Published: 1 August 2023
A recent post of mine on LinkedIn resulted in a huge response in a short time.
When it comes to dementia the responses made me realise what a massive divide there still seems to be between the ‘professionals’ and the people living with dementia and their families.
Many professionals raised concerns about fighting stigma, dignity, and person-centred care. How we should be focussing on improving education and training, and to be honest, they are not wrong. The fact that we are having to talk about training medical professionals on how to converse with people living with dementia is sad and we are way too late but as they say, better late than never.
People living with dementia and their families had very different reactions and were very positive, they could see the benefit of the ID Band. They could see that while person-centred care is still seriously lacking, this band could help them or their loved one become more visible, make people aware they may need more time to respond, to understand something or that the person may be unable to speak for themselves at all.
I became more aware of the divide not only through the comments on LinkedIn but also by looking at the different platforms I used to talk about this ID band. The groups where I posted this information are groups of people living with dementia and their families or carers. The response from these groups has been overwhelmingly positive.
People living with dementia commented on how they might get better care if they were more visible.
Some of the comments were:
‘My wife got lost in a hospital because she wasn't guided beck to the proper room after a procedure. 10 minutes of fear’
‘if we’d had this for my mum, maybe she wouldn’t have become dehydrated in hospital’
‘I would welcome this, I have the beginning of Alzheimer’s and have trouble saying what I need sometimes’
‘it’s all well and good people banging on about person-centred care but it doesn’t exist so if I want to help my da, I will and no-one’s going to stop me’
‘I love this at least we dont have to be explaneing all the time'
People living with dementia are not afraid of the word dementia, what they are afraid of is how we all react to the word.
We talk about using a colour (purple) or some other signal, but are we missing the point - these are all labels so why do we shy away from the word ‘dementia’ but we accept the colour purple or some other indicator like a butterfly etc? People living with dementia can read the word dementia but can’t understand the colour purple or what a butterfly means?
How can we fight stigma if we are too afraid to say the word out loud. We mention other ailments but when it comes to dementia, we go quiet.
Dementia is here, and it’s here to stay, at least for now. We have an aging population, so we need to man up and fight stigma from the root. Dementia is not a swear word, it’s not a dirty word, it’s a neurological condition which, as we speak, affects more than 55 million people worldwide with the numbers increasing year on year.
Dementia to me is a word which says a person has a particular medical condition -
It tells me a person could have many different symptoms
It tells me that every person has individual needs
It tells me that I need to adjust how I speak to someone
It tells me I need to listen better
It tells me I need to take more time
It tells me I need to focus more
It tells me I need to offer more support
It tells me I need to be open for many different changes
Dementia is not the person; dementia is the ailment.
Dementia is not a swear word, it’s not a dirty word, it’s a neurological condition.