Tag Archives: older people

Seeing dementia through a different lens

Ashwani and Didi laughing, from Love, Loss and Laughter by Cathy Greenblat
Ashwani and Didi laughing, from Love, Loss and Laughter by Cathy Greenblat

I was entranced by some of Cathy Greenblat’s photographs of people with Alzheimer’s, which I came across when researching a recent piece about dementia.

Dementia is a major global challenge – health experts describe it as the next global pandemic. One in three of us will develop it – 135 million people by 2050, according to Alzheimer’s Disease International (ADI), and its annual worldwide health and social-care cost is around £400bn.

Yet Greenblat’s work goes behind the headlines to present the human aspect of the disease.

The images in the book Love, Loss and Laughter present a rare view of the illness, shattering the stereotypical image of people as personality-free empty shells, discarded and forgotten by society.

Marie-Therese at a party (photo: Cathy Greenblat)
Marie-Therese at a party (photo: Cathy Greenblat)

Greenblat’s thought-provoking project to document the lives of people with Alzheimer’s is endorsed by ADI and has taken her all over the world for over a decade (it was published in 2011).

An academic and photographer whose grandparents and mother all developed Alzheimer’s, the sociologist’s work combines a large scale vision and research expertise with a very personal focus on human relationships and societal attitudes. Many of her photographs reveal the characters behind the disease, presenting people with Alzheimer’s in a social or familial context and among friends and carers.

The hundred or so photographs taken in care homes, private houses, clinics and day centres all over the world show how it is possible for people with dementia and their families and carers to experience some joy as they lose their cognitive functions (the “love” and “laughter” in the “loss”). The images show how people can maintain both independence and quality of life.

It is worth pointing out, however, the images do not shirk from touching on the frustration, anxiety and isolation – particularly at the end of life – which Alzheimer’s brings.

As Greenblat, Professor Emerita of Sociology at Rutgers University, writes in the book, “people with dementia retain vital capacities”. She reinforces the notion that our attitudes to dementia must change if the experience of those with the illness is to improve; her book quotes Michael Verde, president of American dementia organisation Memory Bridge, who says People with dementia don’t disappear unless we disappear from them”. It is possible, as Verde has said, “to change what is referred to as ‘the long goodbye’ into ‘a long hello’”.

The photographer tells me that people are often surprised to hear that the subjects of her pictures have the disease, she says: “I’m often struck by the responses of viewers of my photos at exhibits who ask with some astonishment, ‘But does this person really have Alzheimer’s?” They have only seen images that show people who are sad, dispirited, disconnected, and it takes them time to accept that that is not the necessary condition.

“People who are treated as hopeless lose hope; people who are treated as being unable to do things lose confidence. We don’t treat a sense of hopelessness or lack of confidence with medication: we do it by helping them to feel needed, cared about, being stimulated, communicating differently with them.”

Greenblat will be in Australia in late February to photograph more care settings and explore how to create “joy filled residential communities for people with dementia”. She hope this will result in a multimedia project with interviews, photographs and videos. Some more of her work is included in the gallery below:

• I asked Cathy a few more questions about her work, here’s what she said:

“Perceptions of Alzheimer’s are changing in the time since I’ve been photographing.One of the big changes is that there is so much more talk about Alzheimer’s, in the press, in books of all sorts, on the internet in the form of webinars and connections that are global.

Of importance is the greater participation in the dialogue by people living with dementia – people with diagnoses and people who are their care partners. This is no longer just the medical community telling us about what they know, but sharing of experience…Not everyone is listening to these new voices, but those who do have learned that there are ways to continue a quality life for much longer than has generally been believed.

How has my academic background helped me in my work? Probably the most important thing is that I came to this work with a knowledge of doing research… I knew how to go into new situations and places and learn from people about their lives. Now I was adding a camera to my “tool kit”, as I believe that seeing is so important in changing one’s mind… I speak in an early chapter in the book about ‘Changing people’s minds about people’s changing brains’ – that’s what I have been doing. And I think that is crucial.

I thoroughly believe that we need to distinguish between the physiological changes as we become ill, and the primary symptoms brought about by that. But there are many secondary symptoms such as apathy, aggression, social isolation, that are not caused by the disease but by the way people are treated and come to see themselves .

People who are treated as hopeless lose hope; people who are treated as being unable to do things lose confidence. We don’t treat a sense of hopelessness or lack of confidence with medication: we do it by helping them to feel needed, cared about, being stimulated, communicating differently with them… It is what the photos illustrate. This is not a new perspective… it has been discussed by scholars around the world, but the addition of visual evidence in photos that clearly are not posed has given them wider acceptance.

