Sandwell Community Dementia Service – working together to provide better support

Our everyday preferences – whether we want our top buttons left undone, like to wear socks in bed or eat brown, not white, toast for breakfast – are important for us all.

Understanding a person’s wishes makes a huge difference to the kind of dementia support and care they receive.

This is just one area in which Sandwell Community Dementia Service steps in. Covering the West Midlands metropolitan borough of Sandwell, the service works to ensure that local people with dementia get the support that’s right for them.

‘We’re the go-to place, giving people a voice,’ says Sarah Cooke, one of the dementia advisers at the service. 

‘No detail about someone’s life is too insignificant for us. We’re like investigators or detectives, helping people prepare for the future.’

The service is a partnership between a range of organisations working in Sandwell, including us. The Society supplies access to a telephone hub, and a specialist dementia adviser who supports people in more complex situations.

Whole journey

The Sandwell system is both simple and effective, with a clear pathway for people being referred into it.

Organised by Dementia Operations Lead Alex Fleming, the service has three dementia navigators who meet people with dementia and their families to see what practical support they need.

A network of seven dementia advisers then provides support along the whole dementia journey, so long as the person remains in the borough. Those they help can be grateful beyond words.

Mohammed Iqbal, whose wife Jamshaid, 66, has unspecified dementia following a brain tumour, says, ‘For weeks, my wife wasn’t sleeping at all.

‘I care for her as if she was a child and had no sleep myself. I was properly desperate.

‘The Sandwell team persuaded social services to send a carer here from 10pm–6am every weekend for four weeks. This was such a blessing. I can never thank them enough.’

Meanwhile Adam Ashbery, whose mum Kim, 63, has vascular dementia, says the team found ways to break the ‘taboo’ that dementia had become in their home. 

His mum had refused to acknowledge the condition, believing her family wanted to put her into a care home. The team reassured her and worked out everything they could do to help. They persuaded her to attend drop-in groups. They told the family about benefits and help they were entitled to. 

‘It was a complete turnaround for all of us,’ says Adam.

‘People trust us’

Coronavirus restrictions brought teething problems to the service’s initial launch in 2020, so it was relaunched last November with Alex at the helm. 

‘We want to support everyone with memory concerns, with diagnosis and along that dementia pathway until end of life,’ explains Alex. ‘There aren’t many services across the country that cover this wide span.

‘People trust us. They keep coming back to us. We ensure everyone we work with knows the adviser they’re in touch with personally.’

Sandwell is expanding its staff numbers and increasing its training. 

‘The team wants to increase its knowledge of advanced care planning, end of life care and clinical supervision, as well as memory issues. We constantly reflect on what we can do better.’

Alex hopes that people in other areas can build on his team’s work. 

‘I hope they take the vision that we have and push for support in their own locality. 

‘Getting diagnosed, being handed a pack of leaflets and sent away is not enough. People should push, push, push for what they need.’

Sense of purpose

Sarah Cooke supports people in Tipton, one of Sandwell’s six towns. She contacts them regularly and is there when they need her, for anything from a referral to the continence team or to give advice on selling a home. 

Her local contacts are a great boon. She’s currently helping to set up a dementia group within the library, to keep people socialised.

‘We find activities for everyone. If they can’t leave the house, we can send a regular activity box. This might include model aeroplane kits and crossword puzzles. 

‘We try to reconnect them with a world they may have lost interest in, to give them a purpose, cognitive stimulation and a sense of achievement.’ 

Deeper connections

Sometimes a magic wand would come in handy. 

‘We liaise a lot with social services and the package of care people are hoping for is not always available.’ Sarah admits. ‘That can be frustrating.’

Gradually, the team builds relationships that create the deepest trust.

They create life stories with those they work with, collecting photographs and memories to record the information, allowing for deeper connections in the future. 

‘These will allow people to remind them when they scored 100 in cricket or ran along a favourite beach with their dog.’

No question is too silly, is Sarah’s mantra. 

‘I tell them whatever they want to ask, I’ll have been asked before,’ she says. 

And if not? She’s still able to reassure them, saying, ‘Then I’m going to learn something new.’