As my piece on the Guardian website today explains, community nurses can be employed by NHS trusts, GPs, charities such as Dementia UK or private providers delivering NHS services. However, their numbers are falling. The decline might be attributed to primary care trusts transferring provision to other organisations under the government’s Transforming Community Services programme because those nurses moving to non-NHS providers are not captured in relevant workforce data.
The fall in numbers coincides with healthcare reforms that make their role even more important. “District nurses will be likely to play a significant role in the NHS reforms, particularly around new models of care that shift more care into the community,” according to Rachael Addicott, senior research fellow at health thinktank The King’s Fund.
By 2025 there will be one million people with dementia in the UK, according to the Alzheimer’s Society; a project I reported on today for the Guardian online is proving the impact of arts-based therapy on people with the condition.
Take Eddie (not his real name). When he first met arts practitioner Jill, from London-based arts group Age Exchange, he was withdrawn and uncommunicative.
Eyes downcast, head bowed, hands clasped and legs crossed; Eddie, an introverted wheelchair user, had been in a dementia care home for a decade when he began sessions Jill.
Over six weekly reminiscence arts sessions – work that explores memories using creative activity – Jill noticed how Eddie became “awake, sitting upright in his wheelchair, trying to talk, being better at regulating his mood and behaviour … He felt safe enough to allow himself to express some of these stored up energies and feelings through movement and making sounds which freed him and allowed him to start opening up and connecting with people.”
A simple gesture after the final session – previously unimaginable – reflected the transformation. Jill recalls: “I was very touched as we said goodbye; he extended his right hand towards me, I took it and we shook hands.”
We have just ‘celebrated’ World Mental Health day (10 October). I, and many like me, hope that as each year passes so does the stigma and discrimination of mental health. Stigma impacts like a disease – if left untreated, the result is devastating.
Attitudes are certainly changing around mental health, although slowly. As pointed out by Time to Change, the mental health campaign I’m involved in, perceptions are changing. The National Attitudes to Mental Illness survey shows that since 2011, an estimated two million people – or 4.8% of the population – have improved attitudes towards people with a mental illness.
In addition, the data suggests that more people are acknowledging they know someone with a mental health problem (64% in 2013 compared with 58% in 2009). However nearly half (49%) of respondents said they would feel uncomfortable talking to an employer about their own mental health.
Anti stigma work has taken up a large part of my life in psychiatric nursing. And, although it sometimes feels like two steps forward and one back (as the research quoted above hints), the long and winding journey is worth the taking and the rewards are for the benefit of everyone.
I have seen the impact of stigma. I have also felt it. I have seen the destruction it causes people who experience mental illness and their loved ones. This is the motivation for my work.
The recent news about the impact of isolation underlines the need for more work along these lines. Both young people and older folk are affected by severe loneliness.
My talk was about the stigma of mental health and aimed to promote Time To Change. I wanted to raise awareness of the insidious impact of stigma and its long-term damage, and explore how we can all make a difference to the lives of others through our daily interactions. I wanted my message to reach across the village and, more personally, make a mark in the place where I spent my childhood years.
For me going back to my former home, which I left almost 40 years ago, was quite an emotional occasion. It had been the culmination of a life long ambition, a seed borne in childhood that had finally flowered. In the dark corners of my mind has sat the repressed thoughts from childhood of my father’s mental health issues, and the attitudes of others at the time to this.
Assembled in the room of around 50 people were faces from my childhood, alongside faces of the present. An eclectic range of people and experiences, young and old. Friends and family sat beside strangers. I will always be very grateful for the efforts they made to attend and help me to achieve my ambition.
Social contact and interaction is a powerful weapon in challenging ignorance and the myths surrounding mental health. Breaking down the invisible barriers we put up and accepting people as people, rather than defining them by their mental health condition is critical. The two-hour event was informal and interactive thereby providing the ‘safe’ space for those who wished to be open and share their personal experiences, or the experiences of others they hold close.
I started with a mythbusting quiz about mental health to highlight the misconceptions that exist, then spoke about my work in mental health nursing, my anti-stigma initiatives, and also my own experience of depression. I covered my work in the media with the TV soap Emmerdale, advising on the award winning depression storyline of one of the main characters, Zak Dingle.
I stressed it was my hope to encourage the viewers to empathise with Zak’s plight, to see him as being vulnerable and a victim of his circumstances rather than a danger to others, and criminalized
It was a success. I was at pains to ensure it went well because it meant so much to me. I have delivered many talks and presentations previously to large and small audiences but this one was more personal.
Since that summer’s evening I have spoken to people to gauge how things went. Did it make a difference? Has it changed their views? Inspired them? Where do we go from here? The responses have enthused me.
I intend to arrange a follow up event to build on this and plant another seed for the future. A seed for the young people, some who, sadly, will inevitably grow up with the same experiences I had.
Hopefully there will be some changes in attitudes resulting from that evening. It might seem to many just a single, small event, but if it can change just a handful of attitudes and encourage people to talk about mental health, it will be a success. Change drips slowly, but it will come all the same. One day.
“They should not suffer in silence”, says Amina Begum, a full time carer for her mother, of why we need more culturally specific dementia services for black and South Asian communities.
Speaking to me for a Guardian piece published today ahead of World Alzheimer’s Day on Sunday, Amina spoke about the contrast in support between when her father had Alzheimer’s (he died seven years ago) and today, as she cares for her mother, Jahanara, who has vascular dementia.
