In England, up to 100,000 people may have undiagnosed forms of dementia

According to government figures, there may be 100,000 people in England living with an undiagnosed form of dementia, which causes symptoms including depression and hallucinations.

Dementia is a collective term for many different conditions that affect more than 100 people. 55 million people worldwide. Around 7,000 people are diagnosed in England every month. Although health services have made progress in key diagnosis rates, the latest figures show that underdiagnosis of specific forms of dementia remains a problem.

NHS data published for the first time on Thursday showed the presence of two less common forms of the condition: Lewy body dementia and frontotemporal dementia.

In 2023, the NHS began publishing how many patients had Alzheimer’s, vascular and mixed dementia. The data did not specify how many had dementia with Lewy body or frontotemporal dementia, instead recording those figures in an ‘other’ category, which includes those whose specific form of dementia has not been diagnosed.

According to estimates from the National Institute for Health and Care Excellence, Lewy body dementia (which includes Parkinson’s disease) are responsible for 10% to 15% of dementiasThe NHS figures on dementia in primary careA study published on Thursday found that between 73,000 and 109,000 people over the age of 65 in England have Lewy body dementia, but only 15,000 of them have a confirmed diagnosis.

Just under 15,000 people are thought to have frontotemporal dementia, but only 3,000 have been formally diagnosed. This means that up to 100,000 patients with these two forms of dementia remain undiagnosed.

The effects of these conditions differ from Alzheimer’s disease and vascular dementia. Symptoms of dementia with Lewy bodies can include depression, apathy, and hallucinations, in addition to classic Parkinson’s symptoms, which require different treatment and care planning.

It took three years for Charles Hine to be diagnosed with Lewy body dementia. The musician and conductor went to his GP in 2017 when he couldn’t remember how to use the central heating. “Charles knew something was wrong,” his wife Kerry said. He had no problems with his short-term memory, which seemed to be the only thing the doctor was looking at, she recalled.

It wasn’t until 2019 that his GP referred him to a memory clinic, but the MRI scan was fine and Charles was diagnosed with mild cognitive impairment. Finally, in 2020, at the age of 69, Charles underwent further psychometric testing and was diagnosed with probable dementia with Lewy bodies. “At this stage he was really feeling the cold, couldn’t remember how to send emails and had difficulty processing visual information. His balance was getting worse and he was becoming increasingly anxious and upset,” Kerry said.

“I should have already purchased sensor lights, put a crash mat next to our bed and installed alarms on the doors.”

Charles continued to decline and died on January 1, 2024. Kerry said her advice to those who suspected they or a loved one had a less common form of dementia was: “Don’t take ‘no’ for an answer.”

“Tell the doctor that you think short-term memory testing is not enough and ask for a referral to a specialist,” she added.

Frontotemporal dementia accounts for 2% of dementias, but it is thought to be higher in younger people. Symptoms include changes in personality and behavior and difficulty speaking. The actor Bruce Willis has this form of dementia.

Tracey Lane was diagnosed with frontotemporal dementia when she was 51. “I started to get confused with passwords and faces,” she said. “But I also kept thinking that I wanted to leave the world, which is just awful when I have a great husband and two lovely boys, but I couldn’t help it.”

Getting a diagnosis was a relief. “It was nice to find out what was going on.” Lane, now 57, struggles to recognize people and struggles with her mental health when she’s alone or has nothing to do. Her advice to others with the condition was to stay active. “There are still positive things you can do,” she said.

NHS figures show 207,135 patients have Alzheimer’s and 75,920 have vascular dementia, accounting for more than half of all diagnoses. But a third of patients, almost 155,000 people, are listed as having “other” or “non-conclusive” dementia.

This means that they either have an even rarer form of dementia, or it is not known which form they have. This means that they do not receive treatment and care tailored to their different pathologies, prognoses and symptoms.

James White, head of national advocacy at the Alzheimer’s Society, said diagnosis rates were unacceptably high.

“Around a million people in the UK are living with dementia and it is the biggest cause of death in the UK,” he said. “Yet these figures show there is a worrying gap between the thousands of people in England living with frontotemporal dementia and dementia with Lewy bodies and those who have been diagnosed.

“The new government must prioritise dementia by increasing diagnosis rates and setting new ambitious targets. It cannot be true that a third of people in England living with dementia have no diagnosis.”

Rachel Thompson, a consultant admiral nurse for Lewy body dementia, said: “Carers and families supporting people with Lewy body dementia need access to specialist support and advice, which places emphasis on correct diagnosis.”

She also called for a better understanding among healthcare professionals of how Parkinson’s disease can present alongside Lewy body dementia, to ensure people with the condition receive the right treatment and advice.

NHS England has been contacted for comment.