The lack of support for dementia carers has been highlighted in a report as an initiative to boost clinical trials into the condition is announced.
A report from charity the Royal Voluntary Service and the University of Birmingham revealed more than a third (37%) of people caring for loved ones with dementia were offered no support to help them cope since diagnosis.
This lack of support is having a devastating impact, said the Living Well with Dementia: Better Community Provision for All report, with nearly one in three dementia carers (30%) feeling they had nobody – be it a professional, family member or friend – to turn to for advice or assistance.
The report found that 35% of dementia carers said they felt helpless, with more than a quarter (27%) feeling isolated and unable to cope (26%). And over one in five (22%) said their situation had made them wonder if life was worth living.
Dr Rachel Fox, national dementia development manager at Royal Voluntary Service, said dementia was a growing challenge, 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 said.
The report was published as a launch of a £20m initiative to boost the number of dementia patients taking part in clinical trials was announced.
The Dementia Trials Accelerator will see the recruitment of tens of thousands of dementia patients to help fast-track the discovery of new treatments for the disease.
It will be spearheaded by the UK Dementia Research Institute (UK DRI), along with Health Data Research UK (HDR UK), and funded by the Medical Research Council (MRC) to tackle the historically low numbers enrolled on trials.
The announcement of the Dementia Trials Accelerator comes a day after a new drug for Alzheimer’s was rejected for NHS use in England by NICE because it is too costly.
Yesterday, the UK medicines regulator approved donanemab, produced by Eli Lilly, which is a new treatment that can slow Alzheimer’s disease progression.
It comes via a monthly infusion and it requires intensive monitoring for serious side effects.
But NICE has published draft guidance that said donanemab was unsuitable for use on the NHS in England as ‘the benefits it offers patients are too small to justify the additional costs’.
The NICE committee reviewing the medicine said ‘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 had advised the committee that introducing treatments such as donanemab ‘would substantially increase demand on primary care and memory clinics because of increased awareness of mild cognitive impairment and availability of treatment options’.
This ‘significant increase’ in demand on primary care was listed by NICE as one of the ‘potential uncaptured costs of harms’ of the new treatment.
In August, a similar treatment for mild Alzheimer’s – lecanemab – received a marketing authorisation from the MHRA and it was also deemed by NICE to be too expensive for the NHS.
