Stand by me: dementia care in Liverpool

brenda_staggEd Gillett speaks to Brenda Stagg, the winner of the BGS’s  Special Medal – an award which was inaugurated in 2015 to celebrate the achievements of people who are not members of the Society, who promote the health and wellbeing of older people throughout society.

It’s a warm summer afternoon in Toxteth, and I’m standing in a church hall breaking out my best disco moves to “Dancing Queen” by ABBA. It’s fair to say I hadn’t planned for the day to turn out quite like this.

I’m in Liverpool to meet Brenda Stagg, a Dementia Support Manager at Alzheimer’s Society: she has recently been awarded the 2015 British Geriatrics Society Special Medal in recognition of her work with older people across the city, and I’m here to find out more about her work.

I meet up with Brenda at the Neurosupport Centre, an office hub which houses several different organisations focused on neurological disorders. It offers support services, resources and meeting spaces for colleagues from healthcare, social care, the third sector and service users alike.

Over a cup of tea in the library, Brenda explains how she came to work for Alzheimer’s Society:

“I started working for Liverpool City Council twenty-one years ago, eventually managing a homecare support team working with older people in the community, so I’ve always worked predominately with older people in a social care setting.

In my last 10 years at the council, I specifically worked with dementia, not only with people who’d been diagnosed, but with their carers and families as well. There have been lots of changes in the Council over the years though, mostly due to budget cuts, and eventually my job was reorganised.

“It became quite removed from working directly with older people, and that’s the part I really enjoy. At Alzheimer’s Society, I get the best of both worlds: my colleagues are amazing and I love managing staff, but I still work operationally too.”

I ask what an average day consists of: unsurprisingly, given the huge varieties between different diagnoses of dementia and the needs of individuals and their carers, there’s no real pattern.

“I support people living with dementia and their carers, attend memory clinics, help join up different services, pick up referrals and help people through their diagnosis… it could be anything really!”

Brenda’s focus on working directly with older people isn’t difficult to understand once you meet her in person. She’s full of enthusiasm and energy for her work, but also very softly-spoken, and thoughtful in her approach to the complex issues and sensitivities around dementia. It’s easy to see why an older person living with such a challenging and scary diagnosis might value her positive, calming presence.

It’s that same personal connection which crops up time and again when we discuss Brenda’s motivation for her work:

stagg2“A lot of people, when you ask them about dementia, view it as terribly negative thing: they don’t always realise that even after they’ve had this diagnosis, an older person can still live a fulfilling life in the community, still go out and see their friends, just as long as they have the right support.

“There’s that saying: when you meet one person with dementia, you’ve met one person with dementia. You can’t apply lessons from one person to another, or use the ethos of how you’d wish be treated.

“I think you just have to treat people with dignity and respect. A big thing is making sure that they’re not talked over, that they’re included in decisions: sometimes there’s that sense of frustration when people get missed out or don’t have involvement in their own care.

“It can be little things: making that phone call to someone who was really upset and talking things through with them can just give them such a sense of being listened to, even if you can’t solve all the problems. Or it could be someone’s been given a diagnosis but hasn’t fully understood it, and you’ve sat down with the family and explained everything, and helped move the situation on for them a bit and improved their quality of life.”

By happy coincidence, I’m able to see this person-centred approach in action later in the day. After our conversation in the library, Brenda shows me around the Alzheimer’s Society office, and introduces some of her colleagues.

stagg3Even so, it’s clear that earlier comments about front-line work being the thing which truly inspires her are true. Brenda’s face lights up when I say that, contrary to her assumptions, I’d love to go along to a meeting: before you know it we’re out the door and whizzing across town to a ‘Singing for the Brain’ session in Toxteth.

Once there, Brenda’s in her element: chatting away to people living with dementia, their carers, and other Alzheimer’s Society staff and volunteers. Rosie, the’Singing for the Brain’ facilitator, explains that their original session on Fridays got so full that they had to start a second one on Thursdays, with a whole group of new faces joining today. The atmosphere is so warm and welcoming that I would have assumed everyone had been friends for years.

And so, before long we’re busting out “Living Doll”, “Da Doo Ron Ron” and a collection of other classics. I’m fairly sure my haphazard singing is letting the side down a little, and the less said about my “Dancing Queen” in particular the better, but no-one seems to mind.

I meet Steven, who now cares for his best friend after he was diagnosed with early-onset dementia five years ago, and Meg, who was a nurse for 25 years before being diagnosed herself with dementia. “It’s so important” she tells me “to have people around you who understand. I’m lucky, in that I know how hard people work, and I’m so grateful that they’re looking after me now”.

We sing “Stand By Me”, and its lyrics about fearlessness and love in the face of an encroaching darkness feel beautifully poignant. Something quite overwhelming and difficult to describe sweeps across the room: wistful in some regards, but also optimistic and cheerfully defiant.

Earlier in the day, I’d asked Brenda what one change she’d make to improve dementia care.

“That’s such a tough question, there are so many things. Obviously there’s a key question about research, about trying to help people understand why they’ve got this diagnosis, or provide better treatments; there’s been no real movement on medication in 20 years.

“And the other thing is for proper investment in social and support services for home: there are sometimes very few services available, either due to budget cuts or the assessment process, so people can’t always get the services they need at home.”

More important though, is what she leaves unsaid: that those services are often only as good as the people running them. The other thing I learn very quickly about Brenda is that she’s exceptionally modest: quick to downplay her own work, or gloss over any mention of her award whenever anyone asks.

She has to explain everything when we arrive at the ‘Singing for the Brain’ session, and when everyone cheers and claps for her you can see she’s delighted, but a little embarrassed too.

I ask Brenda what’s next for her career, where she goes from here:

“Well, I don’t know, really… would I like to be in a more senior role? I suppose so, maybe, but then strategy’s not really my forte, and I’d miss that day-to-day connection with people”.

The implication is clear: why climb the ladder when you’re already doing the thing you love? It rather sums up Brenda’s approach: quietly spectacular, unassuming, and absolutely focused on the older people she cares for. Seeing her in action is both humbling and inspiring, and brings home just how thoroughly deserved her award is: just don’t rely on her to tell you about it herself.

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