Mind the dementia care gap: what happens after diagnosis?

Friendship, fish and chips, and fitness sessions: welcome to the Forget Me Not Café, where two dozen people affected by dementia and memory loss meet every Tuesday afternoon.

When I arrive at a session in late August, most of the group is already seated in the main hall – half an hour early for the official start time – chatting away with cups of tea.

I’m welcomed by Forget Me Not CEO Madhumita Bose, affectionately dubbed ‘Madds’ by the group, as she puts finishing touches on the afternoon’s arrangements. Madds left her career as an artist and art lecturer nearly 15 years ago to focus on community support work. 

‘I absolutely feel honoured to serve these people,’ she says. ‘There’s so much need in London, and across the country. People need somewhere to go, socialise, feel free and feel safe.’

Groups like Forget Me Not are vital lifelines to people at a crucial point on their dementia journey: post-diagnosis but not requiring full-time care.

Insiders from across the health industry told us the NHS and social care system’s support for people at this stage is not fit for purpose. 

And yet, despite the widely held stigma around what it means to have dementia, with the right support it is possible to live a fulfilling life once you’ve been diagnosed. 

It’s a different life, and it’s not one someone would choose. But as one person who has dementia told me, ‘There’s still so much life to be lived.’

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Life after dementia diagnosis

One in three people born in the UK today will develop dementia in their lifetime, according to the Alzheimer’s Society.

Nearly one million people in the UK have dementia currently, and that number is growing as our population ages. 

Wendy Mitchell (pictured above) is a bestselling author of three non-fiction books about her experience with dementia. 

She was diagnosed aged 58, in 2014, with early onset dementia. At the start, understandably, she wasn’t feeling too positive. 

‘The diagnosis process is such a negative process,’ she tells me over Zoom from her Yorkshire home. ‘It concentrates on what you can’t do. So it’s not surprising most people come out of that feeling as though it’s the end.’

It was only after she saw a talk by Agnes Houston – herself a writer with dementia – that she realised her life wasn’t over. ‘She’d been diagnosed six years before me, and there she was on stage, talking. That just blew my mind. She gave me the first hope.’

Wendy now sees her dementia diagnosis differently: ‘You should think of a diagnosis as the start of a different life, not the end of a life. 

‘The important thing to remember is that dementia is progressive. It doesn’t happen all at once.’

Since her diagnosis, Wendy has published three books, taken up wildlife photography, and undertaken several of what she calls ‘wacky adventures’ to raise money for charity. She’s done everything from high-wire walking to paragliding to walking on fire. 

‘When people hear the word dementia they immediately skip to the end stages and forget that there’s a beginning, and a middle, and so much life to be lived. Albeit differently and maybe with support.’

But what kind of support is out there? Experts we spoke to say it isn’t enough. 

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Post diagnosis care 'nowhere near good enough'

You might be surprised to hear that once you’re diagnosed with dementia, the NHS pretty much leaves you to it. You might get a few leaflets and some medication, but while there's advice about making adjustments and getting help, there’s no clear pathway of care like there is with, say, cancer. 

This is partly because there isn’t yet an effective treatment. So historically, there’s not really much the NHS can do post-diagnosis. 

That leaves social care – a system which has been notoriously underfunded for some time. 

‘The current social care system is not set up to deliver the high-quality, affordable, and personalised care people living with dementia want, need, and deserve,’ says James White, the Alzheimer’s Society’s Head of National Influencing.

At the moment, to qualify for social care support for dementia, your local authority will assess your needs to decide if you’re eligible for funding.

‘The threshold for receiving formal support is really quite high,’ says Simon Bottery, a senior fellow at the King’s Fund who specialises in social care. ‘And over the past few years, that threshold has been nudging upwards because local authorities don’t have the money they need.’

If you meet this threshold, you then need to have less than £23,250 in savings to qualify for free or subsidised care.

‘I often talk about the fact that you’ve got to be a pole vaulter to get over the barrier in terms of needs, and you’ve got to be a limbo dancer to get under the assets barrier,’ says Bottery. 

If you don’t meet these criteria, social care can be hugely expensive, with the Alzheimer’s Society estimating it costs up to £100,000 in a lifetime.

Dementia care often falls to families, charities and individuals

For now, then, dementia support is often left up to families, community groups, charities and individuals themselves. 

When someone’s diagnosed with dementia, it’s become sort of accepted that their loved ones will provide care, especially in the early days where they don't need full-time care.

Not everyone has family or a partner available or able to take on this role. And as dementia advances, caring responsibilities are increasingly challenging, and the financial support is meagre.

You qualify for carer’s allowance if you’re providing care for over 35 hours a week, and the person you're caring for receives benefits. But at £76.75 a week, which adds up to less than £4,000 a year, it’s nowhere near enough to replace a job you might need to quit to make time. 

