57 million people had dementia worldwide in 2021, according to the World Health Organization (WHO). Nearly 10 million new cases arise every year. What is more alarming is that the symptoms of dementia are often dismissed, and it takes years to get diagnosed after the first symptoms appear, according to a new study A study led by researchers at University College London (UCL), found that it takes an average of 3.5 years for a dementia diagnosis after initial symptoms appear. In people with early-onset dementia, it could even take longer (4.1 years). The findings are published in the International Journal of Geriatric Psychiatry.Dementia and symptoms
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Dementia is a general term used for several diseases that cause loss of memory, language, problem-solving, and other thinking abilities, which affect the ability to perform daily activities. Alzheimer’s disease is the most common form of dementia.The symptoms of dementia worsen over time and eventually affect daily activities. Oftentimes, the changes in mood and behaviour appear before memory problems start.Some of the early signs and symptoms include:
- forgetting things or recent events
- losing or misplacing things
- getting lost when walking or driving
- being confused, even in familiar places
- losing track of time
- difficulties solving problems or making decisions
- problems following conversations or trouble finding words
- difficulties performing familiar tasks
- misjudging distances to objects visually.
Changes in mood and behaviour include:
- feeling anxious, sad, or angry about memory loss
- personality changes
- inappropriate behaviour
- withdrawal from work or social activities
- being less interested in other people’s emotions.
Why dementia diagnosis gets delayed
The latest study has revealed startling details about why diagnosing dementia takes so long. This is the first systematic review and meta-analysis of global evidence examining time to diagnosis in dementia. To understand why diagnosis takes time, the researchers reviewed data from 13 previously published studies which took place in Europe, US, Australia, and China, reporting data on 30,257 participants.They looked at the average interval between symptom onset (rated by patients or family carers using interviews or medical records) to the final diagnosis of dementia.“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% 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,” lead author Dr. Vasiliki Orgeta (UCL Division of Psychiatry) said, in a statement. From the analysis of the data, the researchers found that it usually takes 3.5 years from the first appearance of symptoms to a patient receiving a diagnosis of dementia. In the case of early-onset dementia, it could be 4.1 years, and in some other groups, there could be longer delays.
“Our work highlights the need for a clear conceptual framework on time to diagnosis in dementia, developed in collaboration with people with dementia, their carers, and supporters,” Dr. Orgeta added. “Symptoms of dementia are often mistaken for normal ageing, while fear, stigma, and low public awareness can discourage people from seeking help,” Dr. Phuong Leung (UCL Division of Psychiatry) noted.Professor Rafael Del-Pino-Casado, of the University of Jaén, Spain, said, “Within healthcare systems, inconsistent referral pathways, limited access to specialists, and under-resourced memory clinics can create further delays. For some, language differences or a lack of culturally appropriate assessment tools can make access to timely diagnosis even harder.”
“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,” Dr Orgeta added.
