I should begin this blog by saying I am fully supportive of awareness-raising initiatives aimed at educating, informing and supporting people who are living with any type of dementia, their families, health and care professionals, communities and societies.
The biggest of these, purely for its global scale, is World Alzheimer’s Month, organised and promoted by Alzheimer’s Disease International. It is more than just semantics, however, to question the history behind the naming of this month of awareness-raising, and the signals our words send out.
Globally, Alzheimer’s is a term used in many countries to describe any and every type of dementia. The problem is that technically this is wrong. Dementia is the umbrella term, and Alzheimer’s Disease is a type dementia, one of over 100. Granted Alzheimer’s Disease is statistically the most prevalent type of dementia, but there are still millions of people living with other types of dementia.
In the first ever dementia-related conference I attended after my dad passed away in 2012, one of the questions to the panel was why the UK Alzheimer’s Society wasn’t called the Dementia Society? Apart from the fact that such a change of name would be extremely similar to Dementia UK (another UK charity), the main reason given was the complexity of such a renaming exercise in terms of branding and public awareness.
I understand both the reasoning of the questioner at that conference and the logic of the person answering them. And I suspect a similar answer would fit to the question about why World Alzheimer’s Month is so named, and Alzheimer’s Disease International, and potentially every other Alzheimer’s organisation around the world that carries the world Alzheimer’s in its title rather than dementia.
It can, however, seem very confusing for people who are new to the ‘dementia world’, and very isolating for anyone who is diagnosed with a different type of dementia. Moreover, whilst it might be challenging for organisations to rebrand, there really isn’t any excuse for commentators, media professionals and others who use Alzheimer’s as a blanket term instead of dementia.
One of the biggest problems with Alzheimerisation (a term that I’m using in this context to describe how the word ‘Alzheimer’s’ replaces ‘dementia’) is how it alters people’s perceptions of what is, and isn’t, possible for people who are living with other types of dementia. For example, I vividly remember the following conversation with a lady who was struggling to understand what vascular dementia was:
Ms X: “But there are treatments for Alzheimer’s, why wasn’t your dad given some pills.”
Me: “My dad had vascular dementia – Alzheimer’s medications aren’t licensed for people with vascular dementia.”
Ms X: “But vascular dementia is just another type of Alzheimer’s isn’t it?”
Me: “No it isn’t. Vascular dementia and Alzheimer’s Disease are just two types of over 100 different types of dementia.”
Ms X: “So what is dementia then, isn’t it just another name for Alzheimer’s?”
Me: “No. Dementia is the umbrella term of all of the different types of dementia, of which Alzheimer’s Disease is just one.”
To be fair to Ms X she wanted to learn, but rather than finding my explanation illuminating you could clearly see that she was mentally unpicking everything she’d previously believed to be accurate, and was wondering why on earth we talk so much about Alzheimer’s Disease when it is just one type of dementia.
I first touched on how the word ‘Alzheimer’s’ replaces ‘dementia’ in my 2012 blog ‘So how much do you know about dementia’ – A post where I went on to bust lots of myths about dementia. Some of those myths have received some fairly high-profile coverage since, not least through the Dementia Friends initiative, but the Alzheimerisation of dementia remains very prevalent, and I suspect it always will be.
I would be the first to admit that such an outcome isn’t the worst news in the world if messages that developing a type of dementia isn’t a normal part of ageing, that it isn’t just older people who develop the different types of dementia, and that there is so much more to the person than their diagnosis of a type of dementia become imprinted into the public consciousness and drive real and lasting change that is positive and enabling for people who have a type of dementia.
But I still think we can do more, go further, and make sure that the messages we put out don’t just appear to be confined to people who are affected by Alzheimer’s Disease. I have been an outspoken advocate of changing the words we use around dementia, and will continue to be, but for Alzheimerisation to be reduced everyone needs to play their part.
So, as you take up this World Alzheimer’s Month theme of ‘Remember Me’, it’s a timely reminder to remember that Alzheimer’s Disease is just one type of dementia.
Until next time…