The drop is down to better medical care and healthier lifestyles, which has particularly affected deaths from heart disease. As a result, the ONS data show that more men and women now die in their eighties than at any other age.
Image: Alamy
My good friend Gino d’Achille, the artist and well-respected illustrator of the Flashman, John Carter of Mars and a myriad of other titles, has had Parkinson’s for about 12 years. He still draws and paints magnificently, but his life involves many quality compromises, even though he is lovingly cared for by his partner, the portrait painter, Mim Hain.
For a few months, Gino has participated in “Dance for Parkinson’s” at the English National Ballet, as his amusing and self-deprecating sketch attests.
The ENB offers people with Parkinson’s and their carers “an artistic, engaging dance activity. Saturday dance sessions offer an insight into the way a production is put together with the Company's dancers and musicians”.
The group of 40 or so, started with The Nutcracker and have now moved on the rather more adult – and dissonant – Stravinsky’s The Rite of Spring.
The BBC filmed and broadcast the project recently – you can see it here.
Most of the dance exercises are conducted with people seated, although some require them to stand up, using the back of a chair for support. There is a lot of leaning and stretching out forwards and arms raised up. Gino says he sometimes finds it difficult and isn’t always able to complete the session, but that he can feel himself uncurling as the exercises progress. He notes that really he could easily do the exercises every morning to help him – but if he’s anything like most of us, having the discipline to do this is quite another matter!
He says that the sessions are fantastic, but despite looking forward to them, his condition means that he has to really force himself to get going and out of the house; and that when it is over he is absolutely exhausted physically. But crucially, the results keep bringing him back – he says that mentally and spiritually, he always feels re-invigorated and energized and that the effects last for a while.
When we discussed the classes, I was interested that they hadn’t exactly chosen foot-tapping, get-up-and-move music (which is perhaps surprising, given that the ENB is currently performing Strictly Gershwin at the Bristol Hippodrome).
He agreed, but he also attends another dance exercise class elsewhere locally, where the rhythms that they use are much more step-out-and-dance-able – music from Fred Astaire and Ginger Rogers films. I get the impression that this might be rather more to his dance, or musical taste.
The Dance for Parkinson’s programme is being extended over the next three years, creating more regular dance activities for people with Parkinson’s. Partners include Pavilion Dance in Bournemouth: Dance South West; Merseyside Dance Initiative in Liverpool; and South East Dance Studios: South East Dance.
English National Ballet commissioned Dr. Sara Houston and Ashley McGill, University of Roehampton, to research the benefits of Dance for Parkinson’s and Dr Houston was recently awarded the Bupa “Vitality for Life Prize“ for her research.
And here is one of Gino's Flashman covers – with but the merest hint of David Cameron about him...
'What I learnt' is an activity that Alice Osborne created at thinkpublic, to capture internal learning and share it more widely. Here's one I like!
"No pessimist ever discovered the secrets of the stars,
or sailed to an uncharted land,
or opened a new heaven to the human spirit."
Helen Keller
I have been wondering about Daisy and the way that she has become increasingly compliant and passive since she has been in hospital. Here are some observations.
The nurses wear a range of uniforms in different colours: navy, navy and white narrow stripes, pale blue, mid-blue, pale green or white. Presumably, they get a choice as I cannot tell the difference between a staff nurse, a nurse and a student nurse. The food orderly wears a different outfit in mid-blue. Some nursing staff wear badges which are too small for me to read without invading their personal space – and some don't. Some wear trousers and tops, some wear dresses. The male nurses' outfits are more uniform (no pun intended). Polythene aprons are constantly donned and immediately discarded – which always offends my eco sensitivities.
Doctors wear their own clothes – shirts with sleeves rolled up and ties tucked into shirts for the men and clothes of personal choice for the women.
