Social media often gets a bad press, sometimes justifiably so, but it can be an amazing place to connect with people who share our views and experiences too.
Something came my way last week that fits into that positive category perfectly. It was this:
Great point well made ⬇️ @neilmcrowther
This is Dorothy. A face, a smile, a person. My nan. She had advanced dementia, and died shortly after this photo
Bet you didn’t even notice her hands?
— Ian McCreath (@IanMcCreath) June 21, 2021
And on the same thread there was also this:
Amid all the bleak messaging of #DAW2021 I thought I’d share this clip of my dad – who by then was struggling with all kinds of daily stuff & needed support – dancing to Cotton Eyed Joe. People living with dementia have fun! Who knew? pic.twitter.com/KlPNGKqfOr
— Neil Crowther (@neilmcrowther) May 14, 2021
From Neil and Ian’s tweets I was instantly transported back to a blog I wrote in April 2013 entitled “He used to look so handsome”:
I opened that blog with this paragraph:
“Never has the idea that a picture can tell a thousand stories been more true than when it comes to caring for our older people, particularly those with severe physical or mental health problems.”
The imagining issues that are associated with social care bear remarkable similarity to the language issues that many of us have been talking about in relation to dementia for years. One of my many blogs on that topic was published by Health and Social Care Alliance Scotland and was entitled: ’How words can make or break us’.
Yet, as Neil points out here, little changes:
Small selection…. pic.twitter.com/zElEZ8nIlw
— Neil Crowther (@neilmcrowther) June 21, 2021
Despite there being ample opportunity for change:
BTW we’d be really keen to build on our work around the language of social care with work on changing the visual story – are there photographers out there we could work with? https://t.co/E4uGWLAeuM
— Neil Crowther (@neilmcrowther) June 21, 2021
More than just window-dressing and semantics
To those people who say that images and words are just window-dressing, semantics and that it’s irrelevant, I maintain that negative stereotyping perpetuates stigmatised views that mean people are reluctant to talk to their GP if they have a health concern like dementia, and even more reluctant to engage with social care services when they are given the appearance of being grim, dark and miserable to the point that you’d never in a million years want to engage with them unless you had no other option.
The problem with these dual issues is that significant numbers of people delay being diagnosed with health conditions like dementia (or indeed aren’t formally diagnosed at all). They are then largely unsupported by the health and social care systems, placing huge pressure on family and friends to care for their loved ones without any training and precious little (or no) financial support.
Against that backdrop it’s no wonder that carer breakdown is happening across the country every day, accelerated by the effects of the COVID-19 pandemic, as highlighted by Carers UK in their Carers Week 2021 report ‘Breaks or breakdown’.
So, it isn’t just semantics or window dressing, it’s important. Yes, changing words and images won’t magically ensure every person who is developing a health condition will be diagnosed, nor will it deal with the many issues affecting the social care system, but it’s something that can make a small difference and it’s so easy to change.
How do we do things differently?
With the major media outlets I’m convinced it’s pure laziness to illustrate their commentary on topics like social care and dementia with tired, outdated images, and resort to phrases like sufferers and wanderers. But what does doing things differently in the narrative and imaging of dementia and social care look like?
I recently wrote this guest blog for Care Choices all about walking and dementia. I knew we’d have to include the term wandering as it’s so widely used, but it’s contextualised to not only explain why it’s the wrong terminology, but to showcase the positives of supporting a person with dementia to walk and how this can be done.
As a result the reader is informed and educated, and anyone with dementia who they support is likely to benefit from that practical advice. As a plus point, it’s illustrated with a lovely positive picture too: proof that words and images can be used as a force for good.
One of my great passions since I began this blog, and through all of the other writing I’ve had published, is to share ideas, solutions, give tips and advice, and most of all give individuals and families hope. There are so many issues and barriers that people face when they are coping with health challenges, the effects of ageing and/or having to engage with health and social care services, surely it is beholden upon all of us who publish words or pictures in the public domain to make sure our information is a) accurate, and b) offers something to our readers and viewers that can help them.
Living well with dementia
I shall, therefore, end this blog in solidarity with Ian, Neil and others by sharing an image that – in my view – is all about positivity in adversity.
This is my dad on his 80th birthday, in a pub with a pint (with no teeth and in a wheelchair, but that isn’t the focus of the picture).
It’s a photo that any readers who’ve heard me do a conference speech may well have seen. I use it to show that my dad’s latter years with dementia weren’t all bad. That living in his care home wasn’t all bad either. Yes, we had our challenges, many challenges, as I have frequently and openly shared (this is just one example: ‘Putting your head above the parapet’), but alongside sharing those challenges I also want to share the positives. The moments that inspired what I said at the end of my G8 Dementia Summit film:
“I would have him back in a heartbeat, dementia and everything that it brings, I would have my dad back because he was still my dad, he had dementia but he was my dad, and you only get one dad.”
By sharing the positives I hope I might inspire others to feel that if they have concerns about the development of dementia (or any other health condition) that it’s better to address them, get support earlier than we did (see my blog: ‘Ten lost years’) and move forward on as positive a trajectory as possible, hoping and aiming for their own moments of positivity like we tried to find and enjoy with my dad.
Until next time…