Many people “run away” from dementia. Surely some people run away from family members or friends who begin acting strangely and are difficult to deal with because they are don’t want to deal with the problem. We all know of siblings who fight about the care to be given to a parent, leaving the responsibility on someone else’s shoulders. They say they are too busy, they had poorer relations before, they have other responsibilities..

But many people are not selfish and ill informed – rather, they are frightened, they don’t know what to do they don’t know what they can do, they believe that there is nothing that can be done until a cure is found. That is simply not true. There is so much we know how to do now to engage people in continuing stimulating activities. There is so much to be gained through creating partnerships with professionals and other groups that provide day care activities, memory centers, art and music therapy, etc.

We need to help people know that there is a great deal to do and inspire them to find resources near their homes or on the internet. Many friends and family want to be engaged and helpful but they don’t know how to do that. There are excellent books, pamphlets from the Alzheimer’s associations and other groups. This can not only help the person who is ill, but it makes the friends and family feel more empowered… They can learn what to say and how to act in ways that let the person feel they are understood, which in turn reduces the aggression which so often is the result of feeling they can’t clearly express their needs and desires.”

• You can watch some films on Love, Loss and Laughter here and here or visit the website to find out more about upcoming events related to the book and photography project. You can also follow Cathy on Twitter @CathyGreenblat

We need to prepare for the next global pandemic

It is a disease one in three of us will develop – 135 million people will have it by 2050 and its worldwide health and social-care cost in 2010 was estimated at £400bn…yet no one is ready for the worldwide pandemic that is dementia.

My Guardian interview with leading microbiologist Peter Piot today, coinciding with the G8 Summit on dementia, underlines why international action is vital. Piot, who spent four decades investigating the world’s deadliest diseases and whose pioneering work made HIV/Aids a global priority, is in no doubt that dementia is now the world’s greatest social, economic and moral challenge.

“There’s not enough awareness of how bad the problem is,” warns Piot, a global health expert and director of the London School of Hygiene and Tropical Medicine. Like most of us who know someone who has had or is living with dementia (my grandfather had it), Piot’s father-in-law had the illness, so he knows first hand of the denial and stigma it brings: “It is the most neglected of all the neglected health problems and it’s a hidden problem because people are at home – they’re already written off by society”.You can read the rest of my piece is here.

When Piot argues that the discrimination faced by people with dementia is tantamount to a “human rights violation” and more than just a medical problem, I couldn’t agree more.

Funding and focus on research is essential, but this has to be accompanied by a change in attitudes – and the latter will be an uphill struggle for a society fails to have older people on its radar, regardless of whether or not they have dementia.

Older people power: society and product design need to wise up

Gordon Morris, Age UK Enterprises
Gordon Morris, Age UK Enterprises

Society often fails to realise that people aged 65 and over currently represent a sixth of the UK population responsible for £120 billion worth of spending power a year – over 18% of total spending in the UK. And the number of people aged 65 and over is projected to rise by nearly 50% in the next 20 years to over 16 million (figures from the Office for National Statistics).

As Britain adapts to an ageing population, the marketplace for assisted living aids and adaptions such as stairlifts, adapted bathrooms, wheelchairs, mobility scooters and pendant alarms will become a dominant area of spending. Market forces will encourage producers and distributors to sharpen up their communications to older people but it would be a very positive development if we were to address this now rather than later.

The government’s 3 million lives initiative, announced last year with the aim of improving access to telecare and telehealth, is an important step towards transforming service delivery for people with long term conditions, and/or social care needs, by utilising telehealth and telecare within health and social care services. Telecare and telehealth relate to the use of technology-related devices, from high-tech equipment to simple sensors, that help people maintain their independence and boost their safety. And during a recent debate on the Care Bill in the House of Lords the government announced that it intends to maintain existing entitlements for older people regarding aids, minor adaptations and intermediate care.

These developments are warmly welcomed. However recent research by Age UK Enterprises, the commercial arm of the charity, found that there is still a way to go in ensuring that knowledge about these developments is passed to those who most need them. The survey revealed that 20% of over 65s feel there is a lack of information available about independence aids for the home.

The low consumer awareness amongst people aged 50-70 of the very products which can aid independent living at an older age can be addressed. But there are also social perceptions that we need to tackle too. A key finding from the research conducted by the Health Design & Technology Institute (HDTI) at Coventry University in partnership with Age UK and campaigning charity Grandparents Plus, is that while some in later life would benefit from independence aids, many older people do not want to be stigmatised or singled out as being in need of “assisted” products or “equipment”.