Living independently with dementia

Wendy Mitchell is a big advocate of living independently where possible as a way to stop your mind deteriorating. 

Visit her home and you’ll find blue-paint outlines around her light switches and bright yellow tape on her stairs, both to help her notice them. You’ll also find pictures of a cupboard’s contents on the outside, and frequent reminders from her ‘new best friend’ Alexa – the Amazon Echo chatbot. 

‘For loved ones, I’d say don’t wrap us in cotton wool,’ she tells me.

‘At the beginning, my daughters used to help me on with my coat. But I began to realise that when they weren't there I was beginning to struggle to put on my own coat. 

‘So I said to them, if you continue to put on my coat, you're going to have to come to my house every single time I want to go out. Because I'll forget. 

‘If you do things for us, we'll just forget how to do them, and then you'll have to continue to do them.’

Of course, some cases of dementia – particularly in the advanced stages – are too severe to allow independent living. But Wendy suggests giving it a shot while you can. 

According to the Social Care Institute for Excellence, 61% of over 65s with dementia live in their own homes in the community, throwing into question the widely held expectation that a dementia diagnosis sentences you immediately to a care home. 

‘I live alone, so don’t assume somebody can’t live alone with dementia,’ says Wendy. 

I ask if she’s the exception, but she disagrees. ‘There are hundreds of people like me,’ she says. 

Indeed, I met many of these people when I visited the Forget Me Not Café with Madds. Groups like this meet up and down the country - you can look up events near you using the Alzheimer’s Society local support finder tool.

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'When people come, we show them a good time'

Madds has run Forget Me Not Café sessions since 2016, in the Golden Lane Community Centre near the Barbican. She also runs an art class for people with dementia in the Barbican Library, and other community support events across London and nearby counties.

Membership of the group (which is free) isn’t just about attending these weekly gatherings. Since most attendees live locally, the friendships they make with each other continue day-to-day. 

That said, the meetings are the main event. On my August visit, after enjoying my coffee and custard creams, I settle down with the rest of the group to watch and listen to an electric harp performance by Caroline – a young freelance harpist. 

Caroline’s performance consists of classically infused arrangements of popular tunes such as ‘Scarborough Fair’, ‘Eleanor Rigby’ and ‘Isn’t She Lovely’. Whispers of recognition ripple through the crowd at the start of each song. When she starts playing a Satie piece, someone gasps. 

Caroline later describes playing to this audience as ‘intimate’. Since music can access dormant memories, she feels as if she’s ‘reaching into their minds.’

After the mid-afternoon meal, I speak to several fellow attendees. Naomi praises Madds and, noting that I’m from Which?, says she’d give the group a five-star review. ‘I look forward to coming every week,’ she says. 

There's other support too, if you know where to look. 

At the end of August, I went to the monthly dementia-friendly screening at the Picturehouse Cinema in Stratford. The films they show are always familiar favourites - this time it was 1978’s Superman.

The films are quieter than other screenings, and the house lights stay partly lit throughout. Talking during the movie is permitted, and there's an interval in the middle to give people a break. Tickets are discounted. 

In summer, when I went, it was sparsely populated, but the manager told me bus-loads of people turn up in the winter.

The dementia care gap

Community support initiatives such as these are fantastic, but it's a big ask to fill the gap in care and support all those who need it.

Multiple experts I spoke to suggested a new social care funding system based on ‘risk pooling’. Since one in three of us will get dementia, it isn’t a stretch to suggest we should all contribute to a fund we can draw on if necessary, they say.

‘It's vital that the government recognises dementia as the biggest health and care challenge of our time,’ says James White. ‘Right now, we know dementia isn’t the priority it needs to be politically.

‘Alzheimer’s Society is calling on the government to provide a social care workforce strategy that delivers dementia-specific training to ensure staff have the skills to provide the kind of care people living with dementia have told us they want to receive.   

‘Alongside this, support for unpaid carers must improve, through assessments and access to appropriate breaks.’

'Tomorrow might be better'

Wendy Mitchell’s ultimate advice for people with dementia is, in part, relevant to everyone. It certainly makes me think twice once I've closed my laptop for the day.

‘I'm a glass half full person,’ says Wendy. ‘I always have been.'

‘We're all guilty when we're working of wishing for the weekend, wishing for the next holiday, wishing for tomorrow. 

‘What dementia has taught me is the only guarantee we have in this life is this very moment. So enjoy this moment. Just stop your busy lives just for a few seconds a day and look around you and you'll see amazing things. Just a bird singing in a tree.

‘I tell people with dementia: don't expect to be able to do the things you did when you were rushing about being a busy working person.'

‘Dementia slows you down. But the beauty of that is you see so much more. You appreciate time. And if today is a bad day, tomorrow might be better.’