine and connect with, she said. “Or they may still be able to use an iPad or an iPhone, and so that can keep them calm. Or music. Or just holding their hands.” These strategies not only can keep the patient calm but can help avoid unnecessary medication for agitation, fear or anxiety, she said.
• Know your rights under the law and available services. For example, under Massachusetts law, someone who goes into the emergency room or the hospital for any surgery and has a cognitive deficit is required to be referred to a community dementia organization. This is to ensure that the family knows about wraparound services and safety protocols, Faith said. The Dementia and Alzheimer’s Caregiver Support Program is FREE, and, among other services, offers support groups in Falmouth, Mashpee, Sandwich, Hyannis, South Dennis, Orleans and Plymouth. Some offer concurrent groups for the dementia patients. Patients can refer themselves to the program or be referred by a doctor, case manager or the health-care proxy holder. The program can be reached at dementiainfo@capecodhealth.org or 774-552-6080.