Age UK Enterprises is interested in this as we provide personal alarms (one of many aids that help older people remain independent within their own home). It is imperative that the utmost is done to prevent falls and accidents within the home and these aids are a step in the right direction to ensure the protection of this demographic (NHS figures show that around 30% of adults over 65 and living at home will experience at least one fall a year and this rises to 50% of adults over 80 who are at home or in care).

So we need to collectively tackle these issues by thinking comprehensively. From their inception and design these products need to help avoid stigmatising older people by ensuring good, attractive, non-medical design. Their availability needs to be considered too.

Out Age UK Engage Business Network aims to share knowledge and insight about what the ageing process means for business best practice. It encourages better design of mainstream products and services to meet the needs of our ageing populationThe Network is seeing more and more businesses waking up to the idea of making services and products easier to engage with and inclusive; not just subsets of their product range aimed at the older market but their entire offering. If done well, this will naturally make brands accessible to all customers, including people in later life.

We must help older people realise how much support is available to them. There are solutions available to help improve their independence, as well as their confidence in the support available to them. This support network is substantial and includes everyone from charities and businesses, through to local authorities and the government, and each element has its part to play in raising awareness of independence aids.

* Gordon Morris is managing director of Age UK Enterprises. Age UK’s ‘Adapting your home’ guide includes information about the aids that can enable older people to stay independent in their own homes for longer; for a free copy call Age UK Advice free on 0800 169 6565 or visit www.ageuk.org.uk to download a copy.

An invisible population: older people with autism

A resident of Hinnerup Kollegiet, a Danish community of older people with autism (pic: Hinnerup Kollegiet)
A resident of Hinnerup Kollegiet, a Danish community of older people with autism (pic: Hinnerup Kollegiet)

Timothy Baron was among the first children in the UK to be diagnosed with autism just over 50 years ago. Timothy was in need of specialist education but autistic children then had no right to schooling, so his father, Michael, opened his own school, the movement became the Society for Autistic Children – now the National Autistic Society (NAS).

That was the 1960s; today, Timothy, who lives in residential care, is nearing 60. The first generation of children to be diagnosed with autism is now moving into older age. Ageing with autism brings not only the particular challenges of the condition – communication, social interaction or sensory issues – but the social, physical and mental health issues often experienced in old age.

Policymakers are aware of the impact on society of the ageing population, but the same focus has not been given to people with learning disabilities and autism.

Read the rest of my piece about the need for more work on autism and growing older in the Guardian’s social care pages.

Tailor-made technology: systems and support in social care

Julie Heightley was so worried about her son Thomas suffering an epileptic fit at night that for two years she slept on a camp bed outside his room. The broken sleep and constant supervision of Thomas, who has autism and global developmental delay, was adversely affecting both Julie’s role as a carer and any prospect of independence for her son.

I came across Julie and Thomas’ story while researching a new report published today by the Voluntary Organisations Disability Group and the National Care Forum.

Now, thanks to a discrete network of wireless sensors dotted around the four-bedroom family home just outside Wolverhampton, Julie and Thomas, now five, are enjoying what Julie calls “a new lease of life”. Since the home was kitted out with the assistive technology two years ago, Thomas has been able to safely play and walk about the house independently without needing his mother’s 24-hours-a-day supervision. As well as having a slightly more hands-off approach to her five-year-old, Julie, a lone parent, has more time to spend her two older children who are in their teens.

Julie and Thomas with his older siblings
Julie and Thomas with his older siblings

Assistive – or personalised – technology includes a wide-range of supportive but unobtrusive services and equipment, from personal alarms for elderly people, to seizure monitors and more sophisticated fingerprint recognition systems that allow you to open the door without keys. It can also include computer software, hand held devices or video call systems that increase social interaction and family contact.

As fans of such services and systems point out, the traditional view of this technology is that it involves a medical and prescriptive approach (see the comments on the related VODG blogpost), but the key issue is to bring it to the consumer market, widen its use among the general public and raise awareness about its potential.

As the publication stresses, the social care sector has embraced a huge amount of innovation in assistive technology, using new methods to complement the physical work of support staff. it is transforming lives for the better. But the use of such services, systems and equipment does not enjoy the higher profile of our counterparts in the health sector, despite the fact it is entirely in line with the “person-centred” approach that care providers are working towards and encourages choice, control and independence – social care watchwords.

Today’s report, with its real life stories of how technology is transforming the lives of vulnerable people, aims to change that: “Put simply, technology is part of our modern landscape. We use it for work, leisure, at home and on the move. It makes our lives easier. People with life-long disabilities or age related conditions should share that experience, benefitting from the advantages that tailor-made technological support can bring.”

