Taking someone with dementia to the emergency department? Expert advice to help ease the stress | Canada Voices

Stephanie Muskat still recalls a particularly difficult visit to the emergency department several years ago when she was caring for her mother, who had dementia.

“She was screaming and swatting the air and they put her in restraints – for hours. I remember the sheer terror in her eyes.” The experience was stressful for them both, said Muskat, a social worker and psychotherapist who founded Compassion in Caregiving, a Toronto-based psychotherapy service that offers counselling to caregivers in Ontario and Alberta.

Such challenges are on the rise – and expected to keep growing. With Canada’s rapidly aging population, more people are living with dementia and they are more likely to require a trip to the hospital. According to the Canadian Institute for Health Information, older adults with dementia spend longer in the emergency department (ED) than those without dementia, and they are also 65 per cent more likely to be hospitalized. The Alzheimer’s Society of Canada projects nearly one million people in Canada will be living with dementia by 2030.

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The long waits, noise and busyness of Canada’s EDs can be especially overwhelming for people with dementia, as well as their caregivers.

Some hospitals are adapting to this growing reality. In Ontario, emergency departments at Toronto’s Mount Sinai Hospital and the University Health Network’s (UHN’s) Toronto General Hospital and Toronto Western Hospital offer dementia-aware emergency care to older adults, with protocols in place to sensitively manage symptoms of cognitive impairment. At Toronto Western, the UHN will also be opening The Myrna Daniels Senior Emergency Medicine Centre as a dedicated space within their emergency department, where patients can either be triaged or wait while being admitted.

At these emergency departments, geriatric care staff take a “least-restraint” approach, using restraints only if safety requires it. Dr. Don Melady, who leads Mount Sinai Hospital’s geriatric emergency medicine program, said part of the goal is to “accept or manage some disruptive but not-harmful behaviours,” such as yelling.

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In British Columbia, Island Health, which manages acute care hospitals across Vancouver Island, has partnered with the registered charity Eldercare Foundation to offer “comfort carts” to older adults with dementia. The carts contain items such as soft blankets, stuffed animals, or calming sensory activities to try to reduce anxiety and agitation among patients in EDs.

While hospitals can often feel intimidating, Dr. Tessa Ringer, medical director of the Myrna Daniels Seniors Emergency Medicine Centre, said it’s important to remember everyone is there to help. “We are partners in your family member’s care … The ED is set up in an environment that can feel adversarial. But we all want the same thing.”

Still, taking a loved one with dementia to the ED can be an intense and confusing experience. Here are some strategies experts say can help.

Pack a ‘go bag’

If ED visits are common, having a packed bag ready by the door can make the next trip less stressful.

Comfort items such as a warm sweater, cozy socks, or headphones and familiar music can be grounding for people with dementia. Family photos can offer a welcome distraction. And of course, don’t forget snacks and water.

Experts also advise including an updated list of their medical history, past hospitalizations and medications. “And if you have a blister pack of their medications, bring it,” added Dr. Ringer, so staff can see what drugs the person is taking and if they’ve missed any doses.

Muskat suggests caregivers pack a personal profile of their loved one – such as what they enjoy, what makes them agitated and what calms them down – to offer a deeper portrait of the individual than just their diagnosis.

Tell staff your loved one has dementia and provide details

While a person with dementia may end up in the ED due to a fall or another medical issue, rather than dementia itself, experts say it’s important for medical staff to know the full picture so they can provide the right care.

“People are rarely in the emergency department because of dementia,” said Dr. Melady. “They are in the emergency department with dementia and another problem.” Staff need to address both issues.

For example, a physical problem such as a broken hip can complicate cognitive issues. In addition, people whose thinking is different may “behave in ways that can be misinterpreted,” Dr. Melady said, noting they could appear to be hostile or withdrawn. If staff don’t know about the diagnosis, they may not understand the context when assessing the patient.

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He suggests caregivers tell staff about the diagnosis and what helps put their loved one at ease. Something as simple as ‘my mom has dementia and does better when I’m with her,’ can help staff provide appropriate care, Dr. Melady said.

Dr. Ringer agrees it’s important for caregivers to give staff context. “We have assumptions about dementia – how it manifests, and what it looks like. But we need to know the specific symptoms of your loved one to know how to manage them,” she said.

Tell staff what your relative’s baseline is at home – how they function day to day and what they can do independently. Many challenges older adults face “aren’t apparent from a physical exam, lab test, or CT scan, so history is particularly important,” explained Dr. Ringer. “And when a person with dementia can’t express themselves clearly or recall key details, we rely heavily on family, friends and caregivers.”

If someone is in a nursing home, don’t assume that staff there will be able to provide that history, Dr. Ringer added. If they’re doing shift work, they won’t necessarily know what is “normal” or typical behaviour.

Be prepared to stay but have backup

ED visits can be unpredictably long, but if possible, stay with your loved one. Having a familiar face nearby can reduce stress and agitation for the person with dementia.

Katrina Love Prescott, a Vancouver-based caregiver coach and advocate, says caregivers also play an important role communicating with medical staff. “People might not get proper pain management, especially if they can’t communicate in a way the medical system understands,” Prescott said.

At the same time, it’s helpful for caregivers to tap other friends or family as backup during long ED visits for extra support and as a morale booster, she said.

Prescott, who looked after her own mother, said calling in reinforcements can also benefit the person being cared for. “People talk all the time about caregiver burnout, but the person may also get sick of us [or need a break]!”

Offer reassurance and distractions

If your loved one gets restless, or has a tendency to wander or pace, going with them for a short walk through the ED, or to the cafeteria may help. Just be sure to check in with medical staff first.

Prescott said keeping the conversation going about everyday topics can also be reassuring and offer a sense of normalcy. “People get othered. They want to feel normal,” she said. “People with dementia can still have moments of joy, laughter and co-operation.”