Dementia Terminology – What is appropriate?

Lonely Older Woman

The world as we know it today has gone politically correct mad. We cannot even have a “blackboard” in schools anymore despite it being, in fact, a board that is black in colour. It must now be a “chalkboard” to avoid causing any upset with regards to race/skin colour. Now, of course, I fully believe that everyone should be treated equally regardless of skin colour, religion, sex, preferences or life choices. I think that we are often taking things too far and are even sometimes causing problems where none need be.  

One such instance in my opinion is the push to stop describing people living with dementia as “sufferers”. For the past 2 years I have worked with dementia residents at all stages of the care process. As an activity professional, it was my role to make residents feel comfortable, happy and fulfilled. That being said, I simply refuse to believe that they do not suffer – not only the individual with dementia but their families and friends too.

I understand where this desire to remove suffering from existence comes from but we cannot do so by simply changing a label. “A rose by any other name would smell as sweet” as they say.

By being so politically correct on this, are we in fact removing ourselves from the seriousness of this awful condition?

I’m my opinion we are. The media continues to portray Dementia (in any form – Alzheimers etc) as merely memory loss. (To quote The Guardian: Mitchell said he had first noticed symptoms of the condition in 2009, just before Windsor left EastEnders for the first time when she began having difficulty learning her lines. – In reality there are hundreds of physical and mental symptoms that are far worse than struggling to remember things.  

Figures published in 2010 by Alzheimer’s Research UK put the combined UK spend on cancer research by charities and the government at £590m compared to just £61m for dementia.

Is this partly because we portray Dementia as something you can “live ‘well’ with”? Cancer is a word that strikes fear in most people’s hearts as soon as it’s brought up in conversation and yet Dementia is estimated to affect 800,000 people in the UK and 44 million globally – a figure expected to treble by 2050. It costs the UK £23bn a year, more than cancer, stroke and heart disease combined.

Is suffering ‘required’ for people to realise how bad something really is and for the correct support and funding to appear? Would people give more freely to Dementia Charities if they could see how bad it really can be? Would shock tactics make people sit up and listen rather than stating that people “live well with dementia”.  

Dementia can be a terrifying condition with hundreds of symptoms. Every person is affected differently and there are various types of dementia which affect the brain and body in different ways. To collectively say that suffering does not happen is in my opinion detrimental for progress in a common understanding and knowledge of the disease.

If we look at the word “suffer” it can mean different things to different people. Some people believe they suffer if they miss an episode of their favourite show, or have to study, or work on the weekends. Some people see suffering as more physical pain, such as wearing new shoes or pushing hard at a gym class. If these seemingly insignificant situations can be accepted as “suffering” then I fully believe that living with dementia and all the life-altering symptoms can surely be described this way.

In conclusion, it is my opinion that whether we state that people living with Dementia suffer, struggle, manage or live well, one thing is clear. More focus and effort needs to go towards support, understanding and funding, rather than debating on what we can say without offending people. Those actually living with the disease have far more pressing issues to deal with than the political correctness of others.

Opinion Piece

Jenni Mack – Head of Best Practice, StoriiCare

2 Comment

  1. Well said Jenni.
    I think we really need to underline the difference between encouraging people to continue to do what they can, rather than dwell on what they can no longer manage alone. And, understanding, the suffering of individuals and their families when they are frustrated by what they can no longer do, and worse, when the dementia means that they can not even get out of bed, feed themselves and/or swallow food.
    Deterioration over the years to the point of fetal position curling and the size of a young child is something that many people suffer and their families/friends/carers suffer alongside them. It is this stage of dementia that receives very little media coverage.

    As you know, at Bright Copper Kettles CIC, we encourage Activity Coordinators and Lifestyle Managers to support people with dementia to ‘live well with dementia’. In the past, much of the suffering experienced by people with early to mid stages of dementia has been caused by others assuming that they can not do things for themselves, when in fact they can (with a little support and understanding).
    I should also point out that, where complaints have been made against certain newspapers, these have often come from the individuals themselves, due to the fact that they were specifically fighting against the discrimination they’ve experienced and the stigma attached to the dementia label. They had told reporters not to use the word suffering in the article (s).
    Another great article from you that brings an important subject to the fore for discussion.

    1. Thank you Caroline. Couldn’t agree more. Bright Copper Kettles is a wonderful resource for activity professionals. Thank you for creating it.

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