Good dementia care should never be a throw of the dice let’s Fix Dementia Care

Kay with Geoff
Sally-Ann with Geoff

Kay and Sally-Anne are full-time carers for their dad, Geoff, 86, who was diagnosed with vascular dementia in 2013.

After falling at home and injuring his elbow, head, fracturing his kneecap and six ribs, Geoff stayed in hospital for nearly a month.

A major challenge was achieving a co-ordinated and timely discharge.

Two weeks into his stay, Kay and Sally-Anne were told Geoff was ready to go home – but there was no mention of a physiotherapist for his knee and his elbow bone was still exposed. They were assured that he would be able to walk up and down stairs. However, on arriving at hospital to collect him, the staff on the ward had just had a change over and didn’t know about Geoff’s treatment or history and didn’t have a care plan prepared so he was unable to leave.

On a number of occasions, Geoff would prepare to leave and then staff would change their minds. In the end, surgery was scheduled so that Geoff could have his elbow stitched up under general anaesthetic.

Following the operation, when Geoff was ready to be discharged, the hospital failed to give Sally-Anne and Kay advanced notice despite them repeatedly saying that they would need plenty of warning as they lived an hour away. They found Geoff alone in the discharge lounge with all his medication. He’d started taking all his tablets as they had his name on them and he thought it was the right thing to do.

Kay said: “My dad received really quite dysfunctional care. Most of the staff didn’t seem to understand dementia and communication was poor. We had to endlessly repeat his specific care requirements as there was no continuity. When he was finally ready to leave hospital, it was beyond a joke to find Dad alone in the discharge lounge surrounded by half open boxes of his medication. He could very easily have accidently overdosed.

According to an investigation by the Alzheimer’s Society, too many people with dementia are falling while in hospital, being discharged at night or being marooned in hospital despite their medical treatment having finished. Freedom of Information (FOI) requests have uncovered unacceptable national variation in the quality of hospital care across England. In response Fix Dementia Care has been launched. to join the campaign click here 

The investigation involved FOI requests to NHS Trusts in England and a survey of over 570 people affected by dementia to gather first-hand testimony of dementia care in hospitals.*

In one trust, 702 people with dementia fell in 2014 -15, the equivalent to two falls a day. Last year 28% of people over the age of 65 who fell in hospital had dementia – but this was as high as 71% 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.**

Worryingly, the FOIs unearthed that people with dementia are being inappropriately discharged at night. Last year, in the 68 trusts that responded to this FOI (41%), 4,926 people with dementia were discharged between the hours of 11pm and 6am. In the three worst performing hospitals, four-five people were being discharged overnight per week – only six hospitals don’t discharge overnight. 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 (e.g. care homes often closed at night), leave without relevant information and/or the correct medication.

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.

Key findings from the survey of people affected by dementia include:

  • 92% thought hospital environments are frightening for people with dementia
  • 57% said they felt people with dementia were not treated with understanding and dignity in hospital
  • Only 2% reported that, in their experience, all hospital staff understood the specific needs of people with dementia

A litany of failures in care has become clear. Alzheimer’s Society was told of 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
  • spoken to in a way they could not understand.

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).

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. The 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

Jeremy Hughes, Chief Executive of 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.”




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