Guest blog

Guest Blog – Don’t Say the ‘D’ Word

Blog from Nathan Stephens

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Hi and thanks for listening. I’ll admit, this blog is one big blurp that has been heavily influenced by my experience as a dementia carer and the seeming absence of a dementia narrative from those living with the condition, and more recently by my exposure to structural forces in the field that have a significant role and responsibility in shaping the dementia narrative.

I feel as though this topic has become a bit of a campaign for me of late and I would be highly appreciative if you had an opinion on the questions I pose to get in touch by email – my contact is at the bottom of the post.

Dementia awareness has excelled through the direction of successive national strategies which has undoubtable influenced public opinion, and political appetite for positive social change. However I believe there is much to be done to improve the dementia narrative which can sometimes be inadvertently misleading from those ‘inside’ the dementia arena.

In my years working in dementia care with people at all stages of the disease, worryingly I can only recall a very limited number of times actually using the word dementia when in conversation. Why? This ‘why’ question has sat uncomfortably, but until recently, passively, in some cavity of my brain. Understandably, when you use the term dementia it isn’t always well received, but I mean, the message isn’t received at all in some cases. People just don’t entertain the idea that they may have been diagnosed which doesn’t help them understand and adjust to the changes they are experiencing. Margaret (my nan) is a prime example. I’m more confident to use the ‘D’ word with Margaret (which is an interesting question in itself), but I really do question the usefulness of this, because Margaret 1) doesn’t accept her diagnosis, or worse doesn’t believe it; and 2) has poor knowledge of dementia despite living with it, which is both a cause and effect of her diagnosis denial. Both of which mean Margaret is not receptive to support which is essential to help her, and in the process, us (my Dad and I), adjust to the changes dementia brings.

The answers to these challenges are full of many complex layers that a PhD couldn’t even unpack fully, but I strongly believe that how dementia is framed by those ‘inside’ and ‘outside’ the field is the first frontier. By framed I mean: what is the mainstream dementia narrative? How has that narrative shaped the defining attributes of culture such as public opinion, attitude and belief, that in their totality, along with other elements, is a mechanism for culture creation and destruction. I believe the said challenges I and I’m hoping other face can be loosely aggregated and attributed to culture.

Unfortunately, as with other pressing and well deserving public health challenges such as homelessness and substance use, public opinion, attitudes and all the rest of it are just not shaped to support positive cultural change, or system change in other words, and people become polarised and marginalised from society.

I guess what I’m trying to say, 500 words later, is that how the narrative is framed or politicised in many cases, will ultimately determine how it is managed. For example, you don’t need a doctorate to understand what dementia looks like, just Google Image search it right. If you were to form a definition of ‘dementia care’ from the google search what would it look like? Mine would read something like:

“Dementia care is provided in healthcare settings by healthcare professionals to old, white, middle-class people”.

In some areas such as Worcestershire where I’m based, over 92% of the population are White British, so this definition, while crude, may stand up. But what is certain, demographic change, and by that I mean not only an ageing population, but an ageing population that will be much more ethnically diverse, should make us inside the field think with purpose and vision about how we frame and subsequently influence public opinion. In our alleged ‘democratic’ state the electorate leverage social change, so ensuring the general public have the right opinion, is, for me, infinite.

Since starting my PhD and taking advantage of the opportunities that have presented I have become increasingly frustrated. Too frequently those ‘inside’ the field doing exceptional good work to improve people lives unintentionally create barriers for doing just what they set out to achieve. Take for instance the Christmas smash ‘do they know it’s Christmas’ that raised a considerable amount of money for a deserving cause, yet was heavily criticised for suggesting African citizens were oblivious to Christmas among other concerns. Or if your fans of ‘The Office’, Michael Scott frequently fits the template of someone trying to do good while simultaneously doing not so good – take a look at their sketch on diversity training.

Admittedly in premature PhD tenure and oversimplifying a huge and complex topic, but I believe the slow progress towards ideals of dementia is partly caused, and in many cases, self-perpetuating, because of the way structural forces that referee culture frame dementia.

I would like to end this post by posing some questions relating to the picture below. The image is a real-world example that I have encountered and challenged, so hopefully I’m not saying anything here I haven’t already voiced. Apologies if I cause offence.

• What are your initial thoughts and feelings when you look at this image?
• Juxtapose this image with the notion of living well. What do you find?
• Juxtapose this image with the notion of living well with dementia. What do you find?

 

The image is the front cover of a regional dementia strategy running from 2019-2024.

Ta

Nathan – n.stephens@worc.ac.uk


Nathan Stephens

Author

Nathan Stephens is a PhD Student and unpaid carer, working on his PhD at University of Worcester, studying the Worcestershire Meeting Centres Community Support Programme. Inspired by caring for both grandparents and personal experience of dementia, Nathan has gone from a BSc in Sports & Physical Education, an MSc in Public Health, and now working on his PhD.

 

 

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Nathan Stephens

PhD Candidate at Association for Dementia Studies, Worcester.

Working on the Meeting Centres Support Programme (see link below), specifically to understand regional approaches to 'scaling up' Meeting Centres nationwide.

https://www.worcester.ac.uk/about/academic-schools/school-of-allied-health-and-community/allied-health-research/association-for-dementia-studies/ads-research/uk-meeting-centres.aspx

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