* Read more on the VODG website and download the report Using assistive technology to support personalisation in social care

Older, wiser..and off the radar?

How old does a woman have to be to be categorized as “older”? 50? 70? And if we push females deemed to be “older women”, in “late adulthood” or in “advanced years” into the same group, what common concerns do they share, if any? More importantly, does anyone outside of that demographic notice or care about ageing women? And if they do – what’s being done about the issues they’re concerned about?

While Britain as an ageing society is a constant source of political and public debate, the specific issue of women and ageing isn’t afforded the focus it should, given that women tend to live longer than men. The 2011 census suggests there are about 11 million women over the age of 50 years, about 4 million of which are over 70 years. By 2035 there will be 4 million more females aged 65+ than under 16s.

Like most people, my personal experience – and I speak from the start of my fourth decade – is that the older you get, the younger so-called “older people” seem. As you age, your perceptions of old and young clearly shift. I don’t, for example, class my friends in their 50s as “old” and my own 81-year-old mother-in-law defies stereotypes and expected patterns of behaviour with her far flung travels to South America and her energetic role as a breeder of rare sheep.

The youth/age picture becomes confused still when you think that childhood apparently ends at 12, younger girls are presented (and sometimes present themselves) as much older while older women – think Madonna, Helen Mirren – are variously praised or mocked. And more often than not, the kind of articles I’m thinking of include a particular kind of faux-praise for a woman’s age-defying antics and appearances…you know what I mean – the pieces that comment on a woman’s “confidence” (ie delusion) in “flaunting” (as in “she’s too old to dress/act like that”) her “mature” (read: “wrinkly, untoned”) figure.

A provocative series of essays published today, coinciding with International Women’s Day, highlights policy issues about ageing women, underlining how the contribution to and role of older women in society is overlooked.

The think tank the International Centre for Longevity (ILC-UK) publication Has the sisterhood forgotten older women? contains 38 essays – everything from personal recollections about the role of women in family and society, to thoughts on intimacy and relationships, the invisibility of older women in international development and opinions about the low media profile of older women (see the words of an older female MP on how she is treated by political parties in relation to media work).

The authors include politicians, policy makers, academics and campaigners such as Jane Ashcroft, chief executive of housing and care group Anchor, Sheila Gilmore MP, Michelle Mitchell, chief executive of Age UK, Heléna Herklots from Carers UK and Marina Yannakoudakis MEP.

As well as discussions about how far women in their 50s 60s 70s think of themselves as “old” (answer: they don’t), the collection of writing stresses the dilemma facing older women – while longevity is to be celebrated “there is a risk that women, who often live longer than men, do so at the risk of being caught in the metaphorical mouse trap: alive but with little quality of life”.

The ILC-UK has also today announced it is establishing an Older Women’s Policy and Research Action Alliance to create “a roadmap for future research and policy priorities”. The organisation hopes today’s compedium will spark a new debate on women in an ageing society.

The issue of the challenge for ageing women in care is a particularly strong theme in today’s collection of essays. In the UK, women account for two thirds of community care users over the age of 65, and three quarters of people in residential care.

Baroness Sally Greengross, chief executive of the ILC-UK added: “Women must engage in the debate on social care funding if we are to get a solution which works for all. It is also essential that the caring contributions of older women are not ignored. Future care reform must take account of and not disincentivise the informal care contribution of older women.”

Here are just three edited highlights from among the pieces in today’s publication:

Oh, I didn’t see you there!
Jane Ashcroft, chief executive, Anchor
:
“For several years I have been irritated by the propensity of print journalists to tell us the age of any woman in the news, regardless of any relevance to the story, while rarely applying the same approach to men. Why is age a defining characteristic of women?

In 2010, research conducted on behalf of Anchor, the housing and care provider which I lead, analysed one week of TV programmes on the 5 major UK channels (Older Faces Audit, March 2010, Anchor). We found a dramatic under-representation of older people, and especially older women. Across all channels, people over 50 were under–represented. Despite making up 34% of the UK population, representation on the major channels was as low as 12%, with only BBC2 achieving a realistic level of 38%. And amongst TV presenters appearing in the week under review, only 1 in 5 was an older woman.

This supports my view that ageing in men is often seen more positively than in women – many older men are described as wise and experienced, whereas the expression “don’t be such an old woman” is used to convey entirely negative characteristics.

This picture is so different from the reality that I see in my everyday life, that it is tempting to wonder if I live in a parallel universe! Of my 9,000 or so colleagues in Anchor, over 500 are continuing to enjoy their work well past the official “retirement age”.

