Belinda Parke and Kathleen Hunter have spent the last decade putting themselves in the shoes of older people with dementia and using their research findings to make unplanned trips to the emergency department a more positive experience for everyone-from the person living with dementia to their caregivers to hospital staff in the emergency department.
"A trip to the emergency department can be stressful for anyone, but imagine how difficult and upsetting that same visit is for an older person with dementia who may have trouble communicating and understanding what is happening around them," says Parke, an associate professor.
Hunter agrees and adds that people living with dementia often do well in familiar environments and with a routine. "Leaving this environment can be stressful, especially if the person is not feeling well and the new environment is a noisy, chaotic emergency department."
Do no harm
Dementia is a syndrome that involves a decline in cognitive function that is severe enough to interfere with daily life and describes a wide range of symptoms including memory loss, behaviour changes, judgement and reasoning problems, and changes in mood and communication abilities.
"There isn't one way to make things better for this population, because it's not just a single illness," says Parke. "There are a number of different medical illnesses that fall under the umbrella of dementia and each can present different symptoms."
According to the Alzheimer Society of Canada, more than 747,000 Canadians are living with Alzheimer's disease and other dementias-nearly 15 per cent of adults aged 65 and older. By 2031, that number is expected to reach 1.4 million. Similarly, the World Health Organization predicts that by 2050, there will be 136 million people afflicted by dementia around the globe.
Dementia can impact older adults by raising their risk for harm and the research has shown that this population is twice as likely as their counterparts to be admitted to hospital when they're seen in the emergency department.
Parke explains that unintentional harm can occur for these individuals because of care practices that impair their function and diminish their ability to return home following the emergency visit.
"Our research shows that health care professionals have the best of intentions, but may not have the resources, time or knowledge of how best to interact and communicate with someone living with dementia," says Hunter, an associate professor.
Triage practices of emergency departments can create challenges for older adults with dementia who are trying to communicate their symptoms, and for the health care professionals who are trying to establish what behaviours may be the result of the patients fear and anxiety.
"If you or I go to the emergency department, it's usually not difficult to discuss what brought us there or how long we've been experiencing symptoms," says Parke. "But if a person has dementia, health care professionals must instead rely on corroborating information and patient history from the caregiver." This requires more time and often this time in a busy emergency department is difficult to find.
Understanding the impact of dementia on older adults can contribute to everyone's safety in emergency settings. By using this knowledge, health care professionals are better able to ensure safe and quality care for this vulnerable group.
While it is important to provide education to emergency department health care professionals on dementia and build skills in interacting with people living with dementia, system changes are also necessary, says Hunter.
"Equally important are changes to the way in which older people with dementia are assessed at triage so that atypical presentations of illness are not overlooked. We also need to work to avoid hospital acquired or worsening issues such as immobility, incontinence and impaired cognition."
Empowering patients
A collaboration between Older Adult Hospital Readiness (OAHR)-Parke and Hunter's program of research-and the Alzheimer Society of Canada resulted in a number of practices being identified to improve the quality of emergency care.
"We often try to change and make things better by education and tools that are created based on what health care teams need to know," explains Parke. "But our research shows that self-advocacy, preparation and communication are a better way to ensure safe, quality emergency care."
The results of the studies led the OAHR and ASC team to create of a series of evidence-based hospital readiness communication tools to support self-advocacy for older people living with dementia and their care partners. The seven tools include:
- Be Ready for an Emergency Department Visit
- My Ready-to-go-bag
- About Me
- My Medications
- Who Knows Me Best
- My Wishes; and
- Plan Ahead for Going Home
Filled out ahead of time and controlled by the patient and their caregiver, the OAHR and ASC team hope that the tools are a way to bridge the communications gap between health care teams and patients.
The research team consistently heard that caregivers are key to ensuring a safe emergency department visit. Supporting caregivers in their role as advocates for their loved ones is why OAHR and ASC developed these hospital readiness tools. "Empowering people with tools such as this will push the system into changing the approach to older people with dementia," says Hunter.
"These tools aren't going to stop this group from visiting the emergency department," says Parke. "They will, however, help those in the emergency department understand more quickly what the patient needs."
The culture within emergency departments focuses on the presenting problem-to the point that a lot of information for health care providers falls into the category of 'nice to know, but not necessary'. The OAHR and ASC team argue that when dealing with dementia patients and their care givers, this information is actually essential knowledge.
"These tools are really about self-advocacy and empowerment," says Parke. "They're based on what older people living with dementia and their family care givers say you need to know about them and provide critical information that is uniquely held."
Hunter notes that their goal is to empower people living with dementia and their care partners to be prepared and take control of an event that can easily be overwhelming.
You can access all seven hospital-readiness communication tools for free on the Alzheimer Society of Canada website in English: alzheimer.ca/hospitalvisits and in French: alzheimer.ca/visiteshopital.
