Real stories

Dementia carers unite to make their voices heard

‘I’m not one for sitting back and complaining about things. I believe in doing my best to help improve services,’ says Ann Hill, member of Carers United.

This can-do attitude is echoed by everyone in the Wakefield group.

Carers United is a partnership between Alzheimer’s Society and local charities the Prince of Wales Hospice and Memory Action Group.

Its creation in autumn 2023 was completely organic, explains Katty Keyhani, our Local Services Manager in Wakefield.

‘Carers told us that they wanted a platform to help them get together and bring about change,’ says Katty.

They wanted to vocalise their experiences and create a safe space to express their opinions.

Group member Elaine Wood says it was prompted by a simple question.

‘What about the carers? Why don’t we have some kind of voice?

‘I know from experience of campaigning on autism and learning disabilities that, in order to change things, first you have to engage with people.’

Focused on change

From these initial conversations, things moved swiftly due to the passion of everyone involved.

‘It happened quickly because people wanted change’, explains Katty.

The Prince of Wales Hospice, Memory Action Group and Alzheimer’s Society agreed that each would bring two carers to the group.

Two volunteers would take it in turns to chair and facilitate, and they’d meet once a month at the hospice. 

Jo Dunford, Wellbeing Lead at the hospice, says she jumped at the chance to get involved.

‘The hospice has always been very passionate about support, engaging and supporting our whole community and breaking down barriers.

‘So, we were really keen to work collaboratively with Katty and Memory Action Group to improve the lived experience for those in our community.’

We realised that if we all pulled together and made it a proactive group, we could be more influential.

The Memory Action Group is a peer support group and drop-in centre. It was set up by Jan Archbold for people with dementia and their carers after she struggled to find support when caring for her husband.

‘Our three organisations are the facilitators. But basically it's for carers to have their say and their views are more important than anybody else’s.’ 

Carers’ perspectives

Carers United gives people the space to express their honest, and often illuminating, experiences and perspectives.

Their focus is on finding solutions, says Ann.

Being part of this group helps us channel our ideas. It’s a chance to feed off each other, and bounce back ideas back and forth.

The carers not only bring their insights, but ones picked up from other carers they encounter.

There’s power in these different perspectives, explains Elaine.

‘Carers have completely different viewpoints that people working in this field don’t often see, so that’s what motivates me.

‘It’s all about trying to make people more aware of the nitty-gritty of caring. I don’t want their sympathy – I don’t want anybody to feel sorry for me, it doesn’t help me.’

Since its creation, carers have identified several key priorities – common experiences that are hugely challenging, such as incontinence and urinary tract infections, and hospital admission.

Talking with dementia professionals

Healthcare professionals are invited into the group to talk through the challenges carers face, and together they find a way forward.

‘When we first started, it was a case of we can’t change the world, but maybe we can make small differences,’ says Jan.

By collaborating together, the group has already had an impact in many areas.

‘We were flagging up that the memory clinic, the GPs and hospitals are all on very different systems, so it’s not automatically on someone’s notes that they have dementia,’ says Elaine.

We thought it was important that if someone goes to hospital, that everyone should know from the outset that this person has dementia. 

‘So, we worked with the complex needs team at the Mid Yorkshire Hospitals Trust and they’ve now got a yellow flag system for identifying people with dementia.

‘We’ve also worked with the complex needs team to develop training for hospital staff.’

Standing up for carers

It’s important too that carers’ needs are taken into consideration when creating services. It sounds so simple, but often carers are overlooked, explains Elaine.

‘For example, somebody came to talk to us about virtual hospital wards, which is basically where someone can receive hospital-type care at home.

It’s a great idea, but there needs to be an open discussion with carers rather than it be an automatic decision. 

‘Some carers may prefer their loved ones at home. Others may not be able to manage it. 

‘It depends on lots of things, such as the reason for the care in the first place, and what stage of dementia a person is in.’

As well as informing healthcare professionals, the group is also educating the community. They’ve been involved in roadshow events in Wakefield to raise awareness and tackle stigmas about dementia.

Above all else, Carers United is supportive space, explains Jan.

‘You get more information and support from other carers because they know what it’s like. It’s good when you see friendships being made.’

Group empowerment

It’s been a productive start for the group, creating lots of momentum for the future.

‘There is such a huge amount of work to do, but we’re excited about the future because people have started to listen to the group. When we do things together, they’re less daunting,’ says Jo.

‘Together, we empower people to have a voice. When they talk, people sit up and listen,’ agrees Katty.

Carers United isn’t only inspiring in the wider change it’s creating, but also in terms of the personal impact on everyone involved.

‘It empowers me. It gives me a voice,’ says Elaine.

I’m not nervous about giving my opinions because other people are not living my life and I have absolutely nothing to lose by explaining what it’s like.