Urgent need to improve time to diagnosis for dementia

Dementia takes up to years to diagnose after symptoms begin, a new study shows.

Researchers at University College London (UCL) discovered that, on average, people with dementia receive a diagnosis 3.5 years after they or others first notice symptoms. For people with early-onset dementia, the wait can be even longer, averaging 4.1 years.

Timely dementia diagnosis is a global priority and, as such, is reflected in health policies around the world. However, there is limited data on average time to diagnosis (TTD) and the factors that influence diagnostic delays.

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This study, published in the International Journal of Geriatric Psychiatry, highlights the need for robust estimates of TTD and the urgent need for targeted healthcare strategies to speed up the process.

The researchers conducted a meta-analysis of global studies published up to December 2024, examining TTD in dementia. This review included data from 13 published studies from Europe, the US, Australia, and China, and included data from 30,257 participants. The average interval between symptom onset and the final diagnosis of dementia was determined from interviews with patients or family carers and medical records. Age at onset of dementia ranged between 54 and 93 years.

Ten of the pooled studies showed that, on average, it takes 3.5 years from the first sign of symptoms to a patient receiving a diagnosis of dementia. For patients with early-onset dementia, the delay to diagnosis was found to be 4.1 years from six pooled studies.

Factors affecting TTD varied across studies, but the researchers found that a younger age at onset and the development of frontotemporal dementia, a less common type of dementia, were consistently associated with delays in TTD.

Data on racial disparities were limited, however, one study, which formed part of the review, found that black patients tended to experience a longer delay before diagnosis.

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Lead author Dr Vasiliki Orgeta, from UCL Division of Psychiatry, said: ‘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. Other studies estimate that only 50-65 per cent of cases are ever diagnosed in high-income countries, with many countries having even lower diagnostic rates. Timely diagnosis can improve access to treatments and, for some people, prolong the time living with mild dementia before symptoms worsen.’

The work highlights the need for a clear conceptual framework for understanding TTD in dementia. Dr Orgeta emphasises that such work must be developed in collaboration with people with dementia, their carers, and supporters. Further research will focus on understanding the factors contributing to delays in diagnosis and developing effective interventions to reduce the diagnostic intervals.

Dr Orgeta added: ‘To speed up dementia diagnosis, we need action on multiple fronts. 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 individualised support so that people with dementia and their families can get the help they need.’

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Reference: Time to diagnosis in dementia: A systematic review with meta-analysis https://doi.org/10.1002/gps.70129