Back in 2013 at the G8 Dementia Summit, I made a 2-minute film to talk about me, my dad and our years with dementia – a poster was created that quoted me saying:
“You become a carer, but you don’t realise you’ve become a carer.”
For me that statement really sums up how dementia crept up on us as a family, and how, bit-by-bit, dad needed more and more help and support. I’d like to think that dad’s story would be an unusual one now – going 10 years without a diagnosis in these days of increased awareness is, I hope, not the norm – but my recent personal and professional experiences suggest that there are still significant delays in people seeking help, with partners and other family members becoming carers in all but name in the meantime.
Carer identification has been a hot topic in the many years I’ve worked as a Campaigner, Consultant, Writer and Blogger. I’ve sat in meetings with everyone from government officials to academics discussing how we might identify carers better, coming to my own conclusion that just like me – when I viewed myself as a daughter looking after her dad – so most ‘silent carers’ only see their relationship to their loved one, not how every month they are taking on a little bit more to maintain what might be called the status quo.
Dementia carers are particularly adept at this since most people who are living with dementia develop symptoms gradually, unlike caring for someone who has a sudden acute health episode in their life like a heart attack or stroke. How we reach out to silent dementia carers is a key concern of mine, not because I believe we need to boost dementia diagnosis rates with false targets, but out of a human concern for people who in all likelihood would benefit from some low-level advice in the earlier stages of their loved one’s dementia but are a long way from accessing it.
If you’re reading this blog, you probably aren’t in that bracket. Silent carers generally don’t frequent social media or search online for information. I didn’t. Why would you? As I said earlier, you only see the relationship you have with your loved one rather than how that relationship is subtly changing. It often takes someone from the ‘outside’ to notice, as I’ve done on many occasions with people I’ve known well or only just met.
While all the standard advice about encouraging people to see their GP is important, I feel passionately that information about changes you can make today – regardless of a diagnosis – is just as important. Making modifications to the environment to help your loved one navigate around their home, or putting up a simple list of instructions for how they can make a cup of tea, helps right now.
With few treatments and no current cure for any type of dementia, alongside the residual stigma that I believe means people are more comfortable going to their GP with a query about potential cancer than a problem with their brain, the messages about how we enable a person to live as well as possible and to minimise carer breakdown are vital. Supporting independence, choice and control from the earliest point of dementia symptoms makes life easier for everyone, and means that if/when a diagnosis comes the family haven’t already hit a crisis point, unlike us with my dad.
For me, communicating messages about how low-level changes and support at home and in everyday life can help is something we can all do. Keeping connected with family, friends and neighbours, noticing those subtle problems and making small suggestions helps to disseminate ideas about how to cope better pre or post-diagnosis to individuals who are unlikely to ever be googling how to do it.
I signpost to resources, initiatives, toolkits and practical advice constantly, whether I’m writing an article, speaking at a conference, or because I’ve got chatting to a couple in a café that I’ve never met before. I’ve even been known to give books on dementia – like Wendy Mitchell’s ‘Somebody I used to know’ – as a present to provide information that I know couldn’t be easily discussed. Anything that helps a silent carer to find ways to make life even the tiniest bit easier is important. As a well-known supermarket is always telling us, “Every little helps.”
Thank you to carer, turned award-winning writer, Beth Britton for sharing her her tips for reaching out to dementia carers who don’t realise they are carers.
The word ‘carer’ can be associated with feelings of resentment or a loss of identity, but if someone with dementia relies on your help you’re covered by our use of the term – and you’re still lots of other things too.