Amina is lucky; there is strong targeted support in Tower Hamlets for the area’s Somali, Chinese and Bengali communities. But while there are pockets of great practice, such as the Alzheimer’s Society’s monthly “dementia cafes” that Amina and her mother attend, such specialist care is not widespread. This is despite the fact that African-Caribbean and South Asian UK communities are at greater risk of developing dementia than the indigenous white population.
Amina told me that as she hears her mother swaps childhood stories with her peers at the Sylheti-speaking dementia cafe, she sees another side to her 65-year-old parent. Jahanara is at ease and animated instead of being confused and frustrated. The pair are among around 200 regulars at the social club for the area’s Bengali community based at the East London Mosque. Continue reading the full piece here.
*Amina and her two daughters are taking part in the fundraising Memory Walk on Saturday 28 September which aims to raise money for research into dementia.
Women in Croxteth, Liverpool, discuss the impact of cuts on communities, part of the research for the new book, Austerity Bites
Do you know what austerity really means?
Here’s a definition from the Collins Dictionary, as quoted in Mary O’Hara’s commanding new book on the subject, Austerity Bites: “…difficult economic conditions created by government measures to reduce the budget deficit, especially by reducing public expenditure: a period of austerity/austerity measures.”
But that literal definition, and the words of politicians using the rhetoric of austerity to mask the harsh impact of public spending cuts, conveys nothing of the human cost of the unprecedented reform of the welfare state.
Austerity Bites redresses that imbalance. I don’t usually do reviews on this site, but this timely book demands attention.
Reading this book means you join the award-winning journalist O’Hara in her “journey to the sharp end of cuts in the UK”. Based on a 12-month trip around the country meeting diverse people affected by cuts as reforms were introduced in 2012 and 2013, O’Hara gives a platform to untold stories of hardship.
O’Hara’s book suggests, “austerity” has become an acceptable rhetoric, one that glosses over the harsh impact of welfare reform – as in “cuts hurt but in the age of austerity, what else can we do?” The creeping normalisation of food poverty and food banks, as explored in this book, is shameful.
While an intricate explanation is given of the political and economic context, it is the lives of those whose voices are rarely given a platform – the homeless, the disabled, the young among them – that are the focus here.
Crisscrossing the country, the picture is one of political classes living in a “bubble” untouched by the harsh reality of life on the front line of Austerity UK; a massive chasm between the people suffering from the impact of cuts and abolition of vital benefits and the people making the decisions to abolish that support.
People talk of “breaking point”, “existing not living”, their “desperate situation”; the book does much to explode the myth of benefit Britain. A fairly comprehensive catalogue of unfairness is chronicled in Austerity Bites – the disabled, for example, are shown to be bearing the brunt of cuts, the vulnerable are made more vulnerable and the poorer become poorer.
As one man, Dec, who O’Hara meets on a Luton estate tells the author: “Do I deserve better? Do other people deserve better? I think they do.”
Unsettling, but vital, reading, this book lays bare the real, true story of austerity.
One in six of us – that’s 10 million people in the UK – are over 65 years old. By 2050, this number will have nearly doubled to around 19 million, or one in four, according to government figures.
In a recent Age UK survey, more 77% of respondents said they are looking forward to living longer but 91% said something needs to be done to help us all lead a better later life. The survey of 1,480 adults also suggested that most of us (83% of those questioned) believe negative perceptions of later life must change.
The onus is largely on health and social care organisations – hospitals and care homes – to improve the treatment of older people (not least as cuts decimate support for the most vulnerable). But communities themselves and some innovative local projects are also doing much to tackle social isolation and change attitudes.
One unusual scheme in London is doing just that. I know the Albany arts centre in south east London through the work of the fantastic charity Heart n Soul, one of almost 30 groups that use the venue as a base (read more about Heart n Soul in this previous post).
The centre is now hosting a creative day club for the over 60s – the kind of stereotype-smashing thing that sticks two knitting needles up at anyone who dares assume day care for older people is about flower arranging and endless cups of tea.
Proving that older people can be just as innovative, artistically edgy and downright clown-like as their younger counterparts, the Meet me at the Albany project involves everything from circus skill tasters, to neo soul music performances and spoken word sessions with “poet from the pub” Simon Mole and fellow leading wordsmith Malika Booker.
The image above is from a recent workshop with photographer Manuel Vason, an artist who sees his practice as a constant battle against the impossibility of reaching ‘presence’. Think cutting edge rather than Kodak moment.
The project is produced by the Albany and participatory arts company Entelechy Arts, which has worked for more than two decades with people in care, younger people and those with learning difficulties and complex disabilities. It is also a direct response to the issue of loneliness among our ageing population and has been created with the support of Lewisham council’s adult social care staff “to ensure the effective dovetailing of the programme with targeted provision for those with greatest need”.
As well as creative workshops and performances from established artists, participants can have a home cooked hot meal and drinks. Sessions take place every Tuesday at a cost of £6 (all materials are included in the price and there is no charge for personal assistants and carers). The scheme is targeted – rather wonderfully I thought – at “anyone over 60 who’d like another place to call home”.
At 80, Velda is the sole carer for her husband Henderson who recently had a severe stroke. She is fully signed up to the Albany ethos: “[It’s]…good to leave your home, to get away from your four walls and come together, use your imagination and do things that are worthwhile rather than just housework. I enjoy making new friends – people you never knew before. [My husband has]… known me for 51 years and he never knew I could draw.”
Just last week Age UK launched its Love later life campaign encouraging people to think differently about getting older, and demonstrate that older people have a valued role in society (see clip below).
The campaign urges us all to think that it’s never too late to try something new. Down at the Albany, Velda and her peers are ahead of the game.
“Ageing is not an illness”: Age UK’s new television advert
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.
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
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.
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.
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.