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Dementia care and the power of music

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Photo: Stevecadman (flickr)

One of my friends sent me this video a couple of days ago and it really moved me. It reminded me of the joy that my grandad, who sadly passed away a few years ago after having alzheimers, got whenever my gran played him his favourite tune - Mozart's Clarinet Concerto (he loved a bit of Classic FM!).

No matter how far down the road my papa was with alzheimers, hearing that song always made his face light up. It's a pretty good reminder of the power of music. I wonder if The Smiths or Mogwai tunes will spark a similar reaction from me one day!


How read-aloud groups can benefit social workers & clients

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Books.jpgReading is often seen as a solitary activity, but social workers, clients with mental health conditions and children in care, are among those reaping the benefits of read-aloud groups that get staff and patients reading together.

The Reader Organisation, a charity and social enterprise, runs around 300 read-aloud groups across the country (find your nearest one here). Groups take place in a range of settings from drop-in groups held in libraries, to projects run in secure mental health units, day centres, prisons and care homes.

Mary Weston, mental health project manager at The Reader, explains that shared reading groups are more than simply book clubs. For most mental health projects, mental health trusts employ a full-time 'reader in residence' to lead each group and train staff so that they can takeover facilitating the groups in time.

'We team up with staff and train them up at the same time,' Mary says. 'A lot of the time we work with occupational therapists and psychotherapists. We have one or two social workers allied to the team and we have projects with social work departments where we work with looked after children.'

The groups bring patients together 'in quite a human way, rather than a patient-expert way,' Mary says. There is no pressure on anyone to read, and no weighty critiques or literary analysis expected. Instead the emphasis is on 'enjoying a text together' and allowing people to benefit from it in their own way.

'Everybody gets what they get out of it as an individual,' Mary says. 'But we do find different things tend to happen in different groups. In a secure setting, or groups where a lot of people have been diagnosed with a personality disorder, the good outcomes that we're seeing are people learning to take turns in discussions, learning how to share the floor for example.'

'Where people are depressed and anxious, it's often the friendship, meeting and getting together with other people to have meaningful discussions rather than just small talk. You're talking about a text so it's not personal - it means people can go as far as they want in terms of sharing their own experiences.'

Mary admits that building a group can take time and engaging staff with the groups is crucial to winning over patients - some of whom are sceptical at first. She is in the early stages of running a group in a rehab setting with people who have had enduring mental illnesses, and says that take-up is good after a difficult start. 

'On the first day people came in, would see my face, and run out of the room. And my face isn't great but it isn't that bad either!', she laughs.

'We do depend on staff having good relations with people as word of mouth helps and we do shamelessly use cake and things like that to entice people along! But once people come they often like it. I remember one person telling me: "'It's not what you think it would be like...It's good!"'

It is a situation familiar to Megg Hewlett, a project worker for The Reader Organisation who runs a series of read-aloud groups in London.

Megg says the growing interest in shared reading groups  is encouraging - she is in the process of setting up groups in two London prisons, while The Reader Organisation is about to host its third national conference. But Megg says she is most pleased with the feedback from group members, compiled in interviews she conducted with people that have attended weekly read-aloud groups in libraries in west London.

In one interview a man who, in his words, had 'several breakdowns, self harm, anxiety and depression', said the following:

'One of my goals in coming to the group was to 'reinvent' myself, to find an identity that I was comfortable with and to be defined by something other than being a mental health service user.  I wanted to consolidate and integrate a lot of things that I have been working on and developing in myself over many years. 

'Book Break has helped me do this.  The positive feedback I have received from other group members has helped my build self esteem.  I am starting to enjoy myself and even beginning to believe I, too, am an ok person.  People find me interesting and like my humour.  The group has helped me change the negative opinion of myself, an opinion I have had all my life.'


New BBC series explores autism & dementia care

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Picture: BBC

Tonight sees the start of a new two-part series from documentary maker Louis Theroux focusing on two issues familiar to many in the social work - autism and dementia.

In the first programme - airing at 9pm tonight on BBC Two - Theroux travels to New Jersey, USA, to visit what the programme makers have dubbed 'one of the most innovative autism schools of its kind?' There he meets a series of students at the school, and some of their families, to discuss how specialised intervention can support them.

