Despite increasing awareness of dementia, many people still wait several years for a formal diagnosis. This delay happens after their symptoms are first noticed. A new study led by researchers at University College London (UCL) finds that it takes an average of 3.5 years. This is from first symptoms to a confirmed dementia diagnosis.
For those with early-onset dementia, this delay is even longer—approximately 4.1 years. This highlights a critical gap in early detection and care.
A FIRST-OF-ITS-KIND GLOBAL REVIEW ON DEMENTIA DIAGNOSIS
This study is led by UCL and is published in the International Journal of Geriatric Psychiatry. It is the first systematic review and meta-analysis on global delays in diagnosing dementia.
Researchers analyzed data from 13 previously published studies across Europe, the United States, Australia, and China. They covered over 30,000 participants and specifically looked at the time between symptom onset and official diagnosis. They did this using patient and caregiver interviews, as well as medical records.
WHY EARLY DIAGNOSIS MATTERS IN DEMENTIA
Lead author Dr. Vasiliki Orgeta of UCL’s Division of Psychiatry emphasized that delayed diagnosis denies patients access to treatments. Furthermore, it denies them early support systems.
“Timely diagnosis can help prolong the early stages of dementia, giving individuals more time with mild symptoms before they progress,” she explained. However, only 50–65% of dementia cases are diagnosed in high-income countries. This rate is far lower in many others, according to previous studies cited in the review.
WHO FACES THE LONGEST DELAYS?
The study revealed that some groups experience even longer delays in receiving a diagnosis than others. Consequently, this creates an inequality in care and treatment.
- Younger people with dementia typically wait longer, especially those with frontotemporal dementia, which can mimic mental health or behavioral issues.
- Black patients also faced longer delays, based on findings from one study in the review. Although racial disparity data remains limited.
- Delays were often linked to confusion between symptoms and normal aging, low awareness, stigma, or fear of a dementia label.
BARRIERS WITHIN HEALTHCARE SYSTEMS
Co-author Dr. Phuong Leung noted that symptoms are often mistaken for aging. This discourages many from seeking help early or discussing memory concerns.
Professor Rafael Del-Pino-Casado from the University of Jaén added that poor access to specialists and under-resourced memory clinics create bottlenecks in timely diagnosis. Language differences, cultural misunderstanding, and a lack of inclusive diagnostic tools also play a role. These especially affect immigrant populations in delayed identification of symptoms.
WHAT NEEDS TO CHANGE: RECOMMENDATIONS FROM RESEARCHERS
Dr. Orgeta called for co-developed frameworks involving patients, families, and caregivers. These frameworks aim to better define and address delays in the dementia diagnosis timeline.
“To speed up dementia diagnosis, we need action on multiple fronts,” she said. “Public awareness campaigns can reduce stigma and improve early help-seeking behavior.” She also stressed the importance of clinician training and improved referral systems. Additionally, she emphasized more individualized support from the point of early symptom detection.
REDUCING THE DELAY COULD CHANGE LIVES
This landmark study provides crucial insight into why diagnosing dementia takes years. Faster recognition can improve the quality of life for patients and families.
Ultimately, closing this delay could help thousands receive support earlier. It could also allow them to maintain independence longer. Additionally, they could plan better for their future with dementia.