On the other hand, despite not being ill, Daisy always wears the same thing as the other patients – one of those awful pink hospital gowns with the gaping slash at the back, which may, when she Zimmers along, reveal her fragile personal vulnerabilities at any moment.*
On top of this, she wears one of her own jumpers and on her feet, her favourite old slippers, which have seen better days. A thoughtful person gave her a new pair for Christmas, "but I don't want to wear them; I like these ones – nothing wrong with them". Asserting her independence in relation to people outside the hosptial is no problem it seems, but when it comes to her relationships inside, the story is rather different.
For one who is normally so fiercly independent, surprisingly, Daisy shows signs of an increasingly submissive attitude towards the nurses, saying things that suggest there are unspoken rules that must be obeyed, like "I'm not allowed to have that"; "you mustn't move that" or "(that patient) shouldn't be doing that".
She behaves as though she has relinquished her freedom of choice – the DVT-preventing injections, for example. Although being able to choose food from the menu, she has no idea what it will be like when it arrives (mostly disappointing) and once delivered there are no real options.
On one occasion to add a little to her exercise, I asked her if she would like to accompany me to the lift which is close to the ward, but beyond its immediate boundaries. "Oh no," she said "I'm not allowed out through those (ward) doors..."
My sense is that in this environment, she feels herself to be one of the 'guarded' – while there are those who do the 'guarding' – and who must be obeyed.
From a psychological perspective, perhaps this is not so surprising. Zimbardo conducted a fascinating experiment at Stanford University in 1973 where volunteer students adopted the roles of guards and prisoners. It was supposed to run for two weeks but had to be stopped on the sixth day because he was concerned that there was a danger that someone might be physically or mentally damaged if it was allowed to continue (more here).
In the experiment, an oscillating 'see-saw' effect played out in the relationships. The guards were given – and retained – firm control. The prisoners were totally dependent on them and became more so, while the guards became more derisive towards them, holding them in contempt and letting them know it. As the guards’ contempt for them grew, so the prisoners became more submissive and as the prisoners became more submissive, the guards became more assertive.
I wonder whether, on a very low level, something similar to this happens in older people's wards in hospitals...
When I saw how the staff ignored Doreen's cries for help (see blog post 10th January), even taking into account lack of staff training and other factors, I did feel that on some slight level, she was being punished. And Daisy's reaction, which was slightly siding with the nurses, also bears out the findings of the Zimbardo experiment.
There certainly do seem to be some parallels between the rsearchers' observations of people's behaviour in the Stanford experiment and the dynamics of Daisy's hospital ward and its inmates and there are many issues relating to both, that would make for further, interesting exploration.
*I thought Ben de Lisi had redesigned these thoughtless clothing fragments, but the NHS doesn't appear to have adopted them round my way.
Guess what?
The National Audit of Dementia has identified a need for "significant improvements in hospital ward environments, staff training and the overall approach to care delivery for patients with dementia".
It seems that most wards meet basic safety requirements, but many had not addressed even the simple measures that could lessen the distress experienced by patients with dementia, caused by an unfamiliar and confusing hospital environment.
Underlying this are the usual deficiencies in staff training. For example, less than a third of staff said that their training and development in dementia care was sufficient.
Observations carried out for the audit found that care is often delivered in an impersonal manner, by staff who did not fully understand the needs of patients (right on - see recent blogs about Daisy and her ward of older people below).
And they report that staff neither greet nor talk to patients during care, nor explain what they are doing or offer any choice. Sometimes, staff were seen failing to respond to patient’s requests for help.
The audit was commissioned by the Healthcare Quality Improvement Partnership (HQIP) and carried out by the Royal College of Psychiatrists’ Centre for Quality Improvement in partnership with other organisations. Here's the full text of their article, which makes depressing reading (sorry everyone):
The main audit looked at data collected from 210 hospitals across England and Wales. Ward level data was collected from a sample of 145 wards across 55 hospitals. This included 2,211 staff questionnaires, and 105 observations of care on the ward, carried out by hospital staff.
