React to dementia – connect with people

Ros Heath, Landermeads Care Home

She is dressed in comfy trousers, a snuggly jumper, slippers and a dignified string of pearls hangs around her neck. She wears a smile as she welcomes the visitor into her home with a cheerful hello commenting on the weather as the open door allows in a cool blast. ‘Ooh it’s freezing out there – shut that door and come in and get warm!’ she says as she links arms with the visitor, ‘I haven’t seen you in ages – how are you?’ The visitor embraces her and tells her how much she has missed her, but they will make up for lost time over a cup of tea.

The exchange takes 2 minutes:

Jean is a lady living with dementia in a nursing home. Her reality is fascinating and infectious as she prepares for work, squeezes in the school run and still has time to make a delicious tea. These essentials of life have no time constraints and their intensity fluctuates – the school run occasionally in the middle of the night and work abandoned for many days. There are buoyant days and there are grumpy ones – sounds like my life – but it is Jean’s normality and the acceptance of these experiences gives her purpose and validity. The visitor is a staff member on the payroll but a friend in Jean’s eyes.

It’s the little acts that make the difference; without these, people who live with dementia are lost. I’m not talking about the media-worthy scandalous reports of abuse – it’s about the daily connections we make, the comment on the beautiful outfit, the newly fashioned hair, the terrible day at the office, it’s about remembering to include someone in a conversation regardless of their ability to follow the thread, it’s about embracing – and enjoying – the idiosyncratic reality. It’s putting the person before the dementia and having the sensitivity to recognise that someone who has lost the ability to rationalise will inevitably live on emotions and so is inherently vulnerable. A dismissive gesture can destroy wellbeing.

But … it is so easy to do so. We are busy, we have things to complete, our own lives to return to. Each of us needs to stop and recognise that vulnerability and our fundamental role in protecting it.

React to Dementia is part of the React to… series of training resources produced in Nottingham mainly by our colleagues in the NHS. React to Dementia was filmed at Landermeads and features Gwen, one of our family members (residents), who performs like a film star in the two accompanying videos, entitled Lost and Found. In Lost we follow her through her day and witness how she is made to feel inconsequential, defined and isolated by her dementia – painful to watch – and in Found we follow the same day injected with vibrancy as she becomes part of a family loved and validated. It celebrates the beauty of living in someone’s moment with them – Gwen had a fantastic time filming but she had no idea she had done so the next day …. a constant reminder that this is a daily commitment for those of us who choose to work in social care.

The videos are accompanied by a full training resource which identifies the key issues and gives tools to make real connections which impact lives. There is also a training guide for facilitators.

It was essential to us that everyone has access to this so – like all the React to resources – it is free online for anyone to watch and use.

The inspiration for React to Dementia originated in our involvement in the Teaching Care Homes initiative where we identified the need to have training resources which were meaningful, freely accessible and impacted quality of life. Following this we worked with our colleagues across Nottingham to form a group comprising of CCG, Local Authority, EMAS, Optimum Workforce Leadership and two nursing homes (Wren Hall and Landermeads) and took part in the King’s Fund initiative – Care Homes, Housing, Health and Social Care Learning Network – which led to the creation of an Integrated Care Home Group in Nottinghamshire. Through this we secured NHS England funding for the resource. The power of collaborative working!! Huge thanks also go to Ian Donaghy for his inspirational support in filming and producing the videos.

Dementia is now recognised in the UK as the biggest cause of death above cancer and strokes. What we don’t always recognise is that we have the ability for someone to find themselves and live well with dementia; what we so often fail to recognise is what Gwen points out – ‘It isn’t hard’. We need to change our perspective from pitying people to celebrating the enormous gifts they bring. The ability to live emotionally can be beautiful if we provide an environment where those emotions are given the chance to be positive and flourish and if we validate the person in their reality by sharing everyday positive connections. We all need to be loved and accepted, to feel part of something and valued. None of us want to experience institutionalisation or a constant reiteration of what is wrong with us but sadly that it what we inflict on people living with dementia when we fail to recognise them. React to Dementia asks that we reconsider our approach and change our perspective by connecting with people.

And the added bonus – people who live well are physically more healthy – our care homes can ease the burden of unwanted hospital admissions (which for people who live with dementia are frightening, disorientating and highlight their vulnerability) and play an active role in lessening the much needed pressure on the NHS. These people can themselves make the difference if we are willing to be their guide. Making connections is our collaborative offer to our health system – working together has never been more vital; all of us can be teaching care homes if we get this right.

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