New research: Hospitals often missing dementia despite prior diagnosis

Hospitals in the UK are increasingly likely to recognise that a patient has dementia after they’ve been admitted for a different reason, finds a new UCL-led study, but it is still only recognised in under two-thirds of people.

The study was conducted by researchers from UCL, King’s College London, Camden and Islington NHS Foundation Trust, South London and Maudsley NHS Foundation Trust, and INSERM, and was funded by Wellcome and the National Institute for Health Research (NIHR).

This is the first study to identify an improvement in dementia diagnosis in hospitals over time, and also found inequity between ethnic groups for the first time.

Researchers identified people who had been diagnosed with dementia in South London and Maudsley NHS Foundation Trust memory clinics, and subsequently admitted to a general hospital and examined whether dementia was one of the diagnoses on the patient’s hospital discharge summary. 

They found that among people who went to hospital within one year of being diagnosed with dementia, the hospital recognised and recorded their dementia 48.7% of the time in 2008, improving to 61.5% of the time by 2016. Across the study period, hospitals recognised dementia in 63.3% of inpatients with a dementia diagnosis, no matter how recently they’d been diagnosed.

The study, available online today by Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association as an article in press, also finds that those of ethnic minority backgrounds are almost twice as likely to have missed diagnoses in general hospitals compared to white patients. Hospital staff are also less likely to recognise dementia for single people, younger people, and people with more severe physical illness.

Lead author Dr Andrew Sommerlad, UCL Psychiatry, says better sharing of health records between health care providers could help reduce missed diagnoses.

“People with dementia are more likely to be admitted to general hospitals for other illnesses, partly due to difficulties taking care of themselves – and once they’re in hospital, those with dementia tend to have longer stays and face more complications. Hospital records need to accurately reflect the patient’s condition so that doctors can tailor their care accordingly,” said Dr Sommerlad.

“While it is great that there is some improvement, a third of people with dementia are discharged from hospital without it being recognised that they have dementia. They may need help, for example, with remembering agreed new plans about their health and with remembering to take their medication, but this help cannot be given unless the condition is identified,” he said.

The team examined 138,455 hospital admissions from 21,387 people between 2008 and 2016, including 37,329 admissions of 8,246 people who had known dementia before general hospital admission.

Lower recording rates for people from ethnic minority groups may be due to communications difficulties, so the use of interpreters and culturally appropriate cognitive assessments could help.

“There is a growing public and clinical awareness of dementia and its symptoms. Health organisations globally are seeking to increase timely diagnosis rates, and this appears to be paying off. But hospital staff should also be aware of inequities between groups, so that they can be more alert to possible signs of dementia in these patients,” said Dr Sommerlad.

 “We would also like to encourage people who have noticed changes in their memory to speak to their doctor or hospital staff about it. Getting the right diagnosis can help people plan for the future, and ensure they’re getting the care that’s best for them,” said the study’s senior author, Professor Gill Livingston, UCL Psychiatry.

The researchers caution that their findings may underestimate the extent of missed diagnosis in people with dementia.

“While our study focused on people who already had a dementia diagnosis, there are likely to be others who are not known to have dementia and are admitted because their dementia has led to them, for example, losing weight as they forget to eat or are unable to organise to buy or cook food.  Hospital admissions can be an opportunity to receive a timely diagnosis,” said Professor Livingston.

Robert Stewart, Professor of Psychiatric Epidemiology & Clinical Informatics, King's College London, and academic lead for the Clinical Record Interactive Search (CRIS) data resource, said “This study addresses an important issue for people with dementia using the wealth of information available from CRIS at the Maudsley, and from the linkage we have made with Hospital Episode Statistics (HES) data from NHS Digital. It also illustrates the way in which networks of universities and Trusts are now working together with these types of data resource to address questions of real clinical importance.”

Notes to Editors

This story is based on a press release from UCL.

For more information or to speak to the researchers involved, please contact Chris Lane, UCL press office: T: +44 (0)20 7679 9222 / +44 (0)7717 728 648, E: chris.lane@ucl.ac.uk

A Sommerlad et al, ‘Accuracy of general hospital dementia diagnoses in England: Sensitivity, specificity, and predictors of diagnostic accuracy 2008–2016,’ will be published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association

The DOI for this paper is 10.1016/j.jalz.2018.02.012.