What do care home residents really want?

Thomas Hammer Jakobsen

Thomas Hammer Jakobsen: finding ways to improve quality of life in care homes

In this era of growing numbers of old people and little money, care home providers will always be aiming to supply their services more efficiently and cheaply.

For the people on the receiving end, on the other hand, all that matters is quality of life. But in this relationship, they are definitely the vulnerable party  – less organised, more diverse and facing far more difficulty in being heard.

I recently met Thomas Hammer Jakobsen of Copenhagen Living Lab, who is running a project in Denmark’s largest nursing home, Sølund, to identify how the experience of living in a care home could be improved. Copenhagen Living Lab’s ethnographic research, which involved joining residents for two months, uncovered a number of areas offering scope for change. Some of these were fundamental – residents wanted to be helped to hang on their ‘outside’ identity, for example, by strengthening their links to the past and being helped to conserve and celebrate their memories; they also wanted death treated as a normal part of life. And some wanted more specific things, such as an easy way for someone who is wheelchair-bound to close doors and windows.

Eight companies have now been brought in and are currently trying out solutions, some high-tech, some not (for example, counselling people before they come in to the home, to make the transition less abrupt and de-naturing). The first assessments of these will be made in a couple of months.

User-centred design based on ethnographic research has been highly fashionable among those trying to improve public services for some years now; but lately, some of the foremost thinkers in the field have warned against over-enthusiasm for all the collaborative innovation and co-creation (choose your buzzword). Simon Roberts, himself an anthropologist, points out in an excellent blog that user-centred design is not automatically a panacea. If you want a clever, nuanced explanation of the arguments you should read both his blog and another by Geoff Mulgan to which he links.

My rather slapdash journalistic sense of what they’re saying is that:

  • Designers can get too caught up in the research phase, so that identifying problems, rather than solving them, seems like the key task.
  • Doing the ethnography doesn’t guarantee that users will actually be involved in designing solutions.
  • ‘Users’ are actually individuals. They’re not homogeneous and improving quality of life is complex and not always susceptible to systems, let alone a piece of technology.
  • Designers like to start from the premise that radical reorganisation is the only solution, but that may not necessarily be the case.

I’m looking forward to seeing what solutions emerge from Sølund. Thomas Hammer Jakobsen is persuasive and passionate, and he and his collaborators have introduced some quite simple things to do with keeping people warm, for example, as well as more ambitious ideas such as a way of giving dementia patients freedom to move around and explore their environment while ensuring they don’t wander off.

The arguments about user-centred design are likely to rumble on. It’s understandable that people are getting a bit weary of hearing about co-creation every time any change in services is mooted, but its central insights remain persuasive: of course users should be the starting point. And the best new products and services tend to arise out of and necessitate a new way of thinking about relationships.

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.

Older people want to shop shock

shopping trolleyIt is a paradox that older people make up a large and growing number of consumers – presenting a tremendous opportunity – yet they are almost entirely ignored by marketing executives. Over-50s need and want to buy stuff like anyone else, but some 90% of marketing spend is directed at younger people.

A report out today from the International Longevity Centre (ILC), published by Age UK, attempts to tease out some of the reasons behind this. These turn out to be a complex nexus of ignorance, prejudice, myopia (metaphorical as well as literal) and ineptitude. What’s more, according to the report’s author David Sinclair, many of the market barriers he has identified are exactly the same as those that were first noted 50 years ago. We may be a maturing population but our marketing techniques are going nowhere.

The Golden Economy is compiled from existing literature and new research and is full of ideas. The causes of market failure being so complex, unfortunately the report can offer no single explanation of what’s gone wrong or how to put it right. One of its clearest messages is that significant numbers of older people are spending less than their incomes would appear to allow: it’s not simply lack of money holding back spending.

The true barriers are best understood from anecdotal evidence: the housebound man who would like to buy by mail order but can’t get to the Post Office to return goods; the blind woman who would like to buy stylish clothes, but has no one to tell her how they look when she tries them on. In many European cities, over-50s are one of the main groups eating out, yet restaurant menus are printed in such a way that it is virtually impossible for anyone over 50 to read them without glasses.

Often these obstacles are the result of a simple lack of thought, of designers and marketers failing to put themselves in the shoes of their consumers. At the root of that lies ageism – a reluctance to think about getting older, presumably in the hope that, if ignored, it might simply go away. A vicious circle sets in: advertisers don’t pay attention to the older market, so the media don’t see any need to cover or address older people, so older people feel they don’t matter and have no right to assert themselves. Too often, they blame their own shortcomings for the lack of services (‘What else can I expect at my age?’)

