Why it takes more than 3 years to diagnose dementia on average

A new global review by University College London researchers shows that people with dementia wait on average for symptoms before they develop symptoms for another 3.5 years.

For people with early stages of dementia, delays grow longer to 4.1 year. Posted in International Journal of Geriatric PsychiatryThe study provides the first systematic meta-analysis to understand how long it takes to receive a dementia diagnosis and why it often takes so long. Using data from more than 30,000 individuals from 13 studies, researchers found that the gap in awareness and healthcare visits to extend the diagnostic process is disturbing.

Delay for a few years – Worse for young people

In analyzing studies in Europe, the United States, Australia and China, researchers found that timely diagnosis of dementia remains elusive even in high-income countries. The road to identification is particularly long for young adults showing signs of dementia.

• Average diagnosis time for all dementia types: 3.5 years
• For early onset (under 65 years old): 4.1 years old
• For frontotemporal dementia: 4. 2 years
• For Alzheimer’s disease: 3.6 years
• For late dementia: 2.9 years

“Timely diagnosis of dementia remains a major global challenge, shaped by a complex range of factors and a critical need for specific health care strategies to improve it,” said Dr. Vasiliki Orgeta, lead author of the UCL Department of Psychiatry.

Why is the diagnosis so delayed?

Multiple obstacles help delay. Symptoms are often mistaken for normal aging. Fear and stigma prevent individuals from seeking help. Even if patients do enter the healthcare system, it can confuse the referral route and underresourced clinics slow down.

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

Professor Rafael Del-Pino-Casado, of the University of Jaén in Spain, added that systemic problems in health care, such as limited access to expert or culturally inappropriate assessments, can create further obstacles.

Who waits the longest time?

Some groups face greater delays than others. Research found:

• The diagnosis of young patients is late
• People with frontotemporal dementia have longer diagnostic intervals
• Black patients experienced longer delays in a US study

These differences highlight the need for clinical training and public awareness campaigns to encourage early recognition and recommendations.

Why early (or timely) diagnosis is important

Delay in diagnosis reduces opportunities for early intervention, care planning and support. Although cure remains elusive, it can long ago help patients and families cope with their condition with more resources and better results.

“Timely diagnosis can improve the chances of treatment, and for some people, it extends the life time of mild dementia before symptoms worsen,” Dr. Orgeta said.

What can be done?

The author calls for action in several ways:

• Open campaigns to raise awareness and reduce stigma
• Clinician training to improve early recognition and recommendations
• Expand access to memory clinics and acculturally acculturated diagnostic tools
• More research on health care differences and diagnostic pathways

“To speed up the diagnosis of dementia, there are several aspects that need to be taken,” said Dr. Orgeta. “Clinician training is critical to improving early recognition and recommendations and obtaining early intervention and personalized support.”

Looking to the future

The review highlights the urgent need for global rethinking on how dementia is diagnosed. Building better systems for early recognition can reduce emotional pain, improve treatment outcomes, and help families prepare for everything in the future. But to get there, the health system has to move faster and smarter.

Magazine: International Journal of Geriatric Psychiatry
doi: 10.1002/gps.70129

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