A reflection on my experiences of support for elders living in care homes.

03 July 2015

by Gill Bailey

Over the years I had heard of the three plagues of care homesboredom, loneliness and helplessness – but nothing really prepares you when looking into the eyes of the people experiencing that life.

And this is the way it unfolds for many living in care homes …. a life designed to be safe but empty of anything they care about. At one time we would turn to an elder to explain the world, now we google it – this is a societal issue too, we no longer hold elders in the esteem we once did.

Atal Gawande in his amazing book ‘Being Mortal’ says

‘As our time winds down we all seek comfort in simple pleasures – companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces’

Is this not at the absolute heart of providing good care? And yet in home after home I go to, people are sat in lounges simply because the physical space exists – for no purpose, no rhyme or reason other than to be in one place so that staff can keep an eye on them as they focus on the tasks that have to be done. People become work objects who get in the way of completing the task. In many homes, there is much change required. And as we know, breaking these deep-seated cultures that make institutional routines and safety greater priorities than living a good life is not easy. This is one of our greatest challenges – culture has tremendous inertia and culture strangles innovation in the crib, but this is what we face. It amazes me that there is not more interest or action to change this culture given that we should all have a vested interest!

So that’s the doom and gloom…….BUT despite these challenges, there has been tremendous impact introducing Individual Service Funds (ISFs) to 43 older people living with dementia at Bruce Lodge. The introduction of ISFs has provided good evidence that people living in care homes, regardless of cognitive impairment, can remain the writers of their own story and have the things that matter present in their life. So do person-centred practices make a difference?- absolutely. Person-centred practices help staff to understand that their job is not to confront peoples choices in the name of safety, but to expand them, in the name of living a worthwhile life.

We have a symbol that we have been using on our postcards from our work in Flintshire – it is a very bright light with tiny lights dotted about. I think that supporters who ‘’get it’’ are like the symbol. One of the commissioners chose it on day one of the programme and she thought that as more staff ‘’get it’’ the little flickers of light would become a huge beam.

In Flintshire, we are working in a wider partnership system with commissioners, contracts, providers and regulators. All of the home care organisations and the care homes will use one-page profiles, and person-centred reviews – we are looking to create a real paradigm shift. Have you noticed that we talk about dignity for elders, and choice and control for under 65’s? We are demonstrating that setting the bar at dignity sets the bar way too low!

This November, we are presenting some of our research into care with elders at the UK Dementia Congress this November and so we continue to share person-centred practices widely in the hope it can impact on the lives of more and more elders.

George, who lives in a care home, summed it up last week. He had been told he must not stand up without a staff member alongside him, as he was unsteady on his feet. He said to me ‘If I can’t get up and look at the view of those rolling hills through the window – when I want to – my life is not worthwhile, will you make them see that?’’ It’s unbelievable that a retired judge was reduced to pleading with me to ‘’tell them’’.

Through our work, we endeavour to ensure that people continue to be the authors of their own story.

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Gill

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