Patients should be granted access to drugs that can delay the onset of dementia through the National Health Service, according to the head of a major review into social care. Baroness Louise Casey has issued a powerful demand for urgent action, stating that investment in dementia trials must be scaled up significantly. She suggested the disease does not receive the necessary attention because it predominantly affects retired elderly individuals.
Call for a Dementia Tsar and Improved Focus
While providing an update on her leadership of an independent commission on adult social care, Baroness Casey urged Health Secretary Wes Streeting to appoint a full-time dementia tsar. This role would champion the cause and drive improvements across government departments and the NHS. Her remarks coincide with a partnership between the Daily Mail and the Alzheimer's Society in a campaign to defeat dementia, which claims 76,000 lives annually and stands as the UK's leading cause of death.
Campaign Aims and Drug Controversy
The Defeating Dementia campaign seeks to raise awareness, enhance early diagnosis, boost research efforts, and improve care standards. Drugs such as Lecanemab and Donanemab have demonstrated the ability to modify the underlying disease process, rather than merely alleviating symptoms. They can slow cognitive decline by approximately six months over an 18-month period. However, the National Institute for Health and Care Excellence, the drugs watchdog, has ruled these treatments too costly for the benefits provided and recommended against NHS prescription.
Privately, these drugs are available at a staggering cost of £60,000 to £80,000 per year. Speaking at the Nuffield Trust Summit near Windsor, Baroness Casey expressed strong disagreement with the assessment of their benefits. She stated, 'If I was diagnosed with Alzheimer's disease and told treatment would give me an extra six months to talk to my family and get my affairs in order before that disease took hold, I'm not sure I'd call that a small benefit.'
Public Support and Systemic Criticisms
Previous polling by Ipsos for the Daily Mail revealed that 69 percent of the public support making the latest dementia drugs available on the NHS, regardless of cost. Baroness Casey criticised the apparent lack of energy, drive, and determination in addressing dementia, contrasting it with the robust approach to tackling cancer. She questioned whether the issue is neglected because it affects the elderly, is considered a taboo subject, or stems from the perception that retired individuals are no longer economically active.
She argued, 'Instead, dementia is seen as an inevitable part of ageing, rather than caused by a set of conditions and diseases.' Overall, she called for a 'moment of reckoning' in a sector she described as 'anxiety laden' for vulnerable people and their families. Baroness Casey insisted on an 'honest conversation with the public directly' about the future of the NHS and Labour's promised national care service, including funding mechanisms and care boundaries.
Broader Social Care Challenges
She also condemned brief community care visits lasting only 15 minutes as 'utter shite,' noting that some families prefer hospital stays for loved ones over discharge due to concerns about care quality. Describing the adult social care system as 'creaking,' 'inconsistent, and often impenetrable,' she highlighted its reliance on an underpaid and exploited workforce. Unlike NHS care, social care is not free at the point of use, often forcing individuals to sell their homes to cover costs.
Government Response and Future Outlook
In response to Baroness Casey's calls, Health Secretary Wes Streeting announced plans to establish a National Safeguarding Board to better protect vulnerable adults and accelerate efforts to transform dementia care and research. This includes creating a dementia leadership role to drive forward action. Michelle Dyson, chief executive of the Alzheimer's Society, welcomed the announcement, calling it a 'pivotal moment' that brings hope for overdue attention to dementia.
Baroness Casey's independent commission was announced in early January 2025 and formally began in April. Its second phase, which will make long-term recommendations for the sector, is not expected to report until 2028, indicating a prolonged process for systemic change.
