The past is not another country

Sarah ReedMaking conversation in a care home is hard work. The commonest opening gambit is probably, ‘What did you have for lunch?’ which is not a question to which the answer is going to be a) very interesting, unless Heston Blumenthal has popped in, or b) readily available to anyone with a cloudy memory, let alone dementia.

Sarah Reed spent 10 years visiting her mother in a care home, hearing visitors making similar, hopeless inquiries. She realized family members and residents needed help relating to each other in a disconcerting new setting and came up with Many Happy Returns, a series of A5 picture cards designed to inspire reminiscence.

The cards feature objects and events related to what Professor David Rubin has called the ‘reminiscence bump’ – a period in life, between the ages of five and around 25, when the most vivid images and persistent memories are laid down.

The first beautifully-produced set of 26 cards shows artefacts and activities from the 1940s – a sewing kit, a ration book, cleaning the front step, evacuation. On the back is a few lines of background, designed to give younger people a way into the subject, and  some conversational prompts: ‘Who cut and styled your hair? Whose hair did you admire?’

A set from the 1950s has followed, which seem richer, perhaps because life had got richer, perhaps because the pointers to discussion are a bit more tangential – so, for example, a box of Television Selection biscuits might prompt a conversation about how early TV sets were often covered with lace cloths, or about favourite programmes.

Long-term memory is more persistent than short-term; older people have been described as entering the vale of anecdote. The cards leave plenty of room for that but also offer the possibility of triggering different stories, of refreshing conversations and drawing families closer. There are benefits for younger people too, in hearing about social history from those who were there.

Sarah Reed is persuasive about the importance of reminiscence in maintaining identity in care homes, where it can so easily be eroded. She is adamant that no one should go into a care home without an autobiographical album of their life story, complete with first-person captions, to enable staff to link the individual back to the person they were before, to approach them as a whole person, not simply a ‘resident’. She runs workshops for care home staff in engaging with older people in ways that maintain their dignity and create real relationships – and also writes a very good blog here.

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Choirs go global

The Young At Heart choir from Almere

The Young At Heart choir from Almere

This week I attended an extraordinary international singalong in which two choirs of older people, one in Melbourne, the other in Amsterdam, sang to each other as if they were in the same room. I was in London, and I felt I was there (wherever ‘there’ was) too.

The event was made possible by video technology that has been designed for international business meetings. Sitting round a semicircular table, facing wraparound screens, we experienced the presence of the other participants as if they were on the other side of a round table.

The whole thing came about after a meeting between Kevin Johnson of Cisco and Pamela Bruder of the Emmy Monash Aged Care home in Melbourne. Pamela’s work demonstrates the role music can play in bridging generations and in enabling people with different levels of need for care to mix as equals. Cisco is nearing the end of a 6-month experiment in the town of Almere, in the Netherlands, to see whether video technology can extend the participation of older people. Using video conferencing and Flip cameras, people who wouldn’t be able to get across the city can, for example, now take an exercise class. Or indeed, join the Young At Heart Choir, which rehearses in two places at once.

Pamela Bruder, centre, with residents of Emmy Monash and helpers

Pamela Bruder, centre, with residents of Emmy Monash and helpers

The singers from Emmy Monash – one of whom lives in the high care unit, two in the dementia-specific wing, while two more are registered blind (you couldn’t tell who was which) – sang haunting Hebrew songs with some of the school students who rehearse with them. The Almere choir sang pop medleys, including The Twist because, in the words of their charismatic choirmaster, Gerard Poot,  ‘a lot of people here have new hips.’ Kevin and I also sang along, where we knew the words. He has rather a good voice. I don’t. Poot said he had been conducting for 30 years, and ‘I have never experienced anything like this. It’s really great, a once in a lifetime experience.’

The curious thing about the morning was that it was both mundane and exhilarating. At one level it was just a group of people singing together; at another, the accents kept reminding you that half of them were on the other side of the world. It did push the technology to its limits – ‘This is more people than I’ve ever seen in a TelePresence room’ Kevin acknowledged, and there may be a reason for that: the technology is set up for discussion rather than performance. But it was a powerful experience all the same, and everyone wanted to do it again.

‘One of our ladies who lives in the dementia wing, to my surprise, mentioned it the next day,’ Pamela reported afterwards. ‘She was describing it to one of our nurses, saying how beautiful it was, and how the people in Amsterdam seemed so close, she felt that she could reach out and touch them.’Young At Heart moving in rhythm

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

percussion

The Big Society is alive and well…in Kerala

Charles LeadbeaterDavid Cameron’s idea of the Big Society seems destined for a life as troubled as its long-lost older sibling the Third Way.

