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Special Report

Special Report

Addressing the Unmet Needs of People with Dementia

Shaw, Gina

doi: 10.1097/01.EEM.0000800484.76103.69
    Figure
    Figure:
    cognitive decline, elderly, geriatrics

    Older adults with dementia are significantly more likely to seek care in an emergency department than those without dementia, making it all the more important to recognize how disruptive and debilitating an ED visit can be for them.

    A study conducted at an urban hospital in Indianapolis over 11 years, thought to be the first observational cohort study of older adults with dementia to describe their patterns of ED use, ED-related health care costs, and health outcomes, found that between 37 and 54 percent of individuals with a current dementia diagnosis visited the ED in a given year, compared with 20 to 31 percent of those without a dementia diagnosis. (Alzheimer Dis Assoc Disord. 2016;30[1]:35; https://bit.ly/2Z9wlg7.)

    The study also found that dementia is a marker of an increased risk of return to the ED within 30 days and of death in the following months and years compared with the outcomes of older adults without dementia who visit the ED. “These findings ... remind us that an ED visit is a sentinel event in the life of an older adult with dementia,” noted the authors.

    Most emergency physicians will probably agree that the typical emergency department is not well suited to caring for people with dementia. EDs are often busy, noisy, brightly lit, and confusing to the average person, much less to someone with cognitive impairment. “We know that people who suffer from dementia do better when they're in familiar situations with familiar voices and faces and schedules, where they know what to expect. The ED is none of that,” said Lauren Southerland, MD, the medical director of geriatric emergency care at The Ohio State University Wexner Medical Center. “We don't let you sleep, we often don't let you get food or meds on time, and there are different faces coming in and out all the time. It's very disorienting.”

    Manish Shah, MD, MPH, a professor of emergency medicine at the University of Wisconsin (UW) School of Medicine and Public Health, agreed. “The emergency department is not an ideal care setting for people with dementia,” he said. “Caring for people with dementia in the ED is a huge and important challenge we face as a society because this population is growing so much.”

    GEARing Up

    Helping to address these challenges, Dr. Shah and Ula Hwang, MD, MPH, a professor of emergency medicine and vice chair for research in emergency medicine at the Yale School of Medicine, are leading the Geriatric Emergency Care Applied Research Network 2.0-Advancing Dementia Care (GEAR 2.0), a collaboration between Yale, UW, the Feinberg School of Medicine at Northwestern University, and the Washington University School of Medicine in St. Louis. GEAR 2.0, awarded $7.5 million in research funding from the National Institutes of Health, aims to leverage expertise in emergency medicine, geriatrics, and Alzheimer's disease and related dementias to identify and address gaps in emergency care for people with dementia.

    “Twenty years ago, we were saying similar things about caring for older adults in the ED: It's a growing population, we're not prepared to care for them, nobody's researching this, and we need to build an evidence base for programs in the ED that can do that,” Dr. Shah said.

    Identification of those gaps led to the creation of the GEAR Network and GEAR 1.0, designed to establish an infrastructure to support collaborative, interdisciplinary research to improve ED care for all older adults. “GEAR 1.0 has been wildly successful,” he said, “helping to establish systems such as the Geriatric Emergency Department Accreditation (GEDA) program within the American College of Emergency Physicians.”

    GEAR 2.0 will undertake a similar process, but will be entirely dedicated to cognitive impairment and dementia, according to Dr. Hwang, who also led GEAR 1.0, wrote the article first describing the geriatric emergency department, and was a leader of the 2014 Geriatric ED Guidelines that were endorsed by ACEP, the Society for Academic Emergency Medicine, the Emergency Nurses Association, and the American Geriatrics Society.

    “What we hope to do with this infrastructure is highlight the research gaps and deficiencies that exist now in emergency care for people with dementia, and then move forward with a consensus-based approach of research priorities to generate evidence to address those deficiencies and develop more optimal ways to provide emergency care that produces better outcomes in these populations,” she said.

    The principal investigators will convene a panel of experts to review current research related to dementia patient care in emergency departments, identify areas where more research is needed, and create an infrastructure in which care investigators across the country can conduct this research. Interdisciplinary workgroups from among the panel members, who will include people with dementia and their caregivers, as well as emergency physicians, neurologists, geriatricians, psychiatrists, pharmacists, physical therapists, and others, will focus on four key areas:

    • Detection and identification of patients with dementia in the ED
    • Communication and shared decision-making
    • Needed changes to emergency care
    • Care transitions (What happens to these patients when they leave the ED?)

