The Triangle of Care initiative aims to improve communication between those caring for people with dementia and health professionals.

When Kate Harwood went to visit her husband in hospital after he’d had a prostate operation she couldn’t find him. Marco, who had dementia, had wandered off to the 16th floor and no-one on his ward had realised he’d gone. “That first time he was in for an operation was a disaster,” Harwood says. “There was no awareness of dementia and of what it might do to him. I could never find anyone to talk to – I felt like banging my head against a brick wall.”

Sadly, hers is not an isolated example among those caring for people with dementia. According to the Carers Trust, carers too often have to fight to get their voices heard and to be given the information and advice they need, particularly in medical settings. A recent report by the trust showed, for example, that more than half of those caring for someone with dementia had not been given advice on managing medication or incontinence and more than two-thirds had had no support in dealing with the agitated behaviour people with dementia can display, particularly as the condition worsens.

Now the trust is hoping to change all that with a project to ensure carers are better involved when their loved ones with dementia need medical care. The Triangle of Care initiative for dementia, developed in partnership with the Royal College of Nursing, as well as people with dementia and their carers, sets out a framework for meaningful engagement between professionals and those with first-hand experience of the condition. It builds on a similar initiative for mental health services, which, says Ruth Hannan, policy and development manager for mental health at the Carers Trust, demonstrated how more effective communication could help carers, patients and professionals alike.

“The idea is that if you are a carer for someone with dementia who is admitted to hospital, people will speak to you and you will get the right information and be signposted to better support both for yourself and the person you care for. In that way the person you are caring for will stay out of hospital longer in future and will live well longer,” Hannan says. “It’s all about making sure people are not in the dark and not having to fight to get information and give information, so they know they are not alone.”

The Triangle of Care is built around six key standards, including identifying and assessing carers and their needs, training staff in carer engagement, designating staff members to build links with carers and providing good carer support. As Hannan points out, it’s not necessarily revolutionary stuff. “This isn’t about doing new clever things, it’s about looking at what is good practice and making it standard practice,” she says. “The most common thing carers say when they see the Triangle of Care is ‘it’s not rocket science’. It does seem incredibly straightforward. But the problem is that health professionals are just not trained for it to be standard practice so in a sense we are having to reeducate them.”

The Royal College of Nursing will be helping to roll the Triangle of Care standards out in nine hospitals in England and Wales this autumn as part of its year-long programme to transform dementia care in hospitals. Other hospitals are also being encouraged to adopt the framework. The RCN’s dementia project lead Rachel Thompson says carer involvement needs to be a key part of improving care. “A lot of hospital care ends up being focused just on the patient and people don’t naturally think about how they can involve and include carers – there’s a bit of a mindset of ‘we are the experts, we’ll look after them and you can go and get some rest’,” she says. “But professionals can learn from carers if they see them as the person who knows the patient best and recognise that they are not somebody who is going to add to their problems but somebody who will help them look after the person they are trying to get the best care for.”

For Frank Arrojo, who like Kate Harwood was involved in developing the Triangle of Care for dementia, a change in mindset can’t come too soon. He cared for his mother for 20 years – but only got a proper diagnosis of dementia just weeks before she died back in 2011. He says he often felt isolated and lonely as he battled to be heard by professionals.

“I felt the whole system was against me,” he says. “It was a real struggle to try and impose myself on the doctors and nurses, but I realised without my insight and knowledge there was no way they could help my mum. I could tell more than any other person – GP, doctor or professional – what was happening to her.”

“This Triangle of Care is the first time anyone has recognised the importance of a relationship like the one I had with my mum,” he adds. “If the medical profession and the public servants who design services can start to understand that, you can make progress.”