At its worst, the Big Society could be a flimsy fig leaf designed to cover up some of the worst consequences of deep cuts in public services. Charity, local volunteering, philanthropy, at least in affluent areas, may make up for some of the cuts that are bound to come in social care, welfare, arts and libraries.

It would be a pity, however, if the Big Society idea suffered that fate and was no more than a political device. Ageing is just one area where we need different solutions to social need, ones that build relationships and participation rather than simply delivering sub-standard public services to people. Increasingly we need to look at what people may want to do by themselves and with one another. We need solutions that cost less, but deliver better outcomes by doing things differently, as a recent report from the Innovation Unit and Nesta argues.

At its most ambitious, then, the Big Society programme could open the way for the creation of these solutions, which are often more distributed, less institutionalized, and rely less on professionals and more on able volunteers. It could mobilise resources from within the community as well as using public funds; it could build on people’s capabilities, rather than starting from the assumption that they are dependent.

To put it simply: rather than relying on institutional, professional systems, we need to rely more, for at least some of what we need, on social and voluntary systems. These must, however, provide far more than a patchwork of charities. They need to be national in coverage and provide a degree of reliability.

Already in the UK, Southwark Circle and the Circles movement started by Participle is just one example of this approach. However there are far more impressive international examples, especially in the field of ageing, which should set the standard for what the Big Society could achieve, and provide some lessons about how to do it.

One is Japan’s staggering campaign to create 1m “dementia supporters”: community volunteers capable of recognising the symptoms of dementia and helping families cope with the disease. The number of people with dementia in Japan is projected to reach 3.76m in 2035, up from about 1.7 in 2005. The Ministry of Health, Labour and Welfare launched a 10-year programme to promote better understanding of dementia, build community support networks, and provide more person-centred care. By 2008, a nationwide caravan had recruited and trained about 600,000 dementia supporters to be the frontline and first port of call for anyone with dementia. Japan has a highly cost effective health care system with universal coverage. Yet it threatens to be overwhelmed by the costs and complexity of advanced ageing and dementia. Thus the Japanese government has deliberately set out to create a stronger social system to deal with dementia, to reduce the burden on the formal, public health system.

Another comes from Canada where the non-profit Victorian Order of Nurses has launched a programme in which neighbours can train one another to provide respite care. Respite care is one of the most contentious and difficult issues for any family providing care. Often public sector respite facilities are difficult to get into and not what everyone wants. The idea of being able to provide respite by having someone cared for at home by neighbours makes a lot of sense. The VON programme provides a simple toolkit to create a community group in which people can train one another to provide mutual support and respite. When one family needs respite others are ready to step in to share the burden, distributing the tasks and making them more manageable.

The most impressive example of this approach, however, is the remarkable Neighbourhood Network for Palliative Care in Kerala. India’s recent economic growth has meant that many middle class Indians can now afford hospital care, including at the end of life.  It remains the case, though, that the vast majority of Indians still cannot; and those close to the end of life, often elderly, with chronic conditions and quite possibly illiterate, are the most likely to suffer.

A remarkable doctor, Suresh Kumar, founded the Institute of Palliative Medicine in the medical college in Calicut in Kerala in 1993 as a fairly traditional clinic with a community outreach programme. Initially, community involvement in the programme was limited, as were resources, which constrained the initiative’s reach.

The Neighbourhood Network Palliative Care emerged from the inadequacies of this traditional, medically-driven approach to end-of-life care. It is a sustainable, community-owned service offering comprehensive long term and palliative care to the bedridden, mainly based on linked cells of volunteer-led, autonomous initiatives, which now mobilise close on 10,000 trained volunteers.

People who can spare at least two hours a week to care for sick in their area are enrolled in a structured training programme of 16 hours interactive theory and four days of training under clinical supervision. Volunteers work in teams of 10-15 to identify need in their locality and to call in medical expertise when it is needed. Most of the funding for the programme comes from local donations, 90% of which are less than 15 cents. In other words, the NNPC network is funded almost entirely by voluntary donations from the very poor to create a mutual self help network to cope with long term conditions and death.

