Dementia is going undiagnosed for years, especially in young patients

People with dementia often wait too long for a diagnosis. A new global study by UCL found that the average time from the first symptoms to diagnosis is 3.5 years.

For early-onset dementia, the delay stretches to 4.1 years. These delays worsen access to care and lead to missed opportunities for support.

Researchers analyzed 13 studies from Europe, the US, Australia, and China, covering over 30,000 participants. They tracked the time from when symptoms first appeared – noticed by families or patients – to the formal diagnosis by clinicians.

This is the first comprehensive review to measure this diagnostic gap across countries and dementia types.

Why dementia goes undiagnosed

“Timely diagnosis of dementia remains a major global challenge, shaped by a complex set of factors, and specific healthcare strategies are urgently needed to improve it,” said lead author Dr. Vasiliki Orgeta from the UCL Division of Psychiatry.

Though early symptoms may appear subtle, many families delay action. People often mistake the signs for normal aging. In several countries, general practitioners refer patients to memory clinics, but often only after symptoms become severe.

The diagnostic process itself is slow. Even in countries with established memory clinics, delays persist. On average, patients with frontotemporal dementia (FTD) waited 4.2 years.

Those with Alzheimer’s disease (AD) faced a 3.6-year delay. The longest delays occurred in younger people with FTD, who waited 4.7 years.

Young people wait longer

Younger patients face unique challenges. Their symptoms are unexpected and often misdiagnosed as stress or mental health issues.

Two studies linked younger age directly to longer delays. Several others found that people with young-onset dementia saw multiple doctors before receiving a diagnosis.

Specialist services helped. In one Australian study, people who accessed a dedicated young-onset dementia clinic got diagnosed faster.

“Our work highlights the need for a clear conceptual framework on time to diagnosis in dementia, developed in collaboration with people with dementia, their caregivers, and supporters,” Dr. Orgeta added.

Waiting for dementia diagnosis

Race, income, and education also played a role. One study from the US found that Black participants experienced longer delays compared to white participants.

This difference was partly due to income and education levels. Lower educational attainment and lack of insurance contributed to these diagnostic gaps.

Female patients, in some studies, were also more likely to wait longer. People without functional impairments tended to get delayed diagnoses too. This shows that visible symptoms often trigger action – but subtle or early signs may not.

“Symptoms of dementia are often mistaken for normal aging, while fear, stigma, and low public awareness can discourage people from seeking help,” said study co-author Dr. Phuong Leung.

One type of dementia often missed

Frontotemporal dementia is harder to detect. It may present as behavioral or language issues rather than memory loss. In some studies, FTD patients were younger and had fewer memory symptoms than those with AD. This complexity caused doctors to misread symptoms or delay referrals.

“Within healthcare systems, inconsistent referral pathways, limited access to specialists, and under-resourced memory clinics can create further delays,” said Professor Rafael Del-Pino-Casado from the University of Jaén in Spain.

“For some, language differences or a lack of culturally appropriate assessment tools can make access to timely diagnosis even harder.”

Speeding up detection

The review recommends setting up specialist services for young-onset dementia. These centers can reduce diagnostic delays and improve access to support.

It also urges global efforts to improve training for doctors, awareness campaigns for the public, and policy frameworks to define acceptable diagnostic timelines.

“To speed up dementia diagnosis, we need action on multiple fronts,” said Dr. Orgeta. “Public awareness campaigns can help improve understanding of early symptoms and reduce stigma, encouraging people to seek help sooner.”

“Clinician training is critical to improve early recognition and referral, along with access to early intervention and individualized support so that people with dementia and their families can get the help they need.”

Reducing undiagnosed dementia

Many people still believe dementia only affects older adults, a misconception that leaves younger patients undiagnosed and delays treatment, reducing quality of life.

The report calls for more large-scale studies and standard definitions of diagnostic intervals. Without accurate timelines, policy and planning efforts will fall short.

The authors argue for immediate investment in research, inclusive care systems, and better diagnostics. With the right steps, future generations could receive dementia diagnoses faster – and live better for longer.

The study is published in the journal International Journal of Geriatric Psychiatry.

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