Theroux isn't phased lightly. Previous documentaries have seen him accompany police around one of America's most crime-ridden cities, and visit post-apartheid South Africa to interview white supremacist Eugene Terre Blanche. So when he says that covering autism has been a 'baptism of fire', it highlights just how complex supporting children with the condition is.

Writing in The Telegraph, Theroux says:

'As an interviewer, what made my job more difficult was that many kids on the spectrum seem to lack interest in other people. Conversations weren't always easy, sometimes impossible. And yet over time, I found by making the effort to communicate, by drawing or singing or communicating through touch, I could make myself understood.'

'For me, making these films has been an adventure, a revelation, occasionally a strain, more often a pleasure. I'm as proud of these shows as I am of anything I've ever done.'

It's good to see autism and dementia (I should say that the dementia programme airs on the 26th April) getting some high profile coverage. Here's hoping the series will live up to its promise and shed some much-needed light on the challenges facing care professionals, carers, and service users in these areas.

All is not well with welfare, particularly the coalition's controversial work capability assessments (WCA) programme.

Last week Paul Farmer, chief executive of mental health charity Mind, resigned from the independent panel charged with scrutinising the WCA after coming to the conclusion that the Department for Work and Pensions was failing to suitably overhaul a system that is 'damaging people's lives'.

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One mental health expert I spoke to described Farmer's resignation as 'hugely significant'. Why? Well in short because Mind, and its chief executive, prefer a stance of critical engagement with Government on key policy issues, not tubthumping from the fringes.

Farmer himself says that Mind takes 'a collaborative approach where that is possible'. So why did he feel forced to quit the independent panel charged with scrutinising WCA - surely a key vehicle for influencing ministers?

'When we were invited to be involved with the panel it made sense. But the fundamental changes that are required for the WCA - well, they don't look like being implemented,' Farmer says. 'The pace of the change is also having a huge impact. We're having 11,000 people a week being assessed under this system, but when you look at the facts it is a process that clearly isn't working.'

'We have always been outspoken about the WCA but it felt to me that our contribution to making the necessary changes happen wasn't being listened to.'

Farmer points to statistics showing around 50% of appeals that are heard against WCA decisions are upheld. He says that one of Mind's local services in Oxfordshire has just completed an analysis of over 100 clients they have helped support with appeals. It showed that 90 per cent of the WCA decisions were overturned at appeal.

Meanwhile the DWP has, in Mind's view, been slow to implement the 'fundamental changes' needed to improve the WCA test, amid concerns that the indicators used are too blunt for the complexities of mental health. The DWP has long committed to a 'gold standard' review of the indicators but Farmer says, to his knowledge, the work has yet to start. More importantly, the people being subjected to tests are seeing little improvement.

'We are a year after the start of the reassessment of people on incapacity benefit, but people's experiences aren't really changing,' Farmer says. 'The scale of the change that we feel is needed, the DWP doesn't agree with us on it. We got to a point where it wasn't right for me to stay on the panel as there is such a strong difference of view.'

While Farmer's move to quit the panel was met with support from fellow mental health campaigners and a swathe of supportive comments on his blog, ministers were less impressed. The circumstances of his resignation were muddied when Chris Grayling, the employment minister, told the BBC that Mind had begun legal proceedings against the DWP to try to stop the testing process. It is a claim Farmer is quick to deny.

'We do know that there is a growing sense of injustice about the WCA. We are aware that there are some individuals taking action. But we are not taking any action against the DWP,' he says.

Instead Mind will plot the next steps in its campaign to get the WCA improved. Farmer, for one, believes that the DWP should halt the process until fundamental changes are made. Do you agree? Join the debate on CareSpace.

 Photo courtersy of Mind Flickr.



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To mark this year's Carers Week, Community Care is running an online "carers wall" - a compilation of your comments and suggestions on what would make life better for carers.

We're looking for small, achievable things if possible and you can email us your suggestions, or post them on twitter with the hashtag #carerswall. Please try to keep them to one sentence. We'll select our favourites and publish them throughout next week on our special carers wall page.

At the end of the week, we'll pull together all the comments and send them off to the government.

(Pic: Ali Burçin Titizel / Gti861 

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Mad World highlights the latest research, policy and debate about all things mental health along with some social work stuff and the odd piece of random nonsense, just to keep you on your toes.

It is written by community editor Andy McNicoll.

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