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Improving dementia care in long-term settings

RCN’s SPACE programme is all about positive changes to care at the six homes taking part in the year-long project.
Eddie O'Brien

RCNs SPACE programme is all about positive changes to care at the six homes taking part in the year-long project.

Imagine you are wandering along a corridor that seems vaguely familiar. You pass blue doors with photographs stuck on them but you are confused. You know you were looking for something.

You spot a sign on a door surrounded by photographs. After squinting at it you work out that it says Daphnes Room. The name sounds familiar: was your mother called Daphne?

On the door you see a picture of a wedding in the 1960s. The bride and groom are wearing NHS glasses. You realise that you are Daphne and that the pictures are of you and your family. You are in front of the door to your bedroom. Bingo, you were looking for your room.

The sign Daphnes Room is on

...

RCN’s SPACE programme is all about positive changes to care at the six homes taking part in the year-long project.

Imagine you are wandering along a corridor that seems vaguely familiar. You pass blue doors with photographs stuck on them but you are confused. You know you were looking for something.

Daphne's Room

You spot a sign on a door surrounded by photographs. After squinting at it you work out that it says Daphne’s Room. The name sounds familiar: was your mother called Daphne?

On the door you see a picture of a wedding in the 1960s. The bride and groom are wearing NHS glasses. You realise that you are Daphne and that the pictures are of you and your family. You are in front of the door to your bedroom. Bingo, you were looking for your room.

The sign Daphne’s Room is on one of the bedroom doors in Swn-y-Môr care home in Aberavon, near Port Talbot, south Wales. It is one of six homes across the UK taking part in the year-long Royal College of Nursing (RCN) SPACE programme that began in January.

Making improvements

It follows the success of the college’s 2011 SPACE programme in acute hospitals. This time the programme aims to help nursing staff in care homes make improvements to care for residents with dementia by drawing on the SPACE principles (Thompson and Heath 2013). These are:  

  • Staff who are skilled and have the time to care.
  • Partnership working with carers.
  • Assessment and early identification of people living with dementia.
  • Care plans that are individualised and person centred.
  • Environments that are dementia friendly.

The six homes were chosen after 100 expressions of interest. A shortlist was drawn up and staff at the homes were interviewed by the RCN and the Carers Trust.

The six homes are:

  • Bannview House, Banbridge, County Down, Northern Ireland, where a film club has been set up for residents.
  • Blind Veterans UK, Brighton (see below).
  • Greenlaw Grove, Glasgow, where a choir is run for residents and carers.
  • The Hollies, Littlecombe Park, Gloucestershire, which runs a community memory café.
  • Swn-y-Môr, south Wales (see below).
  • Weavers House, Cookstown, County Tyrone, Northern Ireland, where unregistered staff are being trained to help manage residents’ pain more effectively.

The project has received funding of £20,000 from the RCN Foundation and the RCN.

Dawne Garrett, RCN professional lead for older people and dementia care, says: ‘We were looking for passion, and for a diversity of types of care home. We looked at small care homes, for profit, and not for profit.’

Swn-y-Môr developed the ‘this is your life’ picture montages on bedroom doors to help residents with dementia-associated memory loss. It was one of the innovations introduced after staff tried to put themselves in the shoes of residents. It demonstrates how simple changes being introduced through the SPACE programme can make a big difference.

Changing attitudes

Sharon Williams, manager at Swn-y-Môr and a former general state registered nurse, says: ‘We had ideas before but we needed somebody to focus us. For us it’s all come back to helping people to live better with dementia.

‘During the year we’ve trained all the staff from the maintenance man up, visitors, relatives and friends, and also given information to residents in the home who haven’t got dementia.

‘We feel the training has gone a long way to changing people’s attitudes so that they look at things differently.

‘For instance, when she first came, one resident hadn’t wanted to sit in the dining room with residents with dementia. I recently watched her helping a resident with dementia who wasn’t eating.

‘She was distracting her by asking her about her past life and at the same time helping her to eat. She helped to calm the other resident - it was lovely to see.’

Training and support

At charity Blind Veterans UK’s Brighton home, ward manager Sue Tansey says training was vital. The housekeeping and transport departments received support so that the whole organisation would be dementia aware.

The training focused on how to reduce anxiety and make people feel safe. It looked at how to make residents feel that they were still in charge and able to make choices and decisions. It has given non-nursing staff more confidence to approach residents who may be distressed, says Ms Tansey.

The home, with 40 beds for residential or nursing care and 30-plus respite care beds, caters for ex-service personnel who are blind or visually impaired. Increasing numbers have dementia or dementia-type symptoms.

Empowering staff

Ms Tansey says: ‘Dementia care tended to be left to the care staff. If a resident demonstrated difficult behaviour care staff would immediately be sent for.

‘Now when a member of the housekeeping department goes into a room and finds somebody distressed, instead of hightailing it out and going to grab a nurse they are able to talk to the resident.

‘We’ve empowered them and given them confidence to ask the resident “Are you OK? Is there anything that you want me to do?”’

Homes have been supported by the SPACE programme when they needed literature reviews to be undertaken for them, checks to be made with the legal team or research on where similar projects had been tried.

‘We’re very much an enabling factor in this and a resource that they can use,’ Ms Garrett adds.

Ideas and inspiration

The six homes also attended three SPACE conference days in London to pool ideas and gain inspiration. A closed Facebook group has been set up so that the homes can support each other online.

‘It was great we were able to meet up with the other homes and discuss things with them,’ says Ms Tansey. ‘Our problems were all similar. The networking has been good. A dementia nurse was able to give us a lot of advice on how best to manage people with dementia.