Key findings from the report include:
The report makes a series of recommendations to help address the problems, including:
Hospitals have begun work locally to address problems after receiving local reports from the audit team earlier in the year. Many have submitted action plans detailing key actions for improvement, including:
Staff on audited wards are working on actions to improve the experience of care, including making sure that staff understand the preferences and needs of the people with dementia they see, encouraging positive communication and conversation, and making sure that leadership from champions and role models is in place to support front-line staff.
Professor Peter Crome, Chair of the National Audit of Dementia Steering Group, said: “This report provides further concrete evidence that the care of patients with dementia in hospital is in need of a radical shake-up. We have a provided a number of recommendations that if implemented will enable patients and their families to have confidence in their hospital treatment. It is good to see that several hospitals have responded to the results of the interim findings with programmes of quality improvement. Hopefully real change will be seen in the results of the next national audit, which is due to be published in June 2013.”
Dr Kevin Stewart, Clinical Director of the Royal College of Physicians’ Clinical Effectiveness and Evaluation unit, said: “We have a lot of work to do to make sure that patients with dementia get the best possible care in hospital. They deserve no less, and we are delighted that the NHS in England has made the care of this group one of its top priorities.
The Royal College of Physicians will work with clinicians, health service managers, the Department of Health and the wider NHS to ensure that we bring standards across the country up to the best achievable.”
Well, you know what? Let's hope so.
Image: http://sugarock99.deviantart.com
Apart from the fire alarm going off for some time, my last visit to Daisy was without incident. The nurses were efficient – walking up and down the bays and the corridors swiftly to locate the source of the smoke that was causing the alarm to be triggered. The dour security men arrived, speaking, incomprehensibly, into their shoulders, where, presumably, their walkie-talkies were located.
It was the day the Concordia cruise ship sank and I was trying not to think about the ramifications of fire-evacuation from a predominantly older people's hospital ward. Daisy was nervous "I mean, I'm hardly going to be able to run out of here if I need to, am I?" she asked in a rhetorical manner. "Well you never know Daisy, you might get lucky and get a fireman's lift," I replied cheerily.
Daisy was tickled by this and after Zimmering her way to the nurses' station so she could see better what was going on and be ready for a quick exit if necessary, she asked one of the security men whether they would oblige. Unfortunately, being darkly uniformed and Very Official, they took little notice. After a while, the alarm was switched off and the early evening apathy of the ward resumed.
We spent time talking more about her job. She had worked for many years at Jones Chalk & Dawson, a posh bespoke tailor in Savile Row that had started up in 1896 (three years before Daisy was born). The three tailors had previously worked together at Hawkes of Savile Row – which later became Gieves & Hawkes – and where one of them, William Jones, had been the head military cutter. In 1902 they received a Royal Appointment by the Prince of Wales, who later became King George V and in 1940, they were appointed by George VI.
I asked how Daisy had got the job. "Well, me uncle Dave used to make all the breeches for the Prince of Wales and me Mum's sister Auntie Kate married him, so it was in the family, really."
"I used to have to go to the shops where the orders came from and bring the work back. The coats would already be cut and the pattern cutters' card and fabric would all be in a big roll. The customers were all Sirs and Lords and Viscounts. They'd come in for fittings – usually a couple. The American customers were very fussy and often had five or six."
"In 1913, I left school on the Friday and got the job the following Monday. I used to go in by bus, although the fares went up and then I used to get on the 'workman's tube' which was very early in the morning and cheaper - 2d in old money (one pence) return."
" 'Course, I needed training, but I was already good at sewing. I only worked on coats and waistcoats. Apart from things like the side seams, which were sewn on a treadle machine, everything was stitched by hand. It was just me and the boss most the the time. You had to keep very quiet 'cause you need to keep yer' eye on the job."
Supper arrives. "Eurgh" says Daisy, "...looks like cat sick" as she surveys the food. I say nothing, but actually, itdoes look a bit like cat sick. "I should try and eat some if I were you Daisy, they won't want to see you losing weight." "Well I have already" she says defiantly, " 'course, there's no way of knowing" she adds sarcastically, "they don't do scales here."
