Danielle Wilde is an occupational therapist, and is Dementia Lead at the Royal Free NHS Foundation Trust. In 2013, she led a Health Foundation Shine project called My Discharge, which successfully reduced length of stay and avoidable readmissions for patients with dementia. This led to her developing CAPER, a new methodology for dementia care in acute hospitals that is now being spread to other trusts. 

Challenging the status quo

In 2013, Danielle was recruited to a new specialist dementia role at the Royal Free – a key part of the Shine 2012 programme ‘My Discharge’ project.

Danielle acted as the single point of contact for the patient, carers and staff for patients diagnosed with dementia, provided a personalised therapy package, and accompanied patients home when they were discharged.

‘One of the things we challenged was the preconception that discharging patients with dementia to their home poses a safety risk,’ explains Danielle.

‘We took a much more individualised approach to assessing whether patients were safe to return home, which asked what actually matters to them in their everyday life, rather than basing it on whether they could tell you who the current prime minister is. If all Joyce needs to be able to do to stay at home is get out of bed in the morning, sit in her chair, go to the toilet and make a cup of tea, does it matter if she can tell you what day it is?’

The project achieved some impressive outcomes: reduced length of stay in hospital by 2.6 bed days; reduced readmissions via accident and emergency by 26%; and 100% patient and carer satisfaction over a year.

‘But one of the outcomes I’m proudest of was accidental,’ says Danielle. ‘We hadn’t really aimed for it, but in 34% of our cases, the treating team had already decided that the patient needed to go into a nursing or residential home. Our intervention allowed them to go home instead.’

Getting the bug for quality improvement

‘Before I took that job I’d never even heard of quality improvement,’ says Danielle. ‘In the past I’d just followed the way things had always been done. As my confidence and skills grew, I wanted to challenge some of the status quo, but lacked the language and approach that quality improvement methodology gives you. 

‘During that project something really clicked into place. It's liberating to be able to come up with an idea, test it and see whether it works, and how it can be refined and scaled up.’

With Danielle’s new-found confidence and skills in improvement, she was ready to take on a follow-on project – CAPER – supported in part by a Health Foundation Spreading Improvement grant.

Disrupting the idea of ‘experts’

One of the learning points the team had taken away from My Discharge, despite the great successes, was that it was impractical for the intervention to be carried out solely by one individual.

CAPER is a learning framework that empowers all staff by helping them understand dementia, and puts kindness and empathy at the heart of all interactions with dementia patients. It’s now a standard part of the induction at the Royal Free, with over 500 people trained in the methodology so far.

What is CAPER?

  • Collateral (relevant background information and specialist communication skills)
  • Assessment (meaningful and appropriate assessments)
  • Partnership (welcoming carers as partners in care)
  • Enablement (avoiding hospital-related deterioration)
  • Role modelling (sharing skill and practice)

This short animation explains CAPER in more detail.

‘When I first came to the Royal Free, we had lots of training going on. But I started to realise that the people turning up were more senior. They weren’t the people doing that one-to-one care – the nursing assistants, housekeepers, domestic staff. Nobody had thought to involve them in this training.’

As part of the CAPER project, the CAPER Anchor scheme recruited these people and supported them to become highly skilled dementia experts. They took part in a 6-week course, delivered in weekly 1-hour sessions in the clinical environment.

‘It gave me the opportunity to disrupt the idea of "experts" in dementia care,’ says Danielle. ‘The NHS can be quite hierarchical and so it's made me really proud to see people who lack self-belief suddenly feel able to teach and mentor their colleagues about how to make things better for patients. These staff have taught us that you don’t have to be the boss to be a leader.’

‘Good habits are contagious. If you can reconnect a person with their values, and tell them it’s not skiving to sit and have a cup of tea with a patient for 10 minutes and ask them about their past, it changes the whole ward. We’ve even had a member of domestic staff spot delirium in a patient where the doctors and nurses had missed it.’

The successful approach is now being replicated in other trusts. Through the new models of care programme, the Royal Free London group model is scaling a new dementia pathway that combines CAPER and the My Dementia project. CAPER is also being used in Huddersfield and Bradford.

The next big challenge

Next, Danielle has set her sights on helping patients with delirium, an acute medical condition associated with an increased need for care, longer length of stay, and mortality.

‘Over the last year, I’ve realised that dementia isn’t our biggest challenge, it’s the patients who present with dementia and delirium. So that’s the next big challenge for me, and I'm confident that we can build the best quality, most efficient dementia pathway in the NHS.

‘My ultimate goal in all of this has been to reconceptualise kindness and friendship so that they're not just extras, but solid and evidence-based clinical interventions, and I think we've made massive progress in that thus far.’