Thousands with dementia to get access to clinical trials

Initiative starting Tuesday aims to increase significantly provision of clinical trials for those living with illness

Kieran Maguire (65): 'I have seen five of my siblings suffer from dementia, all of whom have sadly passed away. I live in fear that due to my family history, the same could happen to me.'
Kieran Maguire (65): 'I have seen five of my siblings suffer from dementia, all of whom have sadly passed away. I live in fear that due to my family history, the same could happen to me.'

Tens of thousands of people with dementia will be provided with access to clinical trials designed to improve their quality of life and/or lifespan, under an initiative commencing on Tuesday.

Dementia Trials Ireland, which is funded by the Health Research Board, aims to significantly increase the provision of clinical trials for people living with dementia and those at risk of the condition within a five-year period.

The trials planned range from complex drug interventions to social and arts interventions such as dance therapy. They will be aimed at people at different stages of dementia, from pre-clinical to advanced, as well as different types of dementia, including Alzheimer’s disease and vascular dementia.

Internationally, researchers in dementia have struggled to make the same headway as scientists developing treatments for cancer. More than 99 per cent of clinical trials for new dementia drugs have failed over the past 25 years, according to DTI lead Prof Iracema Leroi.

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“In most fields, this would cause profound nihilism. However, the overwhelming need for trials, and the high prevalence of Alzheimer’s disease and other dementias, demands that we continue seeking a solution. Giving up is not an option.”

More than 20,000 in Ireland not getting care after dementia diagnosis, says new reportOpens in new window ]

Dementia trials are offered to less than 1 per cent of the 64,000 people with the condition, compared to 20 per cent in the UK. In contrast, Irish cancer patients have a one-in-five chance of being enrolled in a trial.

Ireland’s ability to arrest the progression of dementia remains inadequate, she said. “We need more trials, more interventions to trial, and more people volunteering to participate in trials.”

“This is how cancer drugs have succeeded so well, and this is the only way we can move forward as a dementia community,” said co-lead Prof Seán Kennelly.

“We are at a really important intersection where we’re learning more all the time about the biology that’s causing these dementia syndromes and as a result are increasing the repertoire of agents to treat or even potentially prevent them from happening in the future.”

No care

About 11,000 new cases of dementia are diagnosed in Ireland each year, 10 per cent of them in people aged under 65. More than 20,000 people with dementia have been offered no care following their diagnosis, a report estimated last week.

Kieran Maguire (65), a member of a panel set up by DTI to provide feedback, said “I have seen five of my siblings suffer from dementia, all of whom have sadly passed away. I live in fear that due to my family history, the same could happen to me. I want to use my membership of the panel to try to avoid this, and to try to turn myself and my family’s experience of this heart-wrenching disease into something positive.”

While a small number of drug and non-drug trials are taking place in Ireland, the aim of the initiative is to link these trials and share knowledge and experiences.

The trials will seek to recruit healthy volunteers aged between 60 and 80 who might be worried about dementia due to family history; people with symptoms not yet diagnosed; people with a diagnosis; and those with advanced dementia.

Paul Cullen

Paul Cullen

Paul Cullen is a former heath editor of The Irish Times.