Music making intense experiences for people with dementia

making musicOn a day when it has been reported that if Alzheimer’s were a company, it would be bigger than Wal-Mart, I’ve been to Wigmore Hall to look at a scheme that seems to be improving the lives of people with dementia and those who care for them. Music for Life is hardly on a scale to make a dent in the £388bn it’s estimated dementia will cost worldwide this year, but it does show how creative we may have to be in addressing what is being called the most significant health and social crisis of the century.

Music for Life involves three orchestral musicians taking their instruments into a care home every week for eight weeks, where they improvise with eight residents plus up to five staff. The group sits in a circle, allowing anyone to take the lead. Both the musicians and the care home staff report often being deeply affected by the work, while people with dementia often show changes of mood and ability to communicate. Their relationships with staff and each other can shift significantly.

People with dementia may experience depression or despair, intense anger, grief, anxiety, fear or boredom; they may be agitated or apathetic, frightened or bored, withdrawn or distressed. Many of those with whom Music for Life works have lost the ability to communicate verbally; to find another means of communication requires intense effort, sensitivity and responsiveness. There is increasing evidence that one way to do that, perhaps the best way, is through music. The musicians bring a variety of instruments: hand-held percussion, rain sticks and shakers of various kinds, plus some tuned instruments, such as bar chimes, all ‘selected to look beautiful and to make a lovely sound,’ says Kate Page, an oboist and the project manager. There are no rules. ‘You need 360 degree radar to see what’s coming out of the group and to improvise at the same time. The musicians try to keep the textures open so even the smallest voice can be heard, to pick up signals – body language or tiny cues of stillness or eye contact – and find a way to enhance and augment the communication. We’re looking for high engagement levels – really searching for that person on their own terms, not trying to impose on them, so that they know they are really being listened to and asked to contribute.’

Music for Life has been around since 1993, when it was founded by educationalist Linda Rose, drawing on work being done at the Guildhall School of Music and Drama with young people. Initially, the project was delivered exclusively in homes owned by Jewish Care, but has since expanded with Westminster NHS Trust and is about to start in Brighton. Management of the project was last year transferred to Wigmore Hall in partnership with Dementia UK, and there will be 10 projects this year, up from seven last year.

Sam* has dementia and was seen by the care staff in his residential home as aggressive and distrustful. He was liable to lash out, but staff couldn’t predict why or when, and that affected their behaviour towards him. ‘Music for Life gave the staff an opportunity to sit very quietly, being with him,’ Kate says. ‘It allowed them to explore other aspects of what being Sam might be like.’

There are challenges for all those involved: the musicians must strip away the ‘presence’ that characterises formal concert performance and have to learn to ‘sit on material for a while, to repress the urge to move forward, allowing people in the group time to understand it and find a way in. The sessions tend to have a really open, slow feel. We live in a very fast world and we have to remember that a lot of the people we’re working with are impaired and need time.’ In care homes where staff are often harassed and focused on getting through tasks, Music for Life offers a breathing space for thought and quiet assessment – not just in the hour when the music is being made, but the hour-long debrief that follows. ‘Care staff often don’t have a chance to reflect. This gives them an opportunity to think beyond the practical difficulties facing the people they care for, about their emotional wellbeing.’

Given the limited abilities of people with dementia to communicate, the work can be difficult to assess, although qualitative data from each project is evaluated and the overall programme reported on annually. This year Music for Life will be the subject of research by academics in the Netherlands.

Its aim is not to establish music in care homes, but to affect the emotions, practice and relationships of all three groups involved – musicians, carers and people with dementia. Kate Page believes that the musicians who participate – ‘it’s certainly not for everyone’ – are deeply affected by the relationships they form and what they learn about themselves and their playing. For care staff, ‘it is a chance to think in a less task-oriented, more experimental way.’ One carer has started greeting residents in her group by singing their names, cementing the bonds formed in the circle and finding a way to reach people differently.

Dementia is associated with loss. Music for Life focuses on what is still intact and can be reached, offering people with dementia something they almost never experience otherwise – the opportunity for teamwork and even to direct others, through conducting. ‘As sessions go on,’ Kate says, ‘you see that people look more and more across and around the circle, rather than just at the person next to them.’

The results have been persuasive enough to attract funding from the Arts Council, Barclays Capital, the Rayne Foundation, and a number of other trusts and individual donors. The programme requires intensive, highly personalised work by artists of high calibre, who are called on to lay bare all their sensitivity and responsiveness. Each eight-week project costs £6,500 to deliver, and Wigmore Hall is looking at different forms of collaborative funding to make it affordable for care homes.

With the number of people with dementia expected to double by 2030 and more than triple by 2050, Music for Life is unlikely to become a catch-all therapy. It may, though, offer some clues about ways to reach what is still intact in those with dementia, and to bring an injection of new energy into care, a way of relating. In settings where it is easy to feel ground down, Music for Life offers care home staff a chance to think and feel differently about what they’re doing. ‘The ends of projects can be very difficult,’ Kate says. ‘It’s hard to leave. You create deep relationships and bonds, because you have to go very deep to connect.’

*Sam’s name has been changed

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3 thoughts on “Music making intense experiences for people with dementia

  1. So interesting. If a tenth as much imagination was put into making end of life care as interesting as beginning of life care, it might not feel like such a miserable sentence. Of course the witnesses to end of life care don’t hang around to advocate…..

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  2. True enough, though a whole generation of us is going to witness our parents’ care and will have to get stroppy on their behalf. And of course our own. There isn’t anything like enough discussion still, let alone money and effort and will…

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  3. Good blog Geraldine. Music is therapeutic without doubt – psychologically and physically, with stacks of research to back it up, and real-life examples such as your item a month or two back on The Emmy Monash care centre in Australia.

    Scaling willing-but-scarce resources, such as Kate Page, will always be a challenge. I look forward to the types of video advances that are bringing new options for performance, auditions and practice (eg http://newsroom.cisco.com/dlls/2010/ts_092010b.html ) being even more accessible, so that Kate etc can be ‘in’ more rooms and reach even more people.

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