By late 2007, about five years after the NNPC was launched, it had 4,000 volunteers, 36 doctors and 60 nurses looking after about 5,000 patients. All the doctors and nurses are employed by the community organisations, which focus on providing care at home in a holistic way that combines the medical with the social and emotional.

In a little over a decade the NNPC has grown to cover almost all of the 12m people in Kerala, providing a highly flexible social network for long term and palliative care rather than relying entirely on costly hospitals and doctors. The backbone is a social system which calls in the doctors and nurses as they are needed. In the developed world, meanwhile, we generally try to do it the other way around: we try to socialise and personalise medical and institutional systems that are often impervious to change.

If the Big Society is more than a piece of political marketing, a sop to distract us from the prospects of reduced public services, then it will have to offer the kind of transformation the NNPC has brought about. If you want to see the Big Society, go to Kerala.

If you can breathe, you can sing

Headphones and heart graphicOne resident no longer speaks, but he still sings. Another’s memory loss and condition mean that he can no longer read. But he has been singing since he was a child and knows how to harmonise and sustain a note; he is one of the finest singers in the choir.

Both men are members of the Emmy Monash Community Choir, based at a care home for the elderly in Melbourne. Pamela Bruder, who started the choir and conducts it, is convinced that ‘singing can achieve quite miraculous things. Husbands and wives come in to visit their spouses and sing in the choir and it creates a sense of joy. There aren’t many other instances where you feel a sense of joy coming into a high-care unit.’

The Emmy Monash aged care home  (named after its founder, a community activist) is designed to allow people to ‘age in place’ as the Australians say: no matter what happens, you can stay. It offers its 90 residents (most of whom arrived in Australia after the war as concentration camp survivors from Eastern Europe) independent living apartments, a low-care area, high-care and a dementia wing. The choir draws members from all the areas of the home, as well as from local school students, friends and relatives.

There is increasing interest in the value of music therapy to people with dementia and Pamela Bruder, who is herself working on an anthropology PhD on the choir, is convinced of it. ‘Singing seems to be the last thing to go,’ she says. ‘The transformative power of music is physiological. A group of people in tune with music is in tune with each other. There are members of the choir who may not be able to put sentences together any more and who certainly wouldn’t initiate a conversation, but they can sing. And if they can still read, they can learn new songs, including in other languages. We sing in six languages.’

Pamela has been running the choir for a couple of years, having been brought in to Emmy Monash, rejoicing in the title of Life Enrichment Coordinator, to find ways to make living there a more nourishing and culturally rewarding experience while building links to the wider community. From the start, she was determined the choir would include the residents of the dementia wing and high-care area. ‘A lot of the low-care residents don’t want to confront high care, even though there may be people there who were their friends. They won’t go upstairs. So we bring people in wheelchairs down to the low care area, plus quite a few in what we call Princess Chairs – fully reclining bed-chairs. Some people, especially with dementia, need encouragement to come, and I make written invitations for them, which I deliver in the mornings. They like to be invited.’

About 30 people attend the choir each week, of whom 15 will be from the high care or dementia wings. They rehearse 10 to 15 songs and work towards concerts and festivals to which they invite friends and relatives, when the size of the choir doubles. In between the weekly sessions with a pianist, Pamela works on a one-to-one basis with individuals, accompanying on the guitar.

singing faceStudents from local schools also come in on a regular basis. ‘The choir is an icebreaker. Often kids will come in to a high care facility and they don’t know where to look: there’s someone with a paralysed limb, or repeating the same thing over and over. But singing is a neutraliser. You can’t tell what people are capable of by looking at them. We sit the students two between residents, and we often run out of songbooks, so people have to share. You can find a person from the high care area who’s had a stroke but is cognitively unimpaired helping someone from the low care area. It’s hugely important never to make assumptions about what people are capable of because they carry a label – “high care” or “short-term memory loss.”’

I heard about Pamela Bruder from Kevin Johnson of Cisco, who has become interested in how technology might extend the capacity and reach of the choir. Together, they have hatched a plan for a TelePresence singalong with a group of older people from Almere in the Netherlands, where Cisco is pioneering the use of video technology to allow older people to participate in a wide range of activities designed to promote wellbeing. They haven’t confirmed the date yet, but the cross-continent choir will sing together some time in October.

Emmy Monash Choir with visiting school students

Emmy Monash Choir with visiting school students

‘Entry to the Emmy Monash choir is not based on how well you sing,’ Pamela says; ‘it’s a question of whether you can breathe. But we achieve a really good sound quality, because people are so enthusiastic.’