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Dementia Trials Accelerator Launches Amidst Concerns Over Carer Support and Drug Costs

• A new report highlights that over a third of dementia carers receive no support, exacerbating feelings of helplessness and isolation. • The UK Dementia Research Institute launches a £20 million Dementia Trials Accelerator to boost clinical trial participation for new treatments. • NICE rejects donanemab for NHS use due to high costs, despite its approval by the UK medicines regulator for slowing Alzheimer’s progression.

A new initiative, the Dementia Trials Accelerator, has been launched to address the historically low numbers of dementia patients participating in clinical trials. This comes amidst growing concerns about the lack of support for dementia carers and the cost-effectiveness of new Alzheimer's drugs. The initiative aims to fast-track the discovery of new treatments for the disease.

Dementia Carer Support Lacking

A report from the Royal Voluntary Service and the University of Birmingham reveals that 37% of dementia carers receive no support to help them cope following a diagnosis. This lack of support has a devastating impact, with nearly one in three carers feeling they have nobody to turn to for advice or assistance. The report also found that 35% of dementia carers feel helpless, with over a quarter feeling isolated and unable to cope, and 22% questioning if life is worth living.
Dr. Rachel Fox, national dementia development manager at Royal Voluntary Service, emphasized the growing challenge of dementia, with rates expected to rise to 1.4 million by 2040. "The impacts are far-reaching and with no effective medical treatment yet available, it’s becoming increasingly crucial to offer more support to all those affected. Worryingly, our study shows too many are subject to receiving whatever is available in their local area or simply have no support at all," she stated.

Dementia Trials Accelerator Aims to Expedite Treatment Discovery

The £20 million Dementia Trials Accelerator, spearheaded by the UK Dementia Research Institute (UK DRI) in collaboration with Health Data Research UK (HDR UK) and funded by the Medical Research Council (MRC), aims to recruit tens of thousands of dementia patients to clinical trials. This initiative seeks to address the urgent need for new treatments, given the current lack of effective medical interventions.

NICE Rejects Donanemab Due to Cost

The launch of the Dementia Trials Accelerator follows NICE's rejection of donanemab, a new Alzheimer's treatment produced by Eli Lilly, for use on the NHS in England. While the UK medicines regulator approved donanemab, which can slow Alzheimer’s disease progression via monthly infusions requiring intensive monitoring for side effects, NICE deemed the benefits too small to justify the additional costs. NICE has requested more evidence on its clinical and cost-effectiveness from Eli Lilly.
The NICE committee reviewing the medicine stated that "more evidence is needed" on its clinical and cost effectiveness and has asked Eli Lilly to address "areas of uncertainty" in the evidence. NHS England advised the committee that introducing treatments like donanemab would substantially increase demand on primary care and memory clinics due to increased awareness of mild cognitive impairment and treatment options, listing this significant increase in demand as one of the potential uncaptured costs of harms of the new treatment.
This decision echoes a similar rejection of lecanemab, another treatment for mild Alzheimer’s, which received marketing authorization but was also deemed too expensive for the NHS by NICE. These rejections highlight the challenges in balancing the potential benefits of new Alzheimer's treatments with their economic impact on healthcare systems.
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[1]
Lack of support for dementia carers highlighted as clinical trial launched
healthcareleadernews.com · Oct 24, 2024

A report highlights lack of support for dementia carers, with 37% receiving no help since diagnosis. A £20m initiative t...

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