There's still no sign of Daisy moving out of the hospital and her relationship with the staff, which is increasingly familiar, jocular and affectionate, suggests that she feels quite at home really. But after five weeks here, this is hardly surprising. Let's hope this bed-blocking, as her stay has become – and through no fault of her own – isn't preventing someone else getting the help they need.
Image: http://theodin.co.uk/blog/graphic-design/illustration-inspiration-readers-digest.html
Image: http://mliatti.tumblr.com/post/15703801214/inspire-to-age; via http://bit.ly/zUefmz Thanks Alice.
With increasing numbers of people living longer, the way we care for each other needs to change. We certainly all deserve better – and people who will be old enough to need care in the future will the very people who are bound to radically re-engineer them. After all, we are the Baby-boomers.
The statistics show that in the last 30 years, the number of centenarians in the UK has increased fivefold and this growth is likely to continue looking ahead. Unfortunately, the typical care home model hasn’t really changed to reflect these changes. Not unlike pensions, the average care home is still based on concepts developed over a hundred years ago – and in my experience, so is the décor! I suspect that a shift is inevitable –and on its way – that will reflect the changing needs of these new, older people and deliver a contemporary version.
Again and again, I hear my peer group say that what they want is small communities for groups of (preferably like-minded) people – that support them to go on living full, vibrant lives. It usually goes like this, “what we should all do is buy a big old house and get some staff in who can look after us and where we can all live together” – they may or may not acknowledge that this is almost the model of the 60s hippy communes that they are describing.
Unfortunately, it fails to acknowledge that many people have chronic and other old age diseases and problems and this might mean that they may will be be prevented from having the continuing friendships they seek to achieve.
The Eden Alternative in the US is an interesting model, where households of seven to ten older people live, supported by trained care workers who provide a range of housekeeping and personal care assistance and activities. In conventional long-term care, it is the carers who are in the spotlight all the time, but the Eden Alternative say that it is the older people who are the stars. It would be unthinkable in most care homes here, but it is they and their families who become the active and involved decision-makers. The role of the staff there is to support and assist people in ways that allow them to be involved in running the household, from cooking to budgeting and maintain their independence for as log as possible.
Simply doing a better job under the standard model is unlikely to get us where we need to go. It's better for people to live in a place that's about wellbeing, empowerment, growth and development than one that's about decline, disability and death.
Our attitudes towards older people affects how they feel about themselves. It isn’t rocket science – treat them as disabled and this is how they will eventually see themselves. Enable them to play an important part in the way their home environment runs – as they will have done all their lives, after all – can help them remain positive, independent, involved and happy.
It's our relationships with those around us, the connection and sense of belonging we feel, that counts. We need to stop seeing older people in care environments almost as ‘patients’ but instead, acknowledge and respect the fact that they are experienced, growing and developing human beings.
We are cowed by an array of ‘risk’ factors. Why? Perhaps it’s partly because the way we have always done things, actually carries high risks. One of the key questions I suggest people ask themselves about their possible future care is this:
If you like being outdoors sometimes and were choosing – or having a care home chosen for you on your behalf as an older person – would you want to live in the one that offers a ‘one size fits all’ model; that won’t let you go outside and enjoy the fresh air and the garden whenever you want, just because you might have a fall?
Or the one that says “this is as far as possible a ‘home from home’ for people who live here, where people can come and go outside whenever they want to, because we respect the fact that this home is not their prison and we have made the garden as interesting – and as safe as possible.” I certainly know which one I’d choose.
Or if you enjoy cooking, would you want a care home to be chosen that won't let you, or one that encourages you to keep doing it as far as possible and even actively encourages your participation?
I believe that change is coming and that the changes can be accomplished without spending going through the roof, because at its heart, it’s all about attitudes and culture and quality of life. Good care-giving means making people’s lives as rich and as meaningful as possible, central to its ethos. After all, if a life is worth living, it needs to be lived well.
We need to understand that the tasks with which so many care homes seem to be so often obsessed by, should be a given, and make our quality of life – and that means relationships – the epi-centre of care.