‘In the past we would probably have said “We can’t cope, we are going to have to move them out”, so that has been invaluable.’

Has the project freed up nurse time? ‘No,’ says Ms Garrett. ‘In fact you could argue quite the reverse. A lot of the interventions actually take longer, but because they are a better quality, there are higher levels of satisfaction for the residents and the staff member.’

Looking at feedback

What happens next will depend on feedback from the programme. When it ends in December, nurses at the six participating homes will look at how the project worked, reporting on what was difficult and what should change were it to run again.

The RCN will then evaluate the programme, adapting work done by the University of Worcester’s Association for Dementia Studies team which reported on the SPACE programme in acute hospitals, tailoring its methodology where appropriate.

Swn-y-Môr: Taking risks

Many of the rooms at Swn-y-Môr have sea views that the residents can gaze at from their armchairs, but manager Sharon Williams was determined that residents would not just be staring at the waves.

Inspired by the SPACE programme, the staff tried to put themselves in the shoes of residents with dementia.

‘We made a list and asked ourselves “If we had dementia, what would be the things that would affect us most if you took them away?”’, she says. ‘Obviously family was the first, second was going outside.’

Accident risk

Residents were asked what they would like to do and one of the answers was to go fishing on a boat.

It was quite a task, as Ms Williams admits: ‘One of the biggest issues I had as a manager was the risk of accidents. I had to gain confidence myself and change my attitude. I learnt to look at the benefits of taking risks against not doing the activity.’

Some families were sceptical, Ms Williams admits. ‘Some want to wrap mam and dad in cotton wool and not let them take any more risks when they have dementia.

‘I understand they are being kind, they want to protect mam and dad, but mam and dad are not living then. You have to look at the benefit of the risk. You have to ask: is the benefit more than the risk?’

Positive benefits

When relatives were invited to go on the trips to see for themselves the benefits of the activities, nearly all agreed to their loved ones taking part.

Support also came from the top. ‘We are lucky in Wales as the Older People’s Commissioner for Wales and the Care and Social Services Inspectorate Wales (CSSIW) are supportive.

‘They appreciate the importance of quality of life. They have a much more realistic attitude to the way we take risks,’ says Ms Williams, who even gave a speech about risk benefits at a CSSIW meeting.

When residents – including some in wheelchairs – were taken fishing on a Carmarthen reservoir it tested Ms Williams’ philosophy. One resident got a fish-hook caught in her thumb and had to go to hospital to have it removed. No sutures were needed, but a tetanus vaccination was required.

Getting people living again

Ms Williams recalls the heart-stopping incident: ‘You immediately think “Oh no, here we go, health and safety”, but when she got back she told everybody and showed them her thumb. It was as if she had a war wound. That’s supporting life, getting people living again.’

Some relatives asked Ms Williams whether it was worth taking residents out on trips given their memory problems.

‘One relative said to me “I don’t know why you bother, my mother won’t remember it tomorrow” and I said “I don’t care, she’s enjoying it at the time”’, says Ms Williams.

‘It comes back to quality of life. Life is never the same once you’ve got dementia - we are trying to help people to live better and to embrace living with dementia.’

More confidence

Ms Garrett explains: ‘SPACE has given staff permission to be more innovative, the support gives them confidence to try things out.

‘They need that safety net to make sure that if they do take people in wheelchairs on fishing boats, the organisation isn’t going to say: “Whoa, what were you doing? That’s crazy”.

‘We need to ensure that we don’t protect people with dementia to a point that their lives are dull. Some are able to take that risk themselves, they have complete mental capacity and can choose and as nurses we should be enabling them.

‘But for some it’s a delicate conversation with the family asking “is this a risk that we can take?”’

Involving relatives

Where residents at Swn-y-Môr lack mental capacity to make decisions themselves their past interests and activities are taken into account. Relatives are always involved in the decision.

‘If the activity was something they did before we try to continue it. Even if they lack capacity this usually fluctuates and they may be able to indicate their wishes,’ adds Ms Williams.

But what difference does it make if a resident with dementia is able to go on a fishing trip? ‘When people have been out they eat better, their behaviour is more appropriate, they are not so frustrated,’ says Ms Williams.

‘The benefits of it are all round. So we don’t do risk assessment any more, we do risk benefits.’

Blind Veterans UK: Animal therapy

Furry visitors have been a talking point for residents with advanced dementia at Blind Veterans UK’s Brighton home.

Eddie O'Brien
Eddie O'Brien takes part in pet therapy. Picture: David Gee

Thanks to the charity PetPals Therapy, pigmy goats, rabbits, dogs, guinea pigs and sheep have visited the home.

Ward manager Sue Tansey says: ‘The guinea pigs were brought in little baskets and the members were able to have them on their knees. They are able to pet and stroke them.

Triggering memories

‘That is a stimulus to trigger memories from the past and give them something to talk about.

‘Suddenly they’ll come out with a story about having a pet dog, cat or guinea pig when they were younger.

‘You can then put that in their life history and if a volunteer comes along they will read it and say “They had guinea pigs – that’s something I can talk to them about”.

‘When the members are taking part in an activity like this they seem happy. There’s a spark that’s lit inside them and just for that moment you see them come alive and they’re not Audrey sitting in the corner trying to get out of her chair and looking agitated.

‘Audrey is calmly stroking the animals. It will give her rest for a couple of hours until the reality of life starts to kick in again.’

 


Reference
  • Thompson R, Heath H (2013) Dementia: Commitment to the Care of People with Dementia in Hospital Settings. RCN, London.

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