There are dismayingly few examples of good practice, although David Sinclair cited an interesting case at the launch event for the report. Some time ago, Google doubled the size of its entry box without explanation. The only clue to what was going on came from a small blog by a designer, who revealed the move was meant to make the search engine more accessible. Good inclusive design, as has been noted again and again, is almost unnoticeable because it benefits everyone.

Girls shopping

This is how you have to look when you go shopping

There is a real problem in marketing to older consumers, in that no one wants to think of themselves as old, or even ‘older’. So you have to take age out of the equation while thinking of what works for people who for any number of reasons are not standard, or fully fit. But in a profoundly ageist society, that’s a big ask. Think of shopping, and what do you visualise? I’d be surprised if it’s not twentysomething girls with carrier bags: shopping is presented as an exclusively youthful pleasure.

Yet older people need to eat and care for their homes and wear clothes and have a good time as much as anyone else. This report is a useful reminder of that, while also painting a rather daunting picture of how far we have to go to give everyone fair and easy access to the goods they need.

ILC report

Design for living

lightPeople of 80 or 90 plus who are eking out their lives in nursing homes with very poor quality of life are, according to New York geriatrician Mark Lachs, an indictment of society’s priorities. ‘I would argue,’ he writes, ‘that the “life extension” these people have experienced – a good deal of it the result of technology – is as big a failure of medicine as any 40 year-old dying of breast cancer or 50 year-old perishing of a heart attack.’

Dr Lachs is the author of Treat Me Not My Age which, despite its title, isn’t mainly a book about ageism in medicine, but about how to avoid becoming one of those people with half-lives, detached from the world, fading away even while being kept alive by the ‘miracle’ of modern science. Some of Lachs’ prescriptions are familiar – he emphasizes the crucial role exercise plays in delaying immobility – but he also draws on fascinating work being done at Cornell University’s Weill Medical College, where he is professor of medicine, on the ways in which design can allow people to remain at home and connected to the world.

Architects typically base their designs on the body measurements and movements of people aged between 20 and 50 with no visual impairments. In an ageing population, this is a serious problem for housing, not to say discriminatory. Sometimes the modifications that would, for example, prevent falls – using contrasting colours for seating and carpets, or ensuring that there is good lighting in hallways, especially between bedroom and bathroom – are inexpensive and, once you have been alerted to them, glaringly simple.

Mark Lachs’ book led me to the Environmental Geriatrics website of his department at Cornell and to its offshoot This Caring Home, both of which are full of tips for intelligent design for homes. It’s worth looking at the multimedia course, which is aimed at medical students but is fascinating for anyone, to see what it’s like to go downstairs with perfect vision, then again with glaucoma or macular degeneration.

A good reason to get older

Picasso's Mousquetaire a la pipe

Mousquetaire a la pipe, oil on canvas, by Pablo Picasso, painted when he was a week shy of his 87th birthday

There was a fascinating story in the LA Times recently about an artists’ community which convinced me that I now know how I want to live as I get older.

Burbank Senior Artists’ Colony is a five-storey building in Los Angeles, offering one-bedroom apartments for rent to people aged over 55. The building also houses a digital film editing lab, galleries, an outdoor performance area, and art and sculpture studios.

Retired dental surgeon Gene Schklair, 80, sells the sculptures he makes at the Colony for up to $18,000 each. Suzanne Knode, another resident, took her first screenwriting course there in her early 60s. Her film about an elderly woman who robs a convenience store while balancing on her walker was cast and made by fellow residents. It has since made it onto the film festival circuit.

America has already seen a trend for senior housing communities on college campuses, offering residents and students the benefits of intergenerational contact and, increasingly, learning programmes for residents to study something new or take a further degree – as, for example, at Lasell Village.

Developments of this kind have been encouraged by a growing understanding of the benefits to health and happiness of learning new skills as you age (although this can make learning sound a bit like eating bran, good for you but not very pleasant). Art, too, requires study, to develop technique; it also offers a way to scrutinise and understand the world and a mode of self-expression; it is ageless, in all senses of the word.

In this country, there is a growing interest in art produced by older people, not just as therapy, but as mind-expanding pleasure for artists and audience. The idea that you could be creative at all hours of the day and night makes ageing something actively to aspire to. In California, two more Colony communities are in development. Let’s hope some enterprising developer sets up something similar in Britain soon.

The comfort of strangers

Neil Bell and Gillian Chardet

Neil Bell and Gillian Chardet

Gillian had a house; Neil needed somewhere to live. Gillian was worried about being alone and the responsibility of keeping things working; Neil was largely retired, and could fix leaking taps.

Gillian is 88, Neil 61, and they found each other through Homeshare, one of several local authority experiments to see whether people with space to spare might benefit from having someone living with them, not as a paying lodger but as a helping one. Today the pair of them share Gillian’s beautiful red-brick converted barn in a West Sussex village, with its beamed sitting room and fruit trees in the garden. No money changes hands, but Neil drives Gillian to doctor’s appointments and the supermarket and provides practical help around the house. He is a reassuring and useful presence, both physically and psychologically.

