On one single day this month I had three separate messages from friends and relatives about people living with dementia who had been taken into hospital. I had no links with any of the hospitals, but the reason I’d been contacted was that, in each case, no move had yet been made towards partnership working with the usual carer. Two of those people had a dementia diagnosis, whilst one was simply known to need support because of her cognition.
Of course, an early lack of connection with the hospital teams left the carers very stressed. None of them knew how to initiate the links they knew were needed in order to best support the person they cared for; two were actively distressed because the care being offered was inappropriate. Let me briefly outline the scenarios.
One friend’s mum was very frail and needed active encouragement and support in order to eat and drink. Despite this being clarified to the ward team, no such support was being made available and her condition was worsening. Sadly, no carer sheet had been offered and there was no obvious strategy for any sort of person-centred care – yet without it, the lady would surely continue to decline. I encouraged the friend to request an urgent meeting with the Dementia Lead or Matron for Elderly Care – often the same person; only then was there any form of structured conversation about the help the lady needed. What if she hadn’t had her own advocate?
A gentleman was admitted into a dementia assessment unit. I won’t go into the detail here, as it’s an ongoing situation, but there was a great deal of evidence of inappropriate dementia care. The gentleman’s wife had made it clear from the outset that she wanted to engage with the staff team to help inform his care, but that engagement didn’t happen. Again, I advised my friend to request a formal meeting; only after that did things start to improve.
In the third situation, the closest relatives hadn’t been present when the emergency admission had taken place; they were immediately alarmed and wanted to speak with the hospital team as soon as possible. They were travelling to the hospital; no surprise, then, that I advised them to request that link with whoever who was leading the patient’s dementia care. In this case, though, as soon as they arrived and met the team, they realised that measures were already being put in place to deliver person-centred care and their input was warmly welcomed. The contrast with the first two situations could not have been more apparent.
The National Dementia Strategy reports have repeatedly issued clear recommendations to hospital dementia leads to know who needs dementia-appropriate care, to make provision for person-centred care and to ensure the staff team are educated so that they can then deliver that care. Many hospitals are doing this really well; whatever the size of the hospital, it’s clearly absolutely possible to get dementia care right. In the best of those hospitals, staff positively rejoice in offering optimal dementia care.
If you, as a carer, come across a hospital where this is not evident and you have concerns about someone’s dementia care whilst they’re an inpatient, please feel confident about asking for a formal meeting with the person leading that dementia care. This doesn’t need to be confrontational; you are simply wanting to ensure that the team get to know the ins and outs of how best to support their patient and they should welcome that. List your main concerns and ask that they be recorded in the hospital notes so that everyone knows what you’re concerned about.
And if this all happens automatically – if the staff approach you, welcome you, show that they are glad to learn from your experience, regard you as partners in care and that they are proud to offer excellent dementia care – please let them and the hospital know how much you appreciate that. Yes, it’s what should be happening everywhere, but whilst the campaign to achieve this goes on, let’s acknowledge those teams who are leading the way.