Behind the scenes, many older women are leading change in communities, organisations and families, contributing their resources and multitude of skills, and leading interesting and rewarding lives. Some older women, like older men, are facing loneliness, loss and poor health. As a society, and for ourselves, don’t we need to recognise every older woman as an individual, and to enable us to do that we need to improve visibility – instead of “oh, I didn’t see you there” can we say “ah, I’ve been looking for you”?

Older women and care: are they invisible to the sisterhood?
Michelle Mitchell, Age UK:

“Despite care having been on the feminist agenda for years, the issue of it in later life has remained shrouded from our viewpoint, as millions struggle in quiet crisis. Yet nowhere are the compound challenges of class, gender and age more evident and nowhere are older women more in need of a voice.”

Older women carers – invisible and ignored?
Heléna Herklots, chief executive, Carers UK:

“Many older women carers grew up during a time when women’s contribution to society was far less recognised than it is today. They now live in a society which too often ignores their contribution as older women carers. We need to challenge this; guard against any prejudices and assumptions we may ourselves have; and work to ensure that older women carers are recognised, respected, and valued – no longer invisible and ignored.”

*Download ILC-UK’s Has the sisterhood forgotten older women? here

Why I always had time for George: older people and mental health

I’m walking across the grounds of the psychiatric hospital on a very wet winter evening and a patient, let’s call him George, steps out from behind a bush to talk to me. He needs to tell me something that he feels is important and can’t wait.

We both stand for quite a while talking (he’s a staunch socialist and wants to talk politics) and both get soaked to the skin. I think to myself that it’s more respectful to hear what he wants to say then hurry on and seek shelter. As we eventually walk back to the ward together, he is calmer, seemingly content to have got his feelings off his chest.

This scene took place more than 20 years ago (I mention it in my book, Sticks and Stones) but I believe now what I thought then, that my exchange with George is what real empathy is all about. It’s what being non-judgmental is about, what being human is about, what being a nurse is about.

I have nursed enough people during my time as a mental health nurse to understand that life is a bit of a lottery. I have seen the elderly lose their dignity in nursing homes and in hospitals. This is not always through dementia. This could be depression or psychosis, or other debilitating illnesses depriving them of their confidence, self worth, and esteem.

But as the recent figures about suicide rates rising among the elderly show, mental health issues may be overlooked in older people as society mistakenly presumes dementia is the only condition older people experience. Another assumption is that depression is a normal part of ageing, because the elderly have more of a sense of their own mortality.

I hope that whatever befalls me in my old age I am shown the same respect and compassion as I believe I have shown others. There’s often a failure of respect not just because of deliberate neglect or a lack of compassion, but through ignorance – through not treating people as individuals or not meeting their emotional needs.

So how do we prevent this? Essentially it is around searching for the person behind the illness and stepping back for a second and thinking “how would I like to be treated if this was me?” or “would I like to be looked after in this environment?”

Of course I’m not arguing against the completion of care plans, but I do worry that the increasing onus on form-filling and box-ticking can deny care staff more time to spend with those they support. A care professional might be spending hours on admin, or typing up a care plan – but how does the person in their care know this is part of them being cared for? They’d rather have our face-to-face time I’m sure.

Person-centred care, as the name suggests, is meant to put the client at the heart of the care planning process. This care is collaborative and negotiated with the client (theoretically). However, often when someone is acutely psychotic and lacks all insight, nurses then become the advocate and the care must be planned depending on what is required to get the person well again. As for personalisation and personal budgets, the take up is sadly not as high as it should be; people worry about risk management and general funding pressures that can put people off.

Compared to when I was in a clinical setting, today’s care world involves a far more litigation and risk-averse culture which takes staff away from the client. At the time I knew George, I could spend longer in one to one sessions with clients, so could my colleagues, but more often than not, today’s staff are only allocated a set amount of time each shift to spend in one to one, face to face therapeutic sessions on the wards.

Staff cutbacks on the wards and in the community will also reduce the time staff can spend with clients in face to face interventions. However staff should still show empathy and be non judgmental in all approaches, because this is the essence of their roles.

Clearly, organisations promoting older people’s issues have a role to play in raising awareness and educating. We stigmatise the elderly as much as we stigmatise the young people, so we need more positive promotion of what the elderly can offer society. Countries like China and Japan, for example, revere the elderly and yet in this country I think some people view them as an afterthought, a burden.