‘We both put our names forward for Homeshare and, after vetting, it was decided we might be a good match,’ Gillian says. ‘We met first in a neutral place, at the house of old friends of mine, then we had a couple of meals out. We haven’t got a terrific lot of things in common, but perhaps that’s why we get on. I think I get more out of it than Neil does. I’m very difficult to share a kitchen with, but Neil’s fitted in with my funny arrangements. I know I couldn’t possibly live with at least half of my friends. It’s all down to him that we get on.’

It can be hard enough living with people you know well, even those you love. Homes are filled with emotion and vulnerability and assertions of identity. But this arrangement evidently works, perhaps because Neil travels light. Gillian’s home remains filled with her stuff; he has his own room, including a toilet and washbasin.

‘I think if I had to share Gillian’s bathroom – to move in my shaving stuff and toothbrush – that might be difficult,’ he says. ‘I get up first and make porridge but other than that we don’t eat the same food. I’m coeliac and have to eat funny food and I wouldn’t inflict that on anyone.’ They do, however, usually sit down to eat together.

Neil is a former builder, traveller and shiatsu practitioner. He meditates for an hour each morning; perhaps his spirituality helps him keep the distance that Gillian needs to go on being herself in her own home.

Homeshare looks in theory like an excellent solution to two dovetailing problems: older or disabled people who don’t want to live alone, and others, probably younger, without much money or anywhere to live, who are willing to offer practical help in exchange for a roof over their heads. Similar schemes operate in Australia, Canada, France, Germany, Austria, the Netherlands, New Zealand, Spain and the USA. The attractions of cross-border homesharing for young travellers or students are obvious and, internationally, Homeshare is much more popular than it is here.

The three local authorities that have experimented with homesharing in Britain have found, however, that marketing and running the schemes is expensive. Applicants must be interviewed and vetted and undergo police checks; they must meet each other and negotiate their likes and dislikes and be monitored fairly intensively for the first month and occasionally thereafter. West Sussex, which brought Gillian and Neil together, was funding a worker to manage the scheme but is now outsourcing the coordination of those homeshares for which it remains responsible and not pursuing any more.

Keith Hipwood is Gillian and Neil’s Homeshare coordinator, his work partly paid for by West Sussex, and partly by NAAPS, the charity that supports small, community based care schemes.  ‘When Homeshare works, it works brilliantly,’ Keith says. ‘But when I took over the West Sussex scheme they had only four matches, following three years’ work. There was a waiting list of 40 people, but West Sussex is a big county and the householders were in the wrong place or not the right matches. Homeshare tends not to become a priority for social services because the process is too lengthy to stop someone going into a home after a crisis; it’s difficult to demonstrate its usefulness in that sense.’

Keith’s view is that Homeshare works best in a clearly defined locality or in dense urban settings. It is perhaps no coincidence that of the three local authorities that have experimented with it – West Sussex, Wiltshire and Oxford – the latter has had most success: it is the most urban, a place where property is expensive, and has a large student population.

Some privately-run Homeshare schemes exist, and perhaps they offer a more promising business model. They usually require a monthly payment from both householder and homesharer; if the schemes can generate enough volume, a coordinator’s salary becomes viable. In London and other urban centres, homesharing has been particularly attractive to foreign nationals, who are happy to undertake work around the house in exchange for somewhere to stay, perhaps even in a rather expensive part of town. NAAPS’ immediate ambition, having recently over the coordination of Homeshare in Britain, is to network the various fragmented London schemes and demonstrate that in the right setting, marketed less as a solution for social services than as an affordable housing choice, it can really work.

Neil and Gillian have been together for two years, long for a homeshare. (Many are fixed-term contracts of six months or a year.) Gillian hopes their arrangement will last forever, but they both recognise that if she develops personal care needs, that will be the end of it, because that’s not what homesharing is about. ‘He didn’t come here to look after me,’ Gillian says, ‘and anyway I’d be absolutely hopeless at being looked after by anybody.’

Being a homesharer does impose constraints on Neil – he tends not to stay out with his partner overnight, and she doesn’t stay in his room because he feels that would unbalance the household. ‘I’ve had friends over to supper and once or twice someone has stayed over, but I don’t treat the house exactly as I would if it were my own,’ Neil says. ‘I became a bit of a nomad after I stopped working, and I suppose that has made me quite flexible.’

‘I don’t mind if Neil has people here,’ Gillian says. ‘I can talk to most people, and his friends always seem very compatible. He’s got his interests and beliefs and I like hearing about them. It’s been marvellous. He’s got his life outside and he comes and goes, but I’m always happier when he’s here.’

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