Make Yourself at Home | QCS

Make Yourself at Home

Dementia Care
August 29, 2013

What do you make of this statement?

‘Environments that offer minimal private space and more public space result in competition for control and supremacy. In staffed supported living environments this competition is invariably won by support workers. Communal rooms become gathering places for operational convenience, shared care activities, or worse, social venues for staff.’

This is a quote from a blog post in Community Care online today that got me thinking. I had been in conversation earlier with a registered manager, who was lecturing staff about the state of the carpet in the lounge of the children’s home she ran. Since none of the youngsters took food or fluids by mouth, the coffee and coke spillage was exclusively the staff’s own work. She was right to be appalled and they should have been ashamed.

The fact is that, as much as we would prefer not to agree, the sentiments in the quote above ring true for many care establishments.

Think about how often you are in a communal lounge and the TV is showing some programme which is irrelevant to the people who live there, but much commented on by the care team. I refer you to The Jeremy Kyle Show as an example. Do the service users really enjoy the content of ALL daytime telly shows?  I once observed a pair of care workers participate in an entire episode of ‘Pointless’ while the resident young women were passive observers. So passive in fact that one of them was sliding off her chair and the other was removing the fringe from a cushion.

In your living room, are the records of your daily life left about on the table? I have seen care plans abandoned so, or stacked up on the dresser when not in use. The duty roster is not usually part of the coffee table literature in our house – is it in yours?

Do the staff ask permission to sit down on the sofa beside the people who live there? Or is it the other way around? Are there sufficient seats for staff once the residents have gotten comfy, or do the carers have their ‘usual place’?

Are the ornaments and decorations chosen by service users? Are there cushions and rugs about? Lamps? Plants and family photographs? How much is the lounge at work like the lounge at your place?

OK – enough squirming now.

The blog post was praising single-person tenancies over group living for people with learning disabilities, on the basis of their encouraging independence and reducing reliance on staff for daily living support. It argued that, with less direct staff input, service users became more self-sufficient and as a result enjoyed greater social inclusion. Of course it would say that, as it was written by someone who represented a provider of such tenancies. But they made some interesting points and, in my experience of many types of care and support, I would agree that for many service users, full independence in a home of your own is an excellent option.

However, what of those who find that level of independence too exposed? Many people with learning disabilities have never been alone, having been in shared accommodation or with parents and siblings their whole life. I have known people who couldn’t sleep in a room of their own, who haunted the staff constantly for company. I know of a woman who found living alone so traumatic, she would befriend strangers in the supermarket and invite them back for tea; a risky strategy.

Living alone has benefits and drawbacks for all of us. I imagine for those of us with families or sharing their living space through necessity, it represents an ideal – nobody else’s noise, nobody else’s stuff. For those, on the other hand, who are single and solo, the need to have someone to share things with can be tantalising.

The key message is that we are all individuals and we all have our own specific needs and desires. This is true of the people we support and we all understand how important person centred care really is. This means there should be a choice of lifestyles and a choice of living arrangements for everyone.

Access to tenancies is limited but should be made easier; the blog article cites cases where this is in fact a cost effective option for commissioners. But for those people who prefer not to live alone, or for whom full independence is not an option, we can help respect space and basic human rights by the way we behave in their home.

Always remember, this is not your workplace, this is someone’s house. When you enter, do so with their permission. Don’t leave your things about the place and if you do drink coffee or tea, do so with the people who live there at their invitation. Ask whether they want to look at TV, or listen to music, and never change channels unless you are doing so for the benefit of the homeowner.

If possible, keep paperwork out of the lounge and ensure respect for confidentiality is secured. Don’t hold handover meetings and care reports over the heads of people sitting in their living room. If you must have such discussions, then include the participants fully and make it their conversation.

If this seems like stating the obvious, then forgive any offence I may cause. I know that there are many excellent services that promote dignity and respect – I have worked in some brilliant ones. But I watched the registered manager of that (outstanding) children’s service today and I saw the staff shuffling awkwardly when she indicated the state of the carpet. And as we spoke to them about how rude and disrespectful this was, the guy with the carpet shampooer let himself in and calmly went about the business of setting up his machine without even a nod to the young people who were enjoying a DVD at the time.

Mi Casa es Su Casa? Make sure you give the people who live there the right to choose.

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Ginny Tyler

Learning Disabilities Specialist

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