The theme of this year’s World Alzheimer’s Month is #AskAboutDementia. The aim is to encourage greater awareness and understanding of dementia, tackling the stigma that can still so often surround the condition.
It’s that stigma – and the misconceptions that go with it – that can lead to people feeling isolated, and cut off from the emotional and practical support they need. And that doesn’t just apply to people living with dementia – it affects their carers as well.
Carers play a vitally important role in looking after people living with dementia. The Alzheimer’s Society Fog of Support report estimates that carers looking after loved ones with dementia in the community save the NHS an estimated £11 billion each year.
Carers provide emotional, physical, financial and practical support – and that can take a toll. Looking after someone with dementia can be extremely challenging, and many carers worry that they’re not doing enough. Research carried out by Dementia Carers found that only a third of carers feel they’re getting the support they need. As one of the carers ADSS works with put it, “Worry is exhausting – and exhausted people fall down.”
That’s why the services we provide for people living with dementia also includes the people living with, or looking after, them. “Carers really matter,” says Karen Heath, ADSS Wellbeing Services Manager. “It’s so important that they have the opportunity to access support and engage with each other. We want them to feel like they’re part of the ADSS family too.”
The range of support on offer from ADSS includes group sessions where carers and their loved one can get involved in everything from singing to arts and crafts to crazy golf. There’s been a trip to London to see a show, and an overnight visit to Norfolk to see the Christmas Spectacular at Thursford is planned for later in the year. “These are the sorts of things people would have done in the past but can seem overwhelming once someone has dementia,” says Karen. “It’s just about keeping that bit of normality – and fun! – in their lives.”
There’s also a Carers’ Learning Programme offering practical advice and useful resources, and peer support groups, where carers have the opportunity to spend time away from their loved one. One of the carers we support summed up the benefits: “By coming to a group, you realise everyone is in the same situation. You may have family but they don’t exactly understand what you go through.” Another talked about the “laughter and fun, and the chance to build new relationships.” Find out more about the support ADSS can offer for carers.
On the day we speak to Karen, she’s running a peer support group at the Safeharbour Memory Wellbeing Centre. People living with dementia can take part in activities, while carers chat over a cup of tea. “It’s also a great opportunity for us to share practical information and advice with the carers,” says Karen. “And at this session, everyone gets a fish and chip supper at the end!”
For Linda, the group has been a lifeline. “I started coming along after the Covid pandemic,” she says. “My husband Jim was still waiting for a diagnosis at that point and I was really struggling to get support for myself. Initially I was just coming once a month but as time has gone on I’ve joined in more, including the singing as well as these peer sessions.
“Jim seems to enjoy being around people and joining in the activities, and for me it’s just great to have that structure to the days and a place to go. You might have had a bad night, you might be feeling really down, but by the end of the session you feel like a different person. We’ve laughed our heads off in here today. Having that release is so important.”
“The friendships you make spill over, too. We text each other, we call each other, we look out for each other. We’re lucky, we have a really supportive family, but there’s still nothing quite like being around people that really understand the challenges involved in caring 24 hours a day.”
The team at ADSS works hard to make sure the support on offer matches carers’ needs. “We’re always listening,” says Karen. “For example our Memory Café sessions used to be a lot more focused on sharing information. But we realised that doesn’t keep people with dementia engaged – and if they can’t focus, their carers can’t either. So now we mix the sessions up, including activities to get people moving and using their cognitive skills too.”
This year we also facilitated a formal co-production exercise with carers in Medway, where we recently launched a new range of services for people with dementia. Find out more about our Medway services here.
“Co-production means working with the people who’re going to be using our services from the very start,” explains ADSS’s Head of Quality & Development Sarah Taylor. “The Social Care Institute for Excellence defines it as ‘sharing power’, and that’s exactly how we see it. There’s no one better qualified to tell us what a carer needs than a carer.” Find out more about how ADSS is using co-production here.
ADSS is here to help and support, whatever you need to #askaboutdementia. Our highly trained Dementia Support Workers from our Support at Home team provide practical support for people living with dementia in their own homes as well as reassurance, support and respite for carers. We also run a range of services in the community, including our Memory Cafés and drop-in sessions where local experts can answer your questions about living with dementia. Contact us to find out more.