    “Everyone on the panels will have a chance to vote on the top priorities for those four workgroup domains, which will be released sometime in the fall of 2021,” Dr. Hwang said. The research will commence after that, and GEAR 2.0, with support from numerous partners, will award more than $1.1 million to fund nine pilot studies. Dr. Shah said the group hopes these awards will “prime the pump for bigger and more significant grants, which will then help us move the needle on research that drives our clinical care for people living with dementia. We want to go from small interventions that are pilot-tested so that we have a good signal that they work to funding for randomized controlled trials to study them in multiple institutions.”

    Multidisciplinary Approach

    “While GEAR 2.0 is doing its work, the Geriatric ED Guidelines and GEDA certification can help many emergency departments begin to improve their care for people with dementia,” said Richard Shih, MD, a professor of integrated medical science and the division director for the emergency medicine residency program at Florida Atlantic University in Boca Raton. “These guidelines and certification espouse a multidisciplinary approach, having specific geriatric care protocols in place in the ED, as well as specialized training for clinicians and additional resources such as pharmacists and social workers available to care for patients at that level,” he said. “Unfortunately, right now there typically is [no] extra funding for that, so it's about finding some way to pay for it.”

    Some elements of the Geriatric ED Guidelines do not require major investments in staffing or training and will also improve care for people with dementia, said Danya Khoujah, MBBS, an assistant professor of emergency medicine at the University of Maryland School of Medicine who is currently involved in updating those guidelines.

    “In many ways, caring appropriately for patients in the ED with dementia [is] in line with how you prevent delirium in older adults,” she said. “When you have an older adult in the hospital who is at risk for acute confusion because they can't hear well, can't see well, are on multiple medications, or have comorbidities such as a prior stroke, how do you transition them through coming to the ED and possibly an admission without developing confusion? In many ways, that's how you care for the person with dementia without them getting more confused. The evidence is not great, but we do know some things.” Such strategies, Dr. Khoujah said, include:

    • Frequent reorientation (as long as it is not stressful)
    • Maintaining normal sleep cycles
    • Keeping rooms well lighted during waking hours, particularly in the morning and at twilight because shadows cause stress and may increase the potential for hallucination
    • Avoiding medications that are likely to produce acute confusion or delirium, such as Benadryl
    • Ensuring each room or patient care space has an easily readable clock and an erase board with dates and other key information posted

    “These aren't thousands of dollars' worth of changes; they are simple things that you can do with very minimal resources,” Dr. Khoujah said. She also pointed emergency physicians toward other educational resources, such as the Geriatric ED Collaborative, which includes a podcast, open-access journal articles, and other initiatives. (https://gedcollaborative.com.) “It's all free, as is their dementia tool kit,” she said. “And Geriatric EM is a fee-based educational resource that offers geriatric-specific CME.”

    Care transitions are another component to consider, Dr. Shah added. “Think about what you can include, such as follow-ups with a direct connection to the primary care provider to make sure these people don't fall through the cracks, because they aren't necessarily going to remember everything that happened in their ED visit,” he said. “There are a lot of small steps that can be taken right now that don't require a whole research study. Care partners and people with dementia in GEAR 2.0 have already provided incredible depth of information about things we can do better. I thought I was fairly comfortable, given that this is my area of research, but I'm starting to alter how I care for these individuals, such as better involving the care partners and communicating more frequently with the patients' primary care physicians.”

    Much like some nurses and social workers are trained as child life specialists, Dr. Khoujah said she believes EDs should maintain a cadre of volunteers or staff who are trained in caring for patients with dementia. Those with mild dementia who are irritated and want to leave before being seen can be given a simple task, like towels to fold, something they feel they have control over, until you find their care partner or get those x-rays, she said.

    “In emergency care, people are more interested in talking about dramatic things like shock and trauma, but how many old people are you going to see in the ED? A lot more than car accidents or gunshot wounds,” Dr. Khoujah said. “At the end of the day, money talks, and there's no real incentive to do these things better because the results are not always obvious. When your patient with dementia doesn't get the optimal care they need, the repercussions may not come immediately but 30 days or months down the line.

    “We do know that older adults with dementia end up in the ED more and need more resources, but we don't know how to quantify how well we do with managing that in a way that's correlated with how well people get rewarded for how they provide care.”

    Maybe that's a question that GEAR 2.0 will help answer.

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    Ms. Shawis a freelance writer with more than 20 years of experience writing about health and medicine. She is also the author of Having Children After Cancer, the only guide for cancer survivors hoping to build their families after a cancer diagnosis. You can find her work atwww.writergina.com. Follow her on Twitter@writergina.

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