A diagnosis of dementia is not the end of a person’s world and doesn’t mean that they have to stop doing things that they have always enjoyed. However, they might need support and to find different ways to overcome their difficulties to live well with a diagnosis of dementia.
Birmingham and Solihull Mental Health NHS Foundation Trust’s Memory Assessment Service (MAS) offers a comprehensive pathway from pre-assessment counselling to prepare a person for knowing they have dementia through to their assessment, diagnosis and support planning, including referrals to specialist Admiral Nurses and dementia advisers.
But MAS clinical psychologist Melanie Walwyn-Martin and the team realised that many people were being discharged from the service without reaching the stage where they could make the most of all the information that might help them.
“It’s a lot to take on board,” Melanie says, “especially as our focus is on early diagnosis, so they may not feel they actually need support just yet.”
So the basic premise of Next Steps – Living Well with Dementia – a series of events developed by Melanie – is for people with a diagnosis of dementia and their friends and family to have another opportunity to engage with support services and find out what is going on in their local area.
Melanie started doing her own research into local support services and specific projects aimed at helping people live well with dementia, including in the voluntary sector.
“There are lots out there, like clubs, churches that host memory cafés and programmes to help memory skills,” she says.
“Anything that supports people to stay independent for as long as possible is good. General wellbeing is important too, to empower someone with dementia to feel they’ve still got choices and stay connected to the community and stop them becoming socially isolated.”
Next Steps brings all these services together in informal ‘market place’ style events four times a year – two in Solihull and two in Birmingham – and invites people with dementia and their families and friends to come along to as many events as they like to hear about what support is available.
“There are short presentations but mostly this is a chance for people to sit down with a cuppa for a chat and to ask questions. Friends and family are welcome to attend on their own even if the person with dementia still isn’t quite ready to know more about the help available,” explains Melanie.
Typically a Next Steps event might showcase the local fire service, which provides support for vulnerable people, the Solihull United Reform Church and its MOMENTS café and activities, assistive technology providers, libraries offering ‘books on prescription’, homecare agencies, and legal and financial experts who can advise on benefits and setting up a lasting power of attorney.
Core support services like Alzheimer’s Society, Admiral Nurses and West Midlands Fire Service return time after time.
The Next Steps programme is something Melanie has done on top of her day job, with little resource other than admin support to send out invitations. No funding means she’s reliant on free community venues – recent events were held at Solihull Fire Station and Solihull Methodist Church.
“The last Solihull one was packed; people really seem to like them,” says Melanie. “Next Steps pulls everything together when someone has a lot to think about, and at a point when they feel ready to make readjustments so they can carry on with their lives.”
At the moment most people hear about Next Steps following a diagnosis by MAS – they’re given a leaflet and phone number so they can attend an event when they feel ready to learn more about what support is out there – but Melanie is keen to open up Next Steps to anyone given a dementia diagnosis by their GP or community mental health team.
She also wants to start capturing data to show what support people actually use after having shown interest in it at an event.
Meanwhile, the more Melanie explores local support and networks with services and projects, the more she finds – which is good news for MAS and the information it can direct people to.