'I am not a victim': Tips for reporting on dementia

As the number of people affected by dementia continues to rise, barely a day goes by without it being talked about in the media in some form.

But the manner in which dementia is discussed by news outlets and journalists is not always given the same care as physical disabilities or mental illness.

"Since my diagnosis with dementia, words hurt more than they did before," says Agnes Houston, a reporter with the Dementia Diaries project from On Our Radar. "It’s like prodding a wound. The media should choose their words with care."

Dementia is not a single diseaseTommy Dunne, Dementia Diaries reporter

The Dementia Action Alliance says this "is not about political correctness; it is about changing perceptions and recognising that those who have dementia are people, first and foremost, and that dementia does not define them".

So, the team from Dementia Diaries – who live with dementia and report using custom-built 3D printed phones – have sent in their top tips for reporting on the condition, explaining why certain terms can be misleading or upsetting.

They’ve teamed up with DEEP, who have published a set of guidelines for journalists called ‘Dementia Words Matter’.

Here are their dos and don'ts:
 
Dementia is an umbrella term (and is not the same as Alzheimer’s)

"Dementia is not a single disease, it's a range of illnesses affecting the brain and its functions," says Tommy Dunne, 57, who has lived with young onset dementia for more than five years.

There’s a common misunderstanding about what ‘dementia’ actually is. Dementia is an umbrella term referring to many different conditions – there are over a hundred types, and each affect the brain in different ways.

Alzheimer’s is the most well-known, but Vascular dementia, Lewy Body dementia, and frontotemporal dementia are also common strands.

Certain words, like 'dementia sufferer', do not help

"Words are very powerful – they can build you up or put you down. When you are speaking about dementia remember this," says Agnes Houston from Glasgow, who recently received an MBE for her work raiding awareness about dementia.

There are a range of commonly-used terms which may be offensive to people living with dementia.

• ‘Dementia sufferers’

“On certain days, I do definitely suffer,” explains 59-year-old Keith Oliver from Canterbury, “but I’m not a sufferer.” This is a common reaction among people with dementia, who don’t want to be defined by their condition.

For Gina Shaw, who recently appeared in a TV advert about dementia to raise awareness, the word 'suffering' does not reflect her attitude to life.

"We try not to use the phrase 'sufferers' about people living with dementia," she said. "It just seems a bit uninformed. Maybe their experience has been that [of suffering], but it certainly doesn’t ring any bells with me."

• 'Demented'

The word 'demented' is being gradually phased out.

"Demented is a very unkind word," said Tommy Dunne. "It’s taken from Latin ‘de’ meaning absence, and ‘ment’ from the masculine for mind. Dementia means without mind." To be defined like this is very upsetting for many people with dementia.

• Victim

Many people with dementia refuse to be treated as a victim.

Anne Macdonald, a 56-year-old from Glasgow who was diagnosed last year, explained that "if someone asked if I was a victim, I would need to have been attacked. I am not a victim. This has just happened to me, but life happens. Throw that word out."

• Dementia 'patients' or 'service users'

These terms are seen as reductive by those living with dementia, as they serve to reduce them to the mere state of being hospital bound, especially if used in isolation.

Terms like these can undermine efforts to carry on living as normally as possible.

• Patronising adjectives

Some descriptions of people with dementia may not seem to be unkind, but are considered patronising by those living with dementia.

Gina Shaw argues that these terms are unnecessary: "putting things like 'heart rending case study', it’s all so dramatic and it doesn’t need to be that way."

• Other words to be avoided:

A 'burden', 'living death', 'epidemic', 'senile'

When in doubt, safe words to use are along the lines of a person or people 'with dementia', 'living with dementia' or 'living well with dementia'. Other descriptive terms that characterise the person like ‘a former teacher’ are also advised.

Not all people with dementia are old

"We range from age 30 to the 90s...Dementia is everyone’s business," says Anne MacDonald.

The stereotypical portrayal of a person with dementia is somebody who is old and frail. However, there has been a large increase in the number of cases among younger people. According to Melvyn Brooks, who is in his 60s, this is not reflected in media coverage.

Reporters be honest and reliable in what they sayCarol Ovenstone, Dementia Diaries reporter

"The television continually shows 'old people' with Alzheimer's and dementia," he said. "Why? I’d like to know why because it’s not all old people that it affects. There’s a lot more younger people getting it as well, being diagnosed, so let’s show them for a change, show that this disease is indiscriminate and it affects younger people as well as old people."

The use of stereotypical images can inadvertently reinforce misunderstandings around dementia. Images such as a frail hand or an old, distressed face are often used, no matter what the content of the story, which can undermine the message in the text.

"Very often it's elderly people looking totally bewildered and isolated”, says Jo Bennett, who has early onset dementia. "But people who are middle aged experience dementia.

"A typical picture for me would be a gaggle of people sitting around talking. People in their 40s and 50s. A bit younger than the veined hand and the old lined face you often see. Jeans and a shoulder bag, not an elderly person sitting on a sofa."

Dementia is not a mental health issue

Dementia is often talked about in the same breath as mental health, which creates confusion. Anne MacDonald explained that "mental health is about how you think and feel and your abilities to deal with ups and downs. Dementia is a neurological condition."



This type of reporting can lead to frustrations. Melvyn Brooks complains that "I know what mental health is, I am not going to be told that I am mentally ill. I've got a brain disease – I've got dementia."

Sensationalism and wonder cures give false hope

Sensationalism can be a source of great frustration for those living with dementia, especially tantalising headlines that offer false hope for a new wonder-cure.

Jo Bennett is angry that a recent headline in a national newspaper "claims to have found the cure".

"Of course I knew that wasn’t the case when I saw the news headlines the other night, but of course you have to follow it up to see if there was such a chance… but of course not.

"They put on these great big, wonderful tabloid headlines but when you come to read it, it’s gobshite really, they haven’t got a clue what’s going on and I feel sorry for people who have just been diagnosed.

"They see these great big headlines and those of us who have lived with it for a while know to ignore everything like that.”

This sentiment is shared by Carol Ovenstone, a former nurse, who asks that "reporters be honest and reliable in what they say; not report on false cures and raise hopes. They should actually talk to people who've got dementia."

Keep reporting on dementia and share some positive stories

Despite all of this, people with dementia believe that it’s vitally important to keep reporting on the issue, not only for the purpose of attracting funding, but also to raise awareness and to challenge stigmas.

Some of the more shocking or upsetting symptoms of the condition cannot be ignored, but balance is extremely important, argues Keith Oliver: "the media can project dementia in a realistic, accurate light, but also with an element of positivity attached to it."

Anne MacDonald agrees, explaining that “as a younger person living well with one of the rare strains, we need to get the message out that there is life after diagnosis.”

Dementia Diaries is an On Our Radar project, using audio diaries to document the day-to-day lives of people living with dementia. For individual diaries, visit dementiadiaries.org.

Free daily newsletter

If you like our news and feature articles, you can sign up to receive our free daily (Mon-Fri) email newsletter (mobile friendly).