Vital Signs: Dementia

Briefing · Parliament

MPs and peers press government on dementia diagnosis rates, data gaps and care funding as treatment era begins

1. 01The inadequacy of dementia data and its consequences for clinical trials was a central theme in the Lords debate on patient data for research on 10 September. Baroness Murphy (Crossbench) described dementia data as being 'in an extremely poor state', citing late identification, poor linkage and inconsistent coding, while Lord Kamall (Conservative) argued that without high-quality, interoperable data, progress on diagnosing and treating dementia 'will stand or fail'.
2. 02In a Lords question session on NHS dementia treatment trials on 22 June, Baroness Merron (Labour) confirmed the government is committed to recovering the dementia diagnosis rate to 66.7% and is developing a modern service framework for frailty and dementia by the end of the year. Baroness Murphy pressed the Minister on the fact that only 30% of dementia cases are ever diagnosed, while Lord Harper (Conservative) questioned whether the steps outlined were adequate to handle new disease-modifying drugs when cleared by NICE.
3. 03The discharge of Isle of Wight dementia patients to mainland care homes was the subject of an adjournment debate on 16 June, in which Richard Quigley (Labour, Isle of Wight West) described a care commissioning model where 87% of care services are commissioned below true cost, and called for funding uplifts to reach frontline providers. Minister Preet Kaur Gill (Labour) acknowledged that being moved away from familiar surroundings can be 'profoundly distressing' and restated local authorities' statutory duty under the Care Act 2014.
4. 04Two new clauses tabled by Joe Robertson (Conservative, Isle of Wight East) during Health Bill committee stages on 16 July would have required the Secretary of State to publish an annual dementia care report covering NHS and social care provision, workforce, post-diagnostic support and care coordination. The government opposed them as unnecessary, with Minister Karin Smyth (Labour, Bristol South) saying she understood the rationale but did not consider the clauses necessary; they were subsequently withdrawn.
5. 05The question of whether dementia care should be funded on the same basis as cancer treatment was raised directly with the Prime Minister on 1 September by Neil Duncan-Jordan (Labour, Poole), who called it a 'fundamental unfairness'. Andy Burnham (Labour, Makerfield) responded that a system that supports people with dementia as well as it treats people with cancer is 'the goal we should be working towards', while Sir Andrew Dilnot, giving evidence during the Health Bill's second sitting on 16 June, described the means-tested funding line as 'arbitrary' and said it is 'making it hard for the NHS to work'.