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Media Guidelines on Use of Language in Dementia

05/03/2008 11:26 am

Language is our most powerful means of communicating. Simply using the correct language engenders trust. Never is this more the case than the language we use when talking about medical issues - particularly Alzheimer’s disease/dementia.

Media stories on Alzheimer disease/dementia contribute significantly to the public’s awareness and knowledge of the condition. Increased community understanding about dementia makes the step to seeking diagnosis or support so much easier for the many people with concerns about memory loss. The more that other people understand their experience, the better the quality of life for people living with dementia.

Importantly, positive public images have a multiplier effect on tackling the fear and stigma surrounding Alzheimer’s disease/dementia and help make the issue one that people are more encouraged to acknowledge and address.

By publishing these guidelines, the Alzheimer Society of Ireland is not attempting to police the language others use - it is merely intended as a guide for using language in a more sensitive manner that avoids reducing individuals with Alzheimer’s disease/dementia to a series of labels, symptoms, or medical terms. We hope it will promote consistency across the dementia care sector and be a reference for others to use.

These guidelines are intended to highlight how words and language really do make a difference.

People
Preferred Terms Non-Preferred Terms Rationale

Person/people with dementia

People living with dementia (inclusive of people with dementia, their families and carers)

Sufferer

Victim

Demented Person

Terms such as sufferer and victim contribute to the stigma surrounding dementia.

People with dementia experience changes in their abilities over time. While their need for support may increase as the condition progresses, it is important to avoid language that implies they are helpless.

Choose positive and inclusive terms that maintain the dignity of those affected and are free of value judgements.

Demented person places the condition before the person. People with dementia are individuals first and the condition should not be regarded or referred to as the defining aspect of their life.

The Condition
Preferred Terms Non-Preferred Terms Rationale

Dementia

A Form of Dementia

 Dementing illness There is a need to reflect accurately that dementia is an umbrella term for a large group of illnesses that cause a progressive decline in a person’s functioning.

Condition

Illness

 Disease Dementia is more appropriately described as a condition or illness. There are different forms of dementia and each has its own causes. Alzheimer’s disease is the most common, followed by vascular dementia, frontotemproal dementia and dementia with Lewy bodies.

The Impact
Preferred Terms Non-Preferred Terms Rationale

Heart breaking

Tragic

Devastating

Terrible

Painful

Distressing

Debilitating

Hopeless

Unbearable

Impossible

Appropriate descriptive words should be chosen to suit the audience and the context.

It is important to be realistic about dementia while not being overly pessimistic or frightening.

In particular it is necessary to assist people with early stage dementia to be positive in tackling the consequences of their diagnosis.

The words proposed here are appropriate to describe the intensity of the impact, especially as the condition progresses through to middle and later stages of dementia, when the impact on the person’s life and on those who love and care for them is more severe and keenly felt.
Impact/effect of caring for a person with dementia

Carer Burden

Burden of Caring

It is important to use terms that are emotionally neutral and inclusive. Describing caring as a burden or using burden to describe people with dementia, is negative. While caring for a person with dementia can certainly be challenging, many carers also identify positive aspects to their role.

Technical terms such as burden of disease, used to measure years of healthy life lost due to a condition, are appropriate to use in this technical context.