Partnership takes new approach to dementia care
Collaboration between university and care charity in Liverpool includes a simulation that puts users inside the mind of someone with the condition
It feels like I’ve stepped into particularly odd dream. Disembodied voices bark words that I struggle to make out, and I’m shoved roughly from place to place. Opaque glasses restrict my field of vision; giant mittens render my hands all but immobile and I feel overwhelmed, vulnerable and pliant.
I am awake, however, and on a virtual experience designed to make me feel like I have dementia. Ten minutes in here feel like an hour and I’m relieved when I’m returned to normality, although I can’t shake a lingering sense of disquiet.
“We often hear it said that people with dementia have challenging behaviour, but we need to start putting ourselves in their shoes,” says facilitator Pam Stopforth afterwards, in our de-brief. “We put them into environments which challenge them and they have absolutely no control over it. What do we expect?”
Stopforth is head of development at PSS, Merseyside’s main provider of support for people with dementia, and the virtual journey – designed in consultation with people who have the condition – is part of her mission to increase awareness of their needs.
Dementia is the general name for about 100 related conditions – the best known being Alzheimer’s – whose symptoms include memory loss, confusion and difficulties retaining information.
While these predominantly affect the over-70s, people in their 20s have been known to develop dementia, and the number of alcohol-related cases is also rising. There are more than 750,000 known cases in the UK but the true figure could be far higher, with numbers expected to increase as we all live longer.
Stopforth, a social worker by training, says fear prevents people from seeking help when they or a loved-one experience memory problems. While there is no cure, she believes it is crucial to overturn the stigma attached to the condition.
To this end, PSS has formed an unusual partnership with Liverpool’s Hope University, in part thanks to the influence of Bill Chambers, a former pro-vice chancellor, whose late mother, Mabel, had dementia.
Five years ago the university set up a social care degree with input from PSS but the relationship is now more formalised. Today, the virtual experience is located at the university, along with some of Stopforth’s team. The charity and Hope also run a free befriender’s service, through which students and volunteers are supporting 30 patients and carers, and they also operate the Dementia Centre Online, an advice site and chatroom for people with the condition, carers and professionals.
Until Chambers’s mother was diagnosed he knew little about the condition, he readily admits. “My elderly father cared for her at home and life was very difficult until she went into residential care,” he says. “My mother’s care home was particularly forward-thinking and they invited me to speak about my family’s experiences at a conference, and through that I got talking to Pam. We talked about what needs to change in terms of dementia care and the partnership has grown from there.”
Plans are in place for a national research centre to be built at Hope, one floor of which will focus on dementia. The university has allocated £2.5m to the £8m project, which has support from the local authority and primary care trust, and fundraising is now underway to secure the rest through grants and sponsorship.
The centre will provide education and training in dementia care, consultancy, support to graduates developing businesses in this field and dementia-related research in subject areas including psychology, computing and nursing. PSS also plans to open up the facilities to community organisations across the north of England.
Stopforth hopes to trigger a revolution in dementia care. “Really, it’s all about looking beyond the label and dealing with the individual on their own terms,” she says.
“We would like to reduce the use of anti-psychotic medication, which is given to dementia patients because people struggle to deal with their behaviour.
“But once you remove drugs you’ve got to put stimulating activities on in their place – it could be art, music, drama, whatever. I’d like to see more focus on what people can do. Understand where they are coming from, involve them in whatever you’re doing, and make them feel useful. It’s a mindset.”
So far, more than 2,000 people have been on the PSS virtual dementia journey, including health and social care professionals and family carers. Stopforth finds carers are often profoundly affected, feeling guilty about their lack of patience. It is essential to talk afterwards about the support available and ways to change.
She says: “The biggest thing we can do is give a carer permission to say: ‘I hate my life’. We can then signpost them to other services and our befrienders can go and support them, because carers often end up feeling very isolated.
“Of course it’s crucial to support the person with dementia, but actually if we provide the right support to carers and the right training to care professionals, they will do a better job with the person they are looking after.”