Patients with dementia may be at greater risk of hospitalization and ED visits, yet many are undiagnosed or unaware of their dementia diagnosis.1
“A lot of times, clinicians are reluctant to use the word ‘Alzheimer’s’ or ‘dementia,’ so they may say to a patient, ‘You have memory loss,’” says Halima Amjad, MD, MPH, lead study author and assistant professor of medicine in the division of geriatric medicine and gerontology at Johns Hopkins University School of Medicine and Johns Hopkins Bayview Medical Center.
Avoid Euphemisms
When Amjad sees that a patient with Alzheimer’s disease or dementia is unaware of the diagnosis, she will talk with the family about what the diagnosis means, and avoid using euphemisms like “memory loss” or “cognitive impairment,” which patients might not understand means dementia.
“There is a lot of stigma about dementia,” Amjad says. “Even though there are studies showing that a diagnosis does not increase anxiety or depression, there’s a fear it will cause depression.”
But the dementia diagnosis is important for patients to receive quality care when they are seen by clinicians and in hospitals.
When patients are undiagnosed, or are unaware of a dementia diagnosis, they might lack needed caregiver support or struggle to manage their diseases because no one recognizes their cognitive impairment, Amjad explains.
Amjad and colleagues used national health and aging trend data that included measures to identify patients with dementia, even if it is not officially diagnosed.
“We focused on those with probable dementia, but we didn’t see anything in their medical claims showing they had been diagnosed clinically,” Amjad explains. “We know from research that people with dementia are more likely to be hospitalized than are those without dementia.”
People who were unaware of their dementia diagnosis were at higher risk of hospitalization, after adjusting for medical factors. Their risk was comparable to those who were aware of their dementia diagnosis. “They’re landing in the hospital and emergency department more,” Amjad adds.
The patients with undiagnosed dementia were not at greater risk of hospitalization when compared with people without dementia. “They were at lower risk compared to people who were diagnosed and aware,” Amjad says. “This went against what we thought we might find, but in some ways it validates that these individuals are less cognitively impaired, maybe flying under the radar.”
People with undiagnosed dementia might be carrying on well enough in their daily lives that their impairment went unnoticed by family members, who usually are the first ones to notice dementia and mention it to medical providers, Amjad says.
Case managers sometimes observe cognitive problems among patients who have not received a dementia diagnosis. Or, they may see patients with a diagnosis of which the patients and family members are unaware. When this happens, they could help patients and families understand what happens with dementia and cognitive issues.
“If it seems the patient or family is completely unaware, then if the case manager feels comfortable, they should talk about what they see in the chart or ask the primary care doctor to share the diagnosis more clearly,” Amjad adds.
Case managers also could educate families about the cognitive symptoms or issues related to dementia. They could show family members how to understand patients’ needs, such as helping patients remember to take their medication. Case managers can ask family members to accompany the patient to medical appointments and to start a family support system to help as the patient’s memory loss worsens.
“The patient will need support for complex tasks, like medication management, understanding medical information, and going to appointments,” Amjad says. “The family may not realize the older person needs help in those areas.”
REFERENCE
- Amjad H, Samus QM, Huang J, et al. Acute care utilization risk among older adults living undiagnosed or unaware of dementia. J Am Geriatr Soc 2021;Nov 13. doi: 10.1111/jgs.17550. [Online ahead of print].
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