Hope for ‘the most common form of dementia that no-one has heard of’

Posted on: 29 January 2024

Trinity research team awarded €2.49m by the Health Research Board to investigate Lewy Body Dementia (LBD) which accounts for 20% of the nearly 65,000 people with dementia in Ireland, but fewer than 5% of those affected receive a formal diagnosis.

Hope for ‘the most common form of dementia that no-one has heard of’

Researchers will undertake the four-year ‘EMERALD-Lewy program’ following the award. Lewy body dementia (LBD) includes Parkinson's dementia (PDD) and dementia with Lewy body (DLB). LBD can be characterised by cognitive difficulties, vivid hallucinations and sleep problems, but is a ‘chameleon of sorts’ making its definitive diagnosis difficult. Patients can go through years of misdiagnosis or remain undiagnosed making life incredibly challenging for them and those caring for them.

The EMERALD-Lewy program will improve the diagnosis, management, and lived experience of patients with LBD and their carers, and is the first large scale program of research for the Lewy body dementias (LBD) in Ireland.

Gaps in diagnosis and care will be addressed in several ways by improving the rate and quality of diagnosis and management of LBD. Researchers led by Professor Iracema Leroi will support ‘living well’ with LBD by better understanding quality of life, daily lived experiences and peer support. Finally, together with people with LBD and their families, the research team will shape policy and practice to improve quality of life and share knowledge about LBD in Ireland. 

This funding will significantly improve diagnostic practices and support in LBD, which will have far-reaching positive effects on individuals, families, and society at large by providing appropriate treatment and support, reducing inequity in diagnosis and treatment, and improving mental health and well-being. 

Professor Iracema Leroi, Geriatric Psychiatry, Trinity College Dublin, St James’s Hospital, Global Brain Health Institute (GBHI) and Principal Investigator, said:

“This funding from the HRB is a fantastic opportunity to finally move the agenda forward for the 10,000 people with Lewy body dementia living in Ireland. Improving the recognition of and care pathways for LBD is essential to improve quality of life when living with dementia.”

Because dementia care cuts across disciplines, EMERALD-Lewy will be conducted by an interdisciplinary team of researchers, clinicians (from geriatric psychiatry, neurology, medicine of the elderly), health economists, psychologists and other disciplines from across Ireland.  This type of cross-discipline working is essential to address the gaps in diagnosis and care for the LBD community in Ireland. 

A key element of the program will be patient and carer involvement and participation.  Ken Greaney , co-founder of Lewy Body Ireland and co-applicant for the EMERALD-Lewy program and whose Dad, Dave lives with LBD welcomes the prospect of the positive impact that the programme will make to the lives of people with LBD. Ken said:

“It took 7 long years for my Dad Dave to get his diagnosis of Lewy Body Dementia. While it is far too late for him, the Emerald Lewy Project can be part of his legacy, so that we know his suffering was not in vain. Thousands of other people because of Emerald Lewy will no longer travel that road. This project has the power the change the entire landscape of how this cruel illness is diagnosed and understood, helping those who need it, when they need it most.”

Trinity’s award is one of eight successful Applied Programme Awards from the Health Research Board (HRB). The award is valued at  €2,499,965. The awards were specifically designed to ensure that knowledge generated from the research can be quickly put into policy and/or practice.

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Ciara O’Shea | Media Relations | coshea9@tcd.ie | +353 1 896 4204