Investigation exposes shocking variation of hospital care for people with dementia

In addition to Freedom of Information (FOI) requests, an Alzheimer’s Society’s survey of people affected by dementia found that 92 per cent of respondents thought hospitals are frightening places for people with dementia.

Meanwhile, more than half (57 per cent) said they felt people with dementia were not treated with understanding and dignity in hospital. Only two per cent reported that, in their experience, all hospital staff understood the specific needs of people with dementia.

A litany of failures in hospital care has been reported to the charity, for example instances where people with dementia were treated with excessive force, not properly supported to eat or assisted in choosing meals, not provided with water in a way they could drink it, not given the right pain medication, or medications in the correct form, left alone on wards or busy A&E departments for hours, left in wet or soiled sheets, left at risk of developing infections from lack of focused personal care, denied visits from family carers and spoken to in a way they could not understand.

In response, Alzheimer’s Society is launching its Fix Dementia Care campaign in East Sussex.

Elsie Carrasco, 34, from Crowborough, helps to care for her mother Helen, who lives in the South Norwood area. In December last year, Helen was admitted to hospital after it became apparent she wasn’t taking her medication for other pre-existing medical conditions, as well as not really being able to talk and Elsie did not know the last time that she had eaten.

Elsie said: “Before going into hospital, my mum didn’t have a formal diagnosis of dementia even though I recognised the signs because my dad had Alzheimer’s disease.

“They took her for an MRI scan and could see that she’d had a stroke and also has dementia. It’s hard because trying to get help from the hospital was quite difficult – it’s hard because you need them to understand your specific situation.

“I feel really sorry for the nurses because I don’t think they’re given enough training to understand dementia and the kind of support that would be needed by not only that person by the family and friends of that person.”

FOI requests uncovered unacceptable variation in the quality of hospital care across England. In one trust, 702 people with dementia fell in 2014-15, the equivalent to two falls a day. Last year 28 per cent of people over the age of 65 who fell in hospital had dementia - but this was as high as 71 per cent in the worst performing hospital trust.

Independent analysis has shown that, on average, if a person with dementia falls in hospital they spend nearly four times as long there and the resulting complications increase the likelihood of being discharged into residential care.

The FOIs also unearthed that people with dementia are being inappropriately discharged at night. Last year, in the 68 trusts that responded to this FOI (41 per cent), 4,926 people with dementia were discharged between the hours of 11pm and 6am.

Discharge at night is considered inappropriate as it is unsafe and disorientating for people with dementia who are less likely to be able to access care and support at this time of the day. For example, care homes are often closed at night. Being discharged at night can also leave carers without relevant information and people with dementia without the correct medication.

Chris Wyatt, regional operations manager for the South East at Alzheimer’s Society, said: “Good dementia care should never be a throw of the dice – yet people are forced to gamble with their health every time they are admitted to hospital.

“Poor care can have devastating, life-changing consequences. Starving because you can’t communicate to hospital staff that you are hungry, or falling and breaking a hip because you’re confused and no-one’s around to help, can affect whether you stand any chance of returning to your own home or not.

“We must urgently put a stop to the culture where it’s easier to find out about your local hospital finances than the quality of care you’ll receive if you have dementia. We are encouraging everyone to get behind our campaign to improve transparency and raise the bar on quality.”

In the worst performing hospitals, people with dementia were found to be staying five to seven times longer than other patients over the age of 65.

With a quarter of hospital beds occupied by people with dementia, an estimated £264.2 million of public money is being wasted on poor dementia care (2013/14), including excess days spent in hospital (£155.3 million), falls (£15.9 million) and emergency readmissions (£93 million).

Alzheimer’s Society’s campaign is making the following recommendations to fix dementia care:

- All hospitals to publish an annual statement of dementia care, which includes feedback from patients with dementia, helping to raise standards of care across the country

- The regulators, Monitor and the Care Quality Commission, to include standards of dementia care in their assessments

Chris Wyatt continued: “Hospitals have a duty to be transparent and accountable to their patients, and to continually monitor and improve dementia care. While there are notable examples of excellent care across the country, the difference from one hospital to the next is far too great and there is inconsistent understanding of the needs of people with dementia.”

Alzheimer’s Society is calling on people in East Sussex to back the Fix Dementia Care campaign by signing up at www.alzheimers.org.uk/fixhospitalcare.

Over the course of 2016, Fix Dementia Care will look at the quality of care people with dementia receive in three key care settings: in hospital, in care homes and in the home.

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