‘Sobering’ data show most adults who likely have dementia unaware of diagnosis

Key takeaways:

• Overall, 81% of adults who likely had dementia had not received a diagnosis.
• PCPs’ hesitation to diagnose dementia and a lack of dementia-specific training may be explanations behind the findings.

Four out of five older adults who likely have dementia may be unaware of their condition, according to findings from a cohort study published in the Journal of General Internal Medicine.

Researchers reported especially high lack of awareness among older Mexican Americans that could be the result of physicians withholding a diagnosis for numerous reasons.

The findings “are sobering,” Lewis Morgenstern, MD, study co-author and a professor of neurology, neurosurgery and emergency medicine at University of Michigan Medical School, told Healio.

“A diagnosis of dementia is important for patients to get the needed medical and community services and support that help them and their caregivers,” he explained.

Dementia continues to pose a significant health risk in the United States, significantly contributing to mortality in the last couple decades, while cases of dementia are expected to rise to 1 million a year by 2060.

In the analysis, Morgenstern and colleagues assessed the prevalence of diagnosis unawareness — defined as having probable dementia but not having been given a diagnosis by a health care provider — and factors tied to unawareness among a cohort of 322 adults aged 65 years or older (55% women) from a county in Texas.

All those participants had scored less than 20 on the Montreal Cognitive Assessment, or MoCA, signaling probable dementia.

The researchers found that 81% of the participants lacked awareness of a dementia diagnosis.

They observed a higher percentage among Mexican American adults (85%; 95% CI, 81%-89%) vs. non-Hispanic white adults (68%; 95% CI, 58%-75%) even after adjustment for sex, age and marital status.

Just 6.6% of the participants with probable dementia had no primary care provider. Meanwhile, the study analysis showed no link between lack of a PCP and diagnosis unawareness, suggesting that “the physician may not be diagnosing the patient or may be withholding the diagnosis of dementia,” Josh Martins-Caulfield, study lead author and a medical student at the Icahn School of Medicine at Mount Sinai, said in a press release.

“In practice, physicians often hesitate to diagnose dementia, citing reasons such as insufficient time with individual patients to conduct the screening process or not having dementia-specific training,” he added. “The discomfort of providing the diagnosis may also lead them to wait for patients or family members to raise concerns about memory issues rather than initiating discussions proactively.”

Diagnosis unawareness corresponded with a lower MoCA score (incidence rate ratio [IRR] = 0.98; 95% CI, 0.96-1) and greater physical impairment (IRR = 1.06; 95% CI, 1.03-1.1).

A formal dementia diagnosis did not reduce caregiver burden, which may be because a diagnosis “forces caregivers to confront the immense work ahead,” the researchers wrote. “Caregivers... must quickly accept the diagnosis and take on increased responsibilities, such as decision-making and managing daily care.”

Morgenstern and colleagues highlighted some study limitations. These include excluding participants without informal caregivers and the analysis’ cross-sectional design, “which precludes establishing causality,” they wrote.

“It would be great if PCPs screened for dementia in elderly patients with a simple screening test and were prepared to refer patients who screen positive to needed medical and community support services,” Morgenstern told Healio.

He said that the next steps are to determine “if PCPs are not making the diagnosis, are not communicating the diagnosis to patients and their caregivers and/or if the caregivers are not appreciating the diagnosis and acting on it to get needed services and support.”

References:

• Martins-Caulfield J, et al. J Gen Intern Med. 2025;doi:10.1007/s11606-024-09333-1.
• 85% of Mexican Americans with dementia unaware of diagnosis, outpacing overall rate. Available at: https://www.eurekalert.org/news-releases/1070165. Published Jan. 14, 2025. Accessed Jan. 26, 2025.