How to talk about dementia

Dementia is a very common condition, in Australia and around the world, but there’s still a lot of misunderstanding and stigma around it.

The way we talk and write about dementia makes a difference. The words we use affect people living with dementia, their families, friends and carers. They also affect the public understanding of dementia.

Casual misuse of words, or using words with negative connotations, can have a profound impact on people with dementia, their family and friends. It can also influence how others think about dementia and increase the likelihood of a person with dementia experiencing discrimination.

Respectful language recognises that dementia isn’t necessarily the defining aspect in the life of someone with a diagnosis.

Appropriate language must be:

• Accurate
• Respectful
• Inclusive
• Empowering
• Non stigmatising

The best place to start in talking accurately and respectfully about dementia is to understand what it is.

The basics: facts and myths about dementia

Dementia is a brain condition. Dementia is not a normal part of ageing. Dementia can have many causes. It can have physical as well as mental symptoms.

Dementia can affect someone’s communication, planning, problem solving, behaviour, mood and sensory perception.

Dementia isn’t contagious, and it’s only rarely genetically inherited.

People of all ages, from childhood up, can experience dementia, although it’s more common as you get older.

There are no know cures for dementia and few effective treatments, but research is ongoing.

Everyone’s experience of living with dementia is unique, as there are many different types of dementia and symptoms may present differently in different people.

Find out more on our Dementia facts and figures page.

Don’t know what to say? Ask

Individuals and families will express their experiences of dementia in ways that has meaning and significance to them. Not everyone will wish to have their experiences with dementia described in the same way. Their age, background, culture, language and life experience will influence how they think, feel and talk about dementia.

Listen to what they say, reflect it back to them, and if you’re unsure, ask them politely. We can respect the dignity of each individual just by listening to them and using the language they prefer, whether or not they’re in the room.

Positive or negative language?

Focussing on the negatives of dementia can be a dispiriting experience for people impacted. They already know, and being negative ignores the rest of the person’s life and experience, which goes on even with dementia.

It can be tempting to speak only positively to and about the person affected by dementia. It’s a good instinct. Just be careful not to deny the person their experience or feelings.

Just like any other person, talk to people affected directly or indirectly by dementia sensitively and kindly, and think more about listening than talking.

Talking about dementia

Dementia isn’t one specific disease. Dementia may affect thinking, communication, memory and in some instances behaviour, and/or the ability to perform everyday tasks and in time it will impact on the person’s family, social and working life.

When you’re talking about dementia, use terms like:

• Dementia
• Alzheimer’s disease and other forms of dementia
• a form of dementia
• a type of dementia
• symptoms of dementia.

Some terms to describe dementia are now seen as negative or offensive. They include:

• dementing illness
• demented
• affliction
• senile or senility
• going on a journey.

Talking about people with dementia

People with dementia are people. But often they’re spoken about as if they’re a case or a diagnosis.

So when you’re talking about a person with dementia, use terms like:

• a person/people with dementia
• a person/people living with dementia
• a person/people with a diagnosis of dementia
• a person/people with a living experience of dementia.

Avoid terms that are negative, derogatory or patronising, like:

• sufferer
• victim
• demented person
• dementing illness
• dements
• afflicted
• offenders, absconders or perpetrators
• patient (except in specific medical situations)
• subject
• vacant dement
• faded away, empty shell or not all there 
• disappearing 
• empty shell
• losing him/her or someone who has lost their mind
• he/she’s an attention seeker
• inmates (referring to people with dementia in care facilities)
• an onion with the layers peeling away
• well-meaning but patronising terms delightfully dotty, away with the fairies, got a kangaroo loose in the back paddock, a couple of cents short.

Talking about families, friends and carers of people living with dementia

Only a person caring for someone with dementia can understand what it is like. You can respect that by using sensitive, emotionally neutral language.

When you’re describing someone who is caring for a person with dementia in a non-professional capacity, use terms like:

• living alongside someone who has dementia
• living with/caring for/supporting a person who has dementia
• living with/caring for/supporting a person with a diagnosis of dementia
• living with the impact of dementia.
• family member(s)
• person supporting someone living with dementia
• wife/husband/partner
• child/son/daughter
• parent
• friend 
• carer, care partner or care-giver (note: some people like to be referred to as a carer, and some don’t. Listen to how they describe themselves, and if you’re not sure, ask politely.)

When you’re describing the impact of the caring role on someone providing care for a person with dementia, use terms like:

• the impact of supporting someone with dementia 
• the effects of supporting someone with dementia.

Avoid emotive, negative terms like: 

• carer burden 
• burden of caring.

Talking about dementia in people under 65 

Around seven per cent of all people with dementia are under the age of 65. The term to describe this is younger onset dementia. 

Avoid the term pre-senile dementia, which is inaccurate and offensive.

Talking about the impacts of dementia 

The symptoms of dementia will be different for everyone, depending on the cause of the dementia and its progression. It will therefore affect people’s lives in different ways.

When you’re talking about the impacts of dementia, use accurate terms like: 

• life-changing 
• stressful.

Avoid negative, disempowering terms like:

• hopeless 
• unbearable 
• impossible 
• tragic 
• devastating 
• painful. 

Talking about the symptoms of dementia 

While there are some symptoms that most people living with dementia will experience, the nature and severity of symptoms can also be very different for each person, and change over time. 

When you’re talking generally about dementia symptoms:

• describe the symptom itself: memory loss, change in mood or behaviour, word finding problems
• describe its effect: trouble communicating, disturbed sleep.

Behavioural and psychological symptoms 

Dementia often affects someone’s behaviour or emotional state. In many cases, these changes are an expression of some need or sensation that the person with dementia is experiencing — frustration, pain, boredom, loneliness, confusion — that they are not able to communicate verbally.

When you’re talking generally about the behavioural and psychological symptoms of dementia, use terms like: 

• changed behaviour
• responsive behaviours
• expressions of unmet need 
• behavioural and psychological symptoms of dementia (in a clinical context).

Avoid morally weighted terms or derogatory terms like: 

• behaviour(s) of concern 
• challenging behaviours 
• difficult behaviours. 
• difficult 
• aggressor 
• wanderer 
• obstructive 
• wetter 
• poor feeder 
• vocaliser
• sexual disinhibitor 
• nocturnal 
• screamer 
• violent offender.

Talking about dementia in research or in a medical context 

When you’re talking about dementia in research or in a medical context, use terms like: 

• dementia as a condition 
• a person/people with dementia 
• a person/people living with dementia 
• a person/people with a diagnosis of dementia 
• a participant (if in a research trial). 

Avoid inaccurate or dehumanising terms like: 

• illness 
• disease (unless speaking about a type of dementia such as Alzheimer’s disease) 
• subject 
• case 
• PWD or PLWD (as an abbreviation for a person with dementia) 
• PLWYOD (as an abbreviation for a person with younger onset dementia).