We are constantly presented ^#1 with sensationalist representations of dementia. We are presented with words and phrases such as the following

• Battling Dementia ^#2
• A Dementia Tsunami ^#3
• Suffering with Dementia ^#4

The language being used to report on Dementia is the same sensational language used to report on war. Personally, I am offended by this use of language and would like to see a more considered approach where we are referred to as People with Dementia and people are endeavouring to understand the disease process not fight it. This use of sensational language trivialises us and diminishes and devalues to wonderful research being done by many people today. Over 10 years ago Alzheimer’s Australia published a set of language guidelines that been referenced and adopted worldwide. These guidelines set down five basic principles to guide conversations about Dementia:

“Appropriate language must be:

• Accurate
• Respectful
• Inclusive
• Empowering
• Non stigmatising”

The sensational language we so often hear and see today fails all five of these principles. Indeed I’m sad to say so does much of the written work of Alzheimer’s bodies worldwide.

Today my attention was drawn to this article “How should we talk about cancer?” By Darren Saunders, published by ABC News. His narrative is similar, stating that the “cancer lexicon is littered with both subtle and explicit references to battle”.  He begins his article with the following two paragraphs

“As a cancer biologist, I spend large chunks of my day thinking, talking or writing about cancer.

But I never really gave much thought to the casual, clichéd language I had adopted — until a friend pointed out how upsetting and confronting she found it.”

He goes on to refer to a set of language guidelines recently released by the Cancer Institute of NSW to assist media in reporting about cancer. Most of what is written there is equally able to be applied to Dementia.

I have often said that today our attitudes and understanding about Dementia are at a similar level to what peoples views about cancer were 30 years ago. Lets hope it doesn’t take another 30 years to attain a better understanding.

I propose the following as a basis to develop a set of language guidelines to talking about dementia in a sensitive and responsible way that will inform people.

Guidelines

Dementia is the second leading cause of death in Australia and the only major cause of death that is increasing.

Dementia is a term that encompasses over one hundred and fifty different diseases that affect people’s cognitive abilities.

Currently there are no cures and very few proven treatments.

All forms of Dementia are ultimately terminal.

Dementia is not a disease of age but it is more likely to be diagnosed in later life.

Dementia Language

Being diagnosed with a form of Dementia is a very confronting time for anyone young or old. It is often a turning point for that person and their family and friends. For most it is the beginning of a journey into uncharted waters. Much of the language commonly used about Dementia promotes stigmas, inadvertently labels people, and misinforms people. It can be very confronting for the person with Dementia and their families.

We are not “sufferers” we are People with Dementia, nor are we “consumers” in that we have no choice about the disease. Each person is unique and our journeys with Dementia are unique as well. While dementia is a terminal illness we can and do live rewarding and productive lives.

Dementia The Disease(s)

Dementia refers to a group of diseases (over 150) that are characterised by differing cognitive impairments. Memory loss is a common symptom but not of all forms of Dementia. Alzheimer ’s Disease is the most common form of Dementia particularly in those over 65. Dementia is not part of normal aging, but age is a “risk” factor. Over 20,000 people in Australia with Dementia are under 65 years of age.

Dementia As A Disability

People with Dementia can live rewarding lives and contribute much to society. Dementia satisfies all criteria to be regarded as a disability. As such people with Dementia can and should be supported to continue to live their lives as they choose.

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^#1 I almost did it myself by using the word “bombarded”

The following are the results of an internet search on these phrases.

^#2 Over 950,000 “google” Hits

^#3 Over 300,000 “google” hits

^#4 Over 1,100,000 “google” hits