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.

Normal service resumes

Judi Dench and The QueenNormal service is about to resume – with apologies to anyone who noticed that Christmas has been quiet. In the meantime, here are some links:

First, a piece I wrote for the Daily Telegraph, pegged to the news that nearly a fifth of people in the UK will live to be 100.

Second, a New York Times op-ed article by Susan Jacoby, which touches on the longevity/morbidity debate: will longer lives be lived in good health, or will they mean longer periods of illness? Truth is, we don’t know. The latter is an alarming prospect, yet, especially since Shipman, very few doctors appear willing to debate publicly the limits to their obligations to keep people alive.

Third, an article from The Economist suggesting that happiness begins at the age of 46 – though if you’re Ukrainian, it appears you’ll have to wait until your mid-60s. A look at the burgeoning field of happiness indices, with a bit of speculation as to why happiness seems to grow, or at least return, as people age.

And last but not least, a report card on his generation by the Australian philosopher Peter Singer as the first baby boomers reach 65. This is a much broader take on the effects of the boomers than the usual economic analyses, taking in war, the environment and poverty. Personal, beautifully written, and optimistic.

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.

Of carers and careers

elephant in the room‘The most serious social policy issue in decades,’ is how the Centre for Social Justice (CSJ) describes the ageing population and, in particular, its need for social care. Yet there’s quite astonishing apathy when it comes to planning for what’s about to hit us – the 1.7 million more people who will need social care over the next 20 years and projected doubling of those with dementia in the next 30 years.

The CSJ, a think tank founded by Iain Duncan Smith, highlights this paradox in its Interim Review of Older Age, a 250-page assessment of the state we’re in. Recommendations will follow in a final report due out next year.

Why aren’t we better prepared? Is it that nobody wants to think about ageing? That we can’t imagine it will happen to us? Is it the fault of the financial services industry, for not coming up with insurance products? Should governments have worked harder to resolve the tangled relationship between healthcare (free) and social care (means tested)?

The fact is that the soaring demand will come at a time of spending cuts and falling numbers of unpaid carers. The Centre for Social Justice attributes the latter largely to family breakdown, which is certainly a factor although there is also a more general atomisation, a feeling that individuals’ duties are first to themselves and their careers. Old people and our kind of capitalism don’t go very well together, unless the old people happen to have done extremely well financially earlier in life.

In a recent poll for ippr, the Institute of Public Policy Research, 45% of those asked said they would prefer professionals to provide care while a majority felt they should not be compelled to pay for care of their relatives. Many people believe social care is, or should be, the responsibility of the state. Unfortunately for them, the state is much less convinced. (The government’s recent Vision For Social Care talks a great deal about individuals, community groups and the Big Society.)

The scale of the problem is terrifying, the lack of preparedness more terrifying still. And every single discussion about it concerns money. We might find it easier to think about the issues if we looked down the other end of the telescope, if we started by asking: What would good social care look like? How might it genuinely involve both the social, and caring? Then maybe people would find care less horrible and overwhelming to think about, and we could begin to have a sensible debate.

Purpose Prize winners 2010

Allan Barsema

Allan Barsema

A former homeless alcoholic and a housekeeper are among this year’s winners of The Purpose Prize, a $100,000 award for entrepreneurs over the age of 60.

The five winners, announced today, were selected by a panel of judges chaired by Sherry Lansing, former CEO of Paramount Pictures and the first woman to head a Hollywood studio.

Sherry Lansing

Sherry Lansing

Among them is Allan Barsema, whose alcoholism cost him his marriage, his home and his job, and who lived for a period from a trailer pulled behind his car. With help from his parents, he managed to stop drinking and to re-establish himself in work; and when, 10 years later, a homeless man barged into his construction company, he decided to set up a room for homeless people in his offices. At the end of that year, 2000, his work with the homeless had become so consuming that he devoted himself full-time to his centre, Carpenter’s Place. He settles 300 long-term homeless people in accommodation each year and has set up an innovative online system to coordinate services for the homeless, Community Collaboration, which has been adopted by 140 agencies in five states.

Margaret Gordon

Margaret Gordon

Margaret Gordon started reading environmental magazines in the house she cleaned and began to link pollution from the nearby container port to the one in five children aged between one and five in her home town of West Oakland who were being rushed to the emergency room  with asthma. Her analysis and campaigning has reduced diesel fumes and pollution from West Oakland’s port and she has been appointed by the Mayor to monitor toxic emissions.

Barry Childs

Barry Childs

Barry Childs is a former corporate executive who has set up a project to provide care and schooling for children, mainly orphaned by AIDS, in Tanzania, which has ended up helping whole communities.

Inez Killingsworth

Inez Killingsworth

Inez Killingsworth worked for the Cleveland Board of Education before she started fighting banks that had mis-sold mortgages and were turfing people out of their homes, demonstrating to them that they were wrecking whole neighbourhoods as well as individual lives. By fighting foreclosures, she has helped more than 10,000 families keep their homes. She has appeared in front of Congress and become a national spokesperson against shady mortgage practices, and a campaigner against the hefty penalties imposed by banks for missed mortgage payments.

Judith B Van Ginkel is a professor of paediatrics who, at the age of 60, created a home visits programme for first-time mothers at risk, half of whom were clinically depressed, and two-thirds of whom had witnessed violence or been victims of violence. Mothers in the programme are visited from the time when they first discover they are pregnant to when their children are aged three and can access help with health concerns, literacy, parenting and education.

Judith B Van Ginkel

Judith B Van Ginkel

So, five people with very different backgrounds, but a common desire to achieve something for others in the later part of their lives. You can see short films about all the $100,000 winners here; and there is more information, including about the five more $50,000 winners here. Oh, and please, Europe needs a Purpose Prize, too.

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.