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Where people matter more than memories

To mark World Alzheimer’s Awareness Month, Andrew Stone reports on a residential home that cares for people who have been diagnosed with dementia

A dementia diagnosis affects the whole family

THERE are 46 million people in the world living with dementia, with a new case developing every three seconds. That’s according to Alzheimer’s Disease International, an umbrella organisation of 94 Alzheimer’s associations across the globe. The organisation is the driving force behind World Alzheimer’s Month, which runs throughout September to raise awareness of dementia and challenge the stigma that surrounds it.

During the month and into October, sponsored Memory Walks are being held around the UK, which many people complete in memory of a loved one who had dementia. Among those taking part is Chris Shields, whose mother was diagnosed with the illness before her death in June.

‘A dementia diagnosis affects the whole family,’ he tells me when we meet in Hassocks, West Sussex. ‘It doesn’t leave anyone out. As the illness progresses it can be harder for the families than it is for the person who is actually living with it, especially if that person loses their recognition of who people are.’

Chris’s experience of the illness is not limited to what he experienced with his own mother. He is the manager of Villa Adastra, a 40-bed residential care home for older people run by The Salvation Army, where about 85 per cent of the residents have been diagnosed with dementia.

‘Having had my mum live with that relatives of our residents are going through,’ he explains. ‘It gives me a better perspective on how they are seeing their relative’s decline and how they are learning to cope with that.

‘I can tell them how I had to grow with my mum’s new personality and learn to live with her changes. I hope that passing on my personal experiences will benefit them.’

Chris has been managing the care home for 12 years and, during that time, has been responsible for the care of hundreds of older people. It is clearly a job that he takes great pride in.

‘I’m motivated by the fact that I can make a difference to the people who live here,’ he says as he shows me round the building, which was originally given to The Salvation Army in 1928 by philanthropist John Stafford specifically for the care of older people. ‘That difference might just be in a conversation that I have with them, but it’s a difference in the person’s life that makes them feel they are still valued.’

It’s something I see put into practice during my tour. Each time we encounter one of the residents, Chris stops to say hello and to see how they are. Other staff members do the same as we make our way round. But the pauses in our journey give me the opportunity to see the work that has been done to the building itself to help stimulate the residents’ memories.

One wing is decorated to look like a trip to the seaside, another has posters of films from the 1950s and 1960s on the wall and leads to an in-house cinema. The cinema is decorated to evoke the atmosphere of a picture house from the mid-20th century with tip-up seats (as well as more comfortable armchairs), film reels and even a mannequin usherette. When the films are shown, tickets are provided for the residents and popcorn served.

The building also contains a fully equipped and suitably decorated hairdresser’s salon, while the old-time Villa Adastra shop opens every afternoon, complete with an Open All Hours-style push-button cash register.

Communal sitting rooms are furnished with items – all donated by the general public – from 60 or so years ago. These are items that will be familiar to the residents whose long-term memories are often better than their short-term recollections.

As we make our way round, I notice that the doors to the residents’ private rooms are designed to look like front doors, complete with letterboxes and door knockers. Each one is painted a colour that has been chosen by the room’s occupant.

‘I don’t come just to a place of work each day,’ Chris says. ‘I come to a place that is the home of each of our residents, and it is a privilege that I am able to do that.’

It is a home where the residents, who are aged between 71 and 100, receive the individual care that they need. Heading up the team that looks after them is Sharon Bacon, who explains that the carers do more than just attend to those residents’ physical needs.

‘This morning the care staff have got people up, washed, dressed and into breakfast and now they are sitting in with the activities,’ she says.

‘We do all sorts of activities – arts, crafts, baking, knitting, audiobook clubs, physical activities including armchair aerobics, croquet and table tennis, along with singalongs and musical bingo. There is so much that they can do.’

Residents have the choice as to whether they take part in any or none of the activities that are organised every day, but many enthusiastically join in. One group I meet is busily working in a kitchen area.

‘This is so much better than living on your own,’ Renee, one of the residents, tells me as she makes cheese straws, ready to be served to everyone later that afternoon. With the smell of baking wafting along the corridor, I’m reminded that, before I arrived, I had wondered if I would encounter less pleasant smells in the home. I mention to Sharon that I hadn’t detected any scent of cabbage – so often associated with institutional care for elderly people.

‘Care is so much better than it was,’ she answers, making me think she has heard that comment before. ‘When people visit us they always leave surprised because it’s not what they were expecting. For example, there’s nobody just sitting in a circle staring at a television that is too small to see and which they can’t hear.’

The same is true in many care homes across the country, but one thing that makes Villa Adastra, and other Salvation Army homes, distinct is its Christian ethos. This ethos underpins the values of the home and explains why one of the full-time members of staff is a Salvation Army minister of religion.

Major Sandra Frost is the home’s chaplain, and it is a role she clearly enjoys fulfilling throughout the week.

‘Every weekday morning and Sunday afternoons we have prayers, where we sing something and read some verses from the Bible,’ she says. ‘But there’s no obligation for any of the residents to come to prayers or to speak to me if they don’t want to.

‘Sometimes a resident’s family is surprised that there is a chaplain here, although quite a few chose a Salvation Army home because they knew there was going to be a Christian input, and we make no apologies for saying that we are a Christian home. ‘Whatever our age, we should all have the opportunity to hear the Christian message, and sharing that message is one of the things I’m here to do. People need to know that God loves them.

‘There’s no magic formula to what I do. It’s just about being here, coming alongside people and letting them share their feelings. People may struggle sometimes, but I’m here to help them through this new stage in their life.’

Care does not come without its financial costs – particularly when it is given in a residential setting. I wonder who pays for Villa Adastra. Manager Chris explains that there is a mix of funding.

‘Some residents are having their stay privately funded, and then there are those whose stay is funded by the local authority,’ he explains.

‘But local authority funding rates are nowhere near what the true cost of care is. So there is an element of what we call top-up, where families are approached and asked if they are able to fund any additional payments. But as people are coming into care later in life, their relatives are not far away from retirement themselves and don’t have the ability to top up.

‘In those cases where there is a shortfall in funding, The Salvation Army has to decide if they can accept the new resident at the rate given by the local authority.’

Most privately funded residential care is paid for by the utilising of equity in the property owned by the person. This means that if someone doesn’t own their property, their access and choice about the care they receive could be limited. The Salvation Army is lobbying the government to make the system fairer for those who don’t own property.

In the meantime, any shortfall in funding at Villa Adastra has to be covered by the charitable funds of The Salvation Army.

It is not an ideal situation, but during my time at the home, it is impossible to identify who are private residents and whose stay is partly funded by the local authority –they all received the same high level of care.

As I leave, I compliment the team on what I have seen. Although grateful, Sandra explains: ‘We don’t do the work here to be praised for it. We do it because we want to make a difference.’

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