The hospital where I met George has long since been converted into a block of expensive flats while the man himself, already in his 80s when we had that long rainy chat, will have passed away many years ago. But the memory of that evening stays with me as a reminder of the underlying principle of care as I see it; listening to, respecting and having the individual – not “the system” – as your main focus.

Sticking plasters, surgery and spending reviews

A damp squib of a sticking plaster, or what health secretary Andrew Lansley has said is the “most comprehensive overhaul [of social care] since 1948” and an end to the care lottery?

Most early reaction to today’s long awaited care and support white paper and its associated draft bill is firmly on the side of the former view.

I’ve yet to read all the detail, but while there’s a much-needed focus on elderly care, there’s not enough of a recognition for other sections of society needing care and support, and nothing to plug the funding gap.

As Merrick Cockell, chairman of the Local Government Association, told Radio 4’s Today programme this morning: “We haven’t got time to tinker around…We’ve got to look at radical change.” The LGA has said there is a £1.4bn gap this year between the money available and the cost of maintaining social care services. There’s a good run down of the council perspective on the LGC website and while this post from Ermintrude2 was written before the publication of the white paper, it’s a really good explanation of the issues.

While today’s announcement picks up some from the Dilnot report (Dilnot suggested a system for the elderly where the total cost of care would be capped to £35,000 and support to old people should be extended to those with assets of £100,000), any “victory” for common sense and civil society is bittersweet because it fails to lacks the cash to make real far-sighted change a reality. The proposals might well show good will, but there’s no financial way (this communitycare.co.uk piece relates to the vision for social work, which could be undermined by the lack of cash).

It is, as shadow health secretary is quoted in the Guardian’s politics live blog as saying, “a pick and mix approach to the Dilnot package”. So the government hasn’t taken up the “once in a lifetime opportunity” that Dilnot mentioned when he launched his vision of how to fix the social care system.

Among today’s main points are plans for an optional social insurance scheme under which people pay the government premiums to ensure that their costs for care and accommodation are capped, and a “universal deferred payments” system where councils lend money to those needing care, then recover the cash when the house is sold after death. Sound sensible – perhaps even familiar? That’s because it’s already in use – around 9,000 people already used deferred payments.

Today’s government press statement suggests we watch this space: “The government will continue to work with stakeholders to consider in more detail variants under the principles of the Dilnot commission’s model, before coming to a final view in the next spending review.”

Having already waited with bated breath for today’s long overdue white paper and draft bill, it’s unlikely that many will hold it much longer.

Here’s a flavour (by no means a comprehensive round up) of reaction on Twitter and the web to today’s social care white paper:

Richard Humphries, senior fellow at the King’s Fund: “There is a financial vacuum at the heart of these proposals which undermines the bold and ambitious vision for a reformed system set out in the White Paper.”

Julia Unwin, chief executive of the Joseph Rowntree Foundation: “Successive governments have failed to act. Without a sense of urgency more of us face insecurity and uncertainty as we age. The failure to address social care properly will only mean more pressure on the NHS thereby destroying all hopes of a sustainable and functioning health system in the future.”

Clare Pelham, chief executive of disability charity Leonard Cheshire Disability: “It is a question of fundamental decency that disabled and older people should be able to live their lives with dignity in Britain in the 21st century. We hear a great deal about the need to support older people through dignified social care, but it is important that the needs of younger disabled people are not overlooked.”

Mark Goldring, chief executive of Mencap:”The social care system is in crisis. Years of underinvestment and cuts to services have left one in four adults with a learning disability literally stuck in the home, isolated and at risk, with family carers at breaking point and scared about the future…We are reassured to see that the Government has committed to fund immediate reforms, but this promising blue print will never get off the ground if it fails to address the chronic underfunding in social care. The Government cannot delay any longer, and must now outline an urgent plan of how it intends to fund social care reform in the long term.”

Carers UK chief executive Heléna Herklots: “The measures set out in the draft Care and Support Bill would move from piecemeal carers’ rights legislation to the establishment of carers’ rights in government legislation and, for the first time, equalise carers’ rights with disabled people rights…But to make these rights a reality, what carers also need is a social care system with the resources to overcome years of chronic underfunding and rapidly growing demand. Those who face soaring care bills, service cuts and a daily struggle to access even basic support from the social care system, may see new rights in legislation as empty promises without the funding to back them up.”

David Orr, chief executive of the National Housing Federation: “We’re pleased the White Paper recognises that housing is crucial to the integration of health and social care, and welcome the investment to build more supported housing for older people and younger disabled adults…We need a health service that invests in services that keep people out of hospital, not one that simply treats them when they get there….the Department of Health needs to encourage local government and the NHS to pool budgets, focus on housing-based preventative services and set out its full proposals for the funding of social care – for today and for tomorrow.”

