How to make ERs less problematic for patients with dementia

I recently spent a long afternoon hiding from the nurse in the emergency room of a prestigious hospital. My sister and I were there with my mother, who has dementia, and the staff reminded us several times that only one caregiver at a time is allowed.

But that wouldn’t have worked for my mother. The sights and sounds in the hallway overwhelmed her limited cognitive capacity, and she repeatedly got up to leave.

Although the doctors and nurses were sympathetic to our predicament, the only formal intervention offered was a clinical attendant who could guard a room to ensure that my mother stayed inside, which would have almost certainly compounded her confusion and agitation.

We received solid medical care, for which I am grateful (the doctors identified an infection) and my mother ultimately recovered, but the experience itself was very difficult.

We were initially triaged by an understanding and professional neurologist, but despite my attempts to communicate with the care team, for the following four hours we received only occasional updates from the resident and deep sighs of impatience from the nurse. There was a watercooler but no food available; had my sister not been there, I would not have been able to step away and buy snacks for my mother. The doctor declined to request that the results of the CT scan be expedited, suggesting that my mother receive IV antibiotics instead of pills not due to medical necessity but to distract her while we waited for the results — an offer we declined.

Millions of patients with dementia, most elderly like my mother, end up in emergency departments each year, and likely many more avoid them altogether because of their potential to worsen rather than improve symptoms. Studies have found that patients with dementia are at greater risk for problematic, preventable emergency care outcomes, including long hospital stays, readmission to the emergency department, and increased mortality.

When I spoke with my mother’s outpatient neurologist the next day, he instructed: “Do not bring a patient with dementia to the emergency room unless she is turning blue.” He suggested calling the doctor on call in his practice instead, acknowledging the difficulties seeking emergency care poses for patients with dementia and framing it as an option of last resort.   

This reality puts patients and caregivers in an unfair and unsolvable dilemma: risk emergency care, with its lengthy timelines, small indignities, and potentially serious adverse consequences, or manage the acute medical situation with typical outpatient care.

Relatively minor changes to the process of getting care in emergency departments would substantially improve the experience of patients with dementia and minimize reactions like confusion and agitation. Reviews of the literature recommend triaging patients quickly (which happened in our case), providing them with quiet spaces to wait, encouraging caregivers to stay with patients and actively including them in care decisions, and training staff to communicate effectively with patients with dementia and their caregivers.

The ED Dementia Care Training program funded by the Dementia Australia Research Foundation provides more detailed guidance, suggesting that patients with dementia be encouraged to eat and drink and that efforts be made to keep them oriented to time and place, promote their mobility, and assess and manage pain.

While the American College of Emergency Physicians provides recommendations for the emergency care of older adults, it suggests screening for dementia and offers only general suggestions to improve care (e.g., engage caregivers and offer appropriate medications). This is the same for emergency departments that seek to be accredited as Geriatric Emergency Departments — criteria include screening for dementia with few specifics about managing it beyond recommendations that apply to geriatric care more broadly.  

This limited guidance reveals the ways in which the cognitive limitations of patients with dementia are systematically overlooked in medical settings. I was reminded of my multiple trips to the emergency room with my young daughter, who miraculously remembers those experiences with fondness. The pediatric emergency room staff anticipated the cognitive limitations of young children and accommodated them gracefully: giving her a private space, providing her with cartoons and popsicles, describing the medical procedures in language appropriate for her age, and even getting her to believe that stitches were “string bandages.” As her caregiver, I was not made to feel guilty for her impatience, and no one would have thought to suggest that we station a clinical attendant outside of her room to make sure she stayed inside.

As more Americans develop dementia each year, they, their caregivers, and emergency department staff would benefit from clearer guidance and structural support for implementing changes to emergency rooms across the country. There are serious costs to ignoring this problem: patients (and their caregivers) avoiding care, returning to the hospital earlier than needed, and requiring additional resources like expensive hospital stays. In a society that devalues people with cognitive impairments and glosses over the concerns of their caregivers, anticipating and providing for their needs in this high-stakes environment would send a meaningful message.

As the afternoon turned into evening, we got the results of my mother’s CT scan and a prescription for antibiotics, and she was discharged from the ED. I walked into the cold New York air relieved but exhausted, hoping that I would not be back.  

Gabriela Khazanov, Ph.D., is an assistant professor at the Ferkauf Graduate School of Psychology (Yeshiva University) and a licensed clinical psychologist.