In a recent study, researchers from Johns Hopkins Medicine find that most older adults with probable dementia in the United States have never been diagnosed or are unaware they have been.
An estimated 5.7 million people in the United States live with dementia, according to the Alzheimer’s Association.
But only half of those have a documented, official diagnosis by a physician.
Early diagnosis is important for maintaining or improving health and planning care, so it’s important to find who are less likely to be diagnosed or less likely to be aware of their diagnosis.
In the study, the research team drew on data from the National Health and Aging Trends Study.
This is ongoing study of Medicare recipients ages 65 and older across the United States.
They selected those who met criteria for probable dementia in 2011 and had three years of continuous fee-for-service Medicare claims before 2011.
The latter information helped the researchers determine whether participants’ physicians had billed for dementia diagnosis and/or care.
The research team identified 585 such adults and examined demographic data such as highest level of education attained, race/ethnicity and income, as well as whether these people could perform activities such as laundry, shopping or cooking on their own.
They found that among those with probable dementia, 58.7% were determined to be either undiagnosed (39.5%) or unaware of their diagnosis (19.2%).
Participants who were Hispanic, had less than a high school education, attended medical visits alone or were deemed more able to perform daily tasks were more likely to be undiagnosed.
Specifically, those with at least a high school education had a 46% lower chance of being undiagnosed compared with those who had less education.
And those who attended medical visits alone were twice as likely to be undiagnosed than those who were accompanied.
Participants who were diagnosed but unaware of their diagnosis had less education, attended visits alone more often and had fewer functional impairments.
Those with at least a high school education had a 58% lower chance of being unaware compared with those who had less education.
Those who attended medical visits alone were about twice as likely to be unaware than those who were accompanied. Each activity impairment decreased the chance of being unaware of diagnosis by 28%.
The researchers suggest their findings may help physicians be more alert to people who may need more careful screening.
Their future work focuses on whether documentation of a dementia diagnosis is meaningful if patients and family members don’t understand what a diagnosis means.
The study is published in the Journal of General Internal Medicine.
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News source: Johns Hopkins University.
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