Nick Young, chief executive of the British Red Cross: “That the Government is accused of failing to address the social care crisis is no surprise. The scale of the funding problem is enormous and growing. It will take courage, creativity and tremendous degree of political will to solve. That isn’t going to happen overnight.”

Reaction on Twitter using hashtags #carewhitepaper, #ukcare and #carecantwait (also check out ‏@sim89 Storify‬ compilation of early responses):

@ageuklondon Though it contains some good ideas, the #carewhitepaper doesn’t go far enough. The problem of care will not go away and is getting worse!
‏@Sensetweets Deafblind people continue to be abandoned, as funding fails to materialise – our response to the #carewhitepaper
‏@TonyButcher #carewhitepaper – like excitedly looking forward to your birthday but then only getting a cheap pair of Primark socks – disappointing
‏@gary_rae If this is a “watershed moment” for #ukcare then we’re clearly drowning. #carecantwait #dilnot
‏@Marc_Bush Care crisis demanded decisive action. Today we got a holding statement…’ @scope rspnd 2 @DHgovuk ‪#carewhitepaper‬ http://tiny.cc/scopetocare
‏@WoodClaudia focus on deferred payments in ‪#carewhitepaper‬ due to absence of other funding ideas. It is option for some, not THE solution being proposed
@Ermintrude2 Disappointed that headlines about #carewhitepaper all seem to concentrate on selling houses to pay for care. System about so much more.

Storytelling in senility: revealing dynamic personalities beneath the dementia

One of my biggest regrets is that I didn’t take down more of my mother’s stories before her slide into dementia accelerated. I would have liked to know more about her brief engagement to a Vietnamese diplomat, or the time she visited Benidorm when it only had two hotels, or what more she could tell me about her older brother who was killed in the war.

That’s why I was fascinated to meet David Clegg, the man behind an inspirational project dedicated to collecting the life stories of people with dementia. His Trebus Project has collected a huge range of stories, some of which have been published in two books and collected on a record and some of which have formed the basis for a Radio 4 series, produced by Paul Whitehouse and Charlie Higson. He’s now working on a short film.

It is estimated that over the next decade, the number of people with dementia will hit one million and today the prime minister is due to launch a “national challenge” on the illness, describing it as a “scandal” that the UK has not done more to address dementia. The cost to UK society is estimated at £23bn.

The prime minister is due to announce a major funding boost for dementia research, reaching £66m by 2015, from £26.6m 2010. He is due to say that “the quiet crisis” is one that “steals lives and tears at the hearts of families”

David Clegg’s Trebus Project is about revealing the fascinating and rich histories of people with dementia; it is about celebrating the lives that appear to have been lost.

Trebus began after Clegg closed down the art gallery he used to run and began working on art projects with care home residents. The very first person he met happened to be a woman with a fascinating tale to tell: she’d once been the girlfriend of the notorious acid bath murderer John Haigh.

“Nobody knew it,” he recalls. “They saw to her needs – it took two people to get her into a hoist for example, but they didn’t know anything about the fact that she was bohemian beyond belief. She would have given William Burroughs a run for his money – she’d hung around with Princess Margaret and made her way back from the south of France wearing only a fur coat and high heels.”

Sheila, one of the Trebus "storytellers" in her extrovert younger days
Sheila socialising (note she's standing in front of cricketer Fred Truman)
Sheila at her care home, in front of a portrait of her younger self

Clegg is full of anecdotes about the people he’s spoken to. One of my favourites comes from an elderly gay man, who remembered celebrating VE day in London. “I asked him: ‘Did you go to the Palace and see them on the balcony?'”, Clegg says. “He replied: ‘No I was in the toilets – I got off with seven soldiers that day and one more in the tube.’”

It’s a perfect illustration of Clegg’s point that far too often we try to sanitise the lives of people with dementia. “A person with dementia is presented as someone fading away, leached out, who’s a shadow,” he says. “But many of the people I’ve worked with are not shadows – they are trying to make sense of their lives in difficult circumstances. They are not any less as people – they can be as funny, vibrant, passionate and randy as they ever were.”

His is a refreshingly unsentimental view of dementia. “We need a new story on dementia. We either present it as a global epidemic or a tragedy,” he says. “But we have got to get the message across that these are people who were not always old, who have lived lives that were full and eventful. Sometimes we might disagree with what they did or the opinions they held but dementia care needs to grow up and embrace some of the complications.”

