Baroness Casey speech highlights urgent need for reform of dementia care
Baroness Casey, who chairs the Casey Commission into Adult Social Care in England (which we have reported on here https://journalofdementiacare.co.uk/?s=Casey+Commission), has given a speech to the Nuffield Trust Summit 2026 where she called on the government to take urgent action to reform dementia care.
The speech, which set out Baroness Casey’s early assessment of the adult social care system, saw her stress – alongside a range of issues – the lack of ownership and accountability across the NHS, local government and central government relating to adult social care and how fragile the whole social care system is. She also made a point of detailing how confusing and impossibly difficult it can be to navigate multiple assessments, financial checks and unclear responsibilities if you need care and support.
In relation to dementia, Baroness Casey outlined key challenges and included examples of personal experiences of dementia, saying:
“I met a man whose wife had severe dementia and needed huge amounts of care and support. They consistently tried to get help, including Continuing Healthcare funding from the NHS and didn’t receive it. But as soon as his wife developed seizures, a direct complication of her dementia, the money kicked in – I guess because this was seen as ‘medical’. Once the medication controlled the seizures, the funding was withdrawn. Her dementia remained the underlying cause, it’s what she and the family lived with. For them this is inexplicable. And frankly I find it hard to explain myself.
People are not told what to expect or what will happen once a dementia diagnosis arrives. I had the honour of meeting a man in Newcastle who received two leaflets when his wife was diagnosed with dementia. One on how to claim PIP, and one on how to get his council tax reduced. He already had money. He didn’t need money. He wanted to know what would happen next – who would help, what could he do? But he was left totally in the dark.”
Baroness Casey ended her speech by detailing some immediate actions she feels are needed which include – in relation to dementia care – a call for the government to:
- Set up a new National Safeguarding Board, ending the abdication of responsibility for protecting people who are vulnerable and at risk of abuse
- To give immediate backing to scale up investment in dementia trials
- To introduce a new, full-time Dementia Tsar
- To deliver faster progress on the Modern Service Framework for dementia and frailty
The full text of Baroness Casey’s speech can be read here: https://caseycommission.co.uk/wp-content/uploads/2026/03/Baroness-Caseys-speech-to-the-Nuffield-Trust-Summit-–-5-March-2026-.pdf (the main focus on dementia is on pages 15-16)
Watch a recording of the speech here: https://www.youtube.com/watch?v=4kw0AAqjdYM&t=6s
Read the government’s response to Baroness Casey’s speech here: https://www.gov.uk/government/publications/letter-from-the-secretary-of-state-for-health-and-social-care-to-baroness-casey
The leading dementia charities have also commented on Baroness Casey’s speech, including:
Alzheimer’s Society: https://www.alzheimers.org.uk/news/2026-03-06/response-baroness-caseys-call-greater-care-dementia
Alzheimer’s Research UK: https://www.alzheimersresearchuk.org/news/alzheimers-research-uk-backs-baroness-caseys-call-for-greater-focus-by-the-government-on-dementia/
Dementia UK: https://www.dementiauk.org/news/our-response-to-baroness-caseys-call-for-urgent-action-and-leadership-on-dementia/
The Casey Commission is due to publish its first report on adult social care in England this year (2026). The second report is due in 2028.
Find out more about the Casey Commission here: https://caseycommission.co.uk