Just recently, I was part of a discussion which included how often family carers approach me for “a chat” and how it’s typically not initially clear whether they want advice, empathy and understanding from a former family carer, insights into dementia or perhaps skills – in fact, I suspect they often don’t themselves know what it is they want until the chat starts. I then walked away at the end of that discussion and within two minutes, someone I know had approached me and asked whether I’d be happy to arrange a chat about their mum – as if to prove the point!
It’s disappointing, all these years after dementia emerged from the shadows and began to be talked about openly, that family carers can still feel isolated and unsure of where to turn. We’re also in a situation where people are all-too-often “diagnosed with dementia”, rather than properly diagnosed with whichever form of dementia they’re living with – especially when identifying the type might lead to possible treatment and a halt in the progression of symptoms. Combine those two sentences and what we have is a situation where family carers often aren’t even aware that although the person they care for hasn’t been referred to a diagnostic service, they have every justification in pushing for that to happen. Diagnostic services are, of course, overstretched – but how will we ever have adequate diagnostic services if we’re masking the true extent of the need for them?
If the person you care for goes into hospital, that can open up a valuable opportunity to discuss future needs with one of the team on the ward – ideally a dementia champion. It’s crucial that carers are honest and open with the staff team, because that will help the team support the patient whilst in hospital and might even open the doors for better support for both patient and carer afterwards. For everyone’s sake, please don’t be tempted to try to hide what’s been happening at home; everyone living with dementia should be offered support, including the family carer, and people can’t support you if they don’t know what help might be needed!
Carers, you are performing a hugely valuable job, not just for the person you care for, but also for society as a whole. You deserve support, advice, understanding and respect – so please enter into all conversations about dementia care with that in mind.
To the hospital teams and dementia champions / Butterfly Scheme champions who recognise the importance and value of carers, thank you for all you do to work alongside them. Hospital often triggers those first conversations and that’s because you care not only about the patient, but also about the patient’s ongoing well-being, which also means caring about the family carer.
We should all raise our expectations – of full and timely diagnosis, of better support for carers and, with those things in place, the best possible support for people living with dementia.