Alzheimer’s Society launch new campaign to Fix Dementia Care

This is Geoff. He is 86 and has vascular dementia. Last year Geoff fell down the stairs and had to be rushed to hospital. His daughters, Kay and Sally-Ann, are full-time carers for their dad, who lives with Kay in the family home. We met Geoff and his daughters after they approached Alzheimer’s Society regarding the poor care their dad had received in hospital.

Geoff’s stay in hospital was an ordeal from start to finish. When he was first admitted, he was left on his own on the ward for five hours, despite needing help to eat, drink, and go to the toilet. When Kay and Sally-Ann would visit, they would find that he hadn’t had any help at mealtimes and that he was often dehydrated. When he was finally ready to go home, he was left alone in the discharge lounge with all his medication. When Kay and Sally-Ann arrived he’d started taking all his tablets as they had his name on them and he thought it was the right thing to do. This should never have happened.

Through Freedom of Information requests to hospitals and first-hand testimony collected from people with dementia, their families and carers, Alzheimer’s Society has discovered that stories like Geoff’s are too wide spread. We have uncovered evidence of variable care that people with dementia face – in some cases shockingly poor- and the hundreds of millions of pounds of public money wasted delivering it.

Having dementia should not prevent you from receiving good care while in hospital. Problems with communication, staff training and a coherent approach to managing patients with dementia is sorely lacking in many trusts in England, and is leading to thousands of vulnerable patients suffering falls, inappropriate treatment, and getting delayed or inappropriate discharges. 86 trusts responded to our FOI requests with almost 5000 patients with dementia in their care were discharged at night last year alone. Only 2% of the carers and people with dementia we surveyed felt that the care they or their loved one received while in hospital was appropriate.

Our report calls for better oversight of dementia care in hospitals at the national level and makes three recommendations as to how this can be achieved:

• We’re calling on Simon Stevens to implement the annual publication of dementia statements by hospital trusts throughout England, showing the quality of dementia care they provide

• Monitor should then use the annual dementia statement as part of its Risk Assessment Framework to identify and take action in hospitals where dementia care is inadequate

• To improve regulation of dementia services in hospital, the Care Quality Commission (CQC) should appoint a specialist dementia adviser and include dementia care indicators as part of its Intelligent Monitoring work

If implemented these recommendations will arm patients with the information needed to force hospitals to make improvements. We want to work with NHS England, Monitor and the CQC to ensure that the NHS cares for people with dementia in the best way possible, so that we no longer have to hear stories like Geoff’s. Putting this information in the public domain will put an end to the culture in which it is easier to find out about your local hospital’s finances than the quality of dementia care they provide. It will allow us to stand together to collectively hold hospitals to account, ensuring the continued improvement of hospital care for people with dementia and better use of NHS budgets.

Over the coming weeks and months, Alzheimer’s Society will be raising awareness about our campaign and the calls in our report. We’ll be holding an event in Parliament on 10 February where parliamentarians will be able to talk to us about the report’s recommendations, as well as meet some of the faces of the campaign. Better, more meaningful, dementia care is possible, but things  have to change.

Find out more about our report, and our Fix Dementia Care campaign here.