Clegg, who did a stint working as a carer to see what it was like, plays down talk of being an agitator for the human rights of people with dementia. “I go in and listen and keep coming back,” he simply says. But his project does shine a light on the appalling way older people can sometimes be treated.

A striking shot from the Trebus Project, this time of Marianne, another storyteller

Take the story of John, a man with no living relatives, who when Clegg first saw him was lying on a bed staring at the ceiling, in a completely bare room without even a clock to mark the passage of time. When care home staff were asked by Clegg to bring him a clock they did – but then fixed it on the wall behind his head.

Clegg says the vast majority of care workers do their best, reserving his ire for the lack of resources to stimulate residents and the managers or directors who only want to fill their beds – and who have sometimes banned him from their premises because they were nervous about what he was doing.

His main motivation, he says is to collect words that would otherwise be lost. In the process, he is putting together something incredibly powerful: stories that are sometimes funny, sometimes moving, sometimes, as he recognises, almost like a Samuel Beckett play in their bleakness.

The Trebus Project provokes you into looking behind dementia stereotypes

It also, says Alison Wray of Cardiff University, has very real benefits for the person with dementia, putting them at the centre of the process and allowing both them and their carers to reconnect with their identity. In Clegg’s recent work, he has been doing less editing to give the stories a traditional narrative structure. Instead they are presented as fragments. Says Clegg: “It can show what dementia is like from the inside.”

To buy the publications or to donate to support the work of the Trebus Project, go to the website or email information@trebusprojects.org

The truth about rough sleeping

The Truth About Stanley trailer from www.thetruthaboutstanley.com on Vimeo.

Think homelessness and film and you can’t fail but think of Cathy Come Home. While the social action that followed Ken Loach’s cinematic call to arms was a one-off, the film project The Truth About Stanley could be a modern take on that artistic tradition; a visually striking and thought-provoking piece of social realism that seeks to raise not only awareness about homelessness, but funding.

Just today the government’s new homelessness figures showed 48,510 households were classed as homeless in 2011, a 14% rise on 2010. The situation has led one charity chief executive, Leslie Morphy, of Crisis, to demand action from the government amid the “perfect storm” – a combination of economic downturn, joblessness, soaring demand for affordable housing, housing benefit reform and cuts to homelessness services.

This is the dire social and economic backdrop to the forthcoming film shot by award-winning director Lucy Tcherniak. The Truth About Stanley tells the story of two rough sleepers who make unlikely friends; Stanley, an elderly Congelese man, and Sam, 10.

Still from The Truth About Stanley
Stanley (Oliver Litondo) in The Truth About Stanley

The non-linear narrative is intriguing, opening as it does with the death of Stanley and developing into questions about Stanley’s past and the reasons for Sam being on the streets.

Sam (Raif Clarke), The Truth About Stanley
Sam, The Truth About Stanley

The lines between reality and fiction are blurred as the pair’s friendship develops and Stanley regales his young runaway companion with stories from his past. Or, as the website neatly puts it: “No home, no belongings, plenty of baggage. A short film about a man, his stories and the boy who listened.”

The project, a twist on more traditional donation campaigns, aims to raise money for two homelessness organisations, social enterprise The Big Issue Foundation and charity Anchor House.

The film offers a much-needed focus on the twin issues of older and younger rough sleepers. Entrenched rough sleeping is common among older rough sleepers but accurate figures on the issue and that of homelessness among older people are hard to come by, partly because of the hidden homelessness and the lack of age breakdown in head counts.

According to Homeless Link, however, the 2010 total of street counts in authorities with a known or suspected rough sleeping problem was 440 and generally around 18% are over 50-years-old.

As for children sleeping rough, again the figures lack accuracy, but according to the charity Railway Children, at least 100,000 children runaway in the UK every year and many are not reported as missing by their parents or carers. According to youth homelessness charity Centrepoint, 80,000 young people experience homeless in the UK each year.

The 20-minute film is being produced in association with Oscar-winning Trademark Films and features songs by Radiohead and Mumford and Sons. Stanley is played by renowened Kenyan actor Oliver Litondo, the lead from the international feature film The First Grader and Sam by 12-year-old Raif Clarke. This Guardian piece from last year tells you a bit more.

The trailer and shots here (photographs by Ben Millar Cole) have been released ahead of the premiere on April 2 at the Rich Mix cinema in Shoreditch. The film will be and released online on April 4th.

*To donate text STANLEY2, 3 or 6 to 70300 to give £2, £3 OR £6 to The Truth About Stanley fund or visit the project’s
Just Giving page.
100% of the donation will go to homeless charities Anchor House and The Big Issue Foundation. Follow the film on Twitter.