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How do you get hospital staff to walk in the shoes of people with dementia?

  • Comments (70)

Yesterday I went to see a play Inside out of Mind. Based on a dementia admissions ward it told the story of staff and patients. It captured the chaos, noise and unpredictability of the ward as well as the emotional and physical demands of caring for people with dementia.

We saw how staff formed close bonds with patients and cared deeply about them but were challenged by some of their behaviour which clearly upset and confused patients. I was upset by one scene where staff and patients sat together wearing witches hast for a ward Halloween party – well-intentioned, but please don’t do it to me if I end up on your ward!

It was evident in the performance that not only patients but staff become institutionalised. In response to a question “Where do you go for help?” one of the characters - a ward sister- says “We keep it all inside”.

But this play is not fictional, it is based on research conducted on dementia wards. Justine Schneider was commissioned by the UK National Institute for Health Research to carry out an overt participant observation study of health care assistants caring for people with dementia.

The researchers worked as supernumerary HCAs in three wards for people with dementia and behavioural problems.

Commissioned to inform policy and workforce planning, I expect the final report could, like countless others, have sat on a shelf gathering dust. Justine tried to organise feedback sessions for staff once the report was completed but the attendance was poor.

She wanted to find a different way to communicate what she had observed to others. So she approached a theatre company to write a play based on the transcripts. Her hope is that Inside Out of Mind “will help people to understand that dementia care is not easy, wherever it is provided, and that the people who do it well deserve our admiration and respect”.

I watched the play with an audience of HCAs from three trusts in Nottinghamshire who were visibly moved by the performance. The trusts had arranged for staff to see the play and attend workshops to discuss the issues that arise.

I am not claiming this one play could change the face of dementia care but as part of a strategy to educate staff across large organisations it appears to be a refreshing and exciting approach.

I am fascinated by the collaboration between researchers, NHS trusts and the arts working together as a way of helping staff to walk in the shoes of people with dementia. It has also helped outsiders like me walk in the shoes of healthcare assistants.

For more information about “Inside Out of Mind” visit www.lakesidearts.org.uk.

  • Comments (70)

Readers' comments (70)

  • Anonymous

    I like the out-of-the-box thinking of creating a play - but isn't

    Commissioned to inform policy and workforce planning, I expect the final report could, like countless others, have sat on a shelf gathering dust. Justine tried to organise feedback sessions for staff once the report was completed but the attendance was poor.

    true all too often? Very difficult to change anything in the NHS and healthcare.

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  • I really like this idea of a play to support education and training of staff in dementia care. For me dementia training should be blended learning approach and it worries me that the focus is on 100,000 nurses receiving training via e learning. Yes elearning can be part of the training however it should not be the only dementia training staff receive. We shouldn't underestimate the impact of real life stories from carers and people living with dementia often much more powerful than any written programme.

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  • Anonymous

    My father has advanced Alzheimer's and after years of looking after him at home, we had to place him in care at the end of last year. We visit daily and have him out most of every weekend.

    The atmosphere in the home is chaotic at times because of the client group. There are not enough staff, but most of them are good hearted and work very hard with such challenging residents. I have to say that I agree with the institutionalisation of staff. They are trying to care for people with very few staff, resources and basic training. The result is that they barely cope.

    This weekend, they are having an afternoon of entertainment, where a local singer will come in and bawl at them using a microphone (in a relatively small lounge) accompanied by a pre-recorded backtrack. We will keep my dad out for the day as usual, because this is his idea of hell. Some of the activities are so inappropriate that I wonder who is thinking this stuff up. Every time I visit, most of the residents are herded into the lounge area where they are easier to supervise. The staff are endlessly filling out mountains of paperwork, so familiar to us all in healthcare.

    We need to look at adequate staffing levels, workloads, decent wages and better training for those we expect to look after our relatives with dementia. Plays are nice to make the point, but the solution to proper dementia care is going to take a lot more investment.

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  • tinkerbell

    Anonymous | 18-Jun-2013 6:05 pm

    Sadly sounds like most of the 16 care homes i visit. Mostly well intentioned but ............................................ same old, same old, not enough staff, not enough one to one individual meaningful activity, limited understanding.

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  • Anonymous

    you don't get anything for nothing in this life, even though the patients may be paying very high fees, until the homes get better subsidies and are prepared to spend money where it is needed nothing will ever improve.

    apparently other health services with higher standards of care also spend far more per capita than the UK.

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  • Anonymous

    Anonymous | 18-Jun-2013 7:23 pm

    Of the 194 countries listed in the latest WHO list, UK comes in at 17. (Probably lower since the latest incumbents came to power) In reality, there isn't a huge amount of difference in amount spent per capita on healthcare in those countries sitting between 11 and 24 (which includes many countries in Europe and Australia and Japan). In Denmark, which comes in at No.7, they pay tax at a rate of 60% to cover a very comprehensive and generous health and social care system. The US comes in at No.1 for the amount spent per capita and is far from decent in terms of healthcare provision.

    It is about how each country's healthcare system is run. A lot of money has been thrown at the NHS and our Social Care System, but it has been grossly mismanaged. We gave the money to incompetent idiots.

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  • Anonymous

    Most care homes are run for profit, either by individuals or companies. The higher the fees, the more the shareholders receive. It doesn't go into patient care or staff numbers, training, resources, etc. Expect more of the same in our increasingly privatised NHS.

    In any case, the current accepted Care Home minimum standards are too low and not properly thought out or regulated.

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  • tinkerbell

    Agree with both posts above, this is what i see. Some of the homes are kinder than others, but they are all ruled by profit, no matter how much the care home staff may care, the managers are ruthlessly driven by profit.

    Minimum standards are too low and our money has been wasted by idiots.

    As soon as the private homes find they can't manage challenging behaviour they can serve the resident notice to quit or get them admitted onto a general ward and refuse to have them back, or as one home manager kept phoning me frantically this week saying 'i want him out of here by tomorrow'. What an actress though when she met with the family pretending to care about his best interests.

    All very sad.

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  • Anonymous

    tinkerbell | 18-Jun-2013 11:17 pm

    "As soon as the private homes find they can't manage challenging behaviour they can serve the resident notice to quit"

    Seriously? What about duty of care? Surely they can be sued for failing to provide adequate care? I thought that there has to be a contract.

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  • tinkerbell

    28 days to find them an alternative placement. Yep. The duty of care appears to fall back to us in the NHS to find somewhere else for everyones safety. They do this to speed up the process of getting them found somewhere else quickly when they don't want them anymore or they don't fit their cherry picking criteria anymore or can no longer fund themselves, or, or, or. Suits them to take them in the first place when the money's rolling